Quantcast

AVM Survivors Network

Migraine medication

Hi all, I know everyones differant but I am hoping for advice for alternative medications for migraine prevention or relief. So far I have tried the following:

  • sumatriptan
    This did the job at first… but the last time I took it for a migraine attack, the pain eventually subsided and I was left with blurred vision, struggling to focus on objects even close by. Freaked out and went to A&E and was ordered from the doctor to never take sumatriptan or any triptans again.

  • combo of codeine,ibuprofen,paracetamol
    this does the job sometimes, but for bad migraines even if I recognise it coming on and take these right away it doesnt help. Well it does make me drowzy which I guess helps me sleep it off.

  • beta blockers (propanolol)
    these did the job for a while then migraines came back with avengence, dose was doubled, side effects got worse. Exhausted all the time no matter how much rest I got, vertigo, feeling zoned out when I would leave the house and dizzy. Migraines came back again and decided to weane off and stop with this

  • amitriptyline
    This is what I am currently taking. At first felt massive releif with daily migraines stopping. Felt more positive mood wise for the first couple weeks. Now about a month in, my moods are very unstable. I feel like i’m back to square one with my depression, having awful lows. I’ve been struggling to… go, both peeing and the other one (TMI i know). And again I am so tired even though I am taking this medication at night only! And… migraines are back. Its not every day but its still been 4 times in a week.

My doctor said the last thing he could think of giving me was the amitriptyline. I am wondering if there is any other medication you guys have tried thaf worked well for you that I havent tried already? I can then bring up with my docter and see what he thinks!

Hugs, Corrine :smile: xxx

Corrine, I have the same question. I have tried all of the above plus amitriplmine ( can’t spell right now suffering from major headache) I have tried three nasal sprays Vicodin omg I can’t think of all the things I even purchased a head massager that works on batteries that fits like a helmet: I have daily headaches and they get worse when the weather changes. At this time I have asked my dr to prescribe diamox it is an altitude medication. I found from reading what others share that this helps with people with headaches. If you come across something that helps I would be interesting in hearing. Good luck and take care.
Tina

I’ve tryed about everything over the last 30 years, my head always hurts on a daily basis, on a scale of 1 to 10 I start at a 4 or 5 every morning, the only thing that has worked for me is medical marijuana, but I can’t use during the day, while working, and hydrocodone/acetaminophen 10-325, I don’t like taking this but it does work, best of luck to you, P.S. I tryed not taking anything and it put me in the E.R.

1 Like

Hey, try Topamax. This is a great migraine med. Esp. stacked with a lower dose of propranolol. 100 mg Topamax, 80 mg ER propranolol. Do something for mood as well - lots of options there.

I ended up in the ER with what turned out to be a bad migraine - thank goodness - a few hours after getting cyberknife treatment for my AVM. I was a more than a little worried because when my brain bled I also had thought it was a slightly unusual migraine that came on suddenly. This one was gradual onset and I’d already taken Tylenol and rizatriptan with no effect.

Anyway at the ER I was given Reglan which is an old drug that is used for antinausea. Luckily that did the trick. I’ve taken it one time since then I think. Both times it stopped the vomiting and lessened the headache to the point where I could sleep the remainder off.

I know you shouldn’t take it often for long periods of time because it can cause permanent neurological effects in a tiny number of people.

Even when the rizatriptan (Maxalt) hasn’t worked, taking ondansetron (Zofran) to stop the vomiting often helps immensely as it lets me sleep off the headache eventually.

Good luck, I hope you find something that works.

1 Like

Hi @Tina_Bodin,

Thank you for sharing your experience with me, Im sorry to hear your having much the same luck as me with medication. I’ve seen some of the medication recommendations from the other posters that I haven’t heard about before. I will check with my doctor, hopefully they can be helpful for both of us!

Take care and fingers crossed we will find something that gets rid of these migraines without too much trouble with side effects,

Corrine

Hi Andrew,

I’m very interested in giving acetaminophen (tylenol) a try. Looking online it looks like hydrocodone or vicodin are not available/prescribed in the UK. Ive read that medical marijuana can help a lot with pain releif but unfortunately it is also not currently available in the UK - on bad days i’d take nearly anything to make the pain go away!

Im glad you’ve found some solutions to relieve the head pains though it sucks not finding something to prevent them from happening in the first place. Even if treatment to remove my AVM doesnt get rid of these migraines, hopefully I can too find some reliable releif so I can get into the working world! Impatient to get my independence back but I know there isnt always a magic cure or easy way unfortunately!

