Longevity of MAV

I was reading an article about migraine and its proponderance to only appear during a certain period of one’s life (i.e. it could be their 20s, 30s, 40s) and then simply disappear (with a chance of reappearance in later life - although this is rare). It also made me think back to what my neuro-oto said in London - ‘‘I do believe this is something that will simply pass as you get older & it will not haunt you forever - it is the nature of the migraine equivalent’’. This was in response to a question I posed as to whether I would be like this forever - a very common question among chronic dizziness sufferers.

Does anyone know as to whether this is the case? I know a few MAV experts have claimed ‘‘once a migraineur, always a migraineur’’ - but do they mean that in a cyclical sense i.e. you can be asymptomatic but still be a MAVer?

With this in mind, is it always going to be necessary to be on meds to control this? How would you know when to come off (once your cycle has passed). All very difficult questions I know & furthermore extremly tailored to each individual MAVer.

I have been thinking a lot about it today and how MAV could shape my life in the future (although throughout this I have always been a person who believes to take each day as it comes) and what those implications may be.

Anyhow food for thought…

ps. Anyone testing any new meds with good success at the moment? How are people finding Effexor and Paxil? I remember a lot of people seem to be dabbling with them. I was going try Effexor but can’t get any new meds til August - no 37.5 mg pills. Is it normal to feel jittery and on edge when starting SSRIs at a low dose? I didnt have a problem with Celexa but ami, lexapro & effexor make me feel damn weird.

Luke

I asked a really good neurologist the same question - as you say, who the hell wouldn’t ask lol. It’s what we’re all hoping for. He suggested maybe it would stop when I hit the menopause - which wasn’t exactly cheering as it’s a way off. Obviously that won’t apply to you anyway.

From all my time on these boards it really does seem to be random. There’s as much reason to presume it will go and never bother you again as there is to think it will hang around. If you look at the success stories thread, I wrote about a friend who got this in her twenties. She had it for a year, was on meds and well for a further year, came off the meds and bar tiny moments it hasn’t bothered her since. She does pretty much everything she pleases and no dizziness. Ok I can’t speak for what might happen to her in five more years, but she’s definitely having a very good run of it.

Like you I did a pretty long stretch mostly well (but did have relapses) and have now relapsed for a number of weeks after taking effexor. I seem to be getting better but it’s slow and frustrating. Once you’ve escaped from the MAV prison it sucks when you’re locked up again. It’s great that you’re travelling despite this. If you’re not disabled by it you might as well have fun.

You asked about drugs, I had a dreadful time with effexor and now off it am still suffering the consequences, (I have written a long thread on this board moaning my neck off about it if you want the gory details. ) Then again, someone else on the board has got well on it and I had a terrible time with pizotifen which made you well, so who knows. We’re all so damn different. The drug that saved my back for a long while was propranolol, which I am slowly titrating up on again. If you haven’t tried it, it might be worth a shot as it leaves your system pretty quickly if it doesn’t agree with you, so if you’re travelling it might be worth giving it a shot. It’s unlikely to make you feel weird for any length of time.

For what it’s worth effexor did make me very agitated, this continued for three weeks till I came off it.

H

Nice one Hannah - thanks for all the info!

It does seem its all a bit of a bloody lottery. Its a real shi*ter that your back in the MAV saddle. I hope we can both dismount and get back to feeling normal. I’m running out of drug options soon…but guess I will give Effexor a go at some point. I live in the UK, but have an appt with Hain in Chicago in August so I will see what he wants to put me on. Fingers crossed i will be better by the time I get home. I really need to be able to work :frowning:

Dizzyrascal,

I am seeing Dr Haine Next week and that is one of the question that I plan to ask him. I have read in multiple journals, and sites about how migraines in women are affected by hormone changes with their monthly cycle and or life cycle, usually ending with menepause. My question though is in regards to men. I have never found anything about this topic. I have never heard of any hormone changes in men passed puberty. I guess I find out next week.

Brian

My poor Mom went through terrible dizzy spells when she was the age I am now, but nobody then figured out why. Back in the 1970’s, you were going through “the change” at this time of life; nobody made the connection between her age and what she thought were bad “sinus” headaches and suddenly starting to have dizzy spells. Now I know that the hormone rollercoaster and how it’s a migraine trigger is what brought this on for me.

The good news is my Mom’s dizzy spells stopped after she was done with menopause, so I plan to be done with this when I’m finally past perimenopause - I can’t wait! :smiley:

— Begin quote from “maryalice”

My poor Mom went through terrible dizzy spells when she was the age I am now, but nobody then figured out why. Back in the 1970’s, you were going through “the change” at this time of life; nobody made the connection between her age and what she thought were bad “sinus” headaches and suddenly starting to have dizzy spells. Now I know that the hormone rollercoaster and how it’s a migraine trigger is what brought this on for me.

The good news is my Mom’s dizzy spells stopped after she was done with menopause, so I plan to be done with this when I’m finally past perimenopause - I can’t wait! :smiley:

— End quote

I am firmly convinced that my going through peri menopause has a lot to do with what has happened as it concerns my Mav…I have had migrainge for almost ten years prior to 2007 and then I had my first Mav attack in the fall of that year. Then in July of 2008 I had my MAv crash. At the same time I found out that my Vitiam D level was low, very low and that my hormone levels were lower than they had been in the past and then by December 2008 they were very low. I had a partial hysterectomy 20 years ago so I did not have a cycle to warn me things were changing in that respect. Howver I am the exact same age my mother was when she entered this stage of her life. She had a horrible time going through the :change of Life. I hope that after I get through this my symptoms will improve, the only problem is in the meantime how do we go on with life. :mrgreen: