Just stopping in and saying hello after being dizzy and nauseous for three months. Started the JOH regimen about 6 days ago. So far I feel a little better but have been missing work for about 2 weeks. It started when I was on a 30 mile bike ride, which was no big deal usually. 27 miles in (3 miles from home) I suddenly felt pretty mortal, super dizzy and I found I couldn't get any power to my legs. Got off my bike and basically lay on the side of the road in 107F heat until I was picked up by a friend. That was August 20th 2014. Since then I have had a really hard time working (I work in an ICU) and more or less kept my vestibular system shut down using super high doses of meclizine which is, as many of you know, not the greatest drug in the world. Eight days ago I went to work but felt so dizzy and weak (and nauseous) that I ended up going to the ER after about 30 minutes. They gave me valium and zofran which worked to a degree but made me sleep for quite some time. So, hopefully these supplements will keep a severe attack down. I have no idea if I can hold up to the stress of being "live" on the job as I'm on a health leave. Can't stay away too long otherwise I will lose my job, so yay for that. My internist referred me to a neuro doc who put me through an avalanche of tests including MRIs, MRAs, video evoke studies, lumbar puncture (and subsequent blood patch), blood work, EEG and some funky audio test. I do not have a definitive diagnosis of MD but I'm pretty sure that's what I have because I have no positive test results for anything else (shwanoma, micro stroke, MS, neuromotor diseases all negative.) It's a shame that there's no absolute way to diagnose this disorder. Maybe in future there will be. The one thing I am wondering, and the reason I am babbling all this is that when I have a severe "attack" or event, my legs become really weak and stiff. I walk not unlike someone suffering from Parkinson's. My lower legs and feet become super fatigued even when I don't have an event but the dizziness is constant. Does this happen to anyone here? I went from biking 30 miles to biking 0 miles. I tried to go out once about 2 weeks ago but only made it 9 miles and that was a push. I felt like I was going to spin off my bike. Also not sure how much longer my g/f is going to put up with this so I'm wondering if anyone had someone walk out on them because of MD. -No more coffee (I switched to tea which seems to not affect me badly or trigger but I still really miss it) -No more bicycling (which I really have to do again, this is getting ridiculous and depressing) -Stay in the house for days (47 years old, and now I'm a recluse) -Friends aren't really talking to me on Facebook any more, which makes me feel lonely (I have 264 friends and 700 followers from my writing side hobby - usually busy on there but not any more) -Cell phone mysteriously no longer receiving calls or texts (the phone is fine, I think everyone is more or less avoiding me) Maybe that's too much info for the living room. I don't really know.
I would check into MAV. A friend of mine was actually taken by ambulance to a hospital once when she totally lost all feeling in her arms and legs; couldn't move them. ER said it was a complication of migraine. A lot of people here have both, Meniere's and MAV. Another thing, since you are early in on this, if everything else is ruled out try to get your doctor to prescribe & support anti-viral meds. It is my understanding that the earlier they are prescribed the least amount of damage and progression of the disease. When I am "dizzy", I take a meclizine. If I have full vertigo attack (room spinning violently for hours) than I have lorazapam that is placed under the tongue; it reduces the severity and length of the attack for me significantly. Good luck
I agree with nicmger, in the forums database there is a thread with a lot of info on MAV, which is migraine associated vertigo and you don't need to have a headache to have MAV. Also see if you can start on an antiviral, (if everything else is ruled out) there are a couple of excellent threads with info in the forums database about that as well. I am sad to read some of your friends are abandoning you, but if that's the case, they were not true friends to begin with IMO. I hope you find what works for you soon and feel better!
In the context of relationships, yes my ongoing despair, inability to keep plans, and limited scope of what I could participate in, all lead to people going away except for some very long-term friends and mostly nonlocal. The isolation was devastating and my heart goes out to you. Now on JOH and antivirals for almost 60 days, I am re-emerging into life pretty much starting over. There is no way to fake wellness with this and either people can hold space for you in it or not. I have forgiven those who could not and appreciate those who could very much more. I sold my bike. I walk alot now and it is ok.
