ANA Discussion Forum
Archive => Archives => Topic started by: Captain Deb on July 13, 2006, 08:48:06 am
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Grettings PBW crew and fellow AN survivors!!
Well, your dear Captain has finally gone to visit the Headache Wizard in the far land of Greensboro, NC a 2 1/2 hour sail from my homeport. He works his magic in a headache specialty clinic. I was wary at first cuz he had a nice tie on instead o' bein' smeared with mud and paint and feathers. He was very nice and polite and told me I was probably having cluster headaches (google 'em, they're really nasty buggers, way worse than migraines) as a result of "surgical insult." Well, I know none o' them nice docs at House MEANT to insult me but hey, **it happens.
He waved his shaman stick over me and gave me a script for Neurontin and, get this, told me I would have to give myself SHOTS for the bad ones. I've been using Imitrex auto inject for the really bad ones. I shoot myself up with a stat-dose pen, which is quite easy, a little gadget that ya hold on your thigh and push a button. Well, the geniuses at the Imitrex headquarters only make it in 6 mg doses and the Wizard only wants me to use 2 mgs, so I gotta use a syringe and a bottle and jab myself.
Now, I can hear alla you guys go EEEEEWWWWWW!!!! But if I use it this way, I can use it way more often. Gonna practice first on an orange or a watermelon or something, any suggestions!? I'm gonna hafta start wearing skirts instead o' these here pirate knickers tucked into boots I always wear, so I can shoot up in public.
Next step--I go back in a week to get trigger point injections--lots of 'em, he sez! Yuck! I sez. More needles! I'm a'startin' ter feel like a pincushion!
Well, anyhow, he thinks he can make me better, he sez. Great, I sez! Better is good. Sure would like ta have a little more freedom than havin' ta be near my bunk all the time and able ta pillage and plunder a little more often.
My wing is healing right up and I can type again with my right finger and left full hand. Should be arm wrestling with Dr. LLLUURVE again over galley duty in no time.
Well, my right wing is givin' out now--too much typin'. Can't post quite as often as I used to (every hour) cuz of damaged wing, but I can still LURK!! Special Greetin's to Dale, Gennysmom, Kim and Mtngal--all recoverin' from bein "insulted." Hope you all have an uneventful recovery and get back on your feet REAL SOON!!!
Hugs and big wet ones to all
Capt Deb 8)
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Oh, an' ANOTHER thing!! And this one's the worse!!!
NO MORE CHOCCIE!!!!!
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Or regular coffee. Not a big deal really about the coffee, but the choccie,
Boo
Hoo
Hoo
Hoo
Hoo
Hoooooooooooo :'( :'( :'( :'( :'( :'(
Capt Deb
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Deb:
I am in mourning for you - in fact, I think I will have your chocolate today if you don't mind. Yikes, maybe thats my hot flash problem........caffeine? I do like my chocolate. Naw, must be the stress of SSD.
I needed to give my Dad B12 shots a few years ago. They gave me a gel type pin cusion to practice on. My Dad was most grateful for that.
Best of luck shootin up and I sure hope it works for you.
Kathy
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Capn Deb,
Well, the Wizard sure is going to put you through it! But if it HELPS, hey, go for it. Shooting up, eh? Just be sure you don't add any goodies to the syringe--I mean caffeine or choccie, of course!
So sorry about your arm surgery, but glad you are recovering. I continue to admire your bravery (only a captain has THAT kind). i've been quiet, too, just cause all of this had made me weary.
Hang in there, much luck on the good drugs, er, meds, and keep us posted when you can.
love,
Nan
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So the chocolate triggers the headaches? How about carob?
Glad you are back on the mend and REALLY glad you might have a way to end the headaches!! We want our Captain to get her swash back into her buckle!!
Sue
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Hi Capt Deb,
So sorry to hear about your situation. I hope this doctor does what he says he can do (make you better). If not, then make him walk the plank! You'll be in my prayers, Ann
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Hope you find some relief. The trigger points have helped me a lot -- one day I got 16. The good news is that you can't see the needles. My injections only contain anesthetic, not steroids.
Good luck and keep us posted.
staypoz
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I am so happy to hear that relief may be on its way. My heart goes out to you, I know this has been a long and painful 3 years.
