L4UR3N

I had done a lot of research on this a while back after noticing that I always felt worse during the luteal phase of my cycle when progesterone is highest. I now consume soy (which has an estrogen like activity) during that part of my cycle and I can say with 100% certainty that it has helped. **I am NOT suggesting that everyone go out and eat soy,...just stating an observation and what has worked for me. Here are some of the articles I found. I have many more, but I have to get ready to go to work! haha http://hyper.ahajour.../51/4/1203.full "NET inhibition was 4-fold higher during the luteal phase than during the follicular phase." http://www.ncbi.nlm....pubmed/20479333 http://circ.ahajourn...02/13/1473.full http://jcem.endojour.../87/4/1569.full ** this is a study on how it is how it is SUPPOSED to work--may give a clue to what's going wrong in POTS (read the conclusion). One interesting excerpt: "in menopausal women (low hormonal status), it was reported that estrogen supplementation caused a significant decline in systemic norepinephrine spillover and in sympathetic tone" http://www.ncbi.nlm..../pubmed/9756551 (rat study on estrogen and the SNS) http://www.ncbi.nlm..../pubmed/8794812 estrogen enhances nitric oxide release and this one is important for anyone with SVT : http://www.ncbi.nlm....pubmed/10190518 **BTW I am not convinced that estrogen is helpful for both types of POTS. I would think that it may actually worsen POTS if you already have super low BP.

NS is the only thing that ever seemed to help me. Of course, there are several medicataions I have not tried. I still have this methyldopa pill bottle staring at me. I'm too chicken to take it. Dopamine is a serious thing to mess with (especially since my grandfather had parkinsons). It is interesting though that you found Compazine to help, and it is a dopamine antagonist....methyldopa has a simliar action.

I would love to have this done, but after your experience I dont think I would make it! lol. Lido doesnt numb me at all (going to the dentist is torture), and having my head below my heart---I'm pretty sure my head and neck would burst! I get horrible pressure just from bending over... ......it is very interesting about the swelling though, and sounds like a great idea if you can tolerate the procedure!!

I definitely have circulation problems in my hands and my feet, and I definitely think it is POTS related (or maybe EDS related?). I was told I have Raynauds, which is the same constellation of symptoms that you are describing. Typically doctors think of Raynauds as "red, white and blue". You need to take very good care of your hands and feet temperature wise--dont expose them to extremes. People have lost fingers and toes to Raynauds--its nothing to mess around with.

The right level for me is the level at which I have the least amount of symptoms. I believe it gradually increased to the point where I am drinking 6 liters/day. I'm pretty sure there is no doctor in the world who would tell me to drink 6 liters/day . Unfortunately it seems to be only getting worse, and at times I need more than 6 liters/day. Physically, this seems almost impossible to do, as I am drinking constantly. Not really sure what my next step is....

Just wanted to give a quick reply to say that I notice my heart increasing in the first few minutes after laying down (same with sitting up). It seems for me that ANY change in body position causes this increase. The difference is that when I'm laying down it quickly goes away, whereas when I'm sitting it remains, and when I'm standing it progressively increases. I think it is my bodies response in adjusting to the shifting of bodily fluids. I also definitely notice the overwhelming relief/relaxation when I lay down. Everything stops hurting, my head stops pounding, and all is right in the world, lol

Hey Issie! In my case I think it's secondary to relative hypovolemia caused by venous pooling and denervation.

I actually drink 6 liters/day, but I dont recommend it!! I dont have a choice because that seems to be how much I pee, whether I drink or not (surprisingly no diabetes insipidus). The only advice I can give you is to take water with you everywhere, and alternate it with some type of electrolyte solution. Unfortunately I have also stretched my bladder out to proportions im pretty sure are comparable to an elephant.....but I dont recommend that either. lol

My high blood pressure is definitely compensatory. Every time I get IV fluids the doctors always shake their heads because my blood pressure actually comes DOWN. ....not your typical response.

I don't agree with this study at all. Exercise helps EVERYTHING (except for arrhythmias--then dont do it!). Anyone could publish work on how exercise improves _____name your favorite disease here____. Unfortunately it does not address the underlying cause, and therefore cannot be curative. It does however help your body to function at its best so that you are better able to deal with whatever issue you're having. Personally, all of my cardiac workups have shown a normal size heart. I also had some autonomic testing done and was diagnosed with autonomic neuropathy.

The labs you had done may actually not be accurate. I believe this was done from a urine sample (ug/gCr is urine) ? I had a similar problem--you really need to get plasma catecholamine levels. My urine catecholamine levels were all low which was incredibly confusing...but once they tested my plasma-- it was all elevated. See if you can get the same doctor who ordered this to order plasma levels for you--and ask for 3 levels: One lying down for 30 minutes, one sitting, and one standing for at least 10 minutes. I'm willing to bet you will see much different results

I would definitely ask for a referral. It may be that he does not want to order the MRI because he does not know how to interpret the results (though usually a radiologist will give them a very nice print out). Family doctors are great for getting antibiotics and referrals......and that's about it. LOL.