I would recommend not writing off people who appear to be possibly avoiding you. Perhaps restricting discussion on MM with friends since it may be human nature to not want to be around suffering. Even with loved ones we all may want to avoid the topic as much as possible. There isn't much they can do and talking on this forum is a pretty good outlet for all of us. Another possibility is that people are not purposely avoiding you. Since you have had increased symptoms, you may be unable to engage people as frequently as you once did and so they may be feeling like you are avoiding them. Just throwing out possibilities. Don't mean to judge or offend anyone. This disease is debilitating enough; it's tough if we lose friendships as well.
I read your post and happened to see this http://www.stereogum.com/1720422/watch-ryan-adams-berate-a-fan-after-her-camera-flash-triggers-menieres-episode/video/ noticing the 'weak at the knees' comment. Your symptoms also match a blood sugar dip which the exercise could have brought on. I get these and they feel just awful.
You know its funny I just happened to see that too on one of my news feeds. Thanks for all the responses. I am considering trying a test run of potassium chloride supplement in place of salt. After reviewing the anatomy of the inner ear in greater detail, I am wondering if boosting the extracellular potassium would create an osmotic differential high enough to promote nutrient flow into and out of the endolymph. The problem is that most of the potassium in our bodies is intra-cellular so the cells (muscle tissue in particular) will equalize their needs possibly before the elevation reaches such a remote, delicate and relatively poorly perfused organ. I will try this out using basic KCL that I bought at the store (Morton Salt Substitute) and see if anything happens or my condition gets worse.
Have you had your electrolytes checked? Please do that before switching to potassium chloride. You wouldnt be the first one to end up on the floor from too little sodium. That can cause just the kind of symptoms you are already describing. Also caffeine is caffeine. If coffee bothers you, you would be better off eith decaf coffee or tea. Tea can have quite a bit as can colas etc. 'It started when I was on a 30 mile bike ride, which was no big deal usually. 27 miles in (3 miles from home) I suddenly felt pretty mortal, super dizzy and I found I couldn't get any power to my legs. Got off my bike and basically lay on the side of the road in 107F heat until I was picked up by a friend. ' Biking in 107 degree heat is a terrible load on the heart for anyone and at 47 you are not a kid. How good a workup has been done on your heart? Good luck but please dont minimize the extreme circumstances under which this started when reporting it to your doctor.
Yes I have them checked regularly. I've worked in ICU for many years as well so I'm all over it heh. Yes I probably would be better off with decaf, however since I have been a coffee achiever for so many years I weigh the diuretic aspects (renal artery perfusion) of a reduced amount of caffeine against none at all. I know this is debatable but going from 6-8 cups of heavy coffee a day to zero caused me to retain fluid and inadvertently raises sodium. It's a push between CNS stimulation against diuresis, so I have parked myself at a comfortable 1-1/2 cups of light tea a day, a radical reduction in caffeine intake./ Yes it was quite severe. I am not new to biking at all, this was a normal trip for me except the heat index shot up on my last leg of the trip. I've had everything but an echo for cardiac. As many others have mentioned (from what I've found so far), tachycardia is probably a panic fight/flight response to the severe sympathetic overload, not unlike being on a roller coaster, only for hours instead of the normal 90-200 seconds of an actual roller coaster attraction. Good luck but please dont minimize the extreme circumstances under which this started when reporting it to your doctor. [/quote] Thanks, yeah I've described everything in painful detail. Sometimes I think the doctors I deal with can't wait to get me out the door because this condition is not 'easy' to deal with on their end.
Not to beat a dead horse, but i have know a couple of youngish (your age) men who were athletic who were flabbergasted to find out they had had or were on the precipice of a heart attack. You are a pro, you know that. Good luck, be safe.
Thanks for your concern. I don't think this is from a cardiac issue since I have none of the subtle or overt symptoms of ischemia or myocardial compromise. No murmur, no chest pain or tightness, only tachycardia and sadly I seem to perspire with even a little effort such as vacuuming. I am pretty sure this is from sympathetic nervous system overactivity as a result of MD. I do not have these symptoms about 2 hours after I take valium (which is worthless because I need to get back to work) and the Vertisil. Hopefully the JOH regimen will start doing something for me.
That's good. Did someone sugggest above, the doctor most familiar with Menieres is an inner ear specialist usually called a neurotologist? Wasnt sure if your neuro doctor was a neurologist or neurotologist. I suggest reading here and on the db board the posts about antivirals and migraine associated vertigo (MAV). Good luck, stay positive. There are many success stories here.