MNsue

My heart goes out to you. As if being sick isn't enough, dealing with a social security denial is enough to put most of us over the limit. I have had to hire an attorney in the past to help with LTD claims. I know it is not fun. I am glad you have a supportive MD. That will help your case when you feel up for the fight. Rhonda

I am working with a natural path, and she has been very helpful with the constipation isssue. I had it pretty bad for about 3 months. She had me take 1 Tablespoon of molasis every day along with drinking Mineral Water, it seemed to work. She is also having me take 1/4 teaspoon of baking soda 2X per day in water. The Baking soda and mineral water help to balance the PH in my digestive track. I was highly acidic, and when I started drinking the mineral water and baking soda with water my diagestive issues got a lot better. The molassis is also very helpful as a natural stool softener. I have the admitt I don't enjoy the tablespoon of molassis, but it helps if you can stand it. Good Luck, I know it is not much fun. Rhonda

I have worked with a natural path for about 10 years off and on. She was trained in western as well as eastern medicine, so she has been a good person to help point me in the right direction. Her evaluations of my blood pressure helped lead me to a POTS dianosis. I do take an adrenal stress multi-vitamin that has helped ease the adrenal surges I get at night. She has also helped a lot with my digestive issues in the past. I don't think she has a cure, but some things do help. I am careful not to try to many supplements at one time, because I am so sensitive to drugs and vitamins. I am also working with a NAEFT provider that helps with my sensitivities to drugs. This has helped as well. I am not cured, but it can help to manage some symptoms. Rhonda

I have to admitt to warming up a heating pad and wearing it in my sweatshirt on days like that. Is your BP low and heart rate high. That is when mine is the worst. Since temperature control is part of our autonomic nervous system I figure it is all part of a bigger issue. I hope you warm up. Rhonda

You really deserve to have a MD that understands your illness, and how disabling it can be. I had a similar situation 5 years ago when I had a flare of undiagnosed POTS. I had a MD yell at me in the office and accuse me of taking my thyroid meds incorrectly (As if I would have any desire to do so). I was so ill, I did not have the strength to find a new MD at the time. I believe a doctor with that kind of attitude is not looking out for my best interests. I have found a new MD, and she is the reason I was diagnosed with POTS. She was the one that suggested a tilt study after 16 years with this strange disease. A new MD may be the difference in getting some quality of life back. Hang in there. Rhonda

Congratulations, I am happy for you. This illness gives us the ability to be thankful for the small things in life. I hope your walking continues. Rhonda

He put me on 1000 mg of IV solo-Medrol for two days. I will go back in one month and have another 1000 mg administered via IV. I had the last one done yesterday, and can feel the side effects. They are not terrible.

I have had a lot of neuro issues as well. The EMG's and MRI's both came back normal, however when I went to see an immunologist, he felt I was developing a neropathy. I think laurens suggestion about the sweat test may be a good idea. Good Luck, I know how scary this can be. My left leg was dragging in Feb, but I am glad to say it is working much better now. Rhonda

I have heard that some people to react to steroid with muscle weakness. It is one of the more serious ones to watch out for. I think the steroid use make sense for me because I have responded well in the past to steroids, and I have a long personal and family history of autoimmune disease. I don't think it is for everyone. The immunologist did say that he has had very good results with IGG therapy as well when the steroids don't work. Rhonda

Sorry to hear about your mom. My monther also had cancer, and I know it can be a difficult time of everyone. You will be in my thoughts and prayers. Rhonda

I am on 5 mg 3x per day. We tried to back it off to 2.5 due to a rash caused by the flushing. This did not work well for me. I am back to the 5mg 3x per day. I can feel it wearing off, so I am careful to carry some in my purse. If I am busy and wait to long, I get very weak. I usually have down time after my kids go to bed, so if the midodrine wears off a little earlier in the evening, I am OK with laying down and checking out for a while. Good luck. Rhonda

I have finally found a doctor that seems to understand the big picture with my illness. It has come after 15 years of looking for someone to diagnose the crazy autoimmune issues I have had. Today and tomorrow, I will have 1,000 MG dose of steroids. I will repeat this in another month, and will have one more in two months. The goal is to explode the T-cells that are doing damage to my autonomic nervous system, and then re-grow healthy T-cells. I will also start an immune therapy drug that will take about 6 weeks to kick in. This steroid treatment has the least amount of side effects long term. It clears the body in 24 hours, and has not shown bone loss. I have a strange combination of blood work that does not point to a specific autoimmune disease, but because I have improved with steroid use in the past, he felt this was an appropriate therapy. He treats a number of dysautonomic patients and has had a lot of success with this and IGG therapy. This has been a wonderful gift, because last week, Mayo Clinic declined to see me (after waiting 4 weeks for them to review the file my MD sent over). You would think they might feel a little bad for missing the dysautonomia in my last two visits, and grant me a visit with Dr. Low, but I guess that is not going to happen. I am hopeful that this will keep my illness from getting so bad. I am feeling a bit high from the steroids today, but it will be worth it if I can get better. I hope this info can help others. I will keep you posted. Rhonda

