ANA Discussion Forum
Archive => Archives => Topic started by: Captain Deb on May 24, 2006, 04:01:14 pm
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OK, Y'al
l--I just got back from seeing my neurologist today. He's finally--after three years given a name (maybe) to these flippin' headaches. "Hemicrania Continua"--means just what it says--one side of your head hurts all the time. Says they probably are part the migraines I get fairly frequently.
I've been having to control the daily ones with fairly regular use of hydrocodone, especially since I've increased my activity level. He's trying me on Indocin 3x daily for a while as a diagnostic tool--apparently these suckers are totally responsive to Indomethacin--at least as long as my stomach holds out! I had some nasty tummy problems last year which I have been controlling with Aciphex and never taking any meds on an empty stomach.
Anybody elso been diagnosed with this? I think it's the last resort label they give to folks who have non-stop headaches with no apparant physical reason (like a CSF leak or hydrocephalus)
I looked it up in my headache book and it says they are related to migraines.They kick in real bad with exertion--like right after my work-out I usually feel like there's an elephant sitting on my head. I gotta go right home and lay down afterward.
I have a good deal of the symptoms which I have attributed to facial nerve surgery--runny nose, eye tearing and redness, sand-in-the-eye-feeling, headaches that worsen with exertion. Severe episodes mimic migraines for symptoms.
Well, lets hope this stuff works! I'd like to get off the narcotics for good! I want to go hiking! I want better balance! I want to windsurf again!
Laz--have you talked to your doc about this one? You and me be in the same boat and I ain't talkin' about the PBW!
Capt Deb 8)
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Capt,
If I remember correctly, indomethicine is a powerful anti-inflamatory. I was prescribed with it once, for lower back problems, but couldn't tolerate it. It gave me odd nightmares with heart palpatations.
I hope you're able to tolerate it, and that it helps. I know headaches can be debilitating.
Regards,
Rob
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Ah, Vicodin, my friend. Never leave home without it. I swear that stuff could cure anything. But not something to take regularly.
Is there a causal relationship with the AN and surgery? Or could this have been a preexisting condition?
My aunt has been plagued with debilitating headaches for most of her adult life. She once went on a 2+ week migraine bender and was within inches of commiting suicide. I commend all of you who deal with that, I have first hand experience with how horrible it is...she's been on another one and we were worried that she might not make it on our trip.
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I had a few bad headaches pre-diagnosis, but not a non-stop headache. When I sought help for my "stuffy ear" I said , "by the way, I think I'm having migraines" which lead to the MRI.
Capt Deb
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Deb, lets hope that since they have a name for it, albeit a "last resort" name, that they can follow some regimen and get you back functioning properly again. I feel so bad sometimes when I see the struggle you and others are having, and I'm already feeling so good. Of course, being a manly man, I just want to fix everything, unfortunately I don't have a medical degree.
By the way...I finished two pastel paintings since I talked with you and they are fairly well aligned:-) Nothing leaning that I didn't want to lean. Now if only I was a real artist like you<grin>
Road Trip D
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Hemicrania continua is a very specific type of headache rather than a general catch all category. To diagnosis it you give an Indomethacin trial. It works on this type of headache but not on others. I have taken it for the last year and it really works. Google, "Goadsby and hemicrania continua" and you should find some research papers. I have previously posted some info on hemicrania continua because that is what my neurologist told me I had and she was right about the Indomethacin. I wondered why no one else on this site seemed to be familiar with it since so many were seeking treatment for headaches. Indomethacin can be hard on you stomach but I take it with food and I am not bothered by it. It isn't addictive and it doesn't zap your energy. I am also in a Botox study where I get injections in the muscles that tighten up. (neck, shoulders, back and sides of head). The goal is to reduce the need for the Indomethacin. I am down to 2 Indomethacin a day. (25mgs each). ÂÂ
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Thanks Deb and Janet
I've been following this thread in hopes of discovering something new for my daughter who has headaches and hasn't responed to the topamax and all of the others drugs. I'm forwarding the name of the drug to her. It'd be so great if it work for her.
Thanks for sharing!!!
raydean
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Hemicrania continua is a very specific type of headache rather than a general catch all category. To diagnosis it you give an Indomethacin trial. It works on this type of headache but not on others. I have taken it for the last year and it really works. Google, "Goadsby and hemicrania continua" and you should find some research papers. I have previously posted some info on hemicrania continua because that is what my neurologist told me I had and she was right about the Indomethacin. I wondered why no one else on this site seemed to be familiar with it since so many were seeking treatment for headaches. Indomethacin can be hard on you stomach but I take it with food and I am not bothered by it. It isn't addictive and it doesn't zap your energy. I am also in a Botox study where I get injections in the muscles that tighten up. (neck, shoulders, back and sides of head). The goal is to reduce the need for the Indomethacin. I am down to 2 Indomethacin a day. (25mgs each).ÂÂ
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Janet--were you diagnosed with this pre- or post- treatment?
My doc has started me on the Indomethacin trial--150 mg a day, and I'm trying hard to protect my stomach. I sure hope this works! I've been researching a bit and I seem to have a lot of the symptoms--exertion headaches and the runny nose thing in particular. Wonder why he waited for 3 years before giving me this trial? Thanks for the link!
Capt Deb
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Capt Deb,
I had occasional migraine-like headaches pre-op behind my eye but nothing compared to the post-op headaches. Two weeks after surgery, I woke up in the middle of the night with severe sharp pain in the back of my head. Since then, I would get dull pain behind my eye with involuntary neck tension and periodic severe sharp pain in the back of my head, always on one side. This was a daily event. Now, the Indomethacin stops the sharp pain and the Botox stops the muscle tension and dull headache. If I don't take the Indomethacin, I'll start having sharp pains within 12 hours.
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Capt Deb,
I guess I didn't really answer your question when as to when I was diagnosed. I was diagnosised one year after my AN surgery. I finally went to a neurologist associated with a large medical center who gave me a diagnosis within 5 minutes. I had seen other doctors, including a general neurologist who were of no help.
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OMG me, too! two weeks post op! Dr. Friedman said I'd had a migraine. I also had the same pre-op symptoms! I can't believe I've been going through this crap for 3 1/2 years--I feel really hopeful! I just read (kind of) that Goadsby article and found myself all over it--particularly the agitation I go through during my "migraines" and the runny nose and eye teringI get in the morning after I eat or brush my teeth. If there's a way I can get back to being my active athletic self (windsurf, hike, sail, kayak)--well, I'm starting to BAWL!!!!
Capt Deb 8)
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Janet,
How long did it take for the Indomethacine to kick in? I'm sitting here with a mild tummy ache--but since this is the only way to diagnose these things I'm willing to put up with it--gonna call my gastroenterwatzis today and see what he can have me do to tolerate the next 2 weeks. Already taking aciphex, but my gut is already 1/2 shot from 3 1/2 years of pain meds!
I'd love to talk with you one on one--message me and we'll exchange phone numbers if that's OK.
Capt Deb 8)
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Capt Deb,
If I remember correctly, it only took a couple of days before I noticed it was working. I started with a total of 150mg a day. I took 25mg 3 times during the day (with meals) and 75mg extended release at betime. I sent you my phone # via e-mail through the site. I'll resend it to you directly to your email.
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I'm so bloody excited about there being light at the end of the tunnel for me I can hardly stand it. It's weird to think that I really want to have this disease! I'm sitting here with a yucky-feeling tummy, and a little head tightness, but my nose didn't run this morning for QUITE as long as it usually does! YAHOO!
