wtc how is ur walking now? how long have u been on piz for?
Hi Sarah - iām 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 iām 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.)
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ā Begin quote from āNickWatkinsā
Sites/forums like these are just so disheartening. Theyāre 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 theyāre still visiting the site in April 2014, asking the same desperate, unanswered questions they were a decade ago.
ā 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 canāt conclude that nobody gets better!
True. Lots of people get better, and donāt come back and post.
Iāve had this since 2005, and Iām one of the rare examples of somebody who canāt completely get āitā under control.
Iāve had some years with very low symptoms, some with hardly any at all. Currently, Iām in a stretch of better periods and worse periods.
Iām 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, Iām rocking swaying and feel about as rough as you can get. But Iāll 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 canāt control the future.
Most get this nailed and forget about it, the majority get it managed. Keep on pushing.
Hi All,
Iām new to this blog but itās been so great reading that there is the possibility of recovery.
Iām 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, ātiltingā 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, Iāve 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 Iāve made the right decision and feel like taking back my resignation - this isnāt 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?
I think itās 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 itās 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
Hi Nick, i just wanted to say even if you dont get to 100% things get better and you learn to adjust. I was really chronically bad, i never had a moment without rocking, spinning, tiiting so badly i thought someone was lifting the bed and i was slipping off. I had nystagmus on a number of occassions the first was the worst and the catalyst for the vertigo. ( i stilll get it occasionally) HOWEVER i am alot better, i can sleep without tilting, i rock sometimes but not as badly, i can function a lot more and have some good days. You have to let it go, stop worrying and say F-ck it, i have this, it could be worse ā¦ I obsessed with a cure, meds and wanted a time frame as when i would get better. After i let all that go, and didnt put pressure on myself things gradually improved, when im feeling bad i take it easy and do the minimum. You are young im 40+ so it hard as life should be care free and easy for you, but having said that your recovery should be better as your brain is also younger and can adapt a lot better than an older brain. Movement and exercise will help you, do what you can without going over board, it helps retrain your brain and feels like hell in the beginning but slowly daily, do it. I find a computer screen screws me up so i limit time on it. Lifestyle is a big thing, be as healthy as you can, early nights if nothings on, good fresh food, water, etc and relax. Im not a 100% and maybe i never will be but life goes on, time goes by and time is what will make you better and yeah many people recovery totally and never write about it cause it gone, a distant memory and they are off enjoying life and most of them are younger like you, so dont have a time frame but know more than likely odds are you will get back to normal it just going to be shitful before you turn the corner.
becd what kind of treatment have you had? what has helped?
Iām feeling about 65-90% better currently (it varies depending on barometric pressure, which appears to be my main trigger).
If I keep improving, Iāll post my success story in the next few weeks. There is hope!
Itās been awhile! So I was put on zoloft and ssri like u mentioned above and I am so much betterā¦not 100% but I am functioning and drivingā¦I tried to stop taking it and went right back to where I was so I deff think itās what has helpedā¦Iām supposed to be taking topamax but havenāt yet because Iām worried about the side effectsā¦the dizzy is still there sometimes but itās weirdā¦like when Iām going through my daughters closet Iāll feel like itās sucking me in or if I get over heated or looking downā¦but I can deal with it however when Iām driving I still have problems and driving at night is still out of the questionā¦the headlights from other cars make my eyes tight and pull and then go crossedā¦so Iām going to go up to 50mg on the zoloft and maybe the topamaxā¦Iām wondering if itās seratonin deficiency? Itās expensive to test for so most of the time they will dx based on symptomsā¦so look that upā¦I know Iāll never feel ānormalā again but Iām so much betterā¦has anyone else had problems driving at night or found a way around it? The time change is about to happen and then it will be dark earlier and I have to pick my kids up from practiceā¦I have to find a solution soon but I am so thankful to have some control back in my life
Hi All,
As I mentioned before, Iāve had this for over a year now. However, my main obstacle at the moment is just my fear of going out on my own - Iāve developed some kind of agoraphobia, which the neurologist said was entirely normal for someone with a dizziness condition. If anyone has a way of beating this (other than just forcing yourself to go out!) Iād be very grateful if you could share this. I donāt have much will power and am quite chicken with difficult situations :S
That being said, Iāve managed to do alot of things this year without much disruption from this awful condition - including getting married and travelling. I have had to quit my job as it was getting quite stressful and this had an effect of increasing my symptoms such that i felt that i was back to starting point.
Iām now on the hunt for a part time job with a closer location.
For anyone looking for suitable meds - I am currently on Dosulepin. I have certain conditions that prevent me from taking the other drugs suggested (low blood pressure, underweight, PCOS). However, these meds have helped me SO much! I could feel a difference pretty much as soon as I started taking them (around Feb this year). 
Hope this helps somewhat!
Itās really awful - and even worse because you look fine on the outside, people think you are fine! 
how long have you had this condition?
