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So basically, at 24, this it the rest of my life, huh?


#67

Also, Sarah - I know you’ve tried quite a few meds of different kinds, and several of them made your symptoms worse. I’m just curious, how long did you take each med? If you can remember.


#68

yup i am a 30 yr old loser too my life ended at 26. i cant remember each one but i tried to stick it out for at least a month if not 2, my dr. said basically 8 weeks max if it isnt helping you then stop it. i think any longer then that for maybe 3 is a waste of time.


#69

I always thought each med had to be trialed for anywhere between 4-6 months before it could be dismissed?


#70

Hi I just wanted to post quickly and say there are solutions!!! I was dizzy/ nausea for almost a year and finally got relief from citalopram and chiropractic care. The chiro and meds helped within a month, but took a few before I was 100%
Everyone finds their own cure. I am convinced that this is from a virus that triggered it, causes neurological damage and that just takes a long time to heal
The ssri s work as a bandaid while u are healing … Good luck and do t give up hope!!! Soon u will look back and mRvel at your strength and learn how to care and advocate for yourself … Have been there and know u will come back


#71

Thank you for your encouraging words. I can’t wait to escape from this abyss. It’s been a year straight now, but I’ve only known it was MAV since January. And that’s interesting - my neurologist, Dr. Cherian at the Cleveland Clinic, suggested the same thing about the potential for this to be triggered by a virus. Are you able to live a normal life at this point - primarily work full-time?


#72

Nick, don’t give up hope. I was just diagnosed last month but have had my issues or about 8 months now: constant lightheadedness, kinda dizzy, swaying and rocking sensation, head pressure. I know mine is stress and anxiety related and I’m in counseling for that. I’m starting on a new med tomorrow (even though they terrify me), gonna start the Heal Your Headache diet, exercise more. There are just so many things to try and I’m just so hopeful! Just keep trying and stay strong :slight_smile:

Bridget :smiley:

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#73

Thanks! I was just diagnosed in January. One med down, many to go. Gabapentin didn’t work for me, nor did PT. So I’m excited to see what my neurologist has in store for me. What med are you starting on?


#74

I’m gonna try Effexor. Nervous because of what I’ve read about it but I’ve got to try, ya know?


#75

And I was first diagnosed with Ménière’s disease…what a mind job that was!!! So, for me, being diagnosed with migraine is much better :wink:


#76

Yes, I was misdiagnosed with Meniere’s for a month or so, as well. Sometimes I feel like that might have actually been better, because at least that comes and goes as opposed to remaining constant, 24/7. That was one of the big hints when I went to the Cleveland Clinic that I wasn’t a Meniere’s case, among many other things the more informed doctors there could pick out that doctors back home were clueless to. But yeah, starting new meds always seems like a scary endeavor, but it’s so necessary (along with diet). I would do anything just to be able to stand without feeling like I’m going to fall again…I can’t believe I’ve felt like this for a literal year straight now. Good luck to you. I’ve seen a few people who say Effexor has helped them. Just give it at least a month but more realistically several months before saying it doesn’t work! And it seems like most meds make us worse before better, so that’s a good sign. It means it’s challenging your MAV stricken brain. Which is good.


#77

Thanks Nick! My cell AND my iPad died at the same time last night…lol!!! I just get nervous about meds fooling with my brain. But, I’m tired of the constant headache and dizzy/lightheaded so I have to try. We’ll see :slight_smile:


#78

Indeed! Keep us all updated. Good luck to you.


#79

I’ve found since re-entering my life that MAV is very common. A lot of people have no idea they have it. My mom had always had it and didn’t really know why she would feel so crummy sometimes until she read some of the migraine books I had lying around. Anyway, I’m on a ton of meds and doing great. My mom is on two meds at much lower doses than mine and doing great. She frequently tells me about some golf buddy of hers that has these symptoms and now she knows what it is. If the person believes her that migraine can be so weird, they seek help and get better too. So many people never find the forum as others have said. Many are probably like me - got better, resumed life and got crazy, wonderfully busy. I just drop in sometimes to try to spread hope.
Vestibular rehab won’t help you when you’re really sick. You’ve tried several meds, but you haven’t tried them all. I was as desperate as the most desperate MAVer there ever was. That was 5 years ago and now feels like a past life.


