ANA Discussion Forum
Archive => Archives => Topic started by: jan pentecost on September 04, 2005, 12:31:00 pm
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I ask you....why does my doctor tell me I shouldn't be having headaches when, in fact...I do. I tried taking Elavil for them...which worked BUT the side effects aren't worth it...weight gain...water retention. And my headaches are more during the day and the Elavil puts me to sleep...I go in on the 15th and I know what he'll say...I shouldn't be having them. Or the more I think about it, I'll get stressed resulting in a higher degree of headache. I want to know why I have them in the first place.
It is like a adoc telling a female she doesn't have menstrual cramps...okay.
I read more and more here that I am not alone. We own a business and being off work is not an alternative. Sometimes Excederine Migrane doesn't cut it. Help...any advice and direction will be most appreciated.
I am now 4 months post-op and the headaces really started about 1 month out.
jan
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You might ask your doctor about anti seizure medications for your headaches. These medications are being prescribed for AN patients with headaches. A friend of mine in Seattle told me that the medication "gave her, her life back. She's off the couch and doing things again. Made a world of difference for her."
Best to you
Raydean
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I take an anti-seizure medication and Indomethecin (anti-inflammatory). I am 17 months post-op. I can finally say my headaches are under control. I am from Seattle. (Not the same person Raydean referred to.) If you are interested in the MD I went to, just give me an e-mail. Janet
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I am 6 years post-op and still struggle with headaches. My surgeon told me the same thing at first - doesn't understand why I have them...shouldn't..etc. It was not until a few years later that he admitted that they are probably from bone dust or scar tissue. Post Op Headaches are COMMON. There is SO MUCH research and papers on the subject. Especially if you had the Retrosigmoid / Sub-Occipital approach.
I had to go to an independent (not associated with the surgeon) nuerologist to finally start getting help with the headaches. They tried me on Elavil first too - FORGET IT. I had all the same side affects - weight gain (20lbs in 2 weeks!), water retention, tired all the time and brain fog (like a zombie!). Also tried - B12 shots, physial therapy, massage...a whole bunch of medications...
Currently I am taking Neurontin (anti-seizure) and Vicoprofen (anti-inflammatory). Although the headaches are not gone - there is a big improvement over what they used to be!
Hope this helps.
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I welcome any more suggestions for dealing with headaches following the retrosigmoid/suboccipital approach. Neurontin disagreed with me so, after three tries I gave it up. Elavil (amitriptyline) made no difference at a very low dose. I am over two years from surgery and have had just a few glorious days with no pain at all. Those days give me renewed hope. Most days in the early morning I take some Feverfew or acetaminophen to reduce the head pain to a point where I can stand it. I sometimes use a hot pack on my neck. The pain often feels like an inner earache in the AN side (now deaf) ear. I also sometimes get relief from Ultraset or Hydrocodone when the Ferverfew and or tylenol do not work. How to find a doctor who acknowledges the reality of this pain? As soon as I am free from it I start functioning at a higher level. As is, I am fearful of planning strenuous days because of the aftermath of pain.
Peanut
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I have had post AN surgery headaches for 3 years. I have discovered that drug related assistance is different for everyone. Neurontin helps me a little, nothing else does. I have tried accupuncture, cortizone, ice packs, lots of different anti inflam's - I sometimes feel like an in house chemist.
I am a little luckier than some others in that my doctors understand (or so they say) about the headaches. A change in specialists has helped too. This one now informs me that the headaches will largely be due to the cutting of the head, the muscles and whatever else they cut. Also, the way the scalp flap is put back - be it tightly or not. Makes sense to me as that area of my head is still tender. I'm guessing that the surgeons were more interested in the tumor rather than the scalp. Options - not a lot. I am going to see a pain management clinic shortly to try and get the mind to alleviate some of the matter.