Capt Deb
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Flurbiprofen
In 2001, we heard from a couple of patients troubled by severe and chronic headaches post-surgery. They both came across a medication that helped them very much. The medicine is called Flurbiprofen. One patient reports that the drug was originally an arthritis medication. it's an older drug.
I'n not a doctor but this drug may help also.
Deb I sure hope it works for you and again thank you for sharing
Raydean
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The doc has me on Indomethacine as a diagnostic tool. If it works, I have hemicrania continua or paroxysmal hemicrania. If it doesn't, I have a form of cluster headache. Both are forms of Trigeminal Autonomic Cephalgia. A paper I'm trying to read describes these as "an excrutiating syndrome and is probably one of the most painful conditions known to humans. Female patients describe each attack as being worse than childbirth." :P Lucky me!
Captain Deb 8)
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OK folks--my hemicrania is continuing! Woke up feeling like someone was poking an icepick into the back of my head! Janet, my new best friend, gave me a link to a medical paper on these and it said most migraine meds don't work on these cuz they aren't really migraines, but injectable sumatriptan(Imitrex) works pretty well. My doc had given me a sample a while ago and I stumbled to the head and shot myself up--OUCH!!! I had decided I was NOT going to have a repeat of the crap I went through 2 weeks ago with one of these whoppers. Well, the stuff worked pretty well, actually and I went back to bed for a couple hours. Janet called me mid-morning and we talked about 45 minutes. Boy--we have so many of the same symptoms--finally found someone who's been going though the same stuff!
Anyway that's my story and............you know
Gotta get off the puter--my head's startin' ta hurt--don't know if I'll be on the call tonight--I think I need ta be in bed!
Love you all
Capt Deb 8)
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I'm sorry Deb!!! Hope you get better soon!!!
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Deb,
See if you can get your doses of Indomethacin changed to 25mg three times a day and 75mg extended release at bedtime. Take your first morning dose 1/2 hour before you get out of bed with a little food left at the bedside. I think the Indomethacin has worn off when you need it the most, when getting out of bed. It might be that you need more even coverage and a whole night is too long a time between doses. Or, you could try and take your last 50mg dose of the day as late as you can and your first dose in the morning as I mentioned above.
When you get this last headache under control, regroup and see if more even coverage helps. Use the warm pack when your medication is starting to wear off and your new medication hasn't taken effect. Sounds like a lot of work but I honestly feel you can get these headaches under control.
Call me anytime and I can call you right back to save you the phone charge if you have any questions.
Also, I have been reading some info on melatonin to help with hemicrania continua. They claim that the moleculer structure is the same as Indomethacin. I don't know if it works but there seems to be more and more info out there on the subject.
Janet
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Janet,
Hi. Are you perchance a doctor or a pharmacologist? i only ask this as i was wondering from your assured take this do that post that you might be. I haven't been reading all, so forgive me that I don't know your history re An.
perhaps you were only relating your own experience...
In any case, sounds like Deb needs some help for her head pain. I figure her doctors might have an answer? So Deb what do they say?
be well,
Windsong
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Hi windsong.
I'm a RN (labor & delivery, recovery room and the operating room) and I had an AN removed 2 years ago followed by severe daily headaches. Even though I had lots of experience with helping patients with pain control and have given birth to 6 of my own kids, nothing prepared me for the severity of pain of AN headaches. I never knew such pain existed. The lack of answers regarding AN headaches and how to treat them was distressing. Headache specialists and neurosurgeons don't seem communicate much. I still can't find any headache studies that address AN headache patients as a unique population. I really felt I was on my own. Finally found a headache neurologist that gave me a diagnosis of hemicrania continua which is not specific to AN patients. Still not many answers to the cause only that Indomethacin works for this type of headache. She was the first and only doctor that gave me useful information on treating the headaches.ÂÂ
I started Indomethacin 1 year ago and found that tweeking the times really helped. Morning was really a problem because it wears off before you wake up unless you take the extended release that works longer. I get Botox injections in the back of my head, shoulders and neck and that allows me to go longer between doses so I don't need the extended release anymore. I'd hate to see Deb give up on the trial if timing was an issue. I hope it works for her. Pain control is an art.
I am thankful for the treatment but still looking for a cure. As always, I appreciate any info anybody finds out there.
Janet
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Thanks Janet. You're quite right about how headaches can be a real puzzle, not only what kind they are but how to manage them. I had a period of bad ones post treatment with fsr (about 3 months later) and didn't really get fast action to handle them myself, but fortunately mine settled down and if i get any now(cross fingers) tylenol works. You are right about not too much being out there about An headaches. That's another reason why sharing and posting on a forum like this is so very helpful. And I hope Deb finds relief soon.
Best wishes,
Windsong
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AAAAAAAAAAAAAARRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRR!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
Hemicrania continua continued. I'm going to forward Janet's post to my Neuro doc if I can figger out how! Woke up with severe pulsatile tinitus and an elephant sitting on my head. I had to get up and make myself something to eat before I took the Indomethacine, which really got it going. (Dr. Loves gone fishin') Weepy eye and runny nose, too. Trying to wean myself offa the hydrocodone, too, so I can see if the Indomethacine is really working--not yet apparantly! Pain bad so I took one (hydrocodone).
This paper I'm reading says cluster attacks can be triggered by exposure to oil-based paints! I use odorless (expensive) mediums and brushcleaners and you really can't smell anything in my studio, but that doesn't mean there are no fumes I think--maybe I need to go back to being a watercolorist! Paper is from jnnp.bmjjournals.com and is titled "Trigeminal Autonomic Cephalgias" by Manjit and Goadsby if you are interested. I sure appreciate all the support I get here--I love you all!
Capt Deb
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Boy, when you google it, there's a lot of stuff out there about this. Very interesting. I emailed my aunt a couple of the posts, but she was very non-specific as to what she was taking. Her neurologist has her exercising for an hour 6-7 days a week, and she said that that, as well as adjusting her medication is helping. I'm still not sure what she has as she just calls them migraines, but I can tell they're much more than that. I hope to talk to her more when we're on our trip. I'm sure glad that I don't get many migraines anymore, and I hope my surgery doesn't trigger anything.
Good luck in getting it regulated Deb!!! I hope you can keep your oils....although I really like painting in watercolor too. For the last 10 or so years though, I've been working with chalk pastels. I love the way they layer.
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Gee Captain Deb,
Did ya hurt the elephant????????????
My sympathy, empathy and other thy's go out to ya. If the anti inflams help ya, I reckon ya should talk to ya neuro who flung dung about cortizone injections in ya head - its ok, they work for parrots as well. The injections don't hurt coz they give ya anaesthetic first (very small sting). Might help ya.
Either that or the good ship PBW goes round the little island called Australia and docks a bit north west at Papua New Giuinea. The local 60 minutes did a thing on this cannibal tribe there. This 6 year old boys parents died suddenly, now they think he's the devil so they gunnu kill and then eat him (warts and all). One way to get reid of the headache!
Laz
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Woke up with another whomping headache >:(--will try to take the Indomethacine just before bed this time. Went back to bed after getting up and eating a bowl of shredded wheat and takin' pill. Slept till 2:30! Good thing it's a holiday or I'd feel like a lazy slug! Gettin' a little perturbed with not goin' out and havin' fun outside like most folks. I was doing a lot better a few months ago, but was taking a few pain meds, too. The literature I've read on both cluster and paroxysal headache say they can be remittant, which means they go into remission for a few days to a few months.
