ellepee

Thanks for the reply! I was told that this is just a shot in the dark, but I'm going to go ahead with the muscle biopsy I have scheduled this Thursday. After that I think I'm going to participate in some more research for orthostatic intolerance so hopefully between all of this something good will come...

I see neurologists. I saw a cardiologist once which was a waste of my time.

I have also had severe right upper quadrant abdominal pain. This has been going on for about 2 years now and I keep getting blown off. I've had numerous MRI's and CT scans but they turned up nothing. The GI doc said there is nothing he can do and none of my other docs seem at all concerned about this saying it doesn't fit in with my other symptoms. Good luck with the biopsy!

I became sick suddenly one day mid-morning late November 2004 and was diagnosed with POTS in August of 2005. I'm 26 now and am almost to my 2 year mark.

I'm curious as well- my chiropractor has been trying to push it on me and gives me all the 'miracle' stories about it but I have been hesitant. I kind of forgot about it but am also interested if anyone has tried it.

These are very entertaining- it's nice to know others are experiencing the same things- my friends also yell timber when I walk into a room and poke me to see if I fall over. (I know, not very nice of them) I only have a couple to add: -If you get pulled over you beg for the breathalizer instead of the field sobriety test. -Your family has stopped drinking lemonade as you always seem to be collecting your urine and need to store it in the fridge.

I took 50mg 3 times a day for the first week and then increased to 100mg 3 times a day after that. (sunday will be 2 weeks) I was told there was no interactions with the other meds I'm on (midodrine, zofran ODT, ativan, and sometimes vicodin). I'm going to stay on it and next week I have an appointment where I'm going to discuss my concerns over the increased dizziness.

I recently started Lyrica- I've been on it for almost 2 weeks now. It has been helping a little with the pain (my feet don't feel like they are on fire at night anymore) but I think it is making me dizzier. I've had a few very bad days lately but as my symptoms are always so unpredictable, I'm not sure if it is related to the drug so I plan to continue taking it for now. Let me know how it works for you.

I can't relate to that one as I don't use an electric toothbrush, but sometimes things like that that make noise seem to put me in a dizzy trance- I can't handle being near a vacuum anymore.

I was tested awhile back and it showed I did not have Addison's.

Hi, I'm unable to read due to dizziness and listen to a lot of audiobooks (so glad someone recommended these to me!), other than that I watch lots of tv, and do the blockbuster thing where they mail you dvd's- and I also take out movies from the library when I find I have more time. On my better days I crochet a little and I spend lots of time on the phone. ...but I'm still insanely bored as I'm someone who never used to sit still.

Thanks for the responses from my last post about the drug Lyrica. I have gotten back the results of my small nerve fiber biopsy and it was normal. Now they want to do a muscle biopsy and test for a Mitochondrial Disease. Has anyone been diagnosed with one? If so, how does it affect you?

Has anyone tried Lyrica for neuropathy? I've had some bad reactions to some drugs in the past and am told to continue taking the meds I'm already on when I start taking Lyrica. I can't find too much info about it as I believe it is relatively new. Just curious is anyone has had any reactions, good or bad to it. Also, I'm waiting (for what seems like forever) for the results of a small nerve fiber biopsy I had last month. Has anyone had one and what did they find? My docs have already told me there is probably not much they can do with the results anyway...so frustrating!

I've also found the difference between mine to range from 10 to over 50. I've mentioned it to my doctor before and he told me it was nothing to worry about....told me just to worry about the systolic.

I tried Provigil awhile back and did not like it at all- another doc ended up taking me off of it because she said they don't even fully understand how it works. Then again, fatigue isn't one of my major symptoms- my problem is that I'm usually too dizzy or nauseaus to do anything. I did sleep a lot less while on Provigil, but unfortunately it didn't help any of my other symptoms so I didn't find myself able to function any more that I could without the drug. If you suffer from fatigue, it may work better for you. Good luck!

Someone just gave me an article from todays Boston Globe about Preggie Pops. It says they are available at the following stores- A Pea in the Pod, Motherhood Maternity, and Mimi Maternity...also at www.threelollies.com It says they cost about $3.50 for a pack of 7....I'm so tired of the nausea as well, I think I'm going to give them a try. I've currently been using Zofran ODT, but it doesn't seem to work for very long- I guess I'm almost ready to try anything at this point.

