issie

My sister just commented to me that she has been taking an Advil every night and forgot it last night. Her night sweats were back with a vengence. She feels the Advil helps with the sweats. Intersting to see if it would help others too.

Simmy, You could be one of those (Lucky?????) 2% of men that get the "MaNopause". Let us know if there is a connection w/the sweats and hormones!!!!

I just watched a U-Tube video by Dr. Mark Hyman, he really recommending magnesium. I wonder if it would help these issues? The only thing, I know magnesium can lower your BP. It's one thing they give to pregnant women with high BP, but it helps cramps and helps to MOVE things through. Might help.

Simmy, It could be menopause, men have it too. My dad has horrible sweats, due to treatment for cancer. It would be interesting to see if your levels are off. Since so many of us women have problems with hormones, it could be part of the problem. (There is a very good blood test that Life Extension provides, that test all kinds of things for very reasonable. Then, if you're a member, they will analyze your test and make suggestions of what type of natural supplementation to try to correct the imbalances. ) I think my dad has POTS too, but he's too old to go through the testing. He's had hormone issues since he was in his 40's, and has so many symptoms like mine. I had endometrosis. It's a wonder. But, then again, it could just be your meds.

Official guinea pig here. I do believe that's the type of POTS I have the hyperadrenergic type. I really got sooooo much worse in that year and a half before I got my POTS diagnosis and stopped all those medicines. I thankfully stopped the meds. a few months before I went to Mayo. I think that would have messed my test up even worse. I was mis-diagnosised and mis-treated. Trial and error, she was at least trying to help.

Thank you for sharing this with us. Advancements are being made. One day, they may get it all figured out. Here's hoping.

Soooo, if I needed less dopamine and was on the Wellbutrin it increased it. So, if this other drug does work for POTS it decreases it. Therefore, NO WONDER it made me worse. Not to mention the sinement. Being treated for a year and a half for something ---I didn't have. OHHHHH!!!!!!!! Okay, will the damage from the mis-treatment, get better? I guess time will tell. Thanks for explaining.

TXPOTS, How does Wellbutrin compare to Methydopa? At one point, when they thought I had Parkinson's, they tried sinement and It was too strong, so they put me on Welbutrin. I took it for awhile, and in some ways it seemed to help. After time, I went downhill. I got much weaker, my tremors were worse, and it got to where I had to use a cane and needed a wheelchair. I decided that what they were doing was making me worse and stopped taking it. Then went to Mayo and got diagnosised w/POTS. My neurologist, before Mayo, had decided that I must have Multiple System Atrophy because the dopa products didn't work.

I tried to find a book entitled this.....wasn't able to pull it up. Did you write it? What is it like?

You are so welcome! Hope she doesn't have it, but if she does ---please consider the natural progesterone.

POTS Dad, To my knowledge there is only one way to find endometrosis. You have to have a laproscopy done. It is a surgery and they put a scope into your belly button to look around. As far as I know, that's the only way they can find it. It can be very small, like pinpoint and can still cause pain. Everyone has a different pain tolerance. With endometrosis, with time, scar tissue can form adhesions and if they pull on the ovaries, that is very painful. The thought is, that there is an imbalance in the estrogen/progesterone ratios. They feel that the estrogen is too high. The solution is to balance the imbalance. There are natural bioidentical hormones that are applied to the skin. They can be obtaiined from the health food stores if you get the pharmacetical grade, or they can be compounded by a pharmacy at a compounding pharmicist and this requires a prescription. One of the BEST books I've read on hormone replacement is by Dr. Johnathan Wright. Also, there is a book --What your doctor may not tell you about Perimenapause. Even though this isn't where your daughter is at, it explains the process of the hormones, very well. My endometrosis was sooo painful. I do not recommend though that she take massive doses of the Anaprox, although that was the only thing I found to help the pain. As I said before they did damage my liver. My life revolved around when it was my period. I had all together 8 abdominal surgeries, because I had wanted kids. The last one was a hysterectomy at age 36. Because estrogen was the culprit and my adhesions were so bad, I had everything taken. I then stayed off hormones for 5 months so that if they had missed any spots, it wouldn't come back. Then the bioidentical hormones. My pain was over and my colon issues resolved. My friends that had their ovaries preserved, had to have them removed within 2 years of their uterus removal, because the pain of the ovaries and the endo, coming back. I know this is not what you wanted to hear. But, knowledge is invaluable and I think it's better to know what you are dealing with. I can only speak from my own experience. Some others may have different thoughts on it. But, I did research it to death. If she can get on the progesterone, it may put the endometrosis at bay. Some people have even reversed it. I wish I had known about it before all my trials. It may have prevented allot of pain and surgeries. Don't use the synthetic progestin -- that has all sorts of horrible side effects. Also, don't use the birth control pills to stop the period -- that only ups the estrogen. ( I did that too.) I hope you can find a doctor who is knowledge about the bioidentical hormones and will work with you. There are certain times of the month where she will use it and parts of the month when she will leave it off. Dr. Wrights book tells you how to do it. I think he has recently written a new book. I havent seen it yet though. Hoping the best!!!! Issie

I don't know the answer to this. But, I vote for purple. It's supposed to be a healing color. And we all want that!!!!

I have EDS too. I also have pain in my jaws, like TMJ issues. In fact, I went through adult orthodontics because I couldn't lie on my face because of the jaw joints. That in itself wasn't fun because with EDS you start moving your teeth and then they really move. I will have to wear the retainer for life now. But, it did help. I've also lost bone mass in my jaws and have osteopenia. I think this is a part of EDS. We have pain all over our bodies. My doc. told me that we are always in a state of tension, because we're trying to hold ourselves together. It feels like a really bad arthritis all over. I have osteoarthritis too. It is part of the EDS. I have allot of blood pooling in my legs and abs. and HAVE to wear full body compression daily. It helps hold you together too. It may help!! Hope you feel better. It may be that you are allergic to whatever the vitamin D is in. If it's in an oil state --fish, vegtable - soy --you may be reacting to that. Try a different brand. Some people can't use gelatin caps, etc.