#80

— Begin quote from “NickWatkins”

And good luck on your crash. Hope it doesn’t linger. Is this your first one?

— End quote

Thanks Nick, it was short lived and i am back to about 75% - i hope in the next few months i will go higher and higher :slight_smile: I have only put on a little weight as a side effect, am a bit irritable at times, but this is a small price to pay for my life back.

Also i know that pizotifen itself doesn’t cause weight gain - it increases appetite which increases weight - got to be disciplined! But i love food! haha!

How are you? I really do know how you feel - the swaying killed me too - walking as a huge issue. Rest as much as you can, but do force yourself to do little walks around the block everyday x


#81

wtc how is ur walking now? how long have u been on piz for?


#82

Hi Sarah - i’m on 3 tablets of piz at night so 1.5mg. I take this around 9pm.

My walking is so much better, i rarely feel like i’m walking on water or being pushed and pulled, or suddenly falling. This still happens occasionally, but it is so much better than before.

I will also say that with time, you learn to function with the worst bits of migraine, sometimes you have awful days but the majority of the time, you are ok. As long as you eat well, sleep well, take your meds and stay active as possible (This is still only walking for me.)


#83

— Begin quote from “NickWatkins”

Sites/forums like these are just so disheartening. They’re meant to help, I know, but all they do is suck the hope right out of you. I see so many members who joined this forum in 2004, 2005, 2006, and they’re still visiting the site in April 2014, asking the same desperate, unanswered questions they were a decade ago.

— End quote

The ones who get well are less likely to come back to post than those that have ongoing problems - so even if 90% of patients initially diagnosed with migrainous vertigo were sent into remission, the forum would not reflect that. So you can’t conclude that nobody gets better!


#84

True. Lots of people get better, and don’t come back and post.

I’ve had this since 2005, and I’m one of the rare examples of somebody who can’t completely get ‘it’ under control.

I’ve had some years with very low symptoms, some with hardly any at all. Currently, I’m in a stretch of better periods and worse periods.

I’m currently in South Africa for work, and my schedule of lots of travel at the moment has made me feel atrocious and is not conducive to this condition. Right now, I’m rocking swaying and feel about as rough as you can get. But I’ll push on, get some rest soon and hopefully brings things back to a manageable level. I found it very hard, but just take one day at a time. You can’t control the future.

Most get this nailed and forget about it, the majority get it managed. Keep on pushing.


#85

Hi All,

I’m new to this blog but it’s been so great reading that there is the possibility of recovery.

I’m 28 now and had my symptoms start in July last year with them becoming increasingly worse for 6 months or so - it started off with a vertigo attach and after that there have been imbalance, dizziness, head pressure, ‘tilting’ and also a related anxiety situation where I was even afraid to leave the house on my own.

My workplace were very understanding and I somehow managed to get 6-7 months off work for recovery - I was very grateful for this as I thought I just needed some time and I also got married in May this year! My symptoms (and attitude) got much better during my break and the wedding went well, after which I returned to work. I was fine for the first 2/3 weeks using a phased return although it was a stressful time of the year to join - during this time I was totally happy travelling to work and had my confidence return at being on my own again. As soon as my hormone cycle hit and I went back to normal hours (the week coincided between the two), I felt I could no longer get on the trains and my health has generally been on a downhill curve since.

Unfortunately, I’ve had to resign as I am not able to fulfill my duties effectively and feel that I need to find some part time work in order to decrease the stress and the travelling. This has been really difficult as I really enjoy my job (as far as jobs go) and on days I feel ok, I start panicking over whether I’ve made the right decision and feel like taking back my resignation - this isn’t helping my stress levels.

Has anyone had any experience of part time work making them feel better? I am also worried about being able to get a decent part time job (even though I have a pretty good CV) and worried about how they will react to my taking sick days etc.

Has anyone had any experience of switching to part time work that helped?


#86

I think it’s very important to make your work place understand and see if you can work from home - that way if you go in on days where it’s truly necessary such as meetings, etc - the rest of the time you can work from home - if you profession allows.

Then as you recover, you can look to going back into full time work x