Jersey Girl

I reacted to all the SSRI's and birthcontrol bills and progesterone and even NSAID's except aspirin. I do tolerate Neurotin in small doses and I am taking it at night before I go to bed to help reduce muscle stiffness and help me get a better night sleep.

I used to have pain and weakness on my entire left side that no one could explain and I was dismissed as being depressed. But my dizziness was so intense and constant that I tended to ignore the muscle weakness because I was lying down practically all the time. I was told by a few neurologist that because my right side was dominant that this was normal, but this whole weakness and feeling of numnbess has persisted (the initial intense pain has subsided somewhat). I am noticing the lopsidedness more as other issues improve. I just looked at my left forearm and it too has experienced loss of muscle mass. I have had MRI's of my neck that were normal. Sometimes after swimming I don't notice these sensations but it is short-lived. I wish I knew what happened to cause all these problems.

I have had a lot of hip and leg weakness on the left side since my POTS started and just today I saw an orthopedist who ordered an MRI of my left lower back. I have visible loss of muscle in the left hip area and a sensation of numbness and weakness. I had sensory evoked resonse potentials done last year which didn't show anything. I feel like I am dragging my leg when I walk sometimes, although it generally follows along. Has anyone else had this experience? The orthopedist said it was nerve damage most likely and he wanted to see the results of the MRI.

I initially started my application in November of 2002 for SSDI but just recently received my second rejection. This one came from New York State--I think that most appeals are read at another state's office. I just handed the next appeal to an attorney who will charge 25% of past payments not to exceed $5400. If we don't win he gets nothing. I gave him the article on the Quality of life of patients with POTS from Mayo clinic as well. When I saw him I was feeling better than usual so I don't know if he believed I had a disability but he was willing to learn about POTS. The forms are so time consuming and I was happy to let someone else handle it at this point. Futurehope, what do you think was the deciding factor that awarded you disability payments? I was told that becasue we live so close to Pennsylvania that the judge will be there.

I had extremely bad reactions to Alesse and Prometrium. I find the only medication that helps during those very tachy times around ovulation and mensturation is Xanax 1/4 of a 0.25 mg tablet. I don't need more usually and I only take it during those bad times. And I know what Jessica is talking about. I generally have only 1 week a month when I know for sure that it isn't the effects of hormones making the POTS worse. My period is so off (and late) this month that I having been feeling premenstrual for 2 weeks now--I just want it over with already.

CONGRATULATIONS! I love my two girls.

I attended a yoga class for the first time in my life this past week, and although I couldn't do many of the moves and it was challenging, I think I did feel a little better that same day. (This is after 2 1/2 years with POTS). I can't wait to go back this coming week to see if it happens again or if it was just wishful thinking on my part. Has anyone else tried yoga? If so what were your experiences?

How did you find a good attorney to help you? I called one who never called me back.

I received two denials this year and called an attorney to help me with the appeal to the administrative law judge. But he didn't call me back. Not a good sign I think. How did everyone else find an attorney that won't take everything you're entitled to?

I also have pain that comes and goes in my left ear. I also had an abnormal ENG but normal rotary chair test as well. I think that whatever caused this condition to develop ( most likely a virus) also affected other nerves as well. I am just getting over a cold that backed up a little into my ear and I became even more dizzier than usual. I don't know why the ENG and rotary chair test are prescribed before the tilt table test when at least I was so vociferous in sayng that most of my symptoms were definitely related to being upright. Good luck at Mayo.

I have photosensitive lenses and they have been a big help to me, but I still react to florescent light especially in a grocery store. I think the visual overstimulaltion in the store is somewhat responsible too for an increase in symptoms besides the light.

I forgot to mention that I do have a presciption for Xanax which I take 3-4 times a month when my blood pressure and heart rate are more uncontrollable, like before my period. I only take 1/4 of a 0.25mg tablet. I tried taking it for 2 weeks on a more regular basis and it seemed to loose it's effectiveness at the lower dose. Starting on this medication has been controversial because of it addictiveness but I don't have an addictive personality and I was told to take it this way and not feel guilty since I am suffering with this condition.

The only medication that was somewhat helpful was Neurontin and I can't tell you why. It was initially prescribed for my headaches and stiff neck but I found it helped me in general. I was also on Verapamil because I was having such high blood pressure spikes. It is a calcium channel blocker so it works differently on your blood pressure than a beta blocker. I was on both medications for about 6 months but then I began to notice that I felt worse on them, but that wasn't the case initially. Many of the SSRI'S ( Zoloft, Paxil, Prozac) are also prescribed frequently and I tried most of them without success. I felt good for one day on Florinef but then my blood pressure went sky high and I was incredibly dizzy so I had to go off that. Now, I take large doses of aspirin (1000 mg three times a day), Centrum Silver 1 tablet daily, Vit. E 100 mg daily, Citracal 1 tablet twice a day, CoQ-10 50 mg three times a day, Potassium and Magnesium Asparate 250 mg (GNC brand) once a day, and Mega B-50 by Puritans Pride once a day later after lunch. I only take these supplements in addition to the aspirin with a meal. I also drink the requisite amount of fluids (64 ou) minimum a day. I like Propel sports drink sold by the case in Costco. I also avoid caffeine,-even caffeinated teas- and alcohol. I drink ginger tea to help settle my stomach. I also avoid large amounts of carbohydrates at a given time. I am becoming used to a lot of salads with a little chicken or steak not because I necessarily like them but because I feel better if I fill up with them instead of other foods. I don't drink regular soda and dislike the tast of diet. These dietary changes don't necessarily make my symptoms go away but they don't exacerbate them either. I still need a ton or sleep and rest and must pace myself with frequent lying down throughout every day. I had to force myself to walk longer distances each day when I first could barely walk. I usually had someone with me for my own peace of mind. In the past few months after two years I have been able to participate at a low level in Curves and have found that their leg strenghtening equipment is very beneficial. It has been a long haul and very difficult not only physically but emotionally for me and my family. I have tried acupuncture and neuromuscular massage therapy with limited success (generally the effects were temporary). I hope you can find an autonomic specialist with an autonomic testing lab as part of his/her office to help you. I will not have computer access the next 2 week but hope you can find a physician to help you. I am currently seeing an osteopath who seems to better understand more the inter-relatedness of our body systems.

