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

Nick,

Not sure where u are located at but as I thought about it it seems like from Jan to spring each year I get more motion sensitive etc. weather. Illinois is not a good place to have mav. Also, mav was always lurking in the back
Of my mind since my diagnosis. zapping my confidence away with what ifs. That would always make me feel it more. Just listening to music or watching good movies always made me feel better. I finally have somewhat conquered the what ifs. My anxiety always seemed to make me dizzy. Relaxing is so important. Chamomile tea helped me a lot to relax. Just trying to think of little things to help you. Also, I would heat up this rice pack found at walgreens to be worn on the back of your neck. That was heaven to me. I still use it.

Nance

Thatā€™s good. Iā€™m really hoping Dr. Cherian puts me on a more effective med this time. I suppose itā€™s good he started me on the relatively risk free Gabapentin - heā€™s cautious. Thatā€™s the sign of a good doctor. He didnā€™t even have me start the Gabapentin until a month of PT failed. So I have trust in him, especially since heā€™s not gung-ho about throwing out medicines like a lot of doctors. I guess thatā€™s one med down, many to go. Everyone says itā€™s all about diet and trialing meds until you find the right one. So howā€™d you get from that 70%-80% to 95%? And Iā€™m located in New Albany, Indiana - right across the river from Louisville, Kentucky, so not too terribly far from Illinois. And Iā€™ll definitely check out that warm rick pack recommendation. Sounds good. Iā€™ll try anything once.

Also, just curious: Did you ever struggle with rocking/swaying when standing? Thatā€™s gotten really bad for me lately. I hope thereā€™s a med that can take care of that, too.

Also, are you able to work full-time at this point?

Nick,

The rocking/swaying symptom was one of the worst. I would get it while standing but also while sitting at tables. I would also get it if I was in a car waiting for my kids to get out of school etc. i felt better when the car was moving. It was bad. I was so very uncomfortable. That got better gradually with the verapamil. I swear by low dose of diazepam too. When I was on the road to recovery, if I had to go to a holiday dinner etc. I would take a diazepam. It helped that feeling. I have not worked full time since but it is because I stay home with the kids. I did work a temporary job in 2012. I was able to do it. I have been looking for part time jobs but the job market isnā€™t real good here. I am in a small town 2 hours south of Chicago. I think diet and proper sleep helps. Oh, I also found out I need to stay hydrated. I was not a big water drinker. The name of the rice pack is the original bed buddy. It kind of smells funky with the first few uses. Mine donā€™t anymore. They are ā€œbroken inā€ so to speak. I donā€™t know why but it relaxed me and made me feel better. Today we are supposed to get storms, I feel alittle off. I am like 98%. But the difference now is it comes and goes. I am still having my daughterā€™s bday party and doing a bunch if errands before the party. It doesnā€™t slow me down and it is no where near what it was like before. I think the weather, the fact that I had 10 fourteen year old girls sleepover last night (my daughterā€™s birthday party with her friends, family party today) and I havenā€™t eaten anything is making me feel alittle lightheaded and slightly off. Definitely triggers. I think that many teenage girls would trigger a normal person lol! But anyways, sounds like your doctor is very good. It is such a trial and error with meds etc. but you will find the right one and dose. Time, meds, avoidance of triggers will up your threshold and you will get better.

Nance

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All the symptoms you just described sound like me to a Tā€¦I feel perfect when driving, but stoplights and waiting in parking lots kill me. Ugh. Anyway, I canā€™t thank you enough for taking the time to respond to all my questions. Iā€™m definitely in an overall better mindset and mood than I was when I originally posted this, though my symptoms are still the same. The difference now is that I genuinely feel hopeful that Iā€™ll find something that will work through trial and error. Again, thank you so much.

Nick I was exactly the same pre-medication. Driving, moving generally was all fine - it ws the stopping that was a killer. IN fact on really bad days I just had to walk around - itā€™s almost like the physical motion cancelled out the motion in my head

ā€” Begin quote from ā€œNickWatkinsā€

Also, Victoria - has the Topamax helped you with the rocking/swaying/loss of balance? Or was that ever a problem for you?

ā€” End quote

Hi Nick,

Yes itā€™s helped and yes it was/has always been one of my main symptoms.