No pain meds today, only 1 yesterday and 1/2 the day before! Yay me! I gotta get rid of the every morning headache so I can go back to the gym in the morning(and not have to take pain med afterward!)
This stuff is irritating my tummy badly--I'll probably pack on a few pounds cuz my tummy hurts when it's empty and I don't think chips and my favorite chipotle salsa is the thing to eat--thank God for shredded wheat!
Anyway, thanks for all your support, Wenches and Blokes! Gunnu (great Lazword)call my doc tomorrow about the timed release Indomethacrap. Phyll called this AM and I was kinda out of it and coudln't talk--she's such a positive force of nature!!
Talk to ya later
Love, Capt Deb 8)
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Gee Captain Deb,
Did ya hurt the elephant????????????
My sympathy, empathy and other thy's go out to ya. If the anti inflams help ya, I reckon ya should talk to ya neuro who flung dung about cortizone injections in ya head - its ok, they work for parrots as well. The injections don't hurt coz they give ya anaesthetic first (very small sting). Might help ya.
Either that or the good ship PBW goes round the little island called Australia and docks a bit north west at Papua New Giuinea. The local 60 minutes did a thing on this cannibal tribe there. This 6 year old boys parents died suddenly, now they think he's the devil so they gunnu kill and then eat him (warts and all). One way to get reid of the headache!
Laz
Well, I'm ready to flippin' filet and fry up this flippin' elephant that insists on takin' it's flippin' NAPS on my flippin' cranium! AAAAAAARRRRRRRRRRR!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
I have had several cortizone injections in trigger points in my neck/shoulder are, but the doc said he don't do heads! Do they have headhunters there? My last headache I begged Dr. Love to cut off my head, but he wouldn't do it!
Capt Deb 8)
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I feel real bad about all the headaches I have been reading about on this board. As if the trauma of a tumor isn't bad enough, dealing with balance, deafness, facial paralysis etc... then on top of it, pain? For years? My heart goes out to all of you. Kathy
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after deb posted a reply to a question i made.. i googled the term and as i read it .. i felt this was like a light on my situation.. i am calling my neuro tomorrow.. as i was anyway.. they started me on medrin/midrin (spelling?) i sleep, pain comes back, take pill. sleep more... nice way to live.. so i tend to just suffer thru the week..
but this last 2 weeks have been horrid...
starts with severe tinnitus, stiff neck, pulsing pain in the right temple (AN Side), feeling of swollen eye.. nausea, sensitivty to light & sound.. severe balance problems.. similar to that i had week of the surgery... and depending on severity.. stumbling and falling.. have missed 3 days of work in last 2 weeks from these damn things.. i hate living on meds.. i did it for 11 months post surgery but feel i am heading back...
still having bad facial ticks (i feel . no one says they see) i find if i take whatever pain med i am on, with skelaxin (muslce relaxer) and HOT shower on neck.. helps some.. but limits life a bit.. so i am hoping the meds listed here on thie discussion work.. kepping fingers crossed
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Hey el capitarnee,
I'm surprised they don't give you cortizone in the head - ask other neuro who dee whatsits.
I find that ice packs relieve the tension a little but it gets too cold.
Laz
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Wow Deb. I'm sitting here trying not to cry from relief. (It sucks to cry at work) I was going to post a question this morning because I have been having awful sypmtoms the last 2 weeks and after reading this I may have found some help. I have never had headaches and really had no headache problems after surgery-back to work after 4 weeks, etc. Now for the last 2 weeks, I have had awful pain in my head, behind my ear, it feels like the bones in the right side of my face weigh 100 lbs and every thing is stiff and sore. The neurosurgeon won't help, the walk in clinic is scared to death to do anything and I am so tired of just surviving through the day. One Dr. did give me Hydrocodone but thats just putting me to sleep.
Thanks for giving me hope again. Maybe I dont' have to just survive. One last symptom to ask, when i push on my cheek bone or around my eye(surgery side) it hurts, also if I grab a hold of my cheek (thumb in mouth) and pull my cheek away from my teeth, it hurts like crazy. Any one else?
Thanks this site makes my day!
Mary
1.9cm House Ear Clinic
06/24/05
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Another AM headache/neck pain/tearing!  Called my doc today about changing the Indomethicine dosage like Janet suggested. Also called my disability atty about recent diagnosis--haven't been able to work for a week. Still very difficult for self-employed people to get disability. Still having tummy problems from the Indo--if I can't tolerate it-I'm up the creek without a paddle and you know which creek!
Maxxrg-glad to hear you are pursuing the TAC possibility--treatment is very different from migraines.
Capt Deb
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Mary- those symptoms sound very much like ones I've read about in the TAC article by Matharu and Goadsby in the JNNP.
http://jnnp.bmjjournals.com/cgi/reprint/72/suppl_2/ii19? maxtoshow=&HITS=10&hits=10&RESULTFORMAT=&author1=Matharu&andorexactfulltext=and&searchid=1&FIRSTINDEX=0&sortspec=relevance&resourcetype=HWCIT
click on this link and download and print this extensive atricle on TACs. As you read it open a link to some kind of medican dictionary, cuz it's hard to decipher all the jargon!
My neurosurgeon was not much help either-no wonder because headaches aren't his specialty. They just get rid of the tumors. Suggest you see a headache specialist at a major medical center--that's my next step after battling these buggers for 3 years. I had an appt at Duke, but they actually CANCELLED it on me, but I had an appt with an AN specialist, not a headache specialist--you would think they would have referred me to a headache Dr dontcha? Needless to say I'm pretty pissed at my neurologist for letting me go this long without referring me to a headache specialst at a major medical center!!
Capt Deb
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Thank you(x10). Sometimes I feel all alone and a little crazy. I'm calling my G.P. this morning and tell her what you have told me. Maybe I can get some relief. Ok, the comment about oil paints worries me. I have been painting with watercolors and was going to branch back to oils, I had done some years ago but switched to water because painting time became limited with kids and the rest of life. What are you going to do. Should i wait?
Thanks Deb!!!!!!!!
Mary
1.9cm House Ear Clinic
May 24, 2006
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Creativity is important! If you use oils, thin them with Gamblin products--Gamsol for thinner and Galkyd or Galkyd lite for mediums. Also Turpenoid Natural for brush cleaning. All are totally odor-less, you'd never know there was a painting studio in this house!
Capt Deb
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neuro was off today.. left info with his nurse.. will hear tomorrow.. am hoping he agrees and is willing to try.. he is really very open and caring.. so i should be ok.
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Came across a forum for cluster headaches, too http://www.clusterheadaches.com Very interesting info.
Capt Deb
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Thx Capt Deb, I'll look into it.
One gets rather desparate at times and willing to explore / try anything.