Larry
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I saw my neurosurgeon last week and we talked about the intense headaches I have been having. My tumor was removed retrosigmoid and my doctor thinks what I am having is muscle pain from the healing process. He prescribed Flexoril (muscle relaxant) that I have been taking only at bedtime and YAHOOOOOOO the headaches have stopped!!! The drawback is I cannot take this during the day because it increases the dizziness. Hope this info helps some of you. Sherry
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Wind 6- I am glad you found something that is helping your headaches!! I had them for quite a while and they can really take over your life. Glad the Flexeril helps!!! luv2teachsped
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Larry and Wind 6,
Have you seen the latest (September 2005) issue of ANA Notes? The Q & A session at the National Symposium in Florida last June featured questions from the audience fielded by doctors William Friedman (Gainesville, FL), moderator, and Patrick Antonelli (Gainesville, FL), Derald Brackmann(House, Los Angeles, CA), and Stephen Lewis (Gainesville, FL), panelists. To the questions why does retrosigmoid surgery cause headaches and what can be done to alleviate these debilitating headaches, Dr. Lewis acknowledged that "they're obviously a very difficult, troublesome and significantly life affecting problem. It depends on the characteristics of the headaches. They can range from simple wound pain, a disruption of the nerve-the cutaneous nerves in the skin-all the way to disruption through fibrous scarring deeper in." He goes on to say that with the retrosigmoid approach "there could have been involvement or division of a nerve called the great occipital nerve, which comes up through the muscles of the neck and supplies the area of the scalp, starts occipitally and radiates forward and gives rise to a characteristic kind of headache and can be exacerbated by palpation of the region. If you push on it, you can really get a bad, bad headache. That can happen with this local scar tissue, if that nerve is working its way to the surface, or may have a neuroma formation itself. There are may ways to treat that, from local medication, anti-inflammatory medications to local injections to steroids and local anesthesia agents to more permanent methods, such as nerve sectioning, freezing, or surgical division of the nerve. It really depends on the exact characteristic of your headache."
Dr. Friedman offers another physiological explanation for the pain and suggests a surgical solution:
"Headaches may be more common after retrosigmoid approach [sic] than after translab. I think the reason is that if you don't reconstruct the area by putting the bone flap back and putting some plastic over the hole, then the dura, the lining of the brain, is in immediate contact not with the skull but overlying muscle. As that scars down, whenever those muscles contract, like whenever you move your head or neck, and the muscle contracts, it pulls on the dura, a pain sensitive structure and that can cause a severe headache. When we do have medically intractable headaches after a retrosigmoid, I encourage patients to think about having a very minor procedure. We open that wound, remove the scar tissue and put a small plastic plate in the bony defect, so that the dura is no longer in contact with the muscle."
Does anyone have any experience with any of the explanations and suggestions for treatment of post-op headaches given by Friedman and Lewis at the AN Symposium?
thanks in advance,
Peanut
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Thanks peanut, I will discuss this issue with relevant specialists next time i see them.
cheers
Larry
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Thanks for the info Peanut. I see my neurosurgeon again in late October. I will ask about this then however, the muscle relaxers are still doing a great job for me. I havent had even a slight headache since I began taking one tablet each night. That has been a wonderful relief as I was not able to even sleep through the pain beforehand. ;D
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I'll be interested to learn what your October appointment yields. Are you taking 10 mg of Flexoril each bedtime? I am starting a course of acupuncture and also have worked up to taking 50mg of tramadol (Ultram) four times a day but still have felt no sure positive results from the tramadol.
Thanks for the input, Sherry. If you show the ANA symposium Q&A on headaches to your neurosurgeon, please let us know the reaction or any added comments.
Peanut
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Hiya Peanut, Yes it is 10mg's at bedtime. I am just a bit concerned tho about the dizziness. I think it may be a bit worse and I am not sure if its the Flexeril or what. So far I believe its an okay trade-off as long as the headaches are gone. :-\
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To all of you out there experiencing headaches and head pain--I can sympathize with you and I hope you are taking care. I am nearly 9 months post-op and am having terrible pain. I had translab surgery (not supposed to experience severe headaches with this surgical approcah--WRONG) and thankfully, my neurosurgeon is willing to work with me on alternatives to counter the pain--I can only be on vicodin or other meds for so long. I already have had to cut back on my running as it bothers and jars my head too much. The pain runs along my incision and also slices into my head. I went to the ER three weeks ago as my doctor thought I was having an aneurism (I was experiencing the worst headache I ever had in my life and throbbing and pain behind my right eye and weakness in my right arm). The CT scan showed nothing and I was diagnosed with having a severe migraine. I thought I only had to "survive" the surgery and I was not prepared for this ongoing pain (I was told I was in the 1-3 percentile of people where severe headaches and pain may be a problem). I will not give up working out (strength training and lighter cardio) because the next thing I know, I will be obese and still dealing with pain. I will keep you posted about what my doctor and I decide upon but I can only hope I will find something. Take care all and thanks for listening!