I definitely worry, and I think it is normal to worry. It's your health and your life afterall! I dont think any of us would be here if we weren't worried . There are some things to legitimately worry about--hitting your head or other bodily injury when you pass out, ongoing tachycardia which can lead to many problems down the road, the silent effects of hypertension (depending on what type you have), other co-morbidities that may lead to poor outcomes, and arrhythmias. However worrying will not change any of these, and in some cases might actually make things worse. Try to focus a little bit each day on something positive in your life--it can be anything! Be thankful for each day that you have, and the functionality that you DO have. It's very hard to focus on positive things when we feel so yucky all the time, but it can really change your outlook on life !

My sister has IST which is a sister to hyperadrenergic POTS haha. We both started having problems at the exact same age.... CANT be a coincidence. Also my grandfather had parkinsons, which is interesting b/c of the dopamine imbalance. We seem to have the opposite problem. I also have an uncle who has an inability to regulate his temperature. I will actually be seeing a geneticist for the POTS next month. I am excited,...but not overly hopeful.

I am so frustrated with my doctor because he actually told me NOT to exercise (I keep ending up in the ER with SVT that just wont quit). I still do my recumbent bike though because I really believe that exercise is good for EVERYONE. Countless studies have shown the benefits of exercise in nearly every disease--even heart failure! As far as what I'm currently doing to feel better--SOY! I am aware that many people have allergies or intolerances, and everyone is different. I can only speak to what has worked for me, and I can't even completely explain why. Estrogen does have a relaxing property on blood vessels through increased nitric oxide--maybe its just that simple--maybe its more complicated--all I know is that it works .

I definitely had withdraw symptoms when going off of gluten! I thought it was really strange because I seemed to actually be worse off than before, but then I thought about drug addicts and what they go through in withdraw. Food is a drug--it influences chemical and hormonal processes in our bodies, so it would make sense that one could go through withdraw. Mine lasted only about 2 weeks and then I felt back to "normal" with my POTS. I have been gluten free for over 2 years now, and while my antibody levels have come down to an acceptable range, I dont feel any better unfortunately . Recently I have learned that gluten is also found in rice and corn, so I plan to eliminate these from my diet, along with casein which is structurally similar to gluten. An awesome website I found was www.grainfreeliving.com. It has some very interesting information on it

I'm going to bring this topic back to life . Has anyone tried Methyldopa?

Julie- I am hoping that someone at some point tested your magnesium! That is typically one of the first things they check with arrhythmias. An imbalance of any electrolyte, but especially magnesium and potassium can cause all sorts of lovely arrhythmias....that's why I'm kind of disappointed that mine was not low . lol. I do highly suspect hypovolemia though, so I may give it a go with a low dose and see what happens

I just got this test sent off and am awaiting results. My doctor said that it is only done by the mayo clinic, so my lab had to send it there. You can help your lab out (if they seem hesitant to send your blood work off) by going to www.mayomedicallaboratories.com , looking up the test and printing out the directions for proper handling of the specimen and shipping info. My lab was very resistant until I gave them step by step directions. Hopefully this helps! Waiting is the hardest part!!!

I wish my magnesium were low so that I could experience what the rest of you are, but mine has always been at the high end of normal. Of course.. I may be hypovolemic too...

This is definitely the case with me!! It took me a while to make a solid connection, but I feel a million times better when my estrogen levels are at their peak. I'm not sure if this is because of the vasodilating properties of estrogen, or because progesterone has a strong link to arrhythmias (especially SVT and PVC's). I have actually started eating soy nuts during the second half of my cycle (when progesterone is highest) and it has made a profound difference in the way that I feel. My heart feels calm, my pvc's are nearly gone, and my POTS symptoms remain at a steady level instead of flaring up right before menstruation. It is really the ONLY thing that I have found so far that helps me.

One interesting thing to keep in mind: If someone is hypovolemic, results of blood work may not reflect true and accurate levels due to hemoconcentration. Levels may appear higher than they actually are, and a normal value may actually reflect a deficiency.

Very true. I do believe there is a gluten connection for many people, and some research does support this: http://jnnp.bmj.com/content/76/4/579.full http://www.neurology.org/content/60/10/1581.abstract?ijkey=c3cccde5b4078a06154ca83818b68d54a9ed9255&keytype2=tf_ipsecsha Unfortunately from the results of the study, it does not appear to respond to a gluten free diet. There really needs to be additional studies on this topic...

I just saw this the other day! Someone put clever (but somewhat intrusive/redundant) inserts in to Wikipedia under the POTS definition. I check back every so often since people are always adding things. Don't think it will stay there for very long just b/c of the way they worded it, ....but it is an interesting idea anyway. I can't tell you how many times I wished I had beriberi or some other fixable nutritional deficiency!!! Thanks for this article

Haha . There does seem to be a discrepancy between the percent of sufferers in the research and the amount found in this forum! Not sure if this is an error in research, a misdiagnosis, or just the fact that those with Hyperadrenergic POTS are less likely to be helped by "traditional" POTS medications, and therefore more likely to be found searching forums for answers. I was initially diagnosed by significant increase in BP with the TTT. Only recently have the measured my catecholamines. Still haven't found a medication to help, though I may give Methyldopa a go around. The side effects are pretty hair raising though...