Laz
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I have gotten the most relief from the head and neck pain (I don't like to call it a headache because that doesn't begin to describe what it feels like!) from a nerve block and non-steroidal trigger point injections. I have had a series of twice weekly injections for the past two months, sometimes as many as 15 shots at a time, and they have really helped with the neck spasms and the referred pain in the forehead. What neither of these treatments has given me much relief from, however, are what I call the "brainwrecks", those excruciating, debilitating throbbing and shooting pains that seem to emanate from the incision site. My urologist, of all people, asked me recently if I had considered hypnosis. He gave me a referral to a psychiatrist to whom he refers patients with intractable bladder pain. I got an appointment with this doctor, was tested for my hypnotizability, and am scheduled for what is called a "full induction" in a couple of weeks. This doctor has had patients who can't be anesthetized, undergo major surgery while hypnotized. If I understood him correctly, the pain will still be there but my perception of the pain will be altered. I've done botox, accupuncture, physical therapy, reiki, massage and all have done some good. I'm hoping this will give me another, non-drug tool to help me manage the pain.
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well spoke to neuro today..based on what i sent him and said about hemicrania continua.. he would not prescribe the indicated drug.. said was too strong.. and said try motrin first and see what happens..
OMG here we go again.. isnt this considdered valid excuse to string up your dr... argggg well tonite is nite 1.. will try motrin so i can say HAH didnt work...
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Maxxrg
Maybe it's time to get a new neurologist! Based upon my research, an Indomethacine trial is standard procedure to rule out both episodic and chronic paroxysmal headache and hemicrania continua. Is you NRO (my abbreviation for neurologist which is too hard to type) at a major medical center and does she/he specialise in headaches?
There is an OTC that is used for cluster headaches as well--the brainwrecks accompied by tearing, runny nose and agitation--it's called melatonin--my bad brainwrecks (great word) seemed to abate a little when I started taking 9 mg at bedtime.
Capt Deb 8)
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i will check into it.. no he is not at major hospital.. although he is on verge of retirement..
but i am going to email my NRO who did the surgery @ Mass General (Harvard Medical) and see his opinion and if he will prescribe
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Do they have a headache clinic there? See if the neurosurgeon can refer you. NS's are great at poppin' 'em out, but the headache specialists are who we should be seeing now.
I know how you are living--headache to headache--can't plan anything-scared to go anywhere--it SUCKS!!! I seem to have gotten a little better than I was 2 years ago, but the little ones are annoying and the big ones--well I feel like I'm gonna DIE and then I'm afraid I WON'T!
Capt Deb 8)
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Great, just GREAT!
Now I got tummyachia continua to go with the hemicrania continua. Almost rather have the headache than this continuous nasuea/bellyache. Yucky-poo-poo! Welll....not really.
Haven't had a headache since I started the Indomethacine. Gotta apt with the gastoenterwatzis Monday--$50 to tell me I have an irritated stomach and take aciphex--which I'm already doing! Well--DUH! Won't represcribe me what he prescribed me last year with the Verapamil.
With all of the $ I've spent on this stupid head I coulda had:
My teeth veneered (sailing accident 30 years ago!)
A personal trainer for a year
A new kayak
A Caribbean vacation for a month on a sailboat with Dr. Love
A buncha money in my IRA
AAAAAAARRRRRRRRRRRRRRRRRRRRRRRRRRRRRRGGGGGGGGGGGGGHHHHHHHHHH!
(Argh is the frustration growl--AAAAARRR is the Wench Call!)
Capt Deb 8)
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CALLING DR FRANKENSTEIN
Oh Captain Deb,
My sympathy goes to you.
Laz
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Hi Cap'n Deb et al. I finally got an appt to see a neurologist next week. Using Deb's description of an elephant standing on the side of my head, feeling like my eyeball was going to pop out and death was knocking at the door, seemed to convince someone. Actually I think they just got tired of seeing me at the walk-in clinic. Say the words "I've had a a brain tumor" at the walk-in clinc and they throw some painkillers at you and scurry away like ants. No one wants to touch you.
Deb-you need to write a book about the post surgery life. I think it should be called "So now what?" Post surgery is like they hand you a baby hippo and say go home, raise this in your tiny house and don't let it die. We aren't going to give you any information on what's going to happen unless you show up on our doorstep with tears in your eyes(and money in your pocket) then we will only answer one question at a time. You must suffer greatly before we help with the next problem.>:( Ok' I'm done venting. Maybe it's the elephant still sitting on my head that warps my perspective. Must make it 1 more week.
Thanks again.
Mary
1.9cm House Ear Clinic
May 24, 2006
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There has just got to be a common thread with these headaches--wish someone would gather us all up, put us in the spa-rehab center somewhere and study us for a while. Even though the frequency of the really bad ones has decreased, the intensity hasn't--if anything it's increased. The pain is absolutely unbelievable--I shake and cry and groan for about 2 hours! I haven't had to go through one alone yet, but my husband is planning to rehab a house this summer in Charlotte--2 hrs away, and I'm terrified to get one of these by myself--guess I'll have to get my brother or a friend to come over in the middle of the night to make sure I'm not tempted to off myself! Not having much luck with the Indo trial, which means I could be having cluster headaches--see http://clusterheadaches.com
Capt Deb 8)
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Cap'n Deb. I'm for the spa study but can you imagine all the lounge chairs filled with writhing, headache suffering people but I bet we could still laugh and I would certainly have a margarita in my hand and a mini-umbrella behind my ear. Seriously, I wonder if anyone has ever dealt with the scar tissue that now makes a home in our heads. I saw my 1 year MRI last week and the Dr. was pointing out the scar tissue (which is normal-he said) but what if all the nerves start working again and they run into this scar tissue and go crazy. Could this be part of the headache issue? I'm going to ask next week.
I sure hope you find someone to stay with you. It is so scary to be alone. I'm doing the single Mom thing and trying to keep the stiff upper-lip thing going for the kids but sometimes when you come running home from work early, run into the bedroom and dive under the covers because one more minute standing up-right will do you in, they figure it out. I do have my parents in town so they help a lot.
You can't off yourself anyway unless you've figured out where your'a gonna go when the volcano blows and even then you have to wait til the headache goes away so you arrive with a smile.
Mary
1.9cm House Ear Clinic
May 24, 2005
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The nerve entrapment thing is something I spoke to my pain doctor about. There is a plastic surgeon at Georgetown U. who has helped headache patients by releasing the nerves from the scar tissue, but we are not sure if he has ever treated anyone with post-AN headaches. I'm sure there would be a battery of tests to undergo to find out if the nerves are, in fact, entrapped.
I think the bottom line is that no one really knows what causes these headaches, nor is there one method of treating them, or one method that is going to work for everyone. I think it's important for us to push to get doctors to (1) be more explicit about this potential, particular side affect. ("Headache" was the last in a long list I was given and it was dismissed as being controllable with OTC medications.) We also need to be push for more research on the causes and treatments for this.
I'm lucky to have found a practice of pain doctors who are willing to try everything that is at their disposal, are open to suggestions from me and other doctors, and admit they don't know everything.
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I gotta agree about seeing a headache specialist. There are alot of brilliant neurologists out there that do great things with stroke, MS and seizure patients but most of them don't seem to be focused on headache treatment. The first general neurologist I went to was hailed in "Seattle Magazine" as the top neurologist in Seattle. He is a great doc but even he recommended that I see a headache specialist when his initial treatment didn't work!
Capt Deb, I hope your stomach issues are resolved. It's like dominos, one thing leads to another.
Stapoz, I think studying AN headaches could provide info to the general headache population. We are such a small group within a small group that unless it would help a significant # of people it probably won't be done.  Maybe it would provide insight for the general headache population. I tried e-mailing Dr Goadsby whose name pops up on a lot of TAC research but it was undeliverable. There are a significant # of us on this site that might spark some interest. You are so right about pushing the issue.
