Hi Guys.
I need some advice.
I’ve been fighting Mav (persistent chronic Mav) 2 migraines a day, for the past 18 years.
Med trials for the past 4 years after diagnosis of Mav.
Prior to that, medications for depression and anxiety due to this dizziness.
Never been a meds person, have avoided them allways.
I’ve read all the info about how OTC meds overuse probs.
I’m over trialling meds which have done nothing, but dumb me down and leave me with insomnia.
so have decided not to torment my poor brain and anymore.
I’ve tried several SSRI’s, SSRIn’s, TCA’s, topamax, neuronton,so much crap I cant remember them all.
I’m on prothiadon for the past month and going to stick with it.
My question is, If you had 2 migraines a day, that lasted all day , would you all take OTC meds more often?
I need a break in symptoms , 18 years is just too long!
I mean How could it make/ give me rebound migraine , if I’m already having 2 migraines a day?
in my position … what would you do?
Jen, I have had this condition for over 20 years and tried over 20 preventatives which caused their own problems.
I was told I had transformed migraine from taking too many painkillers when in fact I never took more than two to 4 a day, most days, 1 and a half, all the same I was taking them every day. So, twice I gave up painkillers for 3 months and to be honest it didnt make much difference, the pain was less but the dizziness more. So yes, I take painkillers every day now, sometimes for the head pain and sometimes for the dizziness, it doesnt always help the dizziness and sometimes you get a different dizziness from the painkillers but at least I can function more and get something out of life.
Also, I believe that phsycologically, you need a break from this continuous pain and dizziness or you will go mad.
I am in a bad phase at the moment having experimented with hormones so knocking them back like smarties, but when I am stable I get by on half a painkiller every few hours.
Its a personal decision but I read on here so much about people going insane with the continuity of the MAV and I want to scream, just take the painkillers but I know that we are told over and over again to beware of rebound etc. but after years and years I think quality of life matters more.
Far out. Wow. I read your posts and I realise how (relatively) good I’ve had it. I’ve been thrown up against the wall for months at a time (housebound) but mercifully have had long periods in “remission” in between.
A few things:
To suffer as much as you are, every day (and Christine you too) is just intolerable. The people who are harping on at you about rebound, dependence etc clearly have NO IDEA what full on chronic MAV is like. I wouldn’t give two sh*ts about rebounds etc if you find something that’s working.
As you may recall I’m on Prothiaden and have been now for about 18 months. So I can vouch for it. Touch wood it continues to work well for me. I’m about 90-95% well most days. I get symptoms here and there which are uncomfortable and sometimes even nasty but they are managable so I will take that thank you very much. Prothiaden has minimal side effects and you can take it pretty much forever will no ill effects. So, I’m crossing my fingers for you big time that it gives you some relief.
Like many on here I get great results from Valium when things flare up. I get a massive reassuring comfort placebo effect just knowing it is there and that it will help. The down side of course is that you have to be pretty strict with it but small doses now and then are fine (just ask Dr Halmagyi).
Good luck Jen, you’re a trouper. Hang in there !
Vic
Sorry to hear you’re struggling right now (more than usual). I agree with you about not worrying too much with rebound etc and that if you find something that works that that is the main thing.
I am so glad prothiaden is working for you. Oddly enough that is one of the preventatives I could tolerate in the past, I got up to about 150 on it but although I had some relief initially, it stopped working for me. I tried it again more recently and got side effects, it seems that certain preventatives work at different times in our lives.
I have tried cipramel twice and got instant migraine but seeing Luke using it together with Sanomigran, I may try that again.
One thing I wont do anymore though, is do the “give up painkillers for two weeks” before you start on the preventative or it wont work" theory that the drs. say. If its going to b… work then its going to b… work is my take on things.
I have a friend who is on cipramel and doing great on it but she takes painkillers as and when she needs them, not very often, but she still takes them.
I agree with you Victoria, if something works, take it, if you can get something out of life, grab it while you can and take whatever you need to do that.
Thanks guy’s, you dont know how desperately I needed to hear you say that.
I’ve been giving up effexor these past months and it hasnt been easy, thank god for prothiaden!
it’s helped me keep a “little sane” the physical side effects have been nasty.
I havent been suffering the dreadful pain of normal migraine (well not for a few years), I Generally have neck and shoulder pain,tension type headache… oh yeh…
not to forget the leg pain IBS and on, and on and on.
My Mav has morphed every year into somthing mimicking absent siezures and like I’m DRUNK as a skunk.
Every one thinks I’m drunk, very embarrassing indeedy.
So today I took some Ibuprofen and felt sooo much better for it, I needed the break …yeh :oops:
I did read something not long ago , a neuro said he will try OTC meds (only with persistant cases) to see if he can break the cycle, for a short time.
so I suppose it wont kill me.
ibuprofen is the only thing I can take that helps, so I suppose I’ll just have to take the risk for now and try eating before I take them.
Christine, prothiaden was the 2nd med I ever took, donkys years back and It was the best med for my mav and I’m glad to be able to be back on it.
it’s easy on side effect for me and helps me sleep , Bonus!!
Thanks so much for your support guy’s.
I’m so sorry you have had such a time of it, makes me very angry.
It breaks my heart to read what a rotten time you’ve had of it and for soooo long. That sucks.
I’m not sure from your post if you’re tolerating Prothiaden well or having side effects - can you clarify? I sometimes find that if I wake up at the ‘wrong time’ during the sleep cycle my vision is very wonky. Either I can’t get a whole picture (is all dotty and blotchy like an old TV screen trying to get a picture happening) or I see giant pretend Daddy Long Legs crawling all over the walls! I’m completely aware these are all side effects so I don’t let it worry me - I lie back and wait for it to pass and enjoy the side show! :lol:
Is good to hear you’re getting some relief from Ibuprofen. Does it help at all with the neck and shoulder stiffness? I find it OK when my back is out (anti-inflammatory).
