issie

I've found that Lemon Balm helps. The capsules are too strong for me, so I use the tinture. I don't know if you can use it nursing though. It helps calm you down and lets you mind shut down to go to sleep.

pots girl, Did they do a sonogram on you? They can somewhat look at your bowels that way and make sure there isn't a blockage or something else. Had a fried with one of those and her pain lasted for months, they couldn't figure out what was wrong. Finally an ER visit, a sonagram and that's what it was. Don't want to scare you, but they need to find that sooner than a few months for a GI doc. I've had issues myself. It is severe pain. Would muscle relaxers help? They help my cramping pains. Hang In There! Keep us posted.

I think it depends on which one you're going to. I got into AZ in about 3 weeks. But, as far as POTS it's not the place to go. They can do a TTT but that's all they did for me. I at least got the diagnosis and found out about the Ehlers Danlos. I think, from what I've read on this site - Rockchester or FL are better. I made my own appointment too. What you tell them when they interview you determines how fast they get you in. Then they send what you say to the doctors then the doctor determines how fast you get in.

potsgirl, You might try something to heal up the digestive tract like Aloe juice and probiotics. This helps my husbands reflux. He says it works for him.

erikainorlando, Good LUCK!!! Keep me posted because I have those tremors and gait problems too. I'd love to find an answer for this. I have the tremors sitting too. So, in my case, it's not just standing or walking that causes the issues. At times, my legs won't pick up. I'll go to get into a car and I'm frozen. They won't pick up. I turn around and sit down. Pick my legs up with my arms and get in. Very frustrating!!!! My tremors are worse when I'm under pressure or stress or very tired.

Arizona Girl, Thank you for responding. I did send you a note. I think I need all those type doctors. I'm new to the diagnosis and still seems to be allot to rule out. I was supposed to see the Electrophysologist at Mayo for follow-up and he got sick. And then my insurance changed so I couldn't see him. I've had adrenal issues for years. The doctor who was trying to figure things out, figured out certain components of things but never put the pieces of the puzzle together for the POTS diagnosis. I've had to do cortisol support at times, especially for surgeries. I have the adrenal surges, hot flashes etc. I feel like I'm just in the beginning of the journey. I had the TTT test and it was confirmed for POTS. I always have 40 or more point increase in pulse rate on standing. I am now having trouble with talking and my favorite thing to do ---singing. I can't do it anymore. I get light headed, feel faint and get naseau. I also have a brain menigeoma. They don't think this is affecting anything though. But, I still need follow-up with MRI by a neurologist. I also have some neuropathy symtoms starting. I have additional tumors too. But, nothing has grown in a year. I have the miagrains that other POTS people have. My real annoying symptoms are tremors and gait disturbances and weakness. I was originally treated for Parkinsons for a year and it wasn't helping. If anything, I got worse. Then the dr. said she thought it was multiple system atropy. I didn't like that diagnosis and went to Mayo and got the POTS diagnosis. This along with the Ehlers Danlos made much more sense. And at least, I don't think I'm going to die in 10 years or less. So, that's my story. Now begins the adventure. Any help from anyone will be GREATLY APPRECIATED!!!!

Anyone know of a doctor in AZ who can treat someone with POTS and Ehlers Danlos? I feel I have the hyperadrengic form. Been to the Mayo Clinic, but they only diagnose, don't treat. My new insurance doesn't cover the clinic here either. Need a good doctor who's open to look at alternative things too. Really like to go natural, if possible. RX's as a last resort. Have tried 4 different beta blockers and Florneff. Didn't do well with any of them. Right now using Emergen C for electrolyte balance and Tramadol (Ultram) for pain. Seems to help. But, need a doctor to do some follow-up testing and try some other suggested things from the clinic. Need someone familiar with the adrenal surges and the hisitimine release issues. Have been dealing with this long before knew that the issues were POTS. Also have tremors and gait disturbance with severe weakness. I don't mind having to travel several hours, if necessary. Hope someone knows a good, insightful doctor who truly cares for their paitents and strives to HELP.