Sorry to hear that your eeg's turned up abnormal. Has anyone ever tried to treat you with prednesone or any of the other MS type drugs? I turn around quickly with prednesone. Just a thought. I also take clozanepan- I think it also is for seizures. I take it at night to help with the shakes that wake me up. It has not been too bad. I hope this new drug helps you. Rhonda

Congratulation on getting a diagnosis. I felt like giving my MD a big hug when I got the news. Let's hope you start to feel better. I have done pretty well with the Midodrine. Lets hope the Florinif works for you. Rhonda

5 years ago, I went thru my first round with POTS. They thought it was thyroid disease because I have very high thyroid antibodies, however my levels were normal. I am on thyroid replacement, and my PCP trys to keep my TSH between 1 and 2. This has helped me so I don't feel so sleepy all the time. I was diagnosed with POTS in Feb, and they once again checked my T3, T4, TSH, and thyroid antibody levels. My thyroid anitbody level doubled form 500 to nearly 1000. I am now seeing an immunologist regarding my strange autoimmune response. The antibody test may be the most helpful. I also loose hair right before a major flare. Good Luck

I have the same results. My blood pressure does not drop, but my heart rate increases. I was told that I did have POTS. I have never fainted, and I think it is because my BP does not drop. I did have a very low BP when they did a 24 hour monitor. I have been put on Midodrine, and it has helped. The beta blockers made my BP too low, so they did not work. I hope you can get some treatment. Rhonda

I was able to purchase long term care through my employer. Because it was offered to all employees and my employer paid for a minimal amount, we were all able to purchase policies without health history underwriting. This is the only way that I could ever qualify for long term care insurance. I think you may have a difficult time finding a long term care policy, but it is worth a call. The brokers I know that work in long term care also have financial planers to help you shelter assests to pay for assisted living if you need it in the future. Good Luck with your search. Get a few recomendations on brokers before you pick one to work with. There are lots of companies and even more types of policies. Rhonda

My next meeting with the Dr. will be to discuss treament options. They are waiting for more labs to come back. Have you tried IBIG therapy? If so did you have an antibody marker that made it an option. He did talk about short burst of IV steroids for a flare. I'm not so excited about that option, but it beats no treatment at all. Rhonda

I met with an immunologist today for the first time to discuss my POTS and various other autoimmune issues. I am very excited because he has treated many patients with dysautonomia and autoimmune issues. I was diagnosed with Chronic Fatigue 16 years ago after mono. He noted that I had a positive Ebstein Barr test. He said that Ebstein Barr attacks the immune system and can cause many autoimmune diseases including dysautonomia. I have responded well to prednesone in the past, however without a sinus infection, I was left without any treatment. He thought that he may be able to control my flares of dysautonomia with a number of autoimmune based drugs. I had a number of immune system blood tests done today. We will meet again in 2 weeks to go over the results. I am so excited to have someone that will treat the autoimmune disease that is slowly taking over my body. I hope this will help others in the same boat. Rhonda

I started Midodrine about 1 month ago. It has helped to give me more strenght durring the day. I have developed Rosacia ( a facial skin rash) in the last week. I met with my MD this afternoon, and he is decreasing the dose to see if it helps. I read that Rosacia is made worse with flushing. The midodrine makes me flush all day. I hope the lower dose helps, because I do feel better. Rhonda

I wish I was making this up, but on top of all my other issues I have developed a painful burning rash on my face. My GP thought it may be Rosacea. When I looked up Rosacea it has a vascular connection. Has anyone else developed this after going on Midodrine? I guess I can give up what vanity I have left and exchange it for a good sense of humor. Rhonda

Sorry to hear you are suffering. When I took Lexapro it gave me terrible headaches. Maybe you MD has you on a different medication by now. Hope you feel better soon. Rhonda

I agree with Poohbear. If you have disability insurance with your company you will need to file ASAP. If you are already approved for short-term disability, and they terminate your postition, you should still be eligible for long term disabiltiy given you are still disabled. Quiting your job would not help your status with the health insurance company, however your employer stating you are not physically qualified to work in your present occupation will help your disability claim. Hang in there. I work with many employers (in benefits), and unfortunatly, many do term employees after FMLA. It seems so unfair to employees who are struggling to come to work. It is probably a policy set by an attorney, and not a reflection on you. I will keep you in my prayers. Rhonda

I also had headaches from Lexapro. They were pretty nasty. I didn't get them until I was on the drug for about 6 months. The nausea did go away with time, maybe the headaches will go away as well. Rhonda

I saw another post regarding GI problems. It seems that my GI track has decided to stall out since my POTS started up. I have tried lots of fiber, lots of fluids, Flax seeds and Flax seed oil, acidophilis, Pruns, but nothing seems to help. I feel like my stomach is 3 times it's normal size. It is so uncomphortable. It looks like others have this same issue. Do you take medication for it, and does it help?