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Hi, I know how you are feeling...My neurosurgeon kept telling me I was having migraines. The headaches started about a week after surgery and lasted 3 years. They were not migraine. They were cluster headaches. My best response to you is.... if you are not seeing a neurologist, find one. They can help you determine the type of headache you are having. I had to do several things for mine, but mine were not migraine. Mine were cluster headaches and tension headaches. If you want information on how I dealt with them, take a look at my web page at http://hometown.aol.com/clfsong/page/MyAcousticNeuromaStory.htm
It may give you some ideas on where to start. At least I hope so. That's why I did the page. I suffered pretty badly in the beginning, and I found out that I needed to be pro-active to solve the problem. I wish you the best of luck, and feel free to contact me if you have any questions. I'm always glad to help A.N. folks. Must warn you though, don't check e-mail as much. Please put AN in subject line so I know your from the forum.
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hi amn70, my situation is very similar I am 32, a runner (used to be) and also had the sub approach 12 months ago. I was also in the emergency room 2 months ago with similar simptoms and they thought it could be an aneurism. but then they said it must be migraines. I have started acupuncture and it has helped a little. I am seeing my surgeon in two weeks and will let you know what he says maybe it can help us both. I read in another entry that people have had some success with flexoral, have you tried that?
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I had a suboccipital craniectomy six weeks ago for a meningioma next to the brain stem. Since then, I have had horrible headaches every day. I am so afraid that I will be sentenced to living the rest of my life with these terrible headaches, due to the approach of the surgery. What I'm wondering is if I should be pursuing treatment with the neurosurgeon who did my meningioma surgery (who lives five hours from me) or if I need to find a local neurologist to work with on managing this. Does anyone have any suggestions for me?
Thank you.
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I think the reason is that if you don't reconstruct the area by putting the bone flap back and putting some plastic over the hole, then the dura, the lining of the brain, is in immediate contact not with the skull but overlying muscle. As that scars down, whenever those muscles contract, like whenever you move your head or neck, and the muscle contracts, it pulls on the dura, a pain sensitive structure and that can cause a severe headache. When we do have medically intractable headaches after a retrosigmoid, I encourage patients to think about having a very minor procedure. We open that wound, remove the scar tissue and put a small plastic plate in the bony defect, so that the dura is no longer in contact with the muscle."
I had my AN removed at the London Clinic in 2003 by Gerald Brookes by retrosigmoid. They did not put any plate over the hole in the skull. I have severe problems if I do physical work e.g. in the garden, using e.g. a heavy hedge cutter held up to head height. I get severe headaches, and pains in my neck and shoulder. This post is very helpful and makes me think it may help to have this plate inserted, in case this is exacerbating my headaches.
I had an AN of less than 1cm but I suffered total hearing loss, which it would seem was unlucky, and like many others continue years after to suffer very bad tinnitus. Like other members, this is always worse in noisy environments such as supermarkets (with the freezers and air con fans) and restaurants, and in a noisier car. What is worse, is that although I have good hearing in my left ear, if I listen to music on e.g. an MP3 player, it causes a terrible aftermath of tinnitus in my deaf ear - so bad that I have more or less resigned myself to not listening to music except quietly in the background. For a musician that it pretty tiresome and depressing.
Also I have found that certain foods seem to also cause me major problems with dizziness and headaches - cheese, and spinach (the iron??), and any salty foods. I am finding I have to control what I eat far more than I expected, and it does seem salty foods are bad news for me.
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Interesting quote from a surgeon? can you please advise who provided the advice and where they work because I would like to pursue this course of action.
cheers
Larry
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I had read this too in an article quoting Dr. Friedman from Florida - I believe. I’m trying to find out where I read it – it may have been some literature I got from ANA. When I do I'll post the link.