vemee, I really liked your reply. It would be nice for those larger, well known medical establishments be expert in their assessments. But, it was one of these that I had the issues with the Neurologist. Just because the doctor works at one of these doesn't mean that they won't be closed minded and as you said open to be proven wrong. I found that ego and control played into this --as you expressed. It didn't help that she and her colleage were in the middle of trying to establish themselves as experts in conversion and somatzation disorders. It was a no win situation. They couldn't back down because it would undo their "expert" opinion of what to look for to classify someone with this disorder. They couldn't allow the POTS diagnosis, because then all the people they had so neatly put into this box had to be reevaluated. They didn't want that to happen. So you just, write off that unfortunate experience and realize that you've had more doctors confirm the POTS and associated components connected. Don't take it personal, and realize that not everyone will be treated justly or fairly. It's not the end of the road. There must be doctors out there who do understand this complex illness and are willing to look beyond!!!!! I have yet to find one. But, I just recently moved to AZ and hope to find one, SOON! Anyone, know of anyone here?

Erikainorlando, If you went to AZ and this happened to you, the same thing happened to me. The neurologist said my inability to walk or get up, my shakes etc. were all psychogenic. Come to find out that was one of her studies that she and the psychiatrist were studying and they wanted me to be a part of their studies. Well knowing this wasn't true, why would I participate in THAT!!!!! (They wrote a lengthy medical paper on their impressions of what conversion disorders and somatoform disorder symptoms are. This is for all doctors to read. I was able to get into the site to read it.) **Just as a side note ** If we didn't have the POTS as the explanation, it would sound like this could be the problem. She hadn't even tested me and comes in and says that's the diagnosis. She was the first doctor I saw and no other testing had been done. To make a long story short, POTS and Ehlers Danlos was the explanation for most all my problems. (There were a few other explanatory things too.) Even after her colleagues explained all my problems by other (scientifically proven) diagnosis --- She still wouldn't change her diagnosis. Or acknowledge the POTS diagnosis -- of which she questioned. I went as far as I could to get my records changed without going to the State Government of Doctor complaints. They included in my chart my request for medical change, their response, then my rebuttal these will go out with all my medical records showing that her diagnosis should be superseded by doctors findings after her OPINION. I decided, I didn't have the energy to carry it any further. Besides, I now know what is wrong and feel that all my puzzle pieces have been put together. Now, I just need to find a doctor who can help me figure out how to treat these things I won't be returning to that Clinic for treatment, as they just diagnosis you and treatment is found elsewhere. I'm truly thankful for my wonderful pivot doctor--SHE WAS THE BEST. Very through and helpful. But as for neurology ---BAD EXPERIENCE. No help there. I even went so far as to offer her one of the new DINET videos, she wouldn't even accept it. I copied all the information I could find to "Prove my case", and she wouldn't even consider the evidence. Very closed minded and convinced that her OPINION was the only correct one. I hope no one else with POTS goes to her, because I'm afraid that she will do the same to someone else. You can check out a doctors ratings before you go to them. I really advise you to do that. It's not always completely accurate, but at least you can get warnings or praises from other patients before you decide whether to trust your life to them.

I've recently been diagnosed with POTS, Ehlers Danlos, FMS and a few more lovely and complex things. I've had a complete hysterectomy and was using compounded Estriol. It helps with vaginal atrophy and helps prevent cancer. It's better than nothing if you can't use all the estrogens. The doc at Mayo told me to use Red Clover to help balance out my hormones. It sure helps keep the hot flashes at bay.

I too have low Vit D levels. I had been on 5,000 iu for over a year and my levels were still too low. Recently, upped to 8,000 a day. There is really good information on Vit D at the Life Extension web site. (I'm not good with the computer so I don't know how to put the site on here.) But, I've been a member with them for years and the alternative info is the best I've found anywhere. I've read allot too, looking for answers. They do sell their supplements, but you can buy them elsewhere. If you're a member though you can get your blood test alot cheaper than at a doctors office. Then you can call and talk to their doctors and alternative suggestions are given. If you really need to see a doctor, they advise you of that too. When I was on my diagnosis search they told me different things to have the doctors check for. This really came in handy and the doctor was able to rule out a lot of things. I find that my energy levels have improved considerably and I'm finally sleeping better.

