8 months of chronic imbalance

Hello all,

its been 8 months now since this nightmare started. Mentally it has been the toughest challenge I have ever faced and I am feeling exactly where I was 8 months ago as far as symptoms go.

For those who don’t know my history, this all kicked off after a prolonged period of stress with the final straw being the break up of a long term relationship I had been in. For many years I had been pushing to relocate from UK to Switzerland with my company, and finally got the opportunity. I arrived here in Zurich in January this year, and the first few months had been so busy, having to find a permanent residence to live, settling into my new job and also maintaining a relationship whereby I was flying back to the UK every other weekend to see my then girlfriend.

In March I decided the relationship was not working for me, so flew back to the UK broke up with my girlfriend and planned a 2 week vacation in Bali to see my best friend and get away from everything.

A couple of days after the breakup, and arriving back in Switzerland the dizziness started. I just woke up one morning and I felt off balance, and like things were moving around me.

To this day the symptoms have stayed pretty constant. That is, feeling like I am constantly off balance, especially when standing still and also things moving in my vision slightly also. The doctors over here believe I either have MdDS or MAV but are not sure, because I didnt respond to 2 migraine preventative treatments.

I guess I am writing this, as an update and also to get my thoughts out there.

I am getting closer to the point now, where I am going to give up my job here and move back to the UK. It will be like giving up a dream but I don’t think it has helped that I am over here on my own dealing with this constant illness without the support of family or friends close by. A lot of days consist of me battling to get out of bed, going to work, trying to sit down as much as possible to avoid the off balance symptoms, working all day, leaving between 5-6 and then just laying down at home. That is certainly no way to live right!? I mean I am only 27, i should be out with friends trying new things and fitting into my new life, but its just so hard.

I am flying back to the UK next month and will see Dr Surenthiran. Pending that meeting, I will then decide what to do. I still live in total disbelief that this is really happening to me. Its such a strange condition to live with.

Richy your description of your daily trials of going to work etc reminds me exactly of myself when I got this. I was a solicitor and I tried to continue working for the first year. I was not in a foreign country though and that must be really tough. I too was 27 when this struck me.

All I can say is that you are on the right track (a lot quicker than I was) and I have every confidence that Dr Surenthiran will give you an accurate diagnosis and good treatment plan. You are seeing the right person of that I am sure.

Good luck and let us know how your appt goes x

Richy,

Don’t give up.

I 110% assure you have been through the worst of this already.

Just 1 more month and then you are going to see The Guru, and the only way is up from there on in.

Please don’t make any hasty decisions before getting well under way on a treatment plan with Dr S.
There is no need to give up your dream.

MMx

Hi

I just wanted to say hang in there. The first year was hell. After being initially disabled by this illness, unable to work and thinking it would never go, I did get my life back and have intermittently (I’m freelance) held down a really full on job, at points working all hours and managing it. I have lived with this condition for about 10 years. I’m not going to lie and say it’s always been easy, but nothing has ever been as hard as that initial stretch before I found a drug that controlled it. By the way - 2 drugs is nothing - I tried a number before hitting on the right one. I have long bouts of feeling pretty much normal (with various restrictions to diet and avoiding triggers etc.) In the first year I lost faith that, that could ever happen. This feels so much a part of you that it’s hard to imagine it ever going, but it can and it does.

I agree with the poster who said you should hang in there in your current job until you have seen the doc. Sometimes you have to modify your lifestyle to accommodate this condition, and it may be you do decide to go back to the UK. Then again relief may be just around the corner. I feel for you, I really do, being away from family and friends with this sucks, but it might be worth seeing what the doc says first.

H

1 Like

thanks all for your great responses. I will not make any decision before seeing Dr Surenthiran… counting down the days now…

it will be interesting to see what he makes of my constant feeling of unsteadiness when standing.

Hi Richy,

Do you get the unsteadiness when walking too? Didn’t you mention you found a med that helped that but you had to stop it bc of a side effect? What med was that? How much did it help? Maybe you could try another one in the same class?

RichyF
Standing still (or trying to) has been with me since the beginning of mav. I’m always looking for something to hold onto to steady myself. I’m usually jiggling from one foot to the other - my husband is used to me nudging his elbow so he can grasp it if we stop to talk to someone. Since getting onto meds walking has been fine tho I find that I need to walk quite fast - my head always seems to want to go faster than my body! I think this is all part of MAV - eyes & body not working together. It will be interesting to hear Dr. S’s reasons.
I saw a post on Dr. S’s website from a patient who said he had told her that he doesn’t prescribe anti-histamines for mav because they will never recover fully if they do take them. Doctor Granot has prescribed Periactin for me (& other forum members) so reading that comment has naturally made be worried. I know you will have a raft of questions for him but if you get a chance could you ask him about the anti-histamines please?
Richy I hope he has a good treatment plan for you so you can get your life back.
Barb

— Begin quote from “sarahd”

Hi Richy,

Do you get the unsteadiness when walking too? Didn’t you mention you found a med that helped that but you had to stop it bc of a side effect? What med was that? How much did it help? Maybe you could try another one in the same class?

— End quote

Hi Sarah

I also get unsteadiness when walking yes, it feels like my legs are being moved from side to side even though i am actually walking normally. The sibelium did seem to help, or at least mask the symptoms slightly, but it made me feel very depressed. I will discuss meds further with Dr Surenthiran.

Thanks for asking