Vic

Thatā€™s good to hear. The swaying is KILLING me lately. lol

Nickā€¦how did your diet work out? Any improvement? I keep slipping up but there are some things I will not eatā€¦if someone could tell me exactly what I could and couldnā€™t have for sure and it would work I know i wouldnā€™t slipā€¦Except coffee omg I miss my caffeine more than anythingā€¦I make evrything I can homemadeā€¦I made a giant calzone the other night and it took me three days to stop the swayā€¦Iā€™m thinking the cheese or the fresh baked breadā€¦does fresh bread bother you? I love to bake bread but now I make itā€¦smell it and then watch everyone eat itā€¦easter suckedā€¦stupid ham and bread and cheeses n my fav picklesā€¦Iā€™m like no thanks Iā€™ll have oatmealā€¦I find myself watching other people and wondering how nice it must feel to be so carefree and the ground isnā€™t movingā€¦donā€™t ever feel bad for having low days,on days if I feel o.k my mood is so good like I have the whole world for the taking then out of nowhere Iā€™m so dizzy I canā€™t walk and I immediately wish I could just dieā€¦they did my MRI and said it was clean and all I could think was canā€™t you just tell me I have 6 months to liveā€¦I think my kids are what make me keep pushing forwardā€¦my sons 13 and every time we go out Iā€™m like I canā€™t wait two more years and you can drive me aroundā€¦i have my top but Iā€™m going to wait till this weekend to start just so Iā€™m not alone for the side effects

Nick, you have to try and be positive. I felt just like you when i got this - i was 24 too. I am now just about to turn 26 and i am up to about 80% most days - yes i still have crashes because i have a migraine brain, but i have recovered. You need to stick with the diet until you feel normal, only then introduce foods back in - this is in line with meds. Ask for a different trial, stick with each one for 6 months - give it a chance. It is TOUGH iā€™m not saying it isnā€™t and we have all had days like the one which must have made you make this post - but you have to understand that the percentage of people who havenā€™t got better will most likely have other underlying conditions too.

Migraine is constant when itā€™s angry - i like you have constant rocking and swaying but for the past month i havenā€™t had it as badly, when i crash it comes back but it does ease up i promise!

But - the fact remains that Migraine isnā€™t forever. Women have hormonal imbalances which set this off again, but for a male, you have strong chance of stabilising. Do everything you can.

This includes making sure you keep moving, but also resting, getting same amount of sleep each night, avoiding Cheese, Citrus, MSG, Chocolate, Alcohol, Avocado and Rasberries, and taking your medication and titrating up to the top dose.

The only reason it takes long to recover sometimes is because people donā€™t quite build up their strength before a trigger sets off again.

I think my mistake has been to do too much too soon when i feel better - think baby steps. You will get there.

Oh and i take 3 tablets of Pizotifen at night x

3 Likes

Lam, no improvement yet. Iā€™m only three and a half weeks into it though, and a lot of sources say it takes 4-6 before seeing any improvement. Plus, a lot of sources say the diet has to be in combination with the right meds, and I definitely havenā€™t found the right meds yet. So Iā€™ll stick with the diet until then, tweaking it month by month until I feel better. Dieting doesnā€™t even bother me at all anymore since Iā€™m so determined not to be dizzy. Iā€™ll gladly eat another pizza in my life if it means feeling normal. If, at that point, the worst thing in my life is not being able to eat McDonaldā€™s or trashy food again, I could be much worse off. But itā€™s just a matter of time and determination before getting there. Good luck on the Topamax, and give it plenty of time to work. Donā€™t give up after a month or so!

Whosthatchick, I am trying to be positive. Iā€™m in a much better mental state now than I was when I first posted this, though my symptoms are exactly the same. 80% sounds pretty good though! So you trialled a different med at a rate of one every six months? Thatā€™s wild. Haha. Iā€™m four months into Gabapentin now. How long after your diagnosis did it take until you found your med of choice and started feeling better? And that is kind of disheartening to hear that you still have CONSTANT rocking and swayingā€¦I was really hoping the right med(s) would take that away, or at least drastically lessen it. Are you able to work full-time? Also, and finally, would you consider yourself one of those coveted success stories we all see on here? Thank you!

Also, what did you mean by ā€œmake sure you keep moving?ā€

By keeping moving i mean making sure even when you feel at your worst you go out for a walk atleast once a day - you canā€™t cease up.

No i donā€™t have the constant rocking and vertigo when i feel well now, it is very minor indeed - i donā€™t notice it at all, however when i have little crashes i do notice it. Unfortunately iā€™m having a little crash at the moment - but i was feeling so GOOD for about 2 months, i canā€™t complain - this will only be short lived.

I trialled meds for as long as i needed to, i have seen so many people on here stopping after 1-3 months, itā€™s just not long enough. Welldone on the gabentin!

Yes i work full time - three jobs actually - and i am freelance so no sick days safety nets either! It took me a while to get here, but even while i was at my most unwell as you are now, i would work little bits for free, just to keep active.

I know itā€™s easier said than done, i really did feel like you - but have faith x

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Well, thank you so much for your input. I try to keep reminding myself that most people who get well move on and thatā€™s why you donā€™t hear from them, but itā€™s the people like you, Scott, and all the others who took the time to respond to newbies on these forums with bits of motivation that are truly lifesavers!

