ellepee

I take a whole bunch of vitamins and supplements. I take them because of my mito diagnosis and overall they haven't helped me to feel any better but I haven't gotten a cold or anything since I started taking them. I take a lot of supplements as well, but for vitamins I take a bunch of B vitamins, vitamin C, Vitamin E, and Vitamin D. ~Elle

Thanks for the replys! I've been dizzy to some extent for over 2 years now, it has had moments when very intense....but never like this. I usually always feel dehydrated and drink a lot of water- but when I;m this dizzy I'm unable to drink much. This strange feeling in my head almost feels like I drank too much water when I have barely had any.- it's such a weird and uncomfortable feeling. Lights always bother me too and I've noticed my pupils being really big or really small in the past, but they usually don't stay that way very long. I've been at this barely functioning state for almost a week now...

Among all my other symptoms....I have been soooooooo dizzy lately (worse than usual). It has been really intense, kind of like an extremely lightheaded feeling but not in a faint way- kind of strange feeling. I have also noticed that my pupils are gigantic. Has this happened to anyone else?

Melissa, I've been thinking about you and hope you beat this soon. You are in my prayers. I hope to see you back in this forum soon. We all miss you here, ~Elle

I'm trying to get on my parent's insurance as a disabled dependent as my COBRA has just run out and I was denied Medicaid. I just sent in the paperwork a couple weeks ago and am waiting to hear back.....

I get this too, I have no idea why though. My hr goes down to the 40's at night sometimes and it is such an uncomfortable feeling- it feels like my hr is so forceful but then it is so low. I never know what to do- sometimes I try sitting up and that will make my hr go up, but then make my bp fall....

Am I alone, So often these days I feel as if I'm on my own. Something with my body is not right, For over two years now I've been putting up a fight. I go from doctor to doctor who can't figure out what is wrong with me, I sometimes wonder who gave them a degree? I endure test after test, They try and treat me as if I were depressed. Doctors have found many things wrong, But in their textbook cases these results just don't belong. I failed my tilt table test, And so many of the rest? I've had an abnormal muscle biopsy, spinal tap, and lesions in the brain, But these things no doctor can explain. I've been to grad school and am an educated person, Yet these doctors pay not attention when my symptoms worsen. Among so many other symptoms, I'm always nauseous and dizzy, Yet my case takes up too much time and doctors say they are too busy. In my condition I don?t know how I could ever work, But I keep receiving SS denial letters from those jerks. I?m bored out of my mind, I watch enough TV and movies for all mankind. I love this website that has helped me find people whom I can relate to, And for that I say thanks to you! I'm not giving up that me and these others with POTS will be cured, We deserve it after all we have endured. The day will come for that I am sure, With today's technology there has just got to be a cure!

My doctor has told me to take 900mg of CO-Q10 daily along with many other supplements and vitamins because of my mitochondrial diagnosis (they call it my "mitochondrial cocktail"). I haven't been on it very long and haven't noticed any change in symptoms- and it is extremely expensive! High doses of it are used to treat parkinsons disease and mitochondrial diseases among some others.....if you find a cheap place to get it, let me know. ~Elle

I tried to work as long as I could- this was about a month off and on. I have now been unable to work for almost 2 years. -Elle

I had it done as part of research so I don't know the results...although I do know that my heart rate significantly increased and some symptoms like nausea also became worse. What a bizarre test though huh?-such a strange feeling. I wonder who comes up with these things..... ~Elle

Good luck! - let us know how it goes. I go to Beth Israel and am not an easy case either...besides seeing those in the autonomic lab, I have seen many of the other neuros there as well- they keep passing me around (usually this just results in ruling some things out)

Hi- I see Dr. Freeman and both he and Dr. Gibbons are very good. I had no meds during my tilt table and it was done by a technician- I didn't see a doctor the day I had it done. ~Elle

Don't have anything to offer in terms of advice...but just wanted to say I share your frustration and experience all those same feelings. This month I reach my 2 year anniversary of when this all started so suddenly one day. In that time I don't think there has been a moment I wasn't dizzy or nauseaus, or both (among all the other symptoms). I know it's hard but stay positive- I believe its gotta get better for us. Hang in there. -Elle

I usually can't tolerate noise, it seems to put me in a dizzy trance- sometimes noises like a vacuum will cause me the sensation that the world is spinning on me.

