MNsue

Melissa, I am so amazed by your postive attitiude dispite your struggles. I wish you better health. Do you feel like the IVIG is helping? I started cell cept, and my neuropathy is now improving. I hope the IVIG will do the same for you. You are in my prayers. Rhonda

I am also cold, however, I have been sweating and freezing at the same time lately. In the winter, I usually warm up a heating pad and wear it in my sweatshirt. I am thinking that I need to make a jacket with a liner that can heat up in the microwave that I could wear around the house. This would beat the too old to be pregnant look I have going now. Good Luck. It really is not much fun to be cold all the time. Rhonda

Sorry to say, but my symptoms started at 24 and I am now 40 with my wost flare yet. I wish 40 was the magic number. It took me 16 years to be diagnosed. My stymptoms started after a bad bout of Mono and I have had good and bad periods over the years. Good Luck, Rhonda

Have they done an adrenal function test on you. It may be that your body is not producing enough corisol after the steroid burst. I am on IV metho-prednesone 1x per month for my neuropathy. I know that I feel pretty rotten after it goes out of my system. I feel great on low dose prednesone however. Good Luck. Rhonda

Melissa, Do you think the IVIG has helped? How long do they think that it will take to work? I hope you are recovering. The hospital is no fun. Rhonda

Anyone else have rough nights? I have been waking up exhausted each morning. I can fall asleep easily, however around 4:00am I wake up with tremors and tachycardia. If feel like I can hardly catch my breath while I am sleeping. It is really awful. I am taking Klonipin before bed, and that used to do the trick. It seems to be wearing off. I am looking for ideas? I am wondering if I should ask for another holter monitor. I think my BP is the problem. I took it when I woke up from a nap and it was 90/40 however my pulse was 69. Thanks for the help. I don't know what I would do without this forum. I get more answers here than from my MD's. Rhonda

I have also had numbness in my face, legs, and hand. It is in my left side. I started with the numbness and weakness after having symptoms for about 15 years. Since the weakness started, I am now working with an immunologist. It is all so very strange. Rhonda

My Dr. could not answer these questions for me, but I thought it would be interesting to find out how others with POTS have faired with their neurological issues. Thanks for your updates. Rhonda

Your symptoms sound so familiar. I have had POTS symptoms for 15 years, but started with numbness and weakness on my left side in Feb. The POTS is under controll with Midodrine, but the weakness seems to be getting worse. I have had MRI's and EMG's none have shown anything currently defined by modern medicine. I had an appointment with my Cardiologist this afternoon, and was asking him if he has seen other POTS patients with this weakness issue. He said I was unique to his practice. He was going to e-mail Dr. Low at Mayo to see what insite he may have on this issue. I was told that my Dr. and Dr. Low have worked together in the past studying POTS, so I hope I will get some sort of answer. I will let you know if I hear back from him. I do not have any pain, just numbness, tingling, and significant weakness in my left arm, sholder, and leg. I have started physical therapy to see if I can get some strength back. I am working with an immunologist to see if IV metho-prednesone and an immune suppressant can help with the weakness. I guess only time will tell. Good Luck, Rhonda

Yeah!! Good for you. Sometimes a little media attention is scarier than an attorney. I hope you start to feel better. Rhonda

I'm so glad for you. I hope this works, and gives you some better days. I will keep you in my prayers. Rhonda.

A few years ago I went on Lexapro and had a similar reaction. I am very sensitive to meds and started by taking 1/4 of a tablet in the morning, so it could wear off by night. I was able to work up to 1 pill and took it for about 1 year, then developed headaches and could not take it anymore. I could not take it in the afternoon or evening, or I would end up being up all night. Good Luck. Rhonda

My left side weakness has been progressing dispite IV steriods and a course of Immuran and Mercaptopur that have made me sick to my stomach. I think the Mercaptopur has made the night time Tachy much worse. I surge all night long, and can't function if my Midodrine wears off. I stopped taking it today, and will call my immunologist on Monday to discuss. Anyone else have problems with immune therapy? Does anyone have something that has worked well for them? I am concerned that if I don't find an immune therapy that works, my neuropathy on my left side will progress, but each drug I try makes my tachy worse when I get sick to my stomach. My Cadio told me the night time Tachy was not POTS, but I know a number of other have this. This is so miserable, and leaves me so weak the next day. Any ideas would be helpful. Rhonda

I have had periods of complete remission. My illness did start with a viral infection. I don't know why it comes and goes, but it does. I also have a lot of autoimmune issues, and I think that must be why it has not left completely. Good Luck. Rhonda

