Does anyone get the urge to pee when an attack comes on?
This happens to me all the time, not sure what is going on. Don’t ya just hate it, the last thing I need durning one of these is to have to stumble to the bathroom.
Charisse
Hey Charisse,
I read your posts a while back. I tried topamax but it didn’t work for me. Wondered if you did get around to trying that? Did it do you nay good? Or have you tried any other drugs?
best,
hannah
Hi Hannah,
I tried it but like many drugs they are worse than the mav :shock: I am just treating symptoms right now, plus hormones are kicking my butt. How are you doing? Are you on anything?
Hi Charisse,
I have just started propanonol, a beta blocker, I tried this before briefly but it made me feel very foggy so stopped. I thought I’d give it another try. I only took the first 2 doses yesterday and so far it has made me very tired, the knock on effect of this is I feel spacier as being tired is one of the triggers for the dizziness. Like you, so far any drug has made me feel worse rather than better.
I am going to try to stick with it as I am currently desperate due to the light sensitivity I am experiencing along with the spacey feelings. Sunlight is way too bright and the too bright light in my eyes has the knock on effect of making me dizzier. I just don’t see how that symptom, which has been hanging around for about 8 weeks now, is going to go anywhere fast without a migraine preventative. I just wish I could find a preventative that works for me, rather than gives me a load of side effects without doing anything for the symptoms.
Before this light sensitivity hit I wasn’t 100% clear that migraine was the problem. I recently had a consultation with a very good neurotologist who said she though my original problem was vestibular neuritis - damage to my balance nerve due to a virus. This then triggered an underlying migraine problem and the reason I haven’t recovered is the migraine. My dizziness is now down to the silent migraine attacks.
Hormones also kick my butt, the one upside is I have to take a drug for reflux which has stopped my periods, which I am genuinely delighted about.
Have you ever tried a beta blocker for the MAV?
best,
Hannah
Hannah,
I tried enderal some time ago and it made me very depressed. I haven’t really tried any of the others though. My blood pressure is normal to low sometiimes and I did’nt want to lower it anymore. The feeling tired is not something I need more of :oops: I tried Diamox and got worse from it. These drugs seem to just make the same symptoms worse for me. I have been told by way of CTs and mri’s I have a semicircular bone dehiscence, cyst on the pituitary, dics herniations in my neck. I can’t take the bright lights either. I have always had to wear sunglasses outside and in the stores. I did once have a visual aura after being on the computor, but thats the only time. I can still remember the pattern of it.
I don’t feel I have the symptoms of the dehiscence. I can’t stand for long periods, well not even for 5 min otherwise I get dizzy. I feel I am classic for mav, but how the heck can you get well if you can’t take the cure lol.
Charisse
Hannah,
I tried enderal some time ago and it made me very depressed. I haven’t really tried any of the others though. My blood pressure is normal to low sometiimes and I did’nt want to lower it anymore. The feeling tired is not something I need more of :oops: I tried Diamox and got worse from it. These drugs seem to just make the same symptoms worse for me. I have been told by way of CTs and mri’s I have a semicircular bone dehiscence, cyst on the pituitary, dics herniations in my neck. I can’t take the bright lights either. I have always had to wear sunglasses outside and in the stores. I did once have a visual aura after being on the computor, but thats the only time. I can still remember the pattern of it.
I don’t feel I have the symptoms of the dehiscence. I can’t stand for long periods, well not even for 5 min otherwise I get dizzy. I feel I am classic for mav, but how the heck can you get well if you can’t take the cure lol.
Charisse
Hi Charisse,
I sympathise on not being able to take the cure. It’s my third day on the beta blocker and wow am I tired, and I mean tired, could happily sleep all day. I have some work to do so this is bad. Then again, it beats the topamax which turned me in to a moron and made the dizziness worse. It makes me feel quite desperate sometimes as I know I have to treat the migraine, which means I need to give these drugs a fair chance, namely a few weeks, if I’m going to see if they work or not. Which means I am going to have my best shot at sticking with the beta blocker just in case the tiredness passes and it ends up helping. Although of course, as you say, when you’re dizzy the last thing you need is a sedating side effect. I think the thing that drives me crazy is never knowing whether it’s worth sticking with a drug or not. A friend of mine stuck with amitriptyline for 3 months - it made her worse, never helped and she came off it no better. She went on pizotifen, stuck out 6 weeks of a depression side effect, but that lifted and it ended up being the drug that cured her. There’s just no way of knowing which way it will go, or if you’re wasting your time with a drug.
I have already tried pizotifen, 2 tricyclics, topamax and for a very short time an SSRI. The other option would be another SSRI, or another seizure med - depakote - and that’s also meant to sedate the hell out of you. At the moment a beta blocker looks like the lesser of many other horrible options. So far the only other side effect that may or may not be the drug is a headache that’s been going on, on and off, for 2 days, although that might be nothing to do with it.
After over 3 yrs of this crap I feel I have to do something. Doing nothing worked for a while, I got a lot better for a bit, but then got hit with some stress and a huge relapse. As long as I don’t find a drug I am a sitting duck just waiting for a relapse to hit. This could drive a person nuts. I am so sick of having to work like this.
Anyway, I’ll let you all know how the beta blocker pans out, depending on how long I can bear to stick with it and if this damn tiredness passes.
best,
Hannah
Hannah,
I wanted to tell you that I found one of my triggers. I drank coffee and it didn’t seem to be a trigger for me. I was wrong when I gave it up, I have had 3 good days now. I can’t believe the difference. I knew caffene was a migraine trigger but it didn’t seem to affect me till now. That tight feeling in my neck is gone along with the head pressure. I shoild have just stopped it when I read it was a trigger before, but it didn’t seem to matter if I drank it or not, I was still sick. No more coffee for me, I really hope this continues.
Charisse
Need to use the loo right before a migraine. And it seems like I have a really full bladder too if the volume is anything to go by.