I had to give myself injections and the best thing to practice on is an orange.
So no choccie on the good ship PBW >:(  What is Dr. Luv going to do without your famous choccie cake?
Sending hugs!
cheryl
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Wish ya the best Capt Deb. Sorry to hear you got the head aches. I also take neurontin. 400mg 4 times a day but it dont help me with the head aches..I get a little dizzy from the pill. and talk like a drunk when i am on it ..But that is ok...you take care and god bless
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Hi, I am a member of this Board, but I don't post that often, but I do read it everyday and I just wanted to let you know that I have a friend who has a brain aneurysm and suffers from debilitating headaches and has gone to a headache clinic in the Philadelphia PA area. She has been put on the same drugs that you are referring to and has to give herself injections as well. She said that it took a few weeks but feels alot better and the headaches are so far under control. She has been doing this since the winter and so far so good. I sure hope it works for you. As for giving yourself injections, I went through in-vitro 8 years ago and had to mix my drugs in various vials and give myself injections a few times a day for weeks. I honestly, didn't think I would get through it, but it turned out to be not too bad. My husband was a big help and I now have twin girls that came out of it. So in my case well worth it. I wish you the best and sure hope the new medication works.
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Hi Deb ... I read this and thought of you!!
http://seattletimes.nwsource.com/html/traveloutdoors/2003122826_nwwboating13.html
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What about white choccie? Can ya substitue that? I had to give myself injections for the diabetes...not too bad...do you get a syringe needle that small? Hmmm...I'm thinking I'd be training Dr. Luv to do the hiney ones :-* ;)
hopefully it will help. Feel better....Have you seen the pludering jack movie yet? Twas good...glad our captains teeth don't look like his...EWWWW~ :o
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Hi Deb ... I read this and thought of you!!
http://seattletimes.nwsource.com/html/traveloutdoors/2003122826_nwwboating13.html
What a great article!! Dr. LLUUURRVE and I are currently looking for a place on a large body of water where we can keep a small sailboat. I had just styarted kayaking when I was diagnosed and Dr. L bought himself a fishing kayak this spring. I'd like one of thos sit-on kayaks that doesn't require a lot of balance. Right now I'm battling exertion headaches so I can't be out in the middle of the lake and get a headache!
Anyway back to the subject--I gave myself my first manual Imitrex SHOT the other night! I can hear some of you go EEEEWWWW!!!
Wasn't too bad--actually hurt less than the auto-injector. I numbed a place on my thigh with an icecube first--that helped. The only problem was filling the darn syringe and getting the icecube and all that stuff while my head is pounding. Also the thing isnt very portable--the vials are 6 mg and I'm supposed to use 2 mg. The instructions say "discard unused portion" but I'll be darned if I'm going to throw away 2/3's of the medication I paid for!! The vials have a snap off cap that you can't put back on, so I'm looking for someting to use as a cap.
BUT---it really knocked the headache back without knocking me out like the 6 mg's usually do. I go for my nerve block-triggerpoint injections on Thursday and I've stepped up my Neurontin dose. Hope Laz reads this! Especially about the Imitrex injections!
Capt Deb
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Hi ya Capt deb and others.
Interesting - you are now nominated as the ship's doctor (if the wenches let ya back on board) anyway, I was taking neurontin but changed to Lyrica which is meant to be "an improved version of neurontin) - jury's out on that one!!!!!!
Anyway, i am really interested in the Imitrex injections. I'll do me some research and suggest it to my quck. I saw this high fallutin neurologist the other day at some exhorbitant price and rang him two weeks ago to call me back - I'm still waiting! maybe I gotsto se him and pay for another visit.
I'll email ya fer updates Deb.
cheers
Laz
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Laz-bloke,
Have any of these quacks ever suggested you might be having cluster headaches? My new wizard said I have basically clusters with some migranous components thrown in (like the nausea) You have got to try the Imitrex injections. At 2 mg I can use it up to 4-5 times a week. I was out to dinner with Dr. Love last night and started to have a meltdown after dinner in the restaurant. I snuck off to the loo and gave myself a shot in the thigh (hadta roll me boots down!) and it went away in 5-10 minutes. We were going to see "Pirates of the Caribbean--Dead Man's Chest" and I really didn't want him to take me home crying in the car--usual scenario. We were eating Chinese--maybe MSG in the food?
