Feeling a bit bummed

Hi All

I’m normally pretty good about all of this junk, but I’ve had a real crappy month of symptoms and it’s made me feel a bit low.

I feel I’ve been doing really well to travel for the past 6 months, and I only have 4 left til I get home; it’s been a massive achievement for me as I do feel rough most of the time. I have been really worried about how I’m going to go back to dealing with this junk while working. Since I started my career, if I have been hit by dizziness, and I have no idea how I have made it this far. The thought of just pushing on with it for the rest of my days really concerns me as nobody really (not even my mates) understand how difficult it is trying to lead a normal life being permanently dizzy 24/7. I really do push myself to be normal, and do most things even though I feel really ill with my vision and balance all over the place.

I am rambling really, but I guess I’m just worried about my future with all this. I can’t imagine handling a full time girlfriend again or even having a family. This sounds selfish, but I feel really jealous at times of my mates because they don’t have to worry about all this. Everything seems really good all the time with them.

I have had this ‘under control’ in the past, and have an appt with Hain next week. I should be feeling really positive about it, but all I can keep thinking is he will presecribe a med which doesn’t work and it will be years of trialling meds and just feeling crap til I get this under control. I feel like I was given my chance with Pizotifen which sorted me out once, but failed to work when I had my relapse back in May 08.

Anyhow, sorry for the rant, really need to shake this negativity and doom-like thinking. It all just seems too scarily permanent to me at times - and who wants to live like this?


Know the feeling. I’m wondering if I will have to deal with chronic gastritis as well as dizziness, since that doesn’t seem to clear up either :confused:
Hope Hain gives you what you need.

Hey Luke,

I think you’ll be fine actually. You seem to tolerate drug trials very well (unlike myself) and sooner or later will hit the nail on the head again. If you can travel the world like you have with this, I think a job will be relatively easy. At least when you start working your life will be much more routine in terms of sleeping and eating patterns. In terms of a GF, I have found that while I feel like I’m a wet blanket at times because this thing is clobbering me, most people are fine with it and are patient. You soon find that everyone has something they are dealing with themselves on the health front.

Looking forward to how things go with Hain.

Scott 8)

Luke, I keep forgetting…did you relapse while ON the med, or did you stop it for some reason and then relapsed while off the med?


Hi Scott

Thanks for the reassurance pal - just feel a long way off on getting these symptoms settled down, and it always makes me dwell on the future and all that emotional crap about life…blah blah. I will defo let you know how Hain goes…see him in exactly 1 week. I’ll be interested to see what he puts me on.

Rich - I came off Pizotifen as was 100% well, stayed that way for a further 8 months and then crashed. I tried it again but it didnt work sadly :frowning:

Michael - I know how you feel having a second ailment. I also have Interstitial Cystitis - which is almost impossible to get if you are a man!

Cheers all


Luke - you are having a normal reaction. That is,though, hopeful that you got better once. I’m sure you will again. Please let us know how your appt goes. Are you traveling far to see him?

hi lisa

yeh im traveling from argentina to chicago- so a long way!

Hi Luke

Just want to reiterate what Lisa said. It’s true that if you got better before, you will again. That’s happened to me over and over. And each time I thought it was the end of the line, that life would never get back to where it was before. And each time I’ve depressed myself no end with those thoughts. And each time sure enough, maybe not as quick as I would have liked, but relief has come and normal service was resumed!

Did I say normal ? :smiley: But you know what I mean!


Hey Luke,

Scott’s right, you’ll managed fine in a job. Even though it must seem like your on hols and you’re ill, so how will you cope with normal life - the fact is you will probably feel better working than when travelling, due to eh climate changes, jet lag, disrupted sleep etc…

You will be amazed what you can do work wise with this crap when you have to. I’m currently doing a hugely high pressure job - this dizzy horror comes and goes but I get through and have managed stuff I never thought I could when I have been sick as a dog.

And with regard to the relationship thing. I stayed away from seeing anyone for a long while as I was worried how it would go with this. But I started seeing someone a few months ago and it’s amazing how much the dizzy stuff is no biggie. As Scott said, most people tend to turn up with their own baggage anyway.


Hi Luke. First, I am very sorry you are bummed at the moment and forced to travel with this thing. I do however believe whole heartedly that you WILL be well again. It’s not a matter of IF, it’s a matter of WHEN. If one med worked, another will work. I am so sorry you have to play the waiting game for now. But as soon as you start trialing meds, you will get there. I hated it too. I took klonopin, depakote, elavil, pamelor, and xanax. Only the xanax didn’t give me problems but didnt’ help me. I hated every second of trialing. The side-effects! Every day was a “what is today going to be like”. BUT,…the end result is worth it as you know. And you CANT get there without going through this, so delaying will only make you feel more helpless. I know you can’t trial right now because you are not home, but when you get back, I trust you’ll start.

I have one more question for you. Do you honestly believe you crashed again because you STOPPED the med? or do you think it’s possible you may have crashed anyway? It’s very rare to crash again while ON a proven med but I am just curious if you believe the cause is directly related to stopping the med. You WILL get there again. I don’t think it. I KNOW it. It’s just a matter of when buddy!


Thanks for all the reassurance guys. I really appreciate it. I’m toughing it out at the moment, been hit really bad by flu like symptoms and bad dizziness.

Also my ex wrote to me today saying she is seeing a new guy ( we pretty much split because of this junk), so its all really cheery at the moment! Oh well - guess I will have to find a new lass in a dizzy state!

Rich - I’m seeing Hain & Cherchi a week today, doing all the tests and getting right on the med trials. I’m going to feel crap anyway, so I might as well get on with it.

I really hope I can kick it, and come back on this forum giving encouragement again.

Thanks all


Rich - I think when I came off meds I was fine until something triggered it again - could have been stress…all I know is once I find a med I’m not coming off it EVER if I feel well.

Can you beleive I was symptom free for 8 months totally unmedicated!!!

— Begin quote from “Dizzyrascal”

Rich - I think when I came off meds I was fine until something triggered it again - could have been stress…all I know is once I find a med I’m not coming off it EVER if I feel well.

Can you beleive I was symptom free for 8 months totally unmedicated!!!

— End quote

yeah, that’s a great amount of time. Did another stressful incident trigger it?? With the med on your side, it’s unlikely you would have crashed again. So, you learned the hard way unfortunately but when you get well again, and you WILL, you’ll just stay on the med and that will be that! Having heard of this sort of thing happening, I will not be stopping the topamax ever. I’ll take it to my grave. Keep us posted on your progress Luke. You will make it! I thought I was DYING and I pulled through. you will too!