Christine,
See above re my Prothiaden side effects. Luckily, although they are a bit weird, they’re nothing I can’t tolerate. I do seem to handle this med well. I accidentally overdosed (quite significantly) for a few days and felt a bit “off” but put it down to jet lag (was travelling at the time). Neurologist freaked out but said my “metabolism must chew through it”. So, touch wood it stays that way. If I need it for the rest of my life I don’t really care. Better than full blown MAV! I agree with you a hundred p/c on doing what works for you. I’m lucky I’ve got a specialist and GP who aren’t all anti-meds like some docs. They seem to share mine, and your view that life is too short to stuff around suffering if you don’t have to. Hope you find a good balance of things which work for you.
Wow - you guys must have wills of iron not to be jibbering-blubbering messes ! It’s so crap that you 've been suffering for so long with this bulls**t. I feel very lucky that I rarely get a headache that demands pain relief, but my symptoms are breaking through quite a bit now and the anxiety is really starting to give me the you-know-whats so am thinking of trialling a tri-cyclic (I’m on a beta-blocker). Think I will talk to my gp about prothiaden.
Totally agree with Victoria that it’s quality of life that really counts. Virtuous med avoidance is so over-rated - you need some symptomatic relief at least occassionally just to remind yourself that it CAN get better.
you ladies rock (and I don’t mean in a MAV sense…although you might do that as well :o )
Gabrielle
PS Victoria shame you can’t sell tickets to your visual side show - sounds wild :lol:
PPS know what you mean about the “placebo effect” for valium. I’ve only taken it once, but I carry it around like a talisman ‘just in case’ and in a strange way that helps me not to take it…
Yeh Victoria,
I know too well of the spider/ ants running around the room thingy.
kinda creepy hey.
Funny you should mention that , as I had to tell my Mum the other day, that all was ok when Dad asked her to get the insect killer because he was seeing them as he woke,he’s on endep, for pain
as long as I dont go too high I’m pretty ok with P.
I’m fine with the SE, been there done that years ago.
I can tell the physical SE I’m having now, are from the effexor withdrawal, brain zaps ect:
it’s all good they’l go soon.
I’m Lucky that I dont spinn for long only a few seconds , its the other stuff that brings me down the most.
Rocking, brain fog, visaul crap! brain rushes.
Ibuprofen works well for stopping my migraine or lessening it.
I’m not sure yet, if the ibuprofen will fix the neck pain I’ll let you know.
I’m going to take it again today.
I have noticed the effexor really helped with that, but then it numbed everything. :shock:
Gabrielle, you gave me a great laugh with your Valium Talisman (Valisman?) and Virtuous Med Avoidance. I don’t understand VMA at all. Can you imagine 200 years ago if you said to someone - “You can take this aspirin and it will stop your headache” or “If I inject this liquid into your arm you’ll never get tetanus/polio/hepatitis” etc - that the person would say “No way! I don’t want that stuff in my body I will keep my headache thank you very much and I will risk getting polio”. Puh-lease.
Jen, that is crazy we both (and your Dad) get the spider hallucinations. Not mentioned anywhere on the looooong list of side effects in the insert. I read that insert hoping that “weight gain” was a side effect - so I could blame the meds rather than, um, my gluttony and indolence.
Hey Vic,
Dad has an inoperable AVM , which is playing up at the moment, he saw a train today (visaul halucination) with cartoon caracters riding in it dancing,lol poor thing.
So I dont know if we can safely say it’s his meds causing all his prob’s :shock: , but I do know he’s on TCA’s for pain, and yep I’ve seen insects or hundreds of little black spots on the cieling rushing from side to side.
were yours just as you were waking , but not quite fully awake?
oh dear what us med crazed guys have to deal with.
Are you saying the dancing cartoon characters on the train aren’t real?? But I see them every morning on the way to work… :lol:
I don’t get my spider or blotchy visual field hallucinations all the time - just now and then. They seem to happen in the morning, not long before waking “properly”. I guess it must be something to do with which stage of the sleep cycle I’m at. As I say, it usually passes after a minute or so so it’s not a problem, and after the first few times when I realised there really weren’t any giant Daddy Long Legs I don’t get bothered by it.
It really is funny we both get it yet there’s NO mention of hallucinations in the side effects insert. I discussed it with my doctor and he even looked it up “on the computer” and couldn’t find it. Even though there was an exhaustive list of often contradictory side effects - you know the type of thing - “loss of libido, increased libido, insomnia, drowsniess” blah blah blah. I wonder if it’s a migraine-y off label type side effect?
heeeee… yep hone their not! :shock:
and yeh it’s also when I JUST awake too, know how it feels.
I’m thinking of you hone, and hope all you Mav’ers find something good, lifes gonna be worth living soon hey. new developments all the time. :roll:
jen
xxxx
I’m currently on metoprolol (beta blocker) 50mg am and pm. I was down to 25 am/pm but then had a few bad week and bumped up the dose (50 am and PM is what GP prescribed).
Also take feverfew (120mg parthe-whatsisname :lol:
I am toying with the idea of trying a tricyclic (maybe nort or prothiaden) but I’m kinda reluctant to rock the med boat, even though I’m only about 70-75%, and still have some sub-50% weeks (normally in the “PMT zone”) and would like to be more 90-95%.
If only there was a crystal ball that you could look in to see if you’re better staying on the med you’re on or switching!