I know what you mean about the neck tension and referred forehead pain. I have had Botox injected in the muscles that react to headaches and it has helped me.  It lasts for 3 months. It doesn't eliminate the stabbing electrical pains in the back of the head. Daily use of Indomethacin minimizes the stabbing pains for me.  I can't drink any alcohol and constantly watch my posture and that my head is straight.  What I wouldn't give for a margarita or two..... and get some R&R from this constant battle. I am way better off than I was a year ago.
There is a person on this site who was scheduled to have surgery to see if the nerve could be released. I wonder if she had the surgery and if it resolved the headaches.
Janet
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No kidding about surgeons the letting people know about the post-op headaches. This has blindsided me, literally. I have humming along in my merry post-op world, and wham. I'm so thankful that Deb and everyone else has started this thread. It gives so many good insights. I would think this would be a great research topic for some Doctor somewhere. This site alone would provide many starting places.
At least my work place has been supportive, though my fellow workers were asking about medical marjunia (it's legal in Montana and I'm pretty sure they were just joking as they are all structural engineers). I said they would have to get their own. Now my musician friends...hmmmm...
Janet, please don't tell me I have to give up the margarita. Summer wouldn't be the same. But I do have to admit I would give just about anything (except my kids) to get some relief from the elephant pain in my head.
Mary
1.9cm House Ear Clinic
May 24, 2005
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A physical therapist who worked on my neck for several months thought nerve entrapment might be an issue and he worked on the back of my head/neck area with a vengeance and I thought he helped me alot--but a year later, I'm back in the same boat. I had Middle fossa surgical approach, which, from my understanding, isn't near the occipital nerve. However, the trigeminal nerve is in that general area and from the anatomical images I've studied, the pain is located right THERE. The thing branches out to your temple and above the ear, which is where it hurts the worst during the brainwrecks. I'll try to find an image and post it. I don't know if the neck pain influences the headache, or the headache influences the neck pain as they seem to occurr simultaneously.
The descriptions of the TAC headaches are so spot on--with the eye tearing and runny nose and extreme agitation.
We just need to take charge of our own healthcare and keep researching. I'm getting good at reading medical papers, but what really pisses me off is that most really good sites want to charge a monthly fee to access them. One more way the American Medical System tries to screw us! Not the British, though. Anyone has acess to the bmjournals, like it should be! AAAAAAAAAARRRRRRRRRRGGGGGGGGH!
Capt Deb 8)
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I go along with all that. Deb, we need ya to Captain the good ship PBW, there is no way out for you kiddo. We'll have to get young Batty's toys to work on ya.
On a more serious note, I see pain specialist number 5 next Friday - hopefully he'll have something in his arsenal (had to be careful writing that one!)
Laz
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Mary: medical Marijuana....good idea. I hate the smell of it though so I'd have to get it ordered in the pill form. (I didn't know it came in the pill form until I had to administer it to a patient of mine a couple of months ago). Only one problem though for, for those of us fighting the weight problem, the MUNCHIES!
Kathleen
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When I lived in the Islands, I smoked enough "medical marijuana" to last me for two lifetimes! De ganja be everywhere, mon! Quit about 18 years ago!! Not an option for dis wench! :oHEY I woke up headache free for the first time in a week! Days not over yet--only 3 Lortabs all week! Also drinking a nightly de-tox tea to try to flush some of these noxious toxins outta me. But then again, one of my triggers, low barometric pressure- is on the rise.
Capt Deb 8)
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Yea Deb!! No headache!!! Did you get the timed release stuff? Is that working??? Missed you on the call last night!!!!!
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Apparantly the TR is working--I know, I missed you ,too. I was exhausted--this Indomethacine makes me very fatigued during the day. I've been taking 4 hour daily naps and going to be early. I hate this drug--my stomach is killing me and I've gained 8 lbs cuz I have to keep eating so my tummy quits hurting. Yucky-yucky-poo-poo-poo!!!!
Capt Deb 8)
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Here is a link to a midical illustration of the trigeminal nerve:
http://images.google.com/imgres?imgurl=http://medinfo.ufl.edu/year1/trigem/homeimg.jpg&imgrefurl=http://medinfo.ufl.edu/year1/trigem/&h=200&w=177&sz=14&tbnid=Bvp3dZlcgRRqxM:&tbnh=99&tbnw=87&hl=en&start=10&prev=/images%3Fq%3Dtrigeminal%2Bnerve%26svnum%3D10%26hl%3Den%26lr%3D%26sa%3DG
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Hi Deb,
Sorry to hear about your continuing headaches!
Have you tried the drug "Fioricet" or "Butalbital/ APAP / Caffeine TB" ? This drug is designed specifically to stop headaches. It was given to me because I had bad reactions wirh narcotics, especiially, Morphine. In fact, to this day if I take even an Acetaminophen with Codiene (tylenol #3) I get a ripping headache - and I am not prone to headaches. Interestingly enough, when I went in the hospital for an upper endoscopy, I was given Demeral and a tranquilizer, which also rendered me with the same type of headache that I would get from the other narcotics. Have you considered the possibility that you may be experiencing an adverse reaction to the meds they have you on?
Also, I think you should contact the doctors that performed the surgery on you at House. They will take an active and concerned role in getting to the bottom of this. Tell them about my experience if you have to. Just get this taken care of ASAP so you won't be plagued
with those headaches any longer and you can move on to living a quality and fun life again.
Do a Google search on the drug I told you about for more info.
Take care, Paul
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Test
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Mr Cat--
(my last reply on this post crashed somehow)
I was put on fioricet, a barbituate first thing post op for headaches, but it did nothing for the brainwrecks. My doc also carefully monitors my narc use as we are well aware of analgesic rebound headaches. I went off all meds for 2 months last summer just to see what was up and continued to have the brainwrecks every 2-3 weeks. Also lots of exertion headaches as well. At least with the narcs, I'm able to work a couple days a week.
Capt Deb
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Capt Deb,
I have been reading your posts and it sounds like your headaches are improving but your stomach is acting up. You also had mentioned that you were tired from the Indomethacin. Did the fatique start after you started the OTC Melatonin or before? Could the fatigue be from the Melatonin since it is used to help people sleep? Just a thought. Also, did you check with your doctor and pharmacist whether you could combine Melatonin and Indomethacin? I had read that the 2 chemical structures were similar and was wondering if it could be a problem. I was curious about the Melatonin and haven't have a chance to talk to my doctor about it. I am not sure I can try it because of the study that I am on. I definately don't want to get kicked out of the Botox study!
Janet
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I'd been taking melatonin for quite a while before the Indo trial
You know, I'd really like to quit taking EVERYTHING and see what my body does--I think I'm totally overmedicated and would like to see how my head reacts to good food, excercise and fresh air and lots of water!
Going to the gastrowatzis today--willing to put the Indo trial on hold to let my tummy heal.
Capt Deb
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I hear ya. The first year after surgery, I was determined not to chase a cure for these headaches and time would be the answer. Then, I got so tired of feeling like crap that I decided go on the offensive and attack these headaches. Sometimes the battle is exhausting. Even though I feel a lot better than the first year, I still have to keep a constant assault with meds and lifestyle.
The one R&R is the comfort I get knowing that there are others out there that understand how life changing this whole condition is and that they too are searching and sharing experiences and info. People must have felt very alone before these sites where available.
Janet
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AMEN!
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OY!