I did ask our neurosurgeon about it and his answer was that in the past they had left the area exposed – which caused a soft spot or dent behind the ear. When folks started asking to have that dent corrected with plastic surgery for cosmetic reasons – they realized that the headaches went away too. It was his practice to always reconstruct that area when doing the RS approach.
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well - i didn't find a link - but I did find the hard copy of the Sept 2005 ANA newletter where Dr. Friedman was quoated just as above - it's on page 6 of the newsletter. There was a question asked specifically about headaches and Dr Lewis and Friedman gave responses. Dr. Lewis suggested some headaches could be attributed to how posterior the incision was made and if the great occipital nerve was involved.
I don't want to sound like I have a clue what I'm talking about - I'm just typing what is in the article. :)
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I also posted a quotation from the ANA Notes of September 2005 on headaches in another headache thread on this forum. I took the statements by Friedman to a doctor I am seeing in an effort to manage and send away these debilitating headaches. He emailed Friedman several weeks ago but has still had no reply. Does anyone know his address or a way to reach him? I am currently trying a different type of acupuncture weekly(I tried another type for about a year) and 150 mg of tramadol (Ultram-two doses of 50mg, two of 25mg) daily. I've had three sessions and so far have, alas, not noted improvement. Neurontin and Amitryptiline are definitely not for me. Have not tried Flexeril. Beyond Feverfew and acetaminophen(Tylenol), I resort to Hydrocodone, but I so wish to get at the cause. The headaches make it nearly impossible to eat, and when bad, often put me to bed. I do often use a hot pack on my neck.
Does anyone know of a person who has had the procedure described by Dr. William Friedman in Florida?
Peanut
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It is in the thread started by janpentecost and my post is dated september 27.
Peanut
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I strongly recommend weekly massage to alleviate headaches.
I am a massage therapist and did not receive regular massage (go figure ) until I started getting headaches every 7-9 days like clockwork. I started getting massage weekly and since Sept 8th, have been headache free. I recommend you find someone who will work Traps/Scalenes, Sternocleidomastoid, levator and also does facial massage.
I had headaches before my surgery and am still recovering from facial paralysis which is another subject but the massage is helping my face become symmetrical and more balanced again. I also received wonderful facial/neck stretches from a facial retrainer to help in this area.
Best of luck to you. Try this and let me know if it works. You may also find a therapist who will give you a discount for buying weekly massages.
Take care,
Mary
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I believe the address you are looking for is:
Dr. William Allan Friedman
Department of Neurosurgery
University of Florida
Box 100265
Gainesville, Florida 32610-0265
Phone # (352) 392-4331,
(800) 633-2122, ext 24331
Fax # (352) 392- 8413
Please post if anyone is able to get more info on this subject.
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All,
I'd like to re-raise this thread and see if anyone has taken pot to alleviate the headaches. I live in Sydney Australia (down under and a bit north of the Antarctic for most of you) and there has been talk of a trial to legalise pot for medicinal purposes - mainly for HIV, Cancer sufferers as there has been some claims that it does help. I've never touched the stuff so i wouldn't know. is it legal anywhere for medicinal purposes and would anyone know whether it would help headaches following an surgery?
Larry
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Hi all!! I am hoping someone has similar problems. I feel real alone with this, the doctors have let me down repeatly. I had my acoustic neuroma removed 2 year this March and the headaches and throbbing and pounding around the right ear (thats my side of the neuroma) some days are unbearable. I have talked with my neurosurgeon, neuologist and general practice and no one can help. The neurosurgeon makes me feel as if I am dreaming these symptoms. I have been put on drugs for migraines..no help. The only relief I have gotten over the past 2 years is when the neurologist ordered a lumbar puncture to check the fluid, after the test they gave me Tylox and Darvocet for the pain. I was so out of it I didn't know I even had a head!!!! I am not sleeping at night, or when I do sleep it isn't a sound sleep as the pain will make me shift several times throughout the night. I just don't know what to do for everyday relief. Any thoughts?!!!
Thanks all!!! Barbara
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Barbara,
You are not alone. There are many people suffering your symptoms. I do take neurontin which helps a bit and will take stilnox to help me sleep at nights - on an irregular basis. I'm not a fan of sleeping pills but these are supposedly non addictive.