Thanks for the replies!!!! I'm soooo sensitive to meds and have never tried the Klonipin. Since the Ativan didn't mess me up, that's why I thought that one would be okay. But, maybe the Klonipin would work the same. Goodness knows I don't need to lose more of my brain function. It seems that it continues to get worse with ==no meds!!!! I just thought it was firbrofog. Maybe the POTS has something to do with it.

I've had a weight problem --all my life. I think I've had POTS since I was a child and am just getting the proper diagnosis at age 50. I've been on the search for sooooooo long. I feel that not being as active as I would LOVE to be, is the reason for the weight. I've tried keeping food diaries and even my husband says its not what I eat. So, the only other explanation is lack of movement. I also have Ehlers Danlos which is hyper-flexibility and it causes allot of pain in the muscles with spasams. They say I have Fibromyligia too. So exercise is nearly impossible. I'm doing good to still be walking. My pluse rates are in the 100 just sitting still. Of course, on the flip, being unconditioned can make the POTS worse too. So, it's a vicious circle. I recently broke my foot off my leg and am dreading rehab. We'll see how that goes. Before I finally got my POTS diagnosis, I was treated for Parkinsons for a year and a half. That's not what it was. The meds made me worse. Then they thought I had multiple system atrophy. Hoping for that not to be true, I went to Mayo and got the POTS diagnosis. It makes more sense than anything else. Just starting on the journey to find help. SOOOO, to answer your question -- you can be fluffy, or even more than fluffy and have POTS.

Thanks Txpots, I'm just now starting my search for meds for this illness. I've known for awhile that I've had POTS and the cardio doctor I went to tried beta blockers which lowered my BP too much. I felt worse on them. Tried about 4 different ones. Also tried Topamax and Florenef. (I think that was the name, it's the salt retaining pill). That one made my BP too high. I swell terribly bad anyway without any more salt retention. I do wear compression garments and it helps keep that down and I feel better. My circulation is awful. I recently moved to AZ and don't have a doctor here. Anyone know a good one? I'm looking forward to this web site and having people with the same problems to talk with. It makes you not feel not so ALONE!! I recently broke my foot off my leg and have a long recovery ahead of me. Finally I've found that if I use Ultram 3x a day and an occasional Advil, I'm tolerating the pain. If it's REAL bad, I take 1/2 Demoral and 1/2 Phenagan. It still messes up the POTS, but at least I can sleep and I feel it's worth the mess up when the pain is sooooo bad. I'm dreading the rehab. I was already almost in a wheelchair due to the POTS. Have to use a cane at times. The physical therapist who came to teach me how to use the walker to transfer into the wheelchair, could not understand why I was having soooo much trouble with it. I have had problems with mobility before breaking my foot off my leg. No one gets it. I hope I can get someone that will be patient with me and understand the limitations. For over a year and a half, I was treated for Parkinsons--which I didn't have. It turned out to be POTS with Ehlers Danlos, FMS and the adrenal surges due to the POTS. They thought I had multiple system atrophy. We went to Mayo and FINALLY got a diagnosis that made sense. I sure do hope that I'll find some answers that will help. I do react very strongly to any meds. I think if the Ativan is the middle of the road, that may be what's best for me. But---first I have to find a doctor who is willing to work with me. And who is willing to try to learn about something that few doctors know about. I think that because so few people have this, they don't want to spend their time educating themselves for just one person. I hope I'm wrong about that and that there are still caring doctors out there. Hope I find one of them!!!!!!!

I'm just learning this site. This is my first time to use it. Hope it's right. Does Adavain work the same as Klonipin? I recently had it in the hospital when I reacted to a pain med they gave me. It sure calmed me down. Seemed to help the adrenal surge of the POTS.

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