Anyone ever have an Indomethacin withdrawal headache? Had to discontinue use cuz it wrecked my stomach. The WORST Up all night, pounding headache with pulsatile tinitus--gotten better enuff to post a HEY to everybody!
Catch ya later
Capt Deb
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Laz stands on desk at work, gets stared at by colleagues, chants a plenty to oogle, boogle etc, doesn't do any whirlies coz might fall off the desk. Heads a flingin (does wonders for my headaches too)!, chants a ravin.
Oh Capt Deb, a surprise do thou need,
perhaps a huff and a puff
of that magical weed,
will bring you some peace and rest,
with no pain to atest.
That mighty headache jumbie
is cruel as can be,
we all need to chant,
for our Queen Bee
So lets all get up on our desks
and pound and pound our chests
to the beat of the world wide web,
for our wonderful Captain Deb,
The weed as we know,
is not really for us,
but if pain it does relieve
then what the heck,
better than a pain in the neck.
Now the writer you may say
is putting his foot astray,
coz the weed he has never puffed
as it does cause people to huff huff.
So for our Captain Deb,
we hope ya feel better
coz we all luv ya dearly
and ya give joy to as all
so get better quickly
so ya can stand and stand tall.
Laz
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Yikes! Laz-bloke--I do appreciate the ant-jumbie chant! I don't think medical "M" is legal in NC and my hubby works for the state, so probably not a good idea. BELIEVE me if it was legal I'd consider it!
Dr. Love's Birthday is today (he's 25 and quite the lil' love muffin) and I baked him a flippin' cake with a flippin' ragin headache and stomachache last night and iced it this mornin'. Just as I finished, flippin' Martha comes on with "how to ice the perfect cake" Well, mine came out a lil' heeled over to the left, and kinda crumby (with crumbs, not taste wise, my chocolate cake RAWKS) but that's LLLLUUUUURRRRRVE for ya! Bakin' someone a flippin' cake with a flippin' headache.
The two meds I can take to be able to work a little and have a somewhat normal life have eaten through my stomach lining, so I guess it's back to square one---the hemicrania continues.......................................
Love to alla ye wenches and blokes
Capt Deb
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Happy Birthday Dr. Love ;D
Keeping you in my prayers capt. Deb and sending you a hug
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Hey Deb!
Been reading your posts on this thread and was wondering if you take nexxium or any other meds that help your stomach. I take the nexium and still, at times, have problems with certain meds, but maybe that is the one med you should be on! I had a perforated ulcer sewn up in emergency surgery about 7 years ago and have been on some type of stomach meds ever since. As soon as I stop, I start having problems.
Just a thought :/
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Oh yeah--been taking Aciphex and when that runs out ($$$) I start on Nexium--also on some yucky liquid crapola--hard to time alla these meds--take this one hour before eating--take that 3 hours after eating--don't these folks know I eat all the time--Jeeez!
Have had a very very rough day--stomach cramps, headache. Thanks or all your well wishes-got to sit outside for a little while-tried to pull a few weeds, but bending over tweaked my tummy
Ya know I missed another day of work,too. I figured it out that I have missed at least 600 days of work in the past 3 1/2 years since my surgery. I pay myself $300 a day when I price a painting which covers my materials, too. So it's about $250 a day x 600= $210,000. There goes the money I was going to use to build my studio on my already- paid-for beautiful lot next to our house. Still actively pursuing disability, which, if you are college-educated and self-employed, is just about impossible to get unless you are comatose.
Oh well, the day sucked, but the choccie cake RAWKED!
Capt Deb
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Okey dokey guys,
I had a really good session with a pain management neuroligist today - who actually said that he reads this web site - scary stuff!
Anyway, apart from a number of discussions which I will elaborate on another time. He has suggested that i try a combo (burger, fries and drink) of neurontin and topomax. The topomax has a few side effects - one of which is - weight loss! Ok, i thought, I can handle that one.
He also indicated that 40% of med applications for headaches fail and to stay away from surgery to relieve tension.
He said that i will notice a change from the drug in about a week's time.
I'll keep ya posted.
Laz
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Yikes! I tried Topamax twice! Had severe psych side effects--couldn't stop crying. Doc hasn't put me on neurontin yet, but I emailed him the AN post-trreat headache thread and asked him to give me some sorta extended relief pain med till I can get to my local pain clinic--gonna try some mechanical stuff--trigger-point injections or Botox. Ins won't cover medical Botox--a*****es! HEY! I have a headache--I'm allowed to cuss! But I have a huge deductible and the insurance co. won't let me upgrade. I want to give them more money every month and they won't let me--go figger. Maybe they can Botox summa these Shar-pei lines I got from too much fun in the sun! ;) (I'm not gonna tell ya how old that there picture of me is!!!)
Feelin' a little better today--tummy is healin up nice and I got my pain meds back for now--sure is nice not to have a low-grade headache with an occaisional thunderclap crashin' through my skull.
I'm dyin' for some West Indian food!!! I think I'll bribe my doc with a painting to tell my insurance co. that I need a house in the Caribbean to be cured. With what they paid for my surgery plus what I paid for all the subsequent issues, plus $300 a day for 600 days of missed work, I coulda hadda flippin' MANSION right next to Kenny's in Peter Bay on St. John! Well, at least a nice lot on the East End. Dr. Love and I had one all picked out and BOOM! AN time. Still having a hard time with acceptance right now--thanks for letting me vent.
Laz, you are such a dear guy--I hope you find your Magic Bullet soon! I guess that goes for all of you family on the forum whether it's headaches, facial paralysis or balance issues or just plain FUNKINESS!
Love and Hugs,
Capt Deb 8)
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OMG, I hear ya about the $$ and meds. I am currently going to (actually was going to) PT for my shoulder. I am not big on PT other than, show me what to do and I'll do it, I don't need to see you 2-3X a week and fork over $20 a pop especially since I was laid off. Topomax didn't really help me too much but I tried too many things with it to get relief, I never really stayed on it continually and I also never lost any weight (one side effect I could deal with)! I'm so glad you guys are always here cuz nobody wants to hear any of this stuff!
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Static,
Every time I see one of your posts I just want to smoosh my face up against the 'puter screen and nuzzle that adorable fuzzy puppy! :-* :-* :-* :-* I have missed you!
Capt Deb 8)
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Deb,
She's really getting big! She loves people and gives everyone kisses and sometimes even bites! she's still teeting. She gets up and cries every morning around 4:00, I let her out to pee, then when we come in, instead of going back to her crate she runs right for my room, jumps into bed and proceeds to go back to sleep! I love her!!! I missed you to Deb!
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OK ya wanna hear something weird? I think talking is giving me headaches, or triggering them to intensify. Since surgery, I have had an aversion to talking on the phone, going to social events and have basically become a little anti-social. More than 15 minutes on the phone gives me a screaming headache. Could the movement of my jaw be triggering some of the pain I get on the side of my head? I had middle fossa and they did cut through a lot of the muscles that work your mouth. I also have two not-so-little bumps where the little titanium "platlets" are, that get very tender. Could there be some irritation there when I use my jaw muscles? I'm already convinced that there is some kind of nerve wiring problem in the side of my head cuz when I scratch my temple, I feel it near the back of my head. My incision area hurts all the time--hence the diagnosis of hemicrania continua from my neurologist, but I think it's mechanical rather than systemic.
Any thoughts? I seem to get better medical info here than I do from my own doctors. Experience is a great teacher. Botox here I come!
