I am looking for people who already had a lot of headaches long before they where diagnosed. I am having headaches since the age of 7 and after three succesfull but long embolizations in 2011 and 2012 I am still having headaches on daily basis.
My question for those who experienced the same: Did the headaches get better or went away after treatment? how long did it took till it got better?
Do you use any medication or did you used any medication that worked?
Are there people who's headaches never went away?
I really like to talk to people who have (had) the same problem.
Hi Melissa, I was the same,worst headache from the age of 15 to 45 when I finally by God got my avm removed, major. Bleed first spent a month in hospital,they coiled some vained that kept being large again and that was because of a large avm, so the doctor had to go back in clip some vains. And finally remove my avm,thank you God,I now have a huge scar on my forehead. But I'm alive nd hoping. When hair grows in I can hide. The cuts on my face, but I get to live and had the best. Doctor ever
Hi Melissa, I only realised how many headaches I was having when I returned to work. Staff informed me that I was always asking for headache tablets. I had headache tablets in my car, bedside locker and sports bag. I still have headaches and they are starting to decrease in severity since I was put on amitriptyline 10mg two months ago. I am still getting tingling/tight skin sensation around my eyelids, forehead and scalp. The 10mg dosage of amitriptyline is supposed to treat neuropathic pain when taken at night, however I imagine my neurologist may increase the dosage or change meds when I meet him in two weeks time. One point my Neurologist insisted on was that I stop taking over the counter analgesics as they can cause rebound headaches. I will let you know the outcome from my Neurologist appointment, Keep well and hope this info was of some help, Macker
Hi, Melissa. I used to have headaches and migraines very often when I was younger, starting at around when I was 7. It got to the point where I got an MRI taken when I was 9, because doctors were concerned that I shouldn't be having migraines and neck cramping at such an early age (surprisingly, nothing was found... not even a single trace of an AVM). I've had headaches and migraines all my life after that, until it eased up a bit in college. Then the AVMs grew enough to make itself known (through seizures, dizziness, fatigue, etc.), and my headaches somewhat returned.
After the surgery back in December, though, I haven't had too many headaches (after the recovery period, of course). Having some pain killers in my purse used to be a necessity, but nowadays, I barely ever need them.
I'm sorry your headaches didn't go away after the surgery. Your brain might still be pressing up on your skulls and the layer of things between the skull and brain (pia mater was it?).
My neurologist told me "Alleve" was the best for headaches, if you haven't tried it yet. But you have to take 3 or 4 capsules.
I had headaches frequently in my teens & always carryied aspririn or Advil with me. I think I had my first migraine at age 14 & the second at age 17. They became more frequent in college. When I started teaching they became even more frequent & more intense.I saw a neurologist when I was in my 30s & he didn't see a need to do any scans--just put me on Nortriptylene & continued my prescriptions of Maxalt & Fioricet.
It wasn't until last year (I will be 44 next week)that we convinced a doctor that I needed a CT scan, which led to an MRI, then meeting w/ neurosurgeon & an angiogram...I had my first Gamma Knife treatment for the AVM in June 2011 & a craniotomy to clip 2 aneursyms in July 2011. That fall, my headaches seemed to be changing, so my surgeon sent me for an MRI. Things looked good--brain was showing remodeling, so he sent me to a neurologist. She said that I would probably be a migraneur anyway, but that the aneurysms likely made the migraines worse. She put me back on the Nortriptylene that I had stopped taking. She also told me to practice "good sleep hygiene) by turning off the computer & tv an hour before bed time (music & books are ok). When I'm actually doing this, the headaches seem to be fewer & less severe.
Since seeing her, I've had 2 more Gamma Knife treatments. I'm still getting headaches. I actually had a REALLY bad week with them after GK #3 and then had problems with them last week on vacation--It had been 3 really busy weeks, I wasn't taking my medicine regularly, wasn't sleeping well, and my sleeping/eating schedule was all out of whack (huge 5 day dog show; out of state conference for reading teachers; then vacation in Puerto Rico.)
My family & friends all thought that the GK & crani would miraculously cure my headaches, but I'm just happy that they are less frequent. I'm no longer taking Excedrin on a daily basis. (I've switched to Tylenol--but I'll have a week with daily headaches, but not months like I did before). For a minor headache, I take a couple of Tylenol. If it feels like a migraine, I take a Maxalt. Still hurting--Maxalt 2 hours later. If I still can't shake it, I take a hydrocodone (and go to bed).
I’ve had headaches since I was 13 years old. I’ve had several MRIs in my lifetime but it didn’t show anything. It was not until my AV Fistula bled and I had a stroke that they did an angiogram, which showed the AVF and the reason for all my headaches. I had headaches for about 7 months after my embolisation(May 2011). So much so that I was sure I still had an AVF. My headaches have gradually subsided. I had a follow-up angiogram 9 months later to prove that my AVF was obliterated. I think that helped my headaches because I was worried about the AVF and so I think that made me have headaches. My nuerologist said to try not to take a lot of painkillers because you can get rebound headaches. I only take Aleve when I have a headache, which is about 2 times a week. The directions for Aleve read: TAKE 1 TABLET every 8-10 hours. DO NOT EXCEED 2 tablets in any 8 to 12 hr period. DO NOT EXCEED 3 tablets in a 24 hour period. I find that if I am starving, I get a headache so now I eat before I get to that point.