I stepped my Neurontin up to 1200 mg a day today so hopefully that'll help. I got Thursday for my nerveblock/trigger point injections. Wonder if my whole left head will be all numb?
Capt Deb
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Howdy Capt Deb,
I am rather annoyed at the quackery support I am "not" getting. I will place one more call with this neurologist but don't hold out much luck. I'm using this site for my medical advice!!!!!
I am trying Lyrica but finding that i am moody and headaches are worse. I think I'm going to go back to neurontin. I will talk to me gp about the jab stuff but probably best to speak to a neurosurgeon. I'm still a bit worried about my eyes following a brief encounter with Topomax. got a bit of blurry vission from time to time. I've been to opthomologist but she reckons they are ok and the drug wouldn't have caused the eye issues. Yeah righ - another duck!
You get to the point that you know your body and what affects it and what doesn't.
Laz
here a quack, there a quack, everywhere a quack quack, old feeling Laz had a farm ee i ee i ooooohhhhh
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AAAAAAAAAAAAAAAAAAARRRRRRRRRRRRRRRRRRRRRRRR!!!!!!!!!!!!!!
Well, alla ye Wenches and swashbucklers, Dr. LURve and me gassed up the land yacht and sailed to Greensboro to visit the Headache Wizard yesterday.
Shiver me timbers! I feel like one a them Voo-doo D0lls!!! 25 shots in the head, neck and shoulders! Yikes--I passed out twice--yep, completely blacked out right in the chair! Heck, I ain't never passed out stone-cold sober before! Well, I walked into the office to begin with, with total wonkyhead from the 3 hour ride--1 hour on twisty mountain roads and 2 on a freeway--barf bag at the ready! Gotta get some happy pills for the next visit or something!
He specially shot up my incision area where I gots them little nubby things that they screwed inta my head to reattach my skull flap so my brains wouldn't squirt outta my head.
That place has felt like a too tight ponytail since day one. I gotta tell ya, it don't feel like that no more!!!
The trigger point injections are a mixture of lidocaine and a steroid--the lidocaine left my head and neck completely numb for a while, but most of it seems to have worn off by now. Guess they put that in there so the steroid doesn't burn so bad. I had steroid shots in my elbow with no lidocaine and it got way worse before it got better.
Anyhoo-we'll see what happens! Gave myself 4 Imitrex shots this week--had a whopper of a headache on Wednesday which woke me up at 5:00 AM--those are the WORST!! Very hard to get rid of , even with 2 jabs of Trex.
Hope Laz reads this--we seem to be floatin around in the same headache boat!!
Hugs to all,
Capt Deb 8)
thinkin' of our dear Gennysmom and hopin' sh gets better soon!
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I am SOOOOOOOOOO calling you later!!!!!!!!!!!
xxoxoxoxoxoox
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Deb,
Sounds like you have hooked up with a doc that is attacking your headaches from every angle. I am rooting for you! Hopefully, you will be in control of your headaches, instead of them in control of you soon.
Janet
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Well, alla you Wenches and swashbucklin' blokes, I am 4 days out from the Voo-doo Doll treatment and the neck stiffness has mostly passed and I haven't had a headache yet. Don't know if the Neurontin has kicked in (1200mg and going to 1800 today) or it's the shots, but I don't really care. I think the Neurontin makes me a little loopy (loopier than my normal loopy self) but that should pass, too dontcha think?
I am also a caffeine-free captain now--even t hough I was somewhat limiting my caffeine before. My favorite guilty pleasure was a big cuppa sumatran coffee in the morning--I'm drinking mocha java de-caf now.
Sorry about this thread being all about yours truly, but I hope my experience with the Headache Wizard can help someone suffering from the same post-surgery headaches!
Capt Deb 8)
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ah mon, dees voodoo docotors are de best mon.
Actually Deb, I've had the head pion cushion treatment - twice - did nothing for me.
I have given up Lyrica as a bad joke and gone back to Neurontin. I'm in 900mg per day coz anymore and I think I'd fall asleep at my desk (earlier than I do now). As an expirement - don't ya love the way the docs word things? i am also taking sinequan at night. It's an anti depressant but am taking it for the headache pain - too early to tell yet.
