issie

Thanks to everyone who has responded, it sure has brightened my week. It's so nice to have understanding and support.

Written so beautifully, thank you for your encouragement!!!!

Had to have a complete hysterectomy at age 36 and wasn't allowed to go on hormones for 5 months. Tried everything available. The final thing settled on is bio-identical estriol and (if you still have your utereus you must use bio identical progesterone cream.) The other great helps are Vitamin E and Red Clover. Red Clover is a mild plant estrogen. Estriol can actually prevent breast cancer. It's one of the 3 estrogens. The best books I've read are: What you Dr. may not have told you about Pre-menopause What your Dr. may not have told you about Menopause And a book by Dr. Wright about how to use bio-identical hormones - can't remember the name, but he's recently written a new one. A doctor at Mayo actually told me about the Red Clover. I was told that my body would continue to have flashes as long as it was supposed to. So, I've been dealing with it for 14 years. Starting to settle out now. I have found though that allot of my hot flashes are related to POTS, not hormonal at all. Also, when I eat something I'm sensitive to it will bring on a flash. Here's hoping it will settle out for you real, real soon. It is sooooooo miserable.

I've had a rough week myself. But a new week is coming soon. Hope you have sucess in finding a doctor. What about Mayo in Jacksonville? I think someone suggested there. Do you have insurance? If not, they do take so many people per year that don't, you have to qualify up front. Here's hoping for some help for you and yours. Issie

Thanks Bellamia, You are a sweetheart. Always there to send a hug. Hope you get better soon with your injury. We would make a pair. Issie

Yes, it does sound like you need another doctor. Usually with POTS, most of us are told our hearts are in good shape. Its the autonomic nervous system that misfires and causes our hearts to beat too fast and cause both low and high blood pressure ((BP). The test done for that is called a tilt table test. It will show up when you go from a lying position to a standing position. Honey, you are worn out because you are on a treadmill ALLLL the time with your heart beating so fast. Anyone would be. You need to get on some meds to get it to slow down. Usually beta blockers. I agree with friday7, you need to search out another doctor. It does sound like POTS. There are two kinds of POTS ----not the Potts form. (That kind is a heart disorder associated with TB.) This kind is POTS associated with the autonomic nervous system. Which kind did he mean?

Good advice!!! I've learned that it hurts the person alot more if they hold on to their anger or hurt. The other person really doesn't know the extent of your pain, only you do. If you can forgive and then forget, it makes your heart feel better. Of course, you are more cautious with that person. But, letting go of the negative aspects of the situation is a healing for you. But............that's gonna take a little time. Broke my foot with a fall over a parking curb. Still not sure if it was POTS related or not. Was having the dizzies, but didn't see the curb. My foot stayed planted as my leg and body wrapped over and around it. It was like slow motion as I realized my foot was up on my calf. Uggghhhhh, I think I have a little post traumatic stress over it, keep having flash backs. I'm better now, got a really good surgeon ---Thanks to God! I'm using a walker to walk some now. It will be a looooonnnng recovery they tell me. They said I may have to have more surgery in a few months. They are waiting to see if cartlidge damage shows up. Has to come from the inside out. Thanks for asking.

OH YEAH!!!!!! I stand, hold my breath ......... wait ........hold my breath ......... breathe, try to walk. Same with my hands and fingers. I have been diagnosised with osteoarthritis and fibromyligia and Ehlers Danlos. So take your pick. Not sure if this is it, but probably a combination one of the three is. Sorry you have it too. I'm trying Turmeric and Ginger as anti inflamatories to help. Seems to help some. Just remember with ginger, it thins your blood and you must stop it in advance of surgeries. The other thing is homeopathy.

catterpilly15, I understand what you're saying -- sometimes people are of the opinion to "pick yourself up, dust yourself off and put a smile on your face and life goes on." Even though that is impossible to do in a chronic illness. They know it's impossible when they say it, but ---at least they are saying something, anything. Allot of times people don't KNOW what to say. So that is what comes out of their mouths in an uncomfortable situtation. But, in lieze's case, it sounds like she is going through whatever group she is in same situation and trial. She is just trying to encourage fellow sisters/brothers in the illness. So, in this case, I can understand why she was hurt and felt rejected. When your own kind rejects your encouragement, when you are in the same boat together --- it doesn't make sense. We can all disagree with each other, at times, but we stay united in the fact that we're in the same boat -- although, all unique in our own ways and symptoms. None of us are in the same place as far as severity or complexities, that varies. That's true of any chronic illness. We have to have compassion for each other -- because we understand each other better than any one else possibly could or will, UNLESS -- they have to get in the boat with us. Then, the story changes and then realization sets in. We have to look at others with the understanding that they don't understand and can never REALLY understand. So, we can cut them some slack because basically it's IGNORANCE on their part. JUST NOT KNOWING! But, at least they acknowledge our pain and TRY (although, sometimes not to well) to say something, anything to us. It's those that do TRY to say something -- that care. Shan, Thank you for your kind words of encouragment and well wishes --- those wishes extend to you too!!!!! TXPOTS, Sorry you experienced it too. I'm sure many have. But it sure does hurt. Glad you found true friends to help.