Infind
Hi Melissa, I am sorry to say I had migraine and lessor headaches for 20yrs before diagnosis. I only was diagnosed at bleed. Since the surgery I have had a daily headache, rating mostly a 2 or 3 on a 10 scale. I take no medications for it until I reach an 8 then only tylenol or ibuprophen with an ice pack. My surgery was 12 1/2 years ago. It is not that I am a glutton for punishment but as an ex-nurse I am afraid (yes, afraid) of the potential of addiction so I choose to fight through it. I am lucky it is not real often it goes above 2 or 3.
Hello Melissa I started to have headaches at 22 and first thought they were really bad sinus infections and then a friend who is a neuro told me they were migraines. I had a rare type of stroke at 43 and had so much edema I thought my brain was going to be crushed...the doctors finally did an MRA which showed 5 blood clots...that was March of last year then June of last year I started to have a constant head ache like sunburn pain as if I was wearing it as a head band...I told them but all they did was up my meds...Then in Nov they found I had retrograde blood flow which indicated a fistula. I had the angiogram and embolism in Jan and then had worse pain. I do see a pain neurologist who gives me botox all around my head it does take a month to kick in but it does add some relief not complete.
I am on Gapabetin, Veramil, and another drug to help me sleep. I also take magnesium and Tumeric - the magnesium is supposed to help with pain and the tumeric with inflammation and all kinds of good things.
Are you on any meds?
Angela
Wow, thanks for all the reactions! It seems like I am not the only one who deals with headaches for a long time. Rebound-headaches are not the case, I am barely using meds because nothing works. The neurologist put me on beta blockers now but I feel like it only surpresses, I am not free from headaches. I have been to a paintherapist in August last year, they said: ''you might never get rid of these headaches because you are having them for such a long time. Your body is used to having headaches.''
That was a punch in the face for me, I am still having hope that things will get better.
@t Macker: I had amitriptyline to, but that was more to calm down in combination with pain-medication. Let me know what your neurologist says ;) Thank you. @t Hiro: I am glad you are doing better after your surgery. I know that my brain needs to rest and everything, but it has been 8 months ago now since my last treatment. Things should be better I guess. Thanks for the advice.
@t A Collins: I am glad that your headaches are less frequent to. But as I understand it is precarious? You have good days and weeks, and bad ones?
@t Wendy T: What a story, strange that they have never seen your davf on earlier MRI's! It must feel good that everything is completely gone or not? I still have these things in my head, they are shrinking but I think it will never be completely gone.
@t kittyKar001: I only take meds when the pain is to heavy as well. I have headaches just like you, sometimes they are not bad enough to take aspirine (since it's a daily thing to) I don't like taking to much meds. I am sorry to hear that your dealing with headaches on daily basis to.
@t Angela: the feeling of edema is terrible, I've been there to. I have never heard of botox against pain. Can you tell me a little more about that? does it work for a period of time?
Thanks again all of you for sharing your experiences and giving me advice!
Hi Melissa, as expected my Neurologist has increased my dosage of amitriptyline from 10mg to 25mg.My recent scans have revealed a small backflow from a fistula. The Neuro team are going to bring forward my angiogram and it looks like I am going to get embolised again. I hope the increased meds reduce the headaches. Hope you are keeping well,
Macker
Wow, another embolization. Is that something you expected? Good luck with that. Maybe you're headaches get better after another embolization. I thought I had amitriptyline to calm me down before the night, but I had so much meds back then I didn't even knew what was used for what :P Do you know on wich term another embo will be done?
Good luck, I hope the amitriptyline helps for you.
Hi Melissa, you are right, I did not expect to get another embolization. My fistula is located on the dural, so I presume the last op did not obliterate all of the AVM.
Thanks for your kind words,
Bye for now,
Macker
Hi Melissa I have gone the other way never had headaches and now my DAVF is occluded I have them everyday but in fairness only been 2 months since it bled so I am guessing takes time to settle.
Hey melissa I have an AVM on my R ear and have had it my whole life I also have had headaches long before I was diagnosed. Unfortunatley when I was a child noone really listened to me. My ear (whats left of) is very large and discoloured and you can see the veins running down my neck, when I had embolizations the color went away (which made parts of the ear die) and SO DID THEY HEADACHES.... but as you may know .... once you play with an AVM it gets very angry ... but I had been through so many embolizations and reconstructive surgeries that I myself needed a break so I stopped for a bit. Then just last year I started to notice the color coming back down my neck again .... and the throbing of my heart in my head I could "hear" again ... and then then I had a minor bleed here and then and I would notice it on my pillow and then the headaches would come .... I have headaches every single day I would wake up and go to bed with them and I am literally a walking weather man I can tell you when it is going to rain... And the humidity in VA awful .... One of my docters put my on beta blockers but it just made me feel like i was a 1000 pounds and very short of breath .... the only ONLY thing that truly takes the headache completly away is percocet .... I also take tramadol and topramaxx... the topramaxx really helped me not have to take the percocet as much and I dont wake up and go to bed with headaches ... but so far I havent really had anything help ... Just that... and of course the embolizations which I cant wait for but am scared to death for cause its sooo soon :(