hi, im new to the site, however since my avm diagnosis last august me and my wife has learned a lot about this condition on this website. like so many of you we had never heard of an avm but thanks to this site and others we learned a lot. my question is regarding headaches since my craniotomy. i did not have a bleed (the avm was discovered via seizure). got to work quickly to get it out! in 1 1/2 months i had 2 embolizations and a craniotomy. since the craniotomy ive been suffering from headaches. not horrible ones or migranes just seems like a headache i cant get rid of for the last 10 months. i was on keppra until 2 months ago, it has a common side effect of headaches so i figured that may be the cuase. however my headaches have continued. just wondering if anyone else has had similiar side effects, and maybe could give me some insight to what might be the cuase. loud noises or noisy areas seem to trigger them immediatly. i have a few other annoying side effects that my dr.s say will get better or go away by the 2 year mark. it seems like they dont really have an answer for me on the headaches.its very nice to be off the meds, but if taking something will give me relief im willing to do anything.
I have not had any seizures ( or at least I’m not aware of any) and do not take any prescribed medication; however, I do know that it took about 6 months for the ‘loopiness’ I felt from the hospital drugs to finally wear off and get out of my system. I have NO idea about seizure meds. (side effects nor the length of time they remain in a person’s system); however, it may be possible that it is a ‘withdrawl side effect’ from not taking the seizure medication anymore. As I stated, I have not had any experience with seizures nor seizure meds., etc.; therefore, I can’t provide any ‘real’ information regarding that. My apology! I had a crainotomy to get rid of my brain AVM and occasionally I get a headache (perhaps it from tension or eye strain due to the fact that my vision was effected). I’ve done my homework by researching what we AVMers can’t take for pain and found that we can NOT take aspirin, Advil, Motrin, Ibuprofen, or Aleve. We CAN take Tylenol. Prior to my AVM ‘discovery’, I normally took Excedrin Miagraine for all my headaches, as the others never really gave me ‘relief’ from the headaches. I’ve again started taking the Excedrin Miagraine (only 1 pill as the dose, rather than 2 of the pills) whenever I get those headaches (which aren’t even close at all in their pain to the ‘bleed headaches’ I had.) Check with the neurosurgeon / neurologist first about what you CAN take to allievate your headache. And be ‘firm’ with them about giving you an answer about WHY you are getting the headaches. Good luck. Hope you are doing well and get these headaches resolved or at least ‘controlled’ with the correct (prescribed or OTC)product. Take care and please do update your findings / information when you find out, as it may prove to be very beneficial to you and others who experience the same thing.
Hi Rick,
Glad you made it through all those procedures. Yes, you’re still in the time period in which you can reasonably expect improvement. I read somewhere that doctors say healing happens over 2 years, but people still notice improvement in themselves up to 10 years later.
There are so many different reasons for headaches, but the only one I have experience with is poor sleep. My husband’s headaches have really been reduced after a 24-hour EEG showed that his medicine was allowing seizure activity–not noticeable seizures–that were keeping him from sleeping deeply at night. He switched seizure meds, and now he’s down to 0 or 1 headache a week, usually tied in with sleep deprivation.
If you think poor sleep is a possible cause for you, you might want to ask your doctor about a “sleep study,” where you stay overnight in a hospital for a few different kinds of monitoring while you sleep.
JH
I have the same exact thing. I have had a headache since November…It is in the back of my head, not near the incision and feels like a tension headache…Hot showers help and the only medication that worked was Fioricet but after about 2 months, its stopped working. My drs. also are no help, say they dont know why I have headaches. it just seems like its something we have to live with…When it gets really bad I jus try and remind myself at least I am alive to have a headache…it could be a lot worse.
that is a great way to look at things mary kate! i to have just accepted the fact that im gonna probably have these forever. i took fioricet for about 4 months it doesnt help at all. its been suggested to me that the headaches could be cuased by nerve damage or scar tissue putting pressure on a nerve, and the next time i see one of my dr.s i will ask. if thats the case not sure what can be done about it. i do know that i will suffer with headaches the rest of my life before i let them cut my head again, besides they’re not killing me! good luck to you and hope you can find some relief. i feel like nobody believes me sometimes, just glad to see im not the only one
mary kate said:
I have the same exact thing. I have had a headache since November…It is in the back of my head, not near the incision and feels like a tension headache…Hot showers help and the only medication that worked was Fioricet but after about 2 months, its stopped working. My drs. also are no help, say they dont know why I have headaches. it just seems like its something we have to live with…When it gets really bad I jus try and remind myself at least I am alive to have a headache…it could be a lot worse.
Rick:
I had headaches after my craniotomy as well. Turned out they had irritated some sort of migraine path during the surgery. I had the Fioricet but it gave me hallucinations. Eventually they gave me something else I don’t remember and it did the trick to stop the really bad ones. We discovered my headaches were sensitive to caffeine. So I carry Excedrin Tension (has caffeine) instead of Excedrin Migraine (no caffeine) otherwise identical. The headacxhes generally start behind my eyes. I take 2 pills and most of the time it helps. Without the caffeine though nothing works.
well, i saw my neurologist last week, he put me on verapamil 180mg. this is a blood pressure medication he say that can sometimes prvent headaches. the first 2 days ive taken it it hasnt helped, in fact they were more painful, i didnt take it yesterday since i work nights and didnt want to chance a painful headache. i plan on calling him today and letting him know. just thought i would share, it sucks to get my hopes up again but i will keep trying i guess. i did try the exedrine tension after reading will smoot’s reply, to no avail. i do appreciate the suggestions though, maybe i will find something soon.
its been over 3 years since my bleed/crani and i still get headaches very frequently.