MAV flare up - suggestions

Hi MAV family,

The longtimers here will know me, but the newer folks won’t. I’ve been checking in every month and offering support and advice when I could, but I’ve been doing really well for quite some time. MAV started for me 5 years ago. Like all of us, I’ve had my ups and downs with a few really big downs, but man - this time…

Here I am again with another crash - big time, almost 1 year to the date of my last crash. I can’t believe it. I’m feeling like I’ve been thrown back into a pit; everthing is just as bad as when this hell first started 5 years ago. 24/7 rocking is off the charts, headpain every day, nausea, brain fog, zaps, sore neck; the list goes on. My meds are still the same, 15mgs of amitryptline nightly. Valium isn’t working at all and the klonopin helps somedays but not others so I haven’t been taking it regularily. I just can’t believe how rotten I feel - that it’s gotten this bad again. I just want to scream.

The worst part - I was a part of derailing my own train. Now I can see it - at the time I didn’t. I know, without a doubt that huge amounts of stress and being too relaxed with my diet set this one off - that makes it ever harder. I should have seen this coming and tried to head it off. Will I ever learn!!!??? I feel so stupid!

Part of me really feels like this is it. Like this is the new normal, the new level of crap I’ve got to somehow learn to deal with every day now - I’ve even started to have panic attacks with this again and that hasn’t happened for years and it’s got me feeling scared. I’m getting into that negative place that I’ve been before. I don’t want to go there again. God, I hate MAV. My only saving grace is motion. It still makes things feel better almost instantly. I do NOT understand this blasted illness.

Still trying to locate a doctor in Colorado (Denver) that knows what MAV is. I’ve had no luck yet. My GP is supportive, so at least there’s that. If anyone has words of wisdom to share or suggestions on what has helped them deal with flare ups - I would be grateful. I just need some support. Feeling pretty down.

Hi operagirl

I just read through some of your previous posts as I don’t think we have ‘met’ before and I noticed you seem to have had a few of these same kind of relapses but you reported feeling a lot better after a few weeks or months. I am sure this time it will be the same!

I too got MAV in 2009 but only found out it was MAV and made my way to this forum last summer during a huge relapse. I have been on meds since then and improving but I have to say that for me hayfever seems to be a major trigger in the spring/summer months. Like today, I had a vertigo episode which I am sure was brought on by the high pollen levels. The same thing was happening to me last summer as well. It is very scary but I guess we just have to know that we got through it before and we will get through it again. I don’t know if you get hayfever or it affects you over in Colorado at this time of year? But maybe could be a factor in your relapse? It certainly affects me that way.

I wondered can you increase your meds at all? 15mg ami seems like a very low dose… Do you have responsibilities like children and/or a job? I know that these can add to the stress levels. Fortunately I don’t have either right now which means I have been able to de-stress pretty well but there are still other triggers which you just can’t avoid.

Anyway, I am sure you will soon start to improve. Try not to worry too much. I am sure this is just a blip and you will be back to your baseline before you know it x

Hey there! I have been living with this for about 2 and 1/2 years. I cruise the board but haven’t really posted much lately. I am just trying to live as best as I can. Over the past year I have had many relapses… I keep increasing my ami by 5 to 10 mg. after a few weeks the symptoms seem to fade. Just when I think I am doing pretty well, bam…I have another relapse. I was taking 25 mg of ami, and I am now up to 65mg. I was starting to feel better so I have actually been trying to wean my dose down, as I know I will need to increase again in the future. I think you should try to titrate your dose upward and you may find this helps. If the ami has been working for you up until now, it seems a higher dose may do the trick. Don’t give up, unfortunately this seems like what we live with…ups and downs. Hopefully though the ups far outweigh the downs! I have really tested my head’s limits this week as I have been drinking everyday, been out in the sun, and tonight I am doing a 3 hour snorkeling trip ( how can I not want to do all this…being in beautiful sunny key west… :))
I am sure I will pay dearly, but in the meanwhile it’s all worth it! Hang in there…you will get through this!!!


Good for you, Jen!

Enjoy the Key West sunset – something of a religious experience.

If things are on your side, you may see a Green Flash!