Hi, I have been to Lahey Clinic, I don't have much experience in the Cardio dept. there- but I'll just put it this way: I have not had the best luck there...

I don't have a regular cardiologist, but I have had a couple of tilt table tests ordered by neuros. What part of Boston do you live in? One of mine was done at a hospital outside the city and the other was done at Beth Israel Hospital in the Autonomic and Peripheral Nerve Clinic. I still have yet to find an outstanding doc, so I'm not going to recommend any...but let me know if you find one! I'm sure given your symptoms any of the major hospitals in the city you go to will do a tilt table in the cardio or neuro area and hopefully will then refer you to someone who specializes in the area you need.

Personally I didn't respond well to prednisone. I was given IV steroids for a week that made me feel awful and caused me to black out several times for the next few weeks. About a year later I was gien predisone, but it also made me feel worse. I wasn't even on it a full 2 weeks when my doctors had me stop it abruptly. It supposed to make you gain weight and I was losing weight on it and somehow had less energy. I know it helps some but it made me really sick (well, even sicker)

probably 1 adult medium.

I've been very sensitive to light since the onset of all these bizarre symptoms. Brights lights seem to almost blind me. I had a thorough workup by an opthamologist which came up empty - some of the tests were pretty awful! I haven't seen him in awhile but he said my complaints coincided with those of other people with neurological disorders and that not much research has been done in this area. His only advice to me was sunglasses and that there was nothing else he could do for me. He wished me luck and sent me away. I find that I sometimes can't stay in a room if the lights are on and not that I can really tolerate car rides well, but I find it awful to be in a car at night as oncoming lights blind me. I often wear hats which sometimes keeps lights from above from shining in my eyes and wear sunglasses a lot too. I often feel that this symptom is looked over by my docs. Sorry, I have no idea about the connection to POTS but I experience it too. I believe the word for this symptom is Photophobia.

It's awful! I've tried everything too. I can't go anywhere without a plastic bag since I vomit a lot too- I'm almost at the 2 year mark of dealing with this awful symptom and my dentist even says that I'm ruining my teeth. There are times when other symptoms are more prevalent than the nausea, but then there are times when the nausea seems to overtake me and I feel like I can't move. Nothing seems to work- it keeps me from doing so much since I can barely even tolerate car rides, such an awful symptom! I experience so many symptoms, but the nausea/vomiting and dizziness are by far the worse.

1. Elle 2. Age - 26 3. Dx - Autonomic Dysfunction, POTS, small fiber neuropathy, possible MS 4. Age at Dx - 24 5. Boston 6. Symptoms at worst: Constant Dizziness, nausea and vomiting, dehydrated, urinate frequently, numb and tingliness, burning feet, unable to stand 7. Symptoms at best: dizzy and nauseous (without vomiting!) - although I don't really have any good moments 8. Medications/treatments, etc. that didn't work for you - so many....IV steroids, vestibular rehab, I've tried so many medications.. 9. Medications/treatments, etc., that do work for you - I wouldn't necessarily say they work but I'm taking salt tablets, midodrine, zofran, ativan

You should probably ask your doctor to have your blood taken for a complete blood count. A low platelet count can cause bruising. It's still a mystery as to the cause....but one morning (as if I don't have enough things to worry about!) I woke up with bruises all over my body, I also had dark red spots in my mouth and on my body - not sure if you have any of these? It turned out my platelet count was dangerously low. For me it went back up on its own and no one knows why this happened and I'm constantly being monitored from now on- but I would suggest having your platelet count checked- a low count could be a serious complication to a medication and I don't want anyone to go through what I went through.

Just wondering how many of you see cardiologists and wondering if you found it beneficial? I've been noticing my pulse rate has been extremely low in the evening and I've started experiencing palpitations and often feel pressure breathing. I seem to just have such strong cardiac awareness lately and it's a very uncomfortable feeling. I've had contradicting advice from my doctors- one who thinks I should see a cardio while another says these symptoms are normal for people with diseases of the autonomic nervous system. I have gone ahead and made an appointment with a cardiolosist but as I know most of my symptoms are neurological, I'm just kind of wondering if anybody has positive things to say about cardiologists in regards to POTS and am wondering what I should expect or if anyone has any advice of particular questions I should ask. Thanks, Elle