Thank you very much for your reply,

Best wishes, Corrine :slight_smile:

Hi @DB20,

I will definently bring this medication plan up with my doctor! Thankyou very much for your recommendation, I have never heard of topomax until now. Can definently do with some help with moods, amitriptyline has turned me into an emotional wreck!

Best wishes, Corrine

Hi @elisabet_k,

Thank you so much for sharing your experiences with differant medication, I will definently bring these medications up with my docter who im seeing on the 12th october (ive been asked to try a higher dosage of amytriptyline for two weeks and then have another check up to discuss side effects and other options).

Vomiting induced headaches must be awful, I’m glad you’ve found some medication for some releif. For me, I have migraines with aura which comes with dizzyness and confusion. I have good days but after a migraine attack I’m left exhausted in bed for days afterwards whether or not I get more migraine attacks for those following days, hopefully one of these medications will work for me!

Best wishes, Corrine

Hi Corrine, thanks for reply, sorry I didn’t realize you were in The U
K, everyone is different you can only do what you feel is best for
you, do your research, ask lots of questions and follow your heart,
it will never fail you, best of luck to you, take care,

1 Like

Most of my migraines have had nausea and vomiting as an early symptom, but the headache usually comes first. I don’t get auras with the headaches, just one or the other. So I love getting auras!

Caffeine is included in some OTC migraine formulas and I used to find it really helpful to get a cup of coffee down if and when I could. But caffeine is absolutely contraindicated until the AVM is completely gone. Luckily though, since my migraines mostly had hormonal triggers they are much less frequent now that I am approaching menopause.

Hi @elisabet_k, Sorry for such a late reply

That is one things that concerns me though, because I also have been getting aura (flashing lights,blurred vision) that comes without a migraine to follow. I don’t really understand what it is if it isnt a migraine symptom. Not that I am wanting a migraine mind you. Has any doctor explained these random auras to you?

Luckily so far, I’ve only had a few headaches (but no migraines) which have responded well to my migraleve (codene,paracetamol) and ibuprofene. I am still considerably more emotional than I used to be and still struggling with toilet trouble. Going to see my GP today so will bring this up with him and see where we go from here. I’ve started cognative behavioural therapy which will hopefully help on the emotional side of things.

I feel so silly, was just looking online and realised tylenol/acetaminophen is called paracetamol over here :joy: I didnt realise until now.

Im currently on the mini pill, so I get no monthlys so I’m not sure about effects of hormones cycle. Caffiene is such a confusing one for me, since it can be a migraine trigger and yet used in medications. Luckily the codeine in the migraleve I take gets me drowzy to help me try to sleep off the migraine.

Hope your doing well and glad to hear the frequency of your migraines has been reduced.

Corrine

Corrine,

I’ve been busy reading “Migraine” by Oliver Sacks. From reading that, I think I can say that it is not unusual to have auras without turning into a headache. I would say that AVMs and other brain injuries or anomalies can give migraine-like symptoms but Dr Sacks wouldn’t describe them as a migraine, actually. Migraine by his definition is a very common, benign occurrence, whereas migraine-like symptoms initiated by some other cause are perhaps benign in themselves but the underlying cause less so.

Auras are amazingly diverse and in migraine are symptomatic of a Classic Migraine. Migraine without aura is a Common Migraine.

In your case, I think your auras are provoked by your AVM.

I’ve never had what I now believe would be a migraine, though I’ve had plenty of headaches over time. I had some auras after my embolisation and after my angiogram. I had scintillating or negative scotomas. They have disappeared since.

So… I’d say not migraines but triggered by whatever your AVM is pressuring or starving slightly.

Hope this helps,

Richard

Me neither!! :sweat_smile:

@DickD, that Oliver Sacks book on Migraines is what convinced me I didn’t have a brain tumor! I was definitely having the classic scintillating scotomas. Turns out I am not at all alone in getting the auras without headaches - as soon as I started asking, I found my mom, my neighbor, some of my friends.

I had a really great doctor several years ago who’d done tons of research for herself, so she was a fantastic resource. The theory was that migraines tend to start with irritation to the trigeminal nerve, which goes through the sinus area. My doctor explained that it isn’t so much that people have a particular trigger, as that they have many things that cause sensitivities that build upon each other until one is like the straw that breaks the camel’s back, and you get a headache.

She helped me come up with a plan, what to do or what medication to take in what order with specific symptoms and circumstances. I found that really helpful in narrowing down to things I had some control over (like never sleeping in late, which was a trigger).

One thing she suggested was taking CoQ10, because there had been a very small study where it had seemed to reduce the frequency and severity for a number of people. So not great evidence, but I don’t care if it’s just the placebo effect! Whatever works, lol.