Annas Mom, How are your loved ones doing? Any news? Also, I left you a PM weeks ago, that you haven't read. Issie

Maxine, What did you find out? Why the low dopamine, what is the significance?

Correct me if I'm wrong!!! I thought that the epiniphrene and noriepiniphrene were created in the adrenals. The seratonion and dopamine in the brain and digestive tract. I noticed that you are on cortisol for adrenal dysfunction. Didn't know that it could also be produced from dopamine. (Interesting) It seems to me, just thinking out loud, since you already know there is adrenal dysfunction. It appears that is still the case and your adrenals are overproducing noriepiniphrene. And I have read that if the production is over 600 it is considered the hyperadrenal type of POTS. If you have the hyper type of POTS, I found out from experience, dopamine replacement --- makes you a whole lot worse. So why then is the dopamine low, if you have hyper? Doesn't add up does it? Thinking out loud again. Keep us posted.

Jana, Just read an article showing that vitamin B1 may help this. It was on the Life Extension web. Do some research and see if you can find anything. Also, just as a side note: If you are having surgery ----stop the Ginger in advance. It does thin the blood.

I've had this too. When I have the good days, they may last for several days and then............BOOM........I crash. I think because of over doing it. I don't know, but I think that's the hyper part of POTS. The only other explanation is possible mania due to bi-polar. Don't think I have that though, don't seem to fit the description. So, I think it's the hyper part of POTS. Welcome any other possible reasons?????????

Nela!!!! You just wrote down my symptoms. You're in the right place. You will find answers here. A lot of what you describe can be explained by Hyperadrenal POTS and Mast Cell Activation Disorder. You can have both. Also the joint and muscle pain could be a clue if you have hypermobile Ehlers Danlos which can also be a cause of POTS. The only thing you described that I don't have is purple lips. That is a sign of lack of oxygen and if you use your CPAP and make sure you are getting enough oxygen in the night that may get better. Sometimes at altitude, I do have to use oxygen with my CPAP because I still don't get enough oxygen to my brain and tissues. One suggestion for endometrosis --- Natural Transdermal Bioidentical Progesterone. Wish I had known about this before all my 8 ab. surgeries and complete hysterectomy. It has helped allot of people. I tried the birth control pills, it just made me miserable, it helps with the pain of the periods but throws your hormones off even worse. The thought is there is too much estrogen and if overweight, fat holds on to estrogen. To balance the too high estrogen, you need progesterone. It may even help you to lose some weight. It also helps with depression for some. Welcome!!! I'm sure we'll be talking more.

Well, the SUN IS OUT -- all your comments brightend my day. We've all had similiar issues but it's really hard until the pain goes away. You just realize that there are some people where friendship is only a one way street. The way they are going. Thanks for the encouragement!!!! We all need some of that from time to time. You are all right --- I'm not going to let one person --take MY "JOY" away. ONWARD INTO THE FUTURE!!!! emadden514 - I feel so priveledged that you choose to make your first post on my behalf, and such a good and encouraging one at that. Welcome to our little family here. I think you will get allot of information and guidance in your journey with us here. potsgirl - Hugs back at ya!!! You've had your plate full lately too. I'm looking forward to actually meeting you. lieze - ya know there are some people who want to stay sick and drown in there pessimessitic ways. Consider the source. She is probably allot more miserable than she made you. Can't imagine someone not appreciating an optomistic outlook even in adversity. You hang in there. There's others in that group that need the "positive".