I wish I had a solution for you coz I would use it as well. On another post, Janet has described a condition as hemicrania continua. It's more a description of something that the doctors can't diagnose I think but you could look this up under google.
Larry
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I am almost 9 months post-op 5/05. I get headaches sometimes. I find I get headaches, when I sleep flat, with only one pillow. When I don't drink enough water, and when I am stressed at work. Usually extra strength tylenol helps. I am sorry others suffer from horrible headaches and tinnitus. Luckily, I don't have those. Just all the other crap!
To answer the guy about the pot, don't know if it helps, but I am sure after you smoke, you don't even care if you have a headache.
Denise ;D
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I am still on 10mg Flexeril at bedtime and have not had a single headache since. I am so grateful it has worked for me. My docs want me to stay on it for a couple more months and hopefully the headaches wont come back.
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Thank you for your notes. I had almost the same story as wind6 I think. Same approach, 3.5 cm, left side, etc. I've had headaches non stop for the last 5 months. Sometimes not too bad, sometimes up 6 times a night, neck is immobile and can't open my eyes. I just had my doc prescribe me Flexeril. I will take it tonight for the first time. I will let you know. I think it shoudl work because the mornings are always the worst, I'm stiff have pain from my next throughout my head.
Does anyone else have the problem where sometimes their neck seizes and they are unable to move head left or right? I think now it happens mostly when I in working really hard and constantly craning my neck to hear out of my right ear since I am now deaf in my left. Sometimes just stress brings it on. Just curious. I am so happy to have found this site to communicate with others. It's been so frustrating to have no one that has even heard of it around. I live in the Cayman Islands (just for another month) but no one hear has had it nor have the docs treated it. I had my surgery in Arizona at the Mayo Clinic.
My biggest concern is that with 5 months of headaches and please let me know if you feel the same, I have tons of different types of headaches, and absolutely no rhyme or reason as to why I have them and when. I can't figure out how to get rid of them because I dont' know why I am havng them.
Anyway, I'll let you know if the Flexeril works. Thanks for the help.
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desireeu: I am almost 9 mo post op and still have headaches and a stiff neck. Like you, some are worse than others, I have tried everything, sometimes they work and sometimes they don't. I have tried another muscle relaxant for my neck without success, however flexeril is stronger, careful; it knocks me right out!Good luck and hopefully someday these headaches will go away!luv2teachsped
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Thanks for the note. So far flexeril knocks me out too. At least I'm sleeping more deeply. I am still having headaches but going to try it at night a little bit longer. I think sometimes Neuronin helps but I can't seem to remember to take it every 8 hours without fail. Good luck to you too, I'm hoping by the time a year is up we'll feel like ourselves again.
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Hi- I hate to keep bringing up old discussions, but I am getting very tired of headaches and sore and stiff neck and shoulder. Anyone find anything that works? I have been to doctor for a sinus infection and am still on antibiotics, but the headaches still persevere! I take ibiprophen, which sometimes works, but headache always returns if it does work.Thanks for listening to me grumble! luv2teach
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Indomethacin works. (Indocin) It doesn't cure anything but it relieves the back of the head pain, neck stiffness and shoulder pain better than anything else I have tried. It is an anti-inflammatory but seems to be specific to the back of the head and neck than other type anti-inflammatories. You need a prescription for it.
I am enrolled in a Botox study for migraines. The first part of the study is to determine if you fit the criteria to be in the study. (I think AN headaches are different from migraines but I'll see what they think.) I am reporting my headaches everyday for one month. The second part of the study is where 1/2 of the participants receive Boxtox and the other 1/2 receive saline. The third part of the study is where everyone receives Boxtox. My neck really stiffens up and it seems like relaxing the muscles would work. Just turning my head while grocery shopping is enough to trigger it and cause headaches. I'll find out in a week if I will be included or excluded from the study. The thought of jumping through these hoops is nothing compared to putting up with these headaches. I'll keep you posted.
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Janet,
I read with interest your post about a study for headaches using either botox or saline.
If I remember correctly, you mentioned in a post about six months ago that you had your headaches under control... i think it was with an antiiinflammatory? .... did they get a lot worse since then?