I was in the same boat and my Dr. recommended that I go to Mayo. I was declined dispite a lengthy letter and medical records sent by my physician. I guess I didn't know the right people. I went to Mayo two previous times however, they never put me on a tilt table, so they missed the diagnosis. I thought that maybe Mayo would want a chance to make up for their mistakes (and the 15 years I was undiagnosed) and see me, but I guess not. Sorry to sound bitter. But it was a hard pill to swallow. Good Luck to you. I hope you have better luck than I did. Rhonda

Sorry for your troubles. If your health plan is self-insured, the employer has the ability to make the final decision on medical appeals. The employer is the one that will pay the bills, so the insurance company sends appeals for the employers review. I see it all the time, since I am a benefit consultant. I would suggest that you enlist the help of your benefits department in human resources to see if they can look into the coverage of this plan. You may need to ask for the person in charge of benefits at the company. Believe me, most employers are very interested in managing costs. If you can show evidence that the company will spend more in hospital bills if they don't cover your drug, you may be able to convice them to cover this drug for you. Most employers don't know what has been denied until an appeal goes is filed. Best of Luck Rhonda

1. Rhonda 2. Age - 40 3. Dx - POTS 2006, Neuropathy 2006, Hashimostos 2001, Vitiliago 2005, Asthma 1997, Chronic Fatigue - 1993 4. Age at Dx - 39 Had POTS sympotms in 2005, went away after steroid treatment -MD's are still trying to figure that one out. I had 3 years of feeling great with prednesone given once every 6 months. 5. St. Paul, MN area 6. Symptoms at worst: Can't get off the couch. very weak. Not enough strength in left leg to walk up stairs. Tachy all night and day. nauseous constipation 7. Symptoms at best: 1 year ago I was normal. Since November, Normal is more fatigue, and tachy at night. 8. Medications/treatments, etc. Beta Blockers -all kinds, and Imuran -Made me very sick 9. Medications/treatments: Midodrine- helps me function during the day. Clozenpan helps the tacy at night. Working with an immunologist to treat autoimmune issues. So far the IV steroids will hold me for 3 weeks, then my left side starts to get weak again.

I have had sinus surgury due to sinus infections. The only way I can get rid of them is with a combination of Prednesone and antibiotics (Ceftin works best for me with the least side effects). I also use a sinus cleanse system I picked up at the pharmacy (Walgreens). IT's name is sinue cleanse. They are also called netty pots. It is a little pot that looks like Aladins Lantern with a saline solution to rise my sinus. This helps a lot to get rid of the infection and keep them away. I will warn you that any saline rinse will sting a bit when you have an infection. I also tried the fungal rinse. I think it helped for a while. Rhonda.

I have had a bad week with my POTS, and yesterday I noticed that my left leg was weaker again. I am having a hard time going up stairs, and my left foot is tingling. I have had normal EMG's and MRI's. Is this part of POTS? My cardiologist does not think so. I am concerned that this will become more progressive? I know a few members of this forum are bed or wheelchair bound and wonder if it because of the specific muscle weakness or fainting? Mayo declined to see me, so I can't get any answers from an autonomic neurologist (Dispite my MD referral to Mayo) If any of you have any ideas, I would love to hear them. Thanks for your information. Rhonda

I have the same struggle. It really is not fun. I take one Tablespoon of molassis every day, and drink mineral water to blance the PH in my system. That has seemed to help the most at this time. I used to be able to manage with acidophilus and flax seeds, but that stopped working this summer. I somethimes think the more fiber I took in, the more I was having problems with constipation. Good Luck Rhonda

when my POTS is bad my balance is also bad. I also get more weakness on my left side, and have noticed that walking up down stairs is more tricky when I have had a bad POTS night. I wish I could tell you why this happens. My MRI's and EMG's are all normal. However, I have had good weeks where my balance is good enough to ride a very old and and reliable horse. Does your balance issues come and go with your POTS ups and downs. Rhonda

Thanks for the suggestion Carolyn. I will check into it. Rhonda

I have had Asthma for about 9 years and have rarley needed to use albuterol, however since my POTS diagnosis, my Astma symptoms have been worse. I feel like someone is sitting on my chest, and my voice is horse most of the time. I went to urgent care and they took a chest x-ray to rule out anything unusual. I think it is my asthma, however I am afraid to use my albuterol inhaler because it triggered tachycardia on the best of days. Now that my tachycardia is more presistent, I am afraid to make my POTS worse. Has anyone with Asthma and POTS been told not to take albuterol? My only other option is more steroids. Thanks for your ideas? Rhonda

Weakness Rhonda

Janet, Thank you for the additional information. I agree that if my daughter started to show symptoms of dysautonomia, I would want her started with the ANSAR study. The last tilt I had was pure torture. They left me tilted over 15 minutes with a HR over 160. I couldn't catch my breath enough to ask them to stop. I was litterally gasping for breath and crying before they put me down. I will only do another study with a family member in the room to be an advocate. I am happy for another alternative. Rhonda