You can petition your insurance even Medicaid to go outside of the state if the specialists you need don't have the level of expertise or specialized lab evaluation. You should ask for an appeal form to go to whom you want for the care you need. Tell them you'll hold them responsible if they don't give you approval and do it in writing. I had all the same symptoms a few years ago and was discharged unceremoniously from RWJUH after a week without a diagnosis. Many persons in NJ have been approved for care outside the state even with Medicaid. It seems ludicrous that I had to go to NIH to get a accurate diagnosis of POTS. BTW beta blockers always made me worse but everyone is different.

Hope that Tampa fares better than Cape Coral (Ft. Meyers) where my mother and brother live. I can't reach them. On the weather channel it said they were expecting a Category 2 there and got a Category 4 storm. My brother called my sister in California to say that they were llive but my mother had water coming in all her windows and doors. My brother was trying to get back to his house to assess the damage. This storm is not doing what it was expected to do. It must have dysautonomia.

I was told at Mt. Sinai Hospital in NYC that it is not necessary and even contra-indicated to give these type of medications to induce fainting for the diagnosis. I was also "made to faint" by an electrophysiologist who was not up to date and just diagnosed me with vasovagal syndrome when I really had POTS. Not all tilt table tests are equal.

I took Neurontin for over 6 months because of all the headaches and nerve pain I was experiencing. I took 400mg four times a day at one point. It does make you tired but I was already exhausted with the POTS and the headaches were debilitating. It has received a bad rap lately because it was only approved by the FDA as an anti-seizure medication but has been prescribed widely for other conditions mainly because there isn't anything else effective out there to treat those other conditions. I believe 300 mg is the usual adult starting dose. I eventually got hold of 100 mg capsules to help me taper off the medication and took them as needed.

Lorell, I would be interested to know how much and what type of compounded B-12 injections you are taking and where they are compounded. Thanks for sharing about the Cerefolin.

My husband recently purchased a massage chair for me for my birthday from Sharper Image. It was expensive but he knows that I would get some temporary improvement after a deep neuromuscular massage therapy session. I have only had it a few days but it does give some relief for a period of time. You can try them out in your local mall. That's how we found them, because I was with my daughter in the mall and desperately needed to lie down so I went and reclined in their demo chairs. Brookstone also has a similar model for a little less. I also had my first treatment with cranial osteopathy yesterday. I couldn't believe how symptom free I felt, like myself for about 2 hours. It gives me hope that I might be like this on my own someday. The D.O. says he can tell I had some insult to my nervous system and he's not sure he can totally cure me but this type of treatment may help. And it's partially covered by insurance. He's also insisting on me exercising and eating well and taking supplements.

Natelson won't take insurance either and wants to be paid up front. He no longer has funding to see patients under his NIH grant. I don't know why New Jersey can't have autonomic specialists on staff at major medical centers. The NJ Department of Health keeps saying they wants patients to stay in New Jersey and not go to Philadelphia or New York. Well they're a lot of talk and no action. RWJUH and JFK just wants the patient to fit in a nice category and won't admit that they don't know everything.

Dear Sue, I also live in New Jersey and have not found anyone particularly impressive. I called Dr. Podell's office and he does not take any insurance and is very expensive. I did get an accurate diagnosis from Mt. Sinai Hospital in New York City. A doctor Horacio Kaufmann (neurology department) has an autonomic testing lab in the Annenberg Building, 2nd floor). (He also has a fellow in training in the Autonomic Disorders Research and Treatment Program) He is not the most personable person I have met but Dr. Nahm, the fellow, was helpful. I don't think any physician in NJ really is interested in this condition. The phone is Manhattan is 212-241-7315. They did accept my insurance. I hope you find some answers soon. I think this state is one of the worst for running you around when they don't find a simple explanation for a medical condition and they're not very nice about it. Unfortunately for me the suggestions they made have only helped a little.

I tried many stockings and found the only ones that didn't bunch up for me and cause more problems were the JUZO brand- unfortunately they are expensive, but the cheap ones become expensive when they don't fit.

me too, me too. Hypersensitivity is an understatement--my kids laugh at me because I am so jumpy with noises. I couldn't even listen to a TV except on the lowest volume when I was first ill. I have since bought some soft earplugs for those occasions when noise is unavoidable. I also bought new eye-glasses where the lenses turn colors (photosensitive) and it has helped with the light sensitivity.

Ask your doctor about a small one time dose of Xanax for your anxiety about flying. It helped me.

I'm so sorry that you are feeling this way. I know it was hardest for me when i couldn't drive for a few months. Even now I have to limit when i go out and can't drive for an extended period of time or in rush hour. You should probably get some professional counseling if at all possible. Chronic illnesses do take their toll on an entire family. I also feel the isolation of not working as I did for so many years.