You've tried so much... even neurontin and elavil etc.
Did your docs ever expain why you have these headaches? I suppose i am curious as to whether or not the surgery approcah you had (was it retrosigmoid?) can have an effect on that. I don't know much about the surgical procedures... but with yours do they have to retract the brain at all? i know there are a few types of surgery ops and some do involve brain touching and some don't, but i can't remember which is which right now.
I guess if you are thinking of a botox/saline study you must have tried all kinds of headache remedies including the ones used for migraines.
I am sorry you have reached this point where you have to subject yourself to a study....
i hope you do get this all resolved somehow and become headache free....sounds like you have had a really hard time with them.
as an aside has anyone looked at your neck? perhaps something there is causing your headaches......
Best wishes,
Windsong
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Thanks for your interest. It has been a slow trial and error process for sure.
Yes, I did have the R/S approach. I have the surgical report and "Gentle retraction was placed on the cerebellum". The surgeon gave me a video of the surgery, but I only watched about 5 minutes of it.
I did feel my headaches were under control. I was taking Indomethacin 25mg three times a day and Indomethacin 75mg extended release at bedtime along with Trileptol 300mg. This was to get my headaches under control. The problem is that over a long period of time, the use of anti-inflammatories is not good on your stomach or kidneys. So, it was recommended that I try to take as little as I can get away with. I have got it down to 2-3 Indomethacin a day. It works well when I take them but get mild-severe headaches when they wear off. The purpose of the Botox is to eliminate the need for the Indomethacin altogether.
I would really like to fix the problem rather than treat the symptoms. I know there is inflammation but I can't figure out what the problem is. I did go to physical therapy and working on my neck did help. I can see the relationship between how I hold my head and headaches. I use a warm pack on my neck and that helps too. I can pinpoint where my pain originates from which are always on one side of my head and the opposite side of my surgery. I hope that recording my headaches everyday will give me a tool to show the doctors what is going on. I have to take it step by step to find the right MD to treat the right problem. Whew! I know that the answer is somewhere!
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Janet: Like you, I thought I had miy headaches under control too. Mine also frequently start in the back of my head and neck and can be triggered just by turning my neck. My neck and shoulder were sore before I had the surgery, but it was also before we knew about the AN. I try doing stretches and taking Motrin, but I also don't want to kill my stomach. I would like to find out what's causing them and get rid of them. Night is usually the worst time. I thought I would get my eyes tested and eliminate one more reason. Good luck on your study, I'd like to keep up on how things are going for you! luv2teachsped
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Hi All,
I mentioned in an earlier post about a Botox study. I just completed Phase I where you record your headaches for a month. I am now moving on to Phase II which is 1/2 of the participants receive Boxtox and the other 1/2 receive Saline. This phase takes 6 months so it might be a while before I have some useful info to pass on to you.
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I have not read everyones reply but did read an article today on a patient who had an surgery and got relief from a local doctor here. I have seen him personally for migraine type headaches I had from a car accident. I suffered from the headaches for years and after treatment with him I was symptom free until the darn AN decided to show itself. His name is Dr. Harold Cordner and he's in Sebastian Fl. I thankfully haven't started with headaces since my surgery and if I did I'd be right back to his office.
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Hey Y'all--
So happy to find this site--I was on an AN listserve that I had to quit because of all the emails all the time.
I had my 2.2 cm AN removed via Middle Fossa at House in Jan of 03 and am still stuggling with debilitating headaches that have been diagnosed as migraines because of their one-sidedness and throbbing characteristics. When I get one of these I can barely move or speak the pain is so bad.
I also get a tension/pressure type headache about eveyday. The triggers for these come mostly from fatigue and exertion, but occaisionally I'll just wake up with it.
I've been on a number of anti-seizure meds and also anti-depressants for 3 years off and on, and the frequency and duration of these buggers is slowly diminishing.
I have been using Zomig nasal spray for the really bad ones which works pretty good if I take it in time. Either it totally aborts the headache, especially if I go lay down, or it shortens it to 4 hours instead of 12. I am fortunate enough to be in a finacial position where my husband takes up most of the slack, but I do (did) have a successful carreer as a painter. I did apply for disability benefits 2 years ago and have been turned down twice, but now have a lawyer working on it for me. I have resumed my painting on a part time basis, but about 2 hours into a session, my head starts acting up--pressure and one-sided pain on the AN side and I find one-half a vicodin usually takes care of it.