Well, I know many of you can sympathize....I just found out I was denied social security today. This is all so frustrating. I called them to let them know about my new diagnosis (the mitochindrial disease) hoping it would help my case....but apparently they have already denied me. I guess the appeal process will be starting soon for me. ~Elle

I have just recently been diagnosed with a mitochondrial dysfunction, I think mitochondrial and metabolic diseases are related. I'm still confused by it all as I'm still learning because this is all new to me. My POTS is most likely caused by this although I can't get a dr. to come out and say it.... and they still have no idea which mitochondrial disease I have yet. Hopefully you will learn more soon. Good luck! ~Elle

Yes, they do think the POTS and everything else is most likely caused by this mitochondrial dysfunction (although I can't get the doctors to say that absolutely). I've had a lot of abnormal tests over the past couple years as I've been searching for answers and no one had been able to piece them together until now. Thanks for the suggestions for the CoQ10. I have to take 900mg per day. I don't want to pay a fortune but I want to get them from a reputable source. (It's frustrating that even the bulk sizes from wholesale clubs like BJ's and Costco only ends up being like a 12 day supply) I've only been taking the CoQ10 and other vitamins for about a week now and I feel like I have so much less energy...I thought it was supposed to help with energy. (Until now fatigue has never really been a major symptom) Right now my docs tell me without knowing the type there is nothing they can do- that I should just take the vitamins and supplements and to continue all the meds for the other conditions I still have (ie POTS, neuropathy)..so hopefully I'll learn more about this new diagnosis soon...

I was told that the muscle biopsy was a shot in the dark as they didn't really expect to find anything...but I guess they were running out of tests to do. It's good to finally have a name to put with things but right now they don't know what type I have so there is not much they can do- all I've added to my regular meds are some high doses of vitamins and supplements. (Does anyone have any recommendations of where to get cheap Coenzyme Q10???) My main symptoms are: nausea/vomiting dizziness & lightheadedness burning sensation in hands and feet tinnitus moments when hearing goes dull numbness & tingliness

Hi- Just thought I'd give an update. It turns out I have a mitochondrial dysfunction which was diagnosed by a muscle biopsy. I'm almost at the 2 year mark of when I suddenly started having all of these bizarre symptoms. POTS was the first thing I was diagnosed with and I'm told I still have that and all the other conditions. Now that I have a diagnosis I'm still as confused as ever as they have no idea which disease I have under this category so I don't really know what to do with all this. But I guess I now know what direction to put my energy into... ~Elle

I've been told that I have small fiber neuropathy and have wondered if it is the same as those you mentioned. I'm so confused by it all... -Elle

This has been something many people have been trying to get me to do for awhile. As no relief has come from my western doctors, I'm constantly hearing stories of how accupuncture and other things have changed people's lives. Personally I've always been a little skeptical and kept putting it off until recently. I actually tried rolfing (http://www.rolf.org/) It was an interesting experience and although I tend to feel better right after, the effects are not long lasting. I'm thinking about giving accupuncture a try next. So many swear by eastern medicine so I guess it can't hurt, I'm just still going to keep on seeing all my western doctors. Let me know what method you end up trying and how it goes. -Elle

Hi- Let me know what you end up doing. I've been putting off dental work for almost 2 years now. I had some scheduled and then all this POTS stuff started so I canceled and I've since lost dental insurance... -Elle

You asked about salt pills- I just pop 1 gram tablets of salt all day. I've been advised to take up to 10 grams per day but I must admit that due to the frequent urination I've found myself cutting back.

Hi- My symptoms are very unpredictable, although I experience many, the dizziness, nausea and vomiting are by far my worst. Dizziness is such an awful thing to experience- sometimes I'm extremely lightheaded, other times the world is spinning on me. At times movement brings these on, but I also very often get sudden waves of dizziness or the spinning or rocking sensation starts when I do not move or do anything to provoke it. (I also feel like I am drunk most of the time and haven't drank in what seems like the longest time) When do you get it - ie only when you stand up or stand up for too long? Sometimes I experience no symptoms with standing when other times I feel like I may faint or become dizzy or nauseaus. I've had many tilt tables- the most recent this past week and they say I definately have POTS- but I often cannot even feel the huge increase in my heart rate. (Some days my bp stays steady when other times on my bad days it drops) How long does it last for - ie only while you stand or only for a few seconds, then your body rights itself? Some form of dizziness is for the most part always present. How does it feel - ie does the room spin or is it a fuzziness inside your head? I get spinning sensation, occassionally rocking sensation or just a moving sensation and also often lightheaded. Do you get worse when in a busy environment - ie a shopping mall. Yes, load noise and busy and bright environments are awful. When DONT you get it - ie when sitting, or riding in the car, or lying down? never Does stress or tiredness or certain foods make it worse? not really sure. Being on the computer make it worse? yes, well usually- since I started this response, I'm experiencing an intense moving sensation and am also extremely lightheaded. I've also had a few of those sudden waves of dizziness. When you move around - ie bend over, turn your head? sometimes.

I don't know what lab it is being sent to, but I'm having the biopsy done at Beth Israel Hospital in Boston. They decided to do this muscle biopsy after a small nerve fiber biopsy I had came back negative. I don't think any of my other lab work has really pointed to a mito disease but I guess I'll see what happens.... Not really looking forward to the muscle biopsy but hopefully it will tell them something about what is going on with me..