And good luck on your crash. Hope it doesnā€™t linger. Is this your first one?

nick you sound like me when i first got this problem, i was so anxious for any hope or success stories. i would caution you to take what you read on these message boards with a grain of salt. you donā€™t know who these people are or what their particular situations are, this problem is really different for everyone so i wouldnt get caught up in what is happening with others. there are people who have posted on here that say they are 95% but then in other posts they will casually mention that they still cant drive or can hardly walk unassisted. people have different ideas of what ā€œwellā€ or ā€œ95%ā€ means to them. to me it means u can walk, drive well and do everything they want to do with little difficulty pretty much all the time. then there are others on here who have raved about how topamax or another drug helped them so much, only to come back on here and post months later that no, they have lyme disease, or something else, and that they never had mav in the first place, and deny that topamax or the drug even had any effect on them. Bottom line, take what people say online with a grain of salt. just bc other people relapse or get worse that doesnā€™t mean it will happen to you. its probably better to rely on what your drs. experience has been and not random people on an online forum.

Yeah, Iā€™m definitely very, very anxious. Have you ever found anything that helps with your anxiety? Scott and I talked recently, and he seems to think an SSRI really helped him with all his symptoms, not just anxiety. Iā€™ll definitely bring something up about that when I see Dr. Cherian again in ten days. Iā€™ve seen a few of those 95% people post again later sounding very negative, so I know what youā€™re referring to. But I do think a large majority of people do get substantially better eventually, but there is always a risk for a temporary flareup. Iā€™ll be happy to be at 70% - just as long as itā€™s not chronic and 24/7 like it has been for so long.

A lot of the people who have posted under Success Stories certainly seem to have stayed well, though they still check in from time to time. Then thereā€™s at least a dozen or so people who seem to have gotten 100% better and donā€™t really come around at all anymore! And, of course, thereā€™s the hundreds of people who were regulars on the site 10, 9, 8, etc. years ago who havenā€™t been on in forever, which is definitely a good indication. Iā€™ve seen the posts about Lyme Disease though. Since Iā€™ve only tried one medication so far, Iā€™m not ready to go that desperate route yet, lol. There are, of course, extreme cases who have been here for years that have seemingly tried every med/diet/technique in the book, yet theyā€™re still incapable of working.

You seem to be a pretty severe case from what Iā€™ve read from your posts. Is MAV your only diagnosis, or are you struggling with something else as well thatā€™s exasperating your symptoms? So far, Iā€™m able to drive and walk, but the stoplights kill me (I feel like Iā€™m still moving) and when Iā€™m walking - or standing still, especially - I get that horrid rocking sensation like Iā€™m going to fall over at any second. Luckily, Iā€™ve never actually fallen yet. But youā€™re right - everyone is different.

i am an extreme case but before i was treated i could walk unassisted safely and pretty decently (not great but good enough to basically function). i have always been able to drive thankfully, in the beginning it was tough but i could do it. After vrt and the meds i am so bad i am housebound and almost have to get a wheelchair at this point. but I didnt start out this bad. nortriptyline helps some of my dizziness so i still take it but it has made me gain weight like the other million drugs i have tried but i am afraid to get off of it. before this all happened i had anxiety and the ssris helped me but now with the mav they make my dizziness and balance go off the charts bad. i can only tolerate the tryclic antidepressants now and those do nothing for my anxiety/depression. i also have fibromyalgia and im in constant agony from that and from walking so poorly and cant get on a good drug for that either- the best was gabapentin for the pain but it made walking impossible. as for my case, yea so i started out with an ear injury which is what started this all. i think i likely got a fistula which likely healed on its own but it triggered mav which i think is the root of my terrible balance and other symptoms. lyrica briefly helped my balance but stopped working a couple weeks into it and didnt help my pain. i would kill to be able to take an ssri and/or gabapentin etc. for my other issues but i cant or else i will become wheelchair bound/bed bound most likely. my situation is one complicated mess and i dont think i am typical. most people on here seem to be able to at least get on a good antidepressant and it doesnt make their symptoms worse- like at least they can get some help with the mood problems that come with this. if this is your first med donā€™t give up hope yet- has gabapentin made you any better/worse? how long have u been on it and at what dose?

did u ever ask your dr. what his success rate is at treating this problem? its interesting to see what different ones say. dont forget there must be a good bunch of people out there who got better with their first drug or 2 and never had a reason to make it to this forum in the first place. at least i have to think that might be the case??? if u look through their posts i think kathyd and kathyg are good examples of people who got better with their first meds and are doing well.

Who is your neurologist? And no, Gabapentin hasnā€™t really done anything. Iā€™m on 900mg now and itā€™s basically like a sugar pill. No positive effects, no negative effects. If anything, it makes me a little sleepy. Iā€™ve been on it since February. And Iā€™ll have to ask him about the success rate when I see him again in ten days. When I first saw him, he assured me that this is fixable, but I think it may be a little worse than both of us initially expected.

i have seen a couple people in boston ma- where do u live? your dose might not be high enough does ur dr. want to raise it? it also made me super sleepy. when ur dr. said that this was ā€œfixableā€ what did he mean by that?