So the current theory on migraines, I think, is that it’s a spreading wave of depressed neural activity that travels through the brain fairly slowly. As it passes through the visual cortex it causes that shimmery ring that starts as a dot and grows until it’s out of the field of vision. Accompanying that is an effect causing blood vessels to react, causing pain.

OK, I just looked this up and here’s an explanation from Johns Hopkins. Apparently fluctuation in estrogen or serotonin trigger the phenomenon. http://www.hopkinsmedicine.org/healthlibrary/conditions/nervous_system_disorders/how_a_migraine_happens_85,P00787

I really wonder if the AVM contributed to this phenomenon, or if I started getting headaches when the AVM got worse. I only got a headache every year or two when I was young, but I had auras at least a few times a month.

It is still not clear which is cause and which is effect. But the spreading wave is surely how it progresses. Dr Sacks describes this as a “Jacksonian wave” after Dr Hughlings Jackson’s description of migraine aura. From reading the book, it typically lasts 20 to 40 minutes, which explains the onset and offset of my auras after my embolisation and angiogram.

Dr Sacks book is a little old by now perhaps. I think it was his first ever publication, in 1970, though my copy is a 1992 revision. My reading of the section on pseudo migraine in chapter 4 leads me to think that people in this community have a pseudo migraine rather than a “true” migraine, though in reality it doesn’t matter what you call it, both have the same effects, the same discomfort, etc., just different underlying causes.

Great to talk about this a bit!

Richard

1 Like

Hi @DickD @elisabet_k,

Sorry for the delay in my replies! Thankyou for all the information about these migraines and auras - makes a lot of sense about the possible effect of seritonin with migraines since now I have increased the dose of amytriptyline I take, migraines have stopped. So depite hating the side effects, lack of migraines is worth while.

I really hope these "migraines"are infact linked to the AVM and arent just “classic migraines” which both consultants kept saying. Hopefully bye bye AVM will mean bye bye daily meds to prevent migraines after full recovery! I could be fine with the odd migraine but Id like to live pill free one day without having frequant migraines hopefully.

Ive noticed certain things that trigger migraines or auras: being hungry, high stress, excersizing and concentrating too long. So avoiding these helps, though I miss being able to push myself solving complex problems for long periods of time.

I have finally gotten a hospital date guys! This friday I have the preassessment tests, then on the 6th I get to the hospital at 8am for the angiogram. Glad to have some progress though I am nervous about treatments following :confused:

Hope your both doing well, Corrine

1 Like

That’s excellent to have a date! It becomes a bit more real (and worrying) when the process actually starts to move, doesn’t it? Its natural but you’re going to be in good hands. All you have to do is be patient.

I’m sure when your migraines are being described as “classic” it simply means that you have aura as well as common migraine. Have you had migraines from your formative years or only the last few years? Sacks would take the latter as suspicious and the former as you’re more likely to have migraines long term.

I love that you like solving complex problems!! I work in IT and don’t solve problems on a regular basis these days, I’m more of a manager than a problem solver but what I used to enjoy about IT was to take a complex IT-related business problem and sort it out!! Its what keeps me in the job I’m in.

Good luck!

Richard

1 Like

@DickD it sure does - Im more worried about the embolisation compared to anything else… I have just made a new post about it to help calm my nerves!

For me, I have had migraines with aura since I was a teen. But these migraines were pretty rare, not as intense pain-wise and nothing some ibuprofen wouldnt fix (from what I remember). Then once I started uni they started becoming more and more prevalent - but usually only during times of stress (which isnt helpful when you have coursework deadlines and exams). Then this year they reached an all time high when they were popping up all the time even without any recognisable instigators.

I feel like maybe it was growing/placing more pressure on my brain during my uni years and hence the increased frequancy?
I wish I wasnt such a cheap skate and had regular eye tests during uni cause then I could have gotten diagnosed sooner (doctors insisted I got my eyes checked out since the last time I was seen was at 18/19 - when eye checkups were free -sigh-)

And yes! That is what inspired me to go to university to study engineering! I miss all the calculations and that yurkia moment when you finally realise where you were going wrong after hours of hitting a brick wall! The spreadsheets and simulation software and late nights in the computer room with my project team living off junk food and caffein getting our reports perfected in time for the deadlines. I have to be patient but im really looking forward to working and hopefully having cool collegues that I get on well with :slight_smile:

How are you doing now? Will you be having any more treatments or have they said the embolism is sucessful by itself for your case?

Corrine

Theoretically, I’m all fixed with just the embolization. I have times of believing it and times not. The doc said to rejoin normal life. I’ve got a funny head today. Seems quite pressured so I’m keeping an eye on myself. The folk in Texas blamed the recent hurricane so maybe Ophelia is having a bit of an effect on me. Dunno.