Since I'm new to where I live, and making new friends, you can only hide your illness for so long and then the people get to see the full effect of what POTS does to your life. I had a REALLLLLLY bad week, and just now feel like talking about it. I Couldn't get out of bed or even raise my head off the pillow. One of my supposedly best friends, decided that she couldn't deal with having a friend who had illness. She had her husband tell my husband the reason why she had quite coming over or calling or anything. This happened right before I had the horrible accident and broke my foot off my leg. She came to visit once after my accident -her husband made her - and she told me I would be just fine, I could take care of myself, when my husband would be gone all day for work. (Mind you, my foot is broken off my leg, with pins and plates and screws. And on top of it POTS.) I realized then that she didn't intend to help or be there for me AT ALL. I said, I guess I would be fine. And that's the last time she came over. I did however, have another friend who stayed with me and helped me until I could do for myself. When you're ill, your true friends shine, and those that aren't split. DON'T WE WISH FOR PURPLE POLKA DOTS!!!!!!!!!! Right now === MY HEART IS HURT!!!!!!! It takes allot to expose yourself and try to be a friend and be there for others, when we feel so bad. But, then when we need them ----they leave. They can't deal with the magnitude of our illness. Goodness knows===WE CAN'T DEAL WITH THE MAGNITUDE OF OUR ILLNESS!!!!!! Just needed to tell some people who understand. Got the Booo Hooos. Tomorrows another day. \\ Hope the SUN is out.//

Hey merryberry, I suggested that back on July 12th -- to hurry and get to the doctor because when you first posted about this it sounded like a spinal leak. Hope all goes well. Don't need to mess around with this. Issie

Chaos, THANK YOU!!!!!!!! I really needed that laugh. It's been one of those days for me. You cheered me up.

AMEN, SISTER!!!!!!!! I do believe you're right. What came first --- the chicken or the egg ---autonomic disorder or depression/anxiety???????

arizona girl, Loved your post. Really like your comebacks. I've had this experience too. Despite her colleagues telling a whole different story -- she still wouldn't budge in her assessment. I went as far as I could to get my records changed and in the end had notes attached to each reference showing that her (opinion) was refuted by her colleagues and science. This doctor was so arrogant and prideful. She'd rather not back down, than admit being wrong. Like arizona girl said --- GO ON TO SOMEONE ELSE --- that will help you. Not cause you grief. When they keep insisting that it's in your head and not your unconscious, uncontrollable autonomic nervous system ---- you've reached a dead end.

It could be sleep apnea. There are two kinds. One is obstructive and one is central. Both kinds can wake you up to make you breathe. There has been a thread on this in the past. Do a search on it and you will find the comments. You probably are gasping for breathe. We also had a discussion on how it seems allot of us don't breathe right even when awake. Don't know if it's autonomic system issues or we just need to re-train ourselves in our breathing patterns. Something to think about!!!

Simmy, I don't know?????? It might make your BP drop because you are probably taking it in the A.M. One way to find out ----Stop taking it and see if your BP comes up. If it can be taken as an alternative to high blood pressure pills, it would make sense that it may drop your BP. Let us know if it makes a difference. I did a search on this site and there was a thread in 2004 and allot of people had come to the conclusion that it made them worse. Type in CQ10 into the search box. Let me know what you think. Doctors don't really know that much about natural supplements. You have to educate yourself. What's good for one person will be terrible for another. That's one reason why health stores are not supposed to recommend supplements any more --- it's like prescribing medicine. It can be just that. If you don't know the whole history of someone and you treat only one symptom, you could be messing up something else.

I just recently read that CQ10 can be used for high blood pressure instead of medicine. (This was on the Life Extension web site.) When they thought I had Parkinson's (before my POTS diagnosis). They had me do massive amounts of it -- 1200 mg. day. It supposedly will stop Parkinson's in it's track. With me, I kept getting worse. They also had me taking Lexapro and Wellbutrin with this. Since I kept getting worse, they then thought I had multiple system atrophy. When I got my POTS diagnosis, I stopped all the above things and I'm better, than I was. I wonder if the CQ10 made things worse? I know the Wellbutrin did. I have the hyper form of POTS and with that kind you don't want to take Wellbutrin. I was thinking about trying the CQ10 again, but not sure if I should or not. I tend to have high BP while up and low while lying down. Any ideas?

Jana, Just read about the syndrome you got diagnosised with. I know you've had heart issues and a pace maker put in. Is that when your symptoms started? What I read is that it could happen with a heart attack or injury to the nerves. Did the POTS cause it, since it affects our nervous system? Why??????? Could it be related to a neuropathy? There are some autoimmune neuropathies. I know you have another appt. so here's hoping you can get some answers. Hang in there - you got a lot going on. Hope the neurotin helps with the pain. I also take Tumeric and Ginger. This also helps with inflamation and pain. Let us know how you do!!!!!!