You have allot going on. It is so very frustrating when the symptoms are very complex. That is how it is the world of POTS. It is very complex and everyone may experience things in a different way. The only real way to find out if you have POTS or some type of autonomic disorder is to have a Tilt Table Test done. That is how it is diagnosed. You can do a poor man's tilt table test. I believe there is a thread that tells you how to do it. I have had the sparkles, like silvery stars. I had no headache at the time. The doctor diagnosed it as a silent migraine. I guess that can be one of the symptoms. I don't know about the black spot though. Things can happen with your eyes if you have Ehlers Danlos. I have that too. There are allot of times that my vision will not be clear, kind of foggy. Like in a steamy shower room. Part of that can be connected to the ED. POTS can be connected to ED and be caused by it. As for your legs and veins, the best thing you can do for this is the compression. You need at least 30-40 strength and the thigh hi's or full pantyhose are the best. Blood pooling in your legs and abdominal can be POTS and/or ED. The compression helps this soooo much. As for the anxiety feel. If you have POTS, that is one of the symptoms we all have. Many get diagnosed with an anxiety disorder before we get the POTS diagnosis. So few doctors know about Dysautonomia and they want to put SOME sort of label on it. So, you get that attached to you, when the real reason for those feelings is the imbalance in your body, causing at times some pretty severe symptoms and feelings. Because there are some adrenal response involved, it does cause a fight or flight feeling. Many people do take some sort of anxiety meds and it helps to calm this feeling. But, then the meds have to be balanced with the serotonin helpers, because anxiety meds will imbalance all the other hormones. It's a careful balancing act and takes allot of trial and error. Much more error to start with. I'm glad you found us here. Hopefully, some of your questions will be answered. We are all here to find answers and help, and to just support each other. Your journey just begins. Hopefully, the puzzle comes together for you. Hope this has helped some.

Did you have the real thin ones? They are like Lycria.

You can buy something like this from the Dive Shops. They are swim skins. (I don't think that's the name.) But they are for scuba etc. Because I have vitiligo and can badly burn within 15 minutes of sun, I wear the full body one of these when I swim. There are also skull caps for your head. The fabric is so tight that it makes them have a sun protectant factor. You don't have to put sunscreen on. Some surf shops have them too. They have a short sleeve version of the tops and a long sleeve version. You can get a full body (jump) suit, or just buy a mid thigh short. I look like a big whale in the water, but I'm having fun and LIVING. People ask me if the water is cold. I say no it's just glorious. They usually just give me a look like 'your odd', but go on their way with a little shake of their heads. Then they come back in a few hours hurting and burned and I'm still just 'glorious'!

Honey, you make people fearful to respond to you if you snap back at them when they are trying to help you. No one here, is here to attack, only to find answers themselves. If we didn't need answers or support, we wouldn't be here. No one on this site is a healthy person. We all wish we were, but sadly we are not. I think with the way you write, a rather poetic style, people don't really understand what you are trying to say, and what they do get is a little scary. That's why the suggestion of some professional help. You want people to understand you! We all want that. We are all unique in our own special ways. Many of us have our own ways of looking at things, that may need guidance to be healthy and productive. There's nothing wrong with seeking medical assistance if our brain needs attention too. It is, a part of our body and can have problems just like any other organ in our body. I hope you find the peace and happiness that you so much long for. It's not good to be alone, it's not healthy for anyone. Try to seek out some help and people will then be more open to being there for you -- don't feel like you have to be on attack all the time.

Look at the other thread on Vitamin D deficiency on this site. It gives you allot to think about.

[quote name='Simmy' date='Jun 15 2010, 11:43 AM' post='141416' As far as alcohol goes, if your friends insist you drink, go for it, but every time you take a shot of alcohol they must also take a shot of cyanide so they'll feel as you will. Alcohol for us is poison! Period! Don't do it. "Friends don't let pots-friends drink and drop." BRAVO!!!! I loved this.

You're welcome. Hope all will be okay for you.

She had exactly the same issues, including the anemia. Don't wait too long. They caught hers early and removed her utereus and no chemo or anything else. They didn't catch hers with a pap. The DNC they did because of the bleeding and that's when they found it. The pap checks the cervix.

--------NOT WORTH IT !!!!!!!!!----------- You will feel HORRIBLE if you over indulge. You will want to die, because living will be almost unbearable. Don't ever over drink, especially in public. You don't know how your body will react and you won't have the comforts of home. Have fun, but keep your senses about you. The busy atmosphere will be enough stimulation to your senses. You don't need that mix. Let us know how you do. Try to have fun. There are some really good shows there.

Be aware that the protein source in these is soy. If you have hormonal issues, it could make those issues worse. Despite what you read, my husband feels that men should not do soy or flax. They have estrogen properties.

So what are we supposed to do? We try to help ourselves, but we may be harming ourselves MORE. It's all very confusing. I guess the best thing to do is see IF we feel better with a supplement/product. Then leave it off for awhile and add it back later and see if it makes a difference. My goodness we are all just guinea pigs. We have to be experimented on by our doctors and ourselves.

I know of another POTS person who has PCO too. I think hormonal issues go along w/ POTS issues. I on the other hand had too much estrogen and endometrosis. With PCO the testerone is too high. I don't know about the Mirana, what type of meds are in that (if any) but PCO is caused by hormone imbalance and some feel a problem with insulin metabolism. They also treat it with Diabetic type drugs and if you do have PCO, it's important to get the blood sugar properties to working properly.