I really have to watch taking this nartcotic beacause it does cause rebound headaches. Problem is I don't know if I'm getting a rebound headache or a migraine.
My theory on this whole thing after doing a bunch of reading on migraines is this: I have hereditary migraines--not bad enough to seek medical help before my AN but bad enough to have to lay down for a bit--maybe 3-4 times a year. The trauma of the surgery kicked my migraine mechanism into overdrive.
The surgery also traumatized and damaged muscles and tendons in my neck, which is where most of the pain starts, what they call a "prodrome." My first break came from a really good physical therapist who worked on my neck 2-3 times a week for several months. This allowed me to paint again for the first time in 2 and a half years. I am still getting the migraines about twice a month, but I'm exercising again at our local wellness center 2-3 times a week which is huge progress for me.
Anyway that's my story and I'm sticking to it! I empathize with all of you out there stuggling with these headaches. Before all this I was an avid hiker, sailor, windsurfer and runner and now, well I feel like I went to sleep in Jan of 03 and woke up in someone else's body and it really p's me off sometimes to have been dealt such a bad hand--you know what I mean.
Thanks for reading.
Deborah
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Deborah,
Please allow me to be one of the first to say welcome.. and thank you for sharing your AN (as well as personal) history with us. Like you, I've been so active in life, but this AN has really thrown me off guard (as I'm sure many here also share the same). I have checked into House Clinic and spoke to Dr. Brackmann. He recommended middle fossa to me as well. For me, I think I'm leaning more towards Cyberknife at this point based on numerous conversations and having researched and spoken to many about their procedures and outcomes.
I have had migraines for years. Gawd, the ever-loving PMS migraines have been the worst for me over the years. Then, last year, they found this stoopid thing in my head (as well as Chiari I Malformation AND.. the recent MRI found a Choroidal cyst smack dab in the middle of my brain... fun, fun). My migraines have enhanced over the past year... so "blinding". I try to describe to my dr's and note the PMS migraines, then multiply it by 10.  ER visits with 50 mg Demerol shots.. heck, I drive home from the ER. Doesn't even touch them. Right now, my primary has me on 100 mg Imitrex PLUS 50 mg Tramadol (Ultram). Even told my eye dr yesterday about that mix and he says "so, it makes you a bit loopy?" Ain't that the truth. The headaches have been, for me, the worst out of all my AN symptoms.
I would like to say thanks for sharing this with me.. and with us. I appreciate hearing everyone's story as I learn from it, it helps me in making final decisions for myself (yes, it's decision time for me and hope to have it made by this time next week) and so glad you "stuck by it".
Again, welcome... and you're in good company here. :)
Phyllis
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I think I've done most of the meds here ultram, zomig, imitrex, ultram, botox and ended up mixing the meds to get relief. I feel for everyones headache pains! I actually did 4 surgeries with Dr. Cordners office to get relief. I'm waving my magic headache fairy around very quickly to eliminate all the headache suffering!!
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everyone is different sunshine... some have them, some don't and hoping batty's fairy wand continues to do the trick for you! :) Count yourself as fortunate should you continue not to have them! :)
Phyllis
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Sunshine I'm thinking if you haven't had any you should be safe esp with the wand flying ever so fast. I had them before surgery and have been symptom free since. I think I suffered enough with headaches over the years I'm getting some slack thrown my way now ;) Actually maybe it's because I have bigger problems? lol
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Hi
I also had severe headaches on the surgery side, from my ear up the side of my face to my temple and then wrapping around my left eye. I was diagnosed w/ neuralgia and was started on Neurontin 2 months ago. At first I felt very fussy and distant. My doctor told me if I stick with it the feeling will go away. After about 3 wks the fussy/distant feeling went away and took the headaches with it. I still have some headaches by not the severe pain I was having before. No weight gain with this medication.
Cheryl
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Cheryl,
thats a pretty good result. I think most of us with residual headaches would take that. Good to hear some good news.
Larry
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Bump to top for Capt. Deb
ahoy,
Peanut