Been on topamax a few days nowā¦i havenāt noticed any side effects yet so Iām hopefulā¦I go to the dctr tm for a recheck on my medsā¦and I finally got the 1-2-3 heal your headache bookā¦Iām telling u if u havenāt read it u need toā¦my library got it for me and I actually sat and read the whole thingā¦it was an eye opener I didnāt realize my neck and back pain could be my migraineā¦it was like he wrote the book for meā¦if you havenāt read it find itā¦itās amazing and actually made me feel hopefulā¦Iāve felt yucky lately but also been slipping on my dietā¦but for a couple months I felt greatā¦now Iām hoping the topamax will even it all outā¦my daughter is a cheerleader and the first game is coming upā¦the thought of sitting with all those people and lights is terrifying so I hope it calms down by thenā¦I want to live my lifeā¦we canāt give up!
Iāve been telling myself all day today that Iāll go out for dinner with my friends tonight but I just canāt work up the courage to do so! Havenāt left our house since last saturday and itās so frustrating though I feel like iām not doing anything to help myself either
Hope you managed to sit through the cheerleading 
Could you let me know some more details of the book (I live in the UK so might be a bit more difficult to find here!)ā¦
Thanks!
mine started in 1998 and iāve been to numerous specialist without much help, the migrains are less frequent but the vertigo and anxiety/panic attacs still keep me at home most of the time. one specialist with a phd told me that the inner ear is a complex area and there is a lot they still dont understand about it. he said for me the best they can hope is that it will just go away on itās own like it has for many of his other patients. that was over 10 years ago and it hasnāt gone away.
i used to travel, take vacations, go to public events around lots of people. NOT ANY MORE ! just recently was talking with some family members about going out of town on a fishing trip, just thinking about it braught on an attack that lasted several days, i imediatly backed out. iām just so happy that i got my disability approved so that i can can survive financialy because i dont see how anyone can work a full time job with the symptoms i have.
maby youāll be one of the lucky ones that it just goes away on it;'s own. we know how you feel. wish you the best !
Thanks paulj!
Sorry to hear that youāve been suffering for so long! It really sucksā¦
Mine is at a stage where it comes and goes a bit - I am feeling more positive now (until another attack hits and then Iām back to being a scaredy cat again!).
Itās so difficult to explain how you feel to the people around you that have never had to even think about leaving the house on account of being ill. Theyāre all very supportive but only people who have been through it can really understand.
I hope they figure out a solution to this soon!
I noticed Nick hasnāt posted in this thread since May? Does anyone know how he is doing now? Nick if you see this I have a question for you, have you tried not using any computer/tv screens and using only incandescent light bulbs for a period of 2-3 days? Avoiding all LED and florescent lighting?
I noticed you said you were on this forum 8 hours a day at one point, I am wondering if unnatural light could be one of your triggers? If it is you could be surrounded by it daily without even realizing itā¦I get severe symptoms from any LED lighting and almost as bad symptoms from florescent lighting. LED puts me in a constant state of Vertigo for days after just 15 minutes.
Hope your doing well,
Jesse
Computers for an extended period of time set off my symptoms as well - i noticed my symptoms came back with a vengeance when i went back to work after 8 month sick leave (i have a computer based job), and even after this if i sit on the computer too long.
Iāve read on a different forum that a few people have the same issues with computers too.
SSDIZZY the book āheal your headacheā is really easy to find in the UK - i got mine on Amazon when all of this started. Itās really important that you force yourself to do just one 5 minute walk on your own a day - when i first got this i just walked once round the pavement outside my house - close to home, with my phone. It was scary, iāll admit this feeling is like no other - and incomparable for someone who hasnāt felt it; but you have to keep moving. Even on days when i couldnāt walk at all, i would ensure i staggered outside the front door and atleast 50m away and back. If you seize up your brain wonāt learn to compensate and you will feel worse - itās so important.
Also, keep remembering that you WILL get better - the brain needs to calm, and a combination of time, medication and diet will do this.
Make sure you get the Heal Your Headache book - and adhere to the diet as best you can - it helps! No citrus, chocolate (white chocolate is fine), caffeine, alcohol, msg, cheese, avocado, rasberry, beans, onionsā¦ these are the main things.
Best of luck!
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Thanks whosthatchick,
Iāve actually been feeling so much better for the last few months and agoraphobia seemed like my main problem.
However, today I almost had vertigo again (I felt like the room was just about to start spinning but didnāt - a sensation i havenāt felt for months) and my balance and dizziness was so bad after. It feels like just as you are getting better, it finds a way to knock you down again. Iāve had this condition for 1.5 years now (since July '13) and it just feels like SO unbearably long. I know I should feel lucky that it isnāt more serious and Iāve been reminding myself of that but itās so difficult when you canāt get out of bed.
Iām sorry for the rant - just having a particularly bad day.
Iāve got the book you mentioned and will start reading it asap. Has anything in particular worked for you?