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Deb,
The soreness around the titanium platlets does sound like things are being irratated. Hopefully, this will improve with time. As far as the "wiring", just about any surgery on the head can give wierd little ticklers to areas away from the incision site. I once had a small skin problem removed in the temple area, by moh's surgery, and I still get ticklers on the back of my head on that side occasionally.
Regards,
Rob
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OK ya wanna hear something weird? I think talking is giving me headaches, or triggering them to intensify. Since surgery, I have had an aversion to talking on the phone, going to social events and have basically become a little anti-social. More than 15 minutes on the phone gives me a screaming headache. Could the movement of my jaw be triggering some of the pain I get on the side of my head? I had middle fossa and they did cut through a lot of the muscles that work your mouth. I also have two not-so-little bumps where the little titanium "platlets" are, that get very tender. Could there be some irritation there when I use my jaw muscles? I'm already convinced that there is some kind of nerve wiring problem in the side of my head cuz when I scratch my temple, I feel it near the back of my head. My incision area hurts all the time--hence the diagnosis of hemicrania continua from my neurologist, but I think it's mechanical rather than systemic.
Any thoughts? I seem to get better medical info here than I do from my own doctors. Experience is a great teacher. Botox here I come!
I ain't calling you no more! Pffffft! >:(
*walks off in a huff!*
;)
xoxo
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Okey dokey Deb,
I went to see neurologist number 347 last week and he told me that the lower the incision behind the ear, the more responsive it is to anti inflams. My incision is high above the ear - great!. He also told me that there is a 40% fail rate for meds to treat the kinda headaches we get - great!
He prescribed me a drug which goes by the name of topomax here. It's actually - topiramate. This is another anti seisure / migrane drug but apparantly a "big momma". Anyway, I was told that one of the side effects can be glaucoma - 1 in 100,000 can be affected coz it interacts with a gene and whammo. Well, aftrer the second day, I noticed my eyes watering and getting sore so stopped it.
Back to the drawing board! He reckons he has a plan B so I'll call him and find out what that is?
Laz
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My Mom, both Uncles and my first cousin all have glaucoma controlled by meds, duuuh, ya thinks maybe I got THAT gene? Doc didn't even question my family history on that one. I'm sure you read my post on how wacky topiramate made me.
Phyll, I'm willing to put up with the headache just to get to talk to you. I hadda dream last night that I came to visit you and you had this little baby and you wanted me to take care of it for you while you went off and did something--very weird!
Capt Deb
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To clarify this is a non AN response.ÂÂ
Ok guys, I don't share this to often so I guess this is a big outing for me. But prior to facial reconstruction I had terrible headaches that would not repond well to medication. To over simpify I was born with to much upper jaw, not enough lower jaw ( completely different condition from normal braces issues) and by the time I hit the big 30 I was in a great deal of pain from TMJ. It was as simple as trying to walk with one leg longer then the other. Over time the joints break down due to the imbalance. One of the things that triggered the headaches were
Talking to much
Eating crunchy/chewy food or
chewing gum
Stress also played a factor
While I was waiting Insurance approval (a three year wait and study of patience) I was told to talk as little as possible, and was placed on a soft food diet. I was offered pain medication, but refused due to the long term effects and the fact that my children were ages 4, 6 & 9 at the time. Thankfully I did receive coverage and had the surgery, pretty complicated for back then (early 1980's) Once I healed i never had headaches to that level again. The headache were enough to keep me down
So Deb, yes you may be onto something regarding talking and headaches. Have you talked to your dentist about TMJ
Almost got me in trouble once. Chet was head of the safety committee where he worked and we had to attend all of the safety award dinners usually sitting at the head table. Well I couldn'nt eat the salad,, couldn't chew the meat, but the wine sure tasted good!!!! oops. The boss thought I was sweet and would pour me more and Chet ever so kindly kepted on passing the wine to the other end of the table.ÂÂ
On a personal note long time list serve members know my 'passion" regarding doctor's experience and helping those with serious outcome. It isn't only because of Chet's AN journey, it's also because i know what it's like to be different and all of the feelings and emotions that go with it. I also know because of this that it's important to never give up hope. At 18 I was told nothing could be done. At 25 years of age I heard rumors that there was this new surgery that maybe could help, and by the time I was in my early 30's it was a reality.
That's enough about me.
Hugs to all
Raydean
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Raydean, Thanks for your inspirational story of your solution to your jaw problems. I especially loved the loved the part of "never having headaches to that level again"! Seems like there is some similarity between the triggers of your TMJ headaches and Captain Deb's headaches.
Laz, That makes sense what your doctor said about the anti-inflammatories working better on the lower occipital area. Indomethacin works well for me and my incision and pain are not above my ear. Captain Deb's incision is higher and doesn't seem to work for her. Your doctor scores a point!
I am wondering if Captain Deb's pain is coming from the trigeminal nerve because of the triggers and area of pain. I think mine is coming from the occipital nerve. It seems like the wiring is screwed up like you mentioned Deb. My incision is always tender but my headaches are on the opposite side. Maybe my problem is low enough in the brain stem to affect the opposite side? You guys got me going again. I'd love to figure this out!
Janet
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Raydean, thank you SOOOOOOOOO much for sharing this with us! Like you, I'm a TMJ sufferer (diagnoses back in the early 80's), use to drive my ex-spouse (ew!) crazy with my teeth grinding in my sleep. Have night guard that I wear on occassion. My headaches from TMJ aren't nearly like you had and have been fortunate that I haven't needed further treatment for it... but I can't thank you enough for sharing this part of your life with us.
You know how much I value and respect your friendship. I am honored to call you a friend and thrilled that you shared this with us!
xoxo to you all!
Phyl
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The jaw can play many tricks with headaches. My daughter had braces and jaw widening - yukko it was. She also grinds her teeth at night causing headaxches. She wears a plate to bed that is lijke a mouthguard and the heradaches have gone.
Laz
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Well, the hemicrania continues.............................
Hadta do a bunch of errands today. Traffic, driving, sometimes, like today I drive around in circles due to not being able to change lanes when I need to and NO left turns. I find I walk around with a headache that would send most folks runnin' for the ibuprophen and a bed. :-[ I just walk (or drive) around with it! I just tolerate it til I can't tolerate it one more second, then I get out the meds. Sent my neuro a big old email about the Indomethacine trial and how it tore my stomache up and gave me a raging morning headache, but no response so far.That was a week ago. Haven't had a brainwreck in 3-4 weeks, which, I have to keep telling myself, is progress.
GAD--is Captain Deb fishing for a little sympathy or WHAT!
My drivers licence expired May 12 and I don't know if I hafta take a driving test to renew it. Hope they don't make me do a left turns!
8)
PS REMEMBER--Three lefts DO make a right! ;D
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Hiya,
I thought I would try this wonder drug, too, but my doctor's nurse just said my pharmacy doesn't have it, that there's a nationwide shortage! How do you like that!?
I really wanted to try it....oh well.
Hope you're feeling better, Capn.
Nan
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Oh Captain Deb,
Where is the magic wand????
I really do understand what you are going through. I had a relatively good weekend as far as the head is concerned. My eyes are still sore from the topomax (I'm sureit was that). I might go for another eye pressure test. Don't want to ghet glaucoma on top of everything else.