Deb, perhaps we can now call ya Captain Needles? sounds like a Chicago 30's name doesn't it? ;D
Hopefully the headaches stay away for a period of time and its not a "one day wonder"
laz
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How 'bout Captain Pincushion? Hey, I read about the combination of SSRI anti-depressants and Triptans (Imitrex) causing severe reactions of "Seratonin Symdrome" in people. I'm on Cymbalta which is an SSRI and had 4 Imitrex shots last week, however the Imitrex dose is really small. Gonna ask my doc about it. Kinda scarey, cuz some of these reactions have been fatal.
Capt Deb
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Research time again - cheers Capt pincushion - I like it - but too many keys to press. Parrot is much easier to type!
laz
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to the 2 pin-cushions.... :-* :-* :-* :-* :-* :-* :-* :-* :-* :-* :-*
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Hi Capt,
I'm glad you are getting some relief from those nasty headaches.
Hope the witch doctor will keep an eye on you and not let
you get too many holes poked in ya.
Would hate to see our capt with portholes.
Best wishes,
Mtn Gal
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Hey Mtn Gall-
I can't locate your phone #--give me a call! We need to get together and go for a walk--if it ever cools down up here!
Had a weird thing today--really bad searing pain in neck and shoulder area--maybe the injections wearing off? He said they would last anywhere from a week to a month. The idea of gettin' that done to me every two weeks really sucks! I passed out twice while he was givin' me the injections and I had calmed my head down for an hour first (3 hr drive--1/3 on twisty mountain roads!) AND he has no more afternoon appts till October, so I gotta get up at zero-dark-thirty and have Dr. Love drive me there. Yikes!
Capt Deb 8)
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Well, mateys, the elbow doc has given me the OK to pick up a paintbrush again!
I tried to get the Headache Wizard to give me some Valium to take for the 3 hour car ride down there on Friday, but all he'd give me was Meclizine. Jeez--even my dentist gives me Valium for a major appointment. Guess this doc has never had to have 25 shots in the head before. Very distressing. I just want to not care WHAT he does! The more out of it the better for that ordeal!
Capt Deb 8)
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Oh capt Deb, Oh Capt Deb,
a pincushion ye be,
a sight that sore eyes would not want to see
We wish you well for your long journey there
and hope that the doc is not a grizzly bear.
for these here bears have long and sharp claws
like doctors who speak with crooked jaws
they like to operate on ye women of the sea
coz after all they need to pay for their golf membership fee
It will be easier the second time round
but beware coz it will cost ya lots of pounds.
jeesh, better not quit my day job!
Laz
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Laz,
I am deeply, deeply moved by your lovely sentiment! :-* Send me some Aussie Valium! 5 or 6 will do.
Capt Deb 8)
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Capt Deb:
Mind you, my trigger points are without steroids, but I have been taking them for 6 or 7 months now and have learned some things from my experience. I don't know how they position you when they give you the injections, but I am usually seated with my neck on a pillow on an exam table. I periodically ask to take a breather and raise my head. It helps mightily with any queasiness and stiffness. I have also been encouraged to gently exercise my muscles so that the anesthetic reaches where it needs to go. I have also put ice packs on my neck/shoulders if they've missed the muscle and might get a bruise.
Hang in there. I had some shots today and they are making a difference for me. Hope they do the same for you.
staypoz
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Staypoz--
How often do you go for the triggerpoint treatment and are these injections cumulative?
Capt Deb
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Capt Deb: I started going twice a week and now try to go every other week. If I am having a really bad day they will try to squeeze me in. I started out getting 12-16 shots per treatment and the number has really dwindled. There has been a real difference in the suppleness of my neck and shoulder muscles since I started having the shots and I am able to turn my head from side-to-side when I wasn't able to with much ease before. They have also done some work on my scar (I had sub-occipital) where the skin was really tight. The shots haven't cured me of the headaches, but they have been a great help along with my nerve blocks, massage therapy and self-hypnosis. I am able to do a lot more this summer than I was last, so something's working!!!
Staypoz
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Not sure if I could put up with being a pin cushion for ever. Right at this moment, I am confined to a life time of Neurontin until I meet Dr Frankenstein to get a head transplant!
laz
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I keep hearing about nerve blacks--what are they?
