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.
Thatās good. Iām really hoping Dr. Cherian puts me on a more effective med this time. I suppose itās good he started me on the relatively risk free Gabapentin - heās cautious. Thatās the sign of a good doctor. He didnāt even have me start the Gabapentin until a month of PT failed. So I have trust in him, especially since heās not gung-ho about throwing out medicines like a lot of doctors. I guess thatās one med down, many to go. Everyone says itās all about diet and trialing meds until you find the right one. So howād you get from that 70%-80% to 95%? And Iām located in New Albany, Indiana - right across the river from Louisville, Kentucky, so not too terribly far from Illinois. And Iāll definitely check out that warm rick pack recommendation. Sounds good. Iāll try anything once.
Also, just curious: Did you ever struggle with rocking/swaying when standing? Thatās gotten really bad for me lately. I hope thereās a med that can take care of that, too.
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 isnāt 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 donāt anymore. They are ābroken inā so to speak. I donāt 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 daughterās bday party and doing a bunch if errands before the party. It doesnāt 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 daughterās birthday party with her friends, family party today) and I havenāt 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.
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 canāt thank you enough for taking the time to respond to all my questions. Iām 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 Iāll 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 - itās almost like the physical motion cancelled out the motion in my head
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 couldnāt have for sure and it would work I know i wouldnāt 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¦Iām 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¦Iām like no thanks Iāll have oatmealā¦I find myself watching other people and wondering how nice it must feel to be so carefree and the ground isnāt movingā¦donāt 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 Iām so dizzy I canāt walk and I immediately wish I could just dieā¦they did my MRI and said it was clean and all I could think was canāt 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 Iām like I canāt wait two more years and you can drive me aroundā¦i have my top but Iām going to wait till this weekend to start just so Iām 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 iām not saying it isnāt 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 havenāt got better will most likely have other underlying conditions too.
Migraine is constant when itās angry - i like you have constant rocking and swaying but for the past month i havenāt had it as badly, when i crash it comes back but it does ease up i promise!
But - the fact remains that Migraine isnāt 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 donāt 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.
Lam, no improvement yet. Iām 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 havenāt found the right meds yet. So Iāll stick with the diet until then, tweaking it month by month until I feel better. Dieting doesnāt even bother me at all anymore since Iām so determined not to be dizzy. Iāll 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 McDonaldās or trashy food again, I could be much worse off. But itās just a matter of time and determination before getting there. Good luck on the Topamax, and give it plenty of time to work. Donāt give up after a month or so!
Whosthatchick, I am trying to be positive. Iām 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? Thatās wild. Haha. Iām 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!
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 canāt cease up.
No i donāt have the constant rocking and vertigo when i feel well now, it is very minor indeed - i donāt notice it at all, however when i have little crashes i do notice it. Unfortunately iām having a little crash at the moment - but i was feeling so GOOD for about 2 months, i canāt 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, itās 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 itās easier said than done, i really did feel like you - but have faith x
Well, thank you so much for your input. I try to keep reminding myself that most people who get well move on and thatās why you donāt hear from them, but itās 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!
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 donāt 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 āwellā or ā95%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 doesnāt 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, Iām 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. Iāll definitely bring something up about that when I see Dr. Cherian again in ten days. Iāve seen a few of those 95% people post again later sounding very negative, so I know what youāre 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. Iāll be happy to be at 70% - just as long as itās 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 thereās at least a dozen or so people who seem to have gotten 100% better and donāt really come around at all anymore! And, of course, thereās the hundreds of people who were regulars on the site 10, 9, 8, etc. years ago who havenāt been on in forever, which is definitely a good indication. Iāve seen the posts about Lyme Disease though. Since Iāve only tried one medication so far, Iām 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 theyāre still incapable of working.
You seem to be a pretty severe case from what Iāve read from your posts. Is MAV your only diagnosis, or are you struggling with something else as well thatās exasperating your symptoms? So far, Iām able to drive and walk, but the stoplights kill me (I feel like Iām still moving) and when Iām walking - or standing still, especially - I get that horrid rocking sensation like Iām going to fall over at any second. Luckily, Iāve never actually fallen yet. But youāre 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 donāt 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 hasnāt really done anything. Iām on 900mg now and itās basically like a sugar pill. No positive effects, no negative effects. If anything, it makes me a little sleepy. Iāve been on it since February. And Iāll 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 āfixableā what did he mean by that?