You have just about tried every drug avaliable so I guess you havta grab the good moments and fully utilise them. With the bad ones - maybe get a puching bag so you can vent your frustrations on it.
laz
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I was rereading some of the post and it seems like "Staypoz" was getting some headache relief from injections at a pain clinic. Deb, Maybe this treatment is worth trying since your stomach won't tolerate some of the medications. Have you tried any kind of injections? From what I can tell, headache neurologists tend to prescribe medications (including Botox) while pain clinic doctors (mostly anesthesiologists) favor nerve blocks and steroid injections. Is this what most of you have found as well?
I can't get my prescription filled for Indomethacin. My pharmacist said that 3 companies used to make it and now only 1 is making it. Luckily, I still have some, but am wondering if I will run out before it is available. I have some extended release left over but would hate to increase my daily dose just because I couldn't get the smaller dose.
A while ago I heard from someone who after trying many types of medication finally found relief from Depakote. I remember her saying that Neurontin didn't help her but this did. I never tried it because of the weight gain side effect and I still had other options to try. She helped me realize that you just need to keep trying and don't give up.
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WELL POO!!
Looks like I gotta go under the knife again! Thanks to social security disability who told me I needed to find another way to make a living while in bed with a headache. Yeah RIGHT! About all I could do was knit cuz standin' up and moving around gave me a whopping headache. Dr. Love bought me a buncha yarn and I started knitting up these fabulous scarves to sell and NOW I gotta have flippin'surgery on my flippin' ARM cuz I shredded my flippin' lateral epycondile tendon while knitting on pain meds. Been having cortisone shots for a year and a half and now my elbow doc says time to slice and dice and hope for the best. Yet another roundabout side effect, like my ulcer, of this AN.
I wont be able to paint for 2 months. Yikes! Whattam I gonna do for fun! I guess I better learn to type left-handed! My AN was left-sided too, which makes me even gimpier on the left. I am a little worried about being in that 5% who lose some function in the hand. I really like my doc, though, who is a sailor and PBW material as well :o
My surgery is next Tues and I think it's outpatient. Just hope I don't have a brainwreck afterwards! Or before! Or during!
So thanks ALOT you Social Security Disability drones! Now my entire career is in jeopardy from your wonderful advice!! >:(
YOU SUCK!
Well, you guys here, You are the BEST! I really don't know how I'd live my day to day life without a place to vent, share, and be silly!
Love and Kissies to You All!
Capt Deb 8)
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Geez Deb you definitely need a turn of events!!! Some good news for a change!
We will keep you in our thoughts and prayers.
Lynn
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Hiya,
I thought I would try this wonder drug, too, but my doctor's nurse just said my pharmacy doesn't have it, that there's a nationwide shortage! How do you like that!?
I really wanted to try it....oh well.
Hope you're feeling better, Capn.
Nan
Nan, what wonder drug is that?
Capt Deb 8)
PS You bin a little quiet, wench! How's yer Ragin' Whizzies? Better each day, I hope!
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I was rereading some of the post and it seems like "Staypoz" was getting some headache relief from injections at a pain clinic. Deb, Maybe this treatment is worth trying since your stomach won't tolerate some of the medications. Have you tried any kind of injections? From what I can tell, headache neurologists tend to prescribe medications (including Botox) while pain clinic doctors (mostly anesthesiologists) favor nerve blocks and steroid injections. Is this what most of you have found as well?
I can't get my prescription filled for Indomethacin. My pharmacist said that 3 companies used to make it and now only 1 is making it. Luckily, I still have some, but am wondering if I will run out before it is available. I have some extended release left over but would hate to increase my daily dose just because I couldn't get the smaller dose.
A while ago I heard from someone who after trying many types of medication finally found relief from Depakote. I remember her saying that Neurontin didn't help her but this did. I never tried it because of the weight gain side effect and I still had other options to try. She helped me realize that you just need to keep trying and don't give up.
Have you tried any of the online pharmacies? You have a script.
Capt Deb
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Capn, yea, been kinda quiet. Feeling kinda manic-depressive these days. keep hoping for a miracle, and guess that's dumb. Still dizzy as ever, that drug is Indomycethin (sp?) I have the long-acting kind waiting for me at pharmacy, along the lines of trying migraine meds.
After reading Chelsea and Chris' story, I know I should be grateful.
Sorry about the surgery for you. GEEZZZZZ!!! What next! You hang in there.
Nan
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Sorry to hear about your needing another operation. As Gilda Radner used to say, "It's always something!"
Re Janet's comments about my finding relief from nerve blocks. They do make a difference. I haven't had a brain wreck in 10 days. I saw my neurosurgeon last week and he suggested I see yet another headache doctor. So, I picked up the book this particular headache doctor has written and he actually talks about post-accoustic neuroma headaches in it. If I understand what I read, his theory is that they are a form of migraine and should be treated as such, but from all the posts I've read, those meds don't always work for everyone. He further says that the kinds of nerve block I am getting, while providing relief, aren't the solution. I am staying with the pain doc for now and away from the headache guy. I also had my "full induction" hypnotherapy session this week. After just a few days of practice, I can say it's helping too. Whatever works. . .  ÂÂ
Good luck!
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Sorry to hear about your needing another operation. As Gilda Radner used to say, "It's always something!"
Re Janet's comments about my finding relief from nerve blocks. They do make a difference. I haven't had a brain wreck in 10 days. I saw my neurosurgeon last week and he suggested I see yet another headache doctor. So, I picked up the book this particular headache doctor has written and he actually talks about post-accoustic neuroma headaches in it. If I understand what I read, his theory is that they are a form of migraine and should be treated as such, but from all the posts I've read, those meds don't always work for everyone. He further says that the kinds of nerve block I am getting, while providing relief, aren't the solution. I am staying with the pain doc for now and away from the headache guy. I also had my "full induction" hypnotherapy session this week. After just a few days of practice, I can say it's helping too. Whatever works. . .  ÂÂ
Good luck!
Staypoz,
Name of Doc? Name of Book? Where to get it?
Capt Deb
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[AAAAAAAAARRRRRRRRRRRRRRR Capt Deb,
Laz stands on desk and cries for our captain Deb,
She is a wonder woman who cannot thread,
Dazed and confused she may just be,
but a bright and fun person is she
Get ye better soon young Captain Deb,
coz the good ship PBW sets sail for the magical med,
Oh joy it is to have found Captain Deb,
for a fun loving person I have not read
So here comes the jumbie chant,
wet t-shirt in hand.
oooooooooooooooooooeeeeeeeeeeeeeeeeeeeeeeeeee
dipy di do
Laz gets really strange looks so in fear of being put away, gets down from desk and gets on with work.
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I am sorry to hear you are having surgery Capt. Deb. Keeping you in my prayers and sending you a hug.
Ursa, you take good care of mommy!
Hugs,
Cheryl
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Capt Deb, The book is Heal Your Headache by Dr. David Buchholz. I have never been evaluated by him. I picked up his book at a Books a Million; it's probably available through Amazon. I think he has a pretty clear bias about the cause of pain but if he can help, it's worth checking out. Like I said, I'm sticking with my pain guy for now.
Staypoz
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Deb,
Sorry to hear about your needing another surgery. The orthopedic guy I see for my back wanted me to have surgery but I just refused. Will live with it for now cuz its not life threatening and not constant. It only hurts when I use it :/ Watching "America's Got Talent" right now and hoping for a good laugh. Seems to be the best thing to keep me diverted lately, a good laugh. Hope things work out for you!