Capt Deb
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So Crew, I just squoze out a buncha paint onta my palette and am gonna try to get back inta the swing o' things. After 2 months outta work cuz of headaches and arm problems (surgery) I'm gonna try to get back to it. Got the Buffett on the Radio (radiomargaritaville--free on your 'puter--no commercials)and a Boston Cooler than Dr Luuuurrrrve made me, at the ready.
Mt headaches have improved a bit, but haven't really done much of the stuff that triggers 'em. No major meltdown or brainwreck in 4 weeks! Truth will be told once I'm back in the studio tacklin' a 6 foot canvas (paintin' canvas not sailin canvas)
Thanks so much for all your support this past 8 weeks, you guys RAWK
Big Wet Smooches!
Capt Deb 8)
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Well, I'm off again for more pin cushion treatment by the Headche Wizard. Ouch, Ouch, OUCH!!!! This time I'm armed with a big ole Atavan, so I don't hafta make him stop 3/4 of the way through my treatment. Hopefully I won't pass out again either! I better write down everything I need to ask/tell him so I don't forget. I'm also wearing something piratey for strength--I've accumulated quite a bit it seems. Sox, jewelry, tank tops. My puffy shirt is dirty. (Chocolate stains) Can't wear the big hat--it gets in the way and I don't want him to commit me, just cure these dang brainwrecks!!!! >:(
For newbies to this thread, I am getting "trigger point injections" for my relentless post-op (3 1/2 year) headaches--a combination fo local anesthetic and steroid. He hits me about 20-25 times in the neck, shoulder and head area, paying particular attention to the occipital area and the area around my incision. I think they seem to help alot--my use of injectable Imitrex has diminished by about 30% after the last go'round.
Gotta run--I'll post when I get back--6 hr round trip!
Capt Deb 8)
the Pincushion Voodoo Doll Queen!!
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DAMMMMMMMM---you are so BRAVE!!!!
I hope those treatments are working. They better. You continue to inspire....
love,
DD
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On ya Capt pin cushion.
Thinking of you (ouch) during your treatment (ouch again). I am very interested in this approach of yours because i am thinking of potentially doing the same. Not sure if I have the ..... to go through with 25-30 needles a pop.
Laz
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This thread is a testament to the reason Deb is our Capt....tough lil cookie you are. Hope you are feeling well and cant wait to see some more of your creative genius(paintings). How I wish I could come spend some time with you in your studio...maybe some of the skilzzzzzzzz would rub off on me. ;)
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AAAAAAAAAAAAAAARRRRRRRRRRRRRRRR!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
Actually tollerated 20 or so shots today--thank you mr Atavan!! Giggled all the way through it! had my head leaned over the table with a full view of silly pirate sox, The pinkie ones with the patterend rogerettes and bows. (remindes me to work on the tats for the covention, Gennysmom!!!Well, Dr. Love poured me in the car and I slept all the way home, don't remember getting out of the car, slept through dinner and at 1200 mindight, I'm wide AWAKE!!! Been messin on the puter and it keeps crappin out on me--Bad server, Bad!! HW says I'm making good progress and he's very pleased. I told him of my fatigue problem and he suggested timing my Nerontin doses differently and I said HEY! i'm lucky if I can remember to take the stuff at all, much take it at certain times, but Ill give it a shot--set up some alarm clocks (that I can' hear!) I'm making an appointment with an audiologist--been almost 4 years , to check the only ear I have left. Got another credit card to pay more med bills. When I get my disability, three 1/2 years retroactive, I'll be able to pay three credit card off and mayby go to dinner and that's it. I think the creditcard companies are in cahoots with disability as thats how we have to live when we can't work and are self-employed >:( >:( >:( >:( >:(They just put us off, give us more credit cards, put us off more, more cards and pretty sure we're debt free and they have their money all back . What a scam!!
Think I'll try to go to bed now--Thank got for those little Ambien Pills!
Capt Deb 8)
Voo Doo Doll Pincushin Princess :o :o :o
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Captain Deb,
You must become one with the needles, the needles are your friend. Embrace them.
In all seriousness, I pray that they work for you.
Thanks for the morning humor, I needed it.
Amylynn