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Wow so interesting! I was actually on Depakote for a few years, but that was long before I got bad. I dont remember any side effects to the medication, and it definitely helped with my migraine.... not really even sure why I went off of it........ This is a great article!

I had mild POTS my whole life. From the time I was little I always felt that there was something wrong with my heart. I always had tachycardia, though not to a point that was disabling until these past few years. I was never dizzy, but I do remember having heat intolerance and getting very flushed. I had constipation to the point that I ended up in the hospital with an "acute abdomen". I ALWAYS had to drink a lot-- my mom said from the time I could talk my most common phrase was "I need a drink!" I was always fatigued, and knew that daily living was physically harder for me than other people, but I just figured that was the way it was. Kids dont often connect the dots--their complaints may be more of "I dont want to" instead of "I dont feel like I can because it's physically hard for me". Looking back, EDS played a much larger part in my life that I realized. All the signs were there, but I just never knew what it was. The POTS did not become the main issue until about 5-6 years ago after a viral illness. I think it set something off in me that spiraled out of control.

Thank you so much for this!!!

Yay! A fellow horse lover I have had similar experiences unfortunately. I actually have traumatic memories from a gum graft that was performed when I was very young--they couldnt numb me. They should have just used general anesthesia, but they didnt. I am pretty terrified of the dentist now LOL. Insensitivity to local anesthetics can be part of EDS....not really sure why though .

This is just a personal viewpoint, but I believe that pre-diabetes may play some role in POTS. You mentioned that your blood sugars were always fine before POTS, but I wonder what "fine" actually means. Doctors often dont get too excited unless its high, so a lot of people have pre-diabetes for years without ever even knowing it. On the other hand, MomtoGiuliana makes a very good point about the SNS and glucose. It also explains the hypoglycemic crashes that some of us experience. ....but then again...pre-diabetes can do the same thing. Kind of the chicken or the egg scenario .

I am on the east coast too! Where will this center be?? This is very exciting news!!!!!!!

What article was this? That is horrible, though not unlike how many other diseases were treated before they found the causes.

I actually stopped watching the first video once she got to the part about the parenting style. This makes it sound as if the whole problem is behavioral, and the kids are just acting out. I also felt sorry for the boy because he thinks he is cured (and I hope he is!), but 3 weeks of improvement and one week without flares is not really a good indication of things to come. I have to wonder how he is doing now.... I had a sort of placebo effect at one point in time, where I ignored all of my symptoms because I wanted desperately to believe that I had found a cure. Of course it didn't last for long because my symptoms were too hard to ignore. I would love to see the long term improvement rates with this program.

I think Chaos makes a really good point about the patchy neuropathy--I have heard this many times too. It could at least explain things in this case I have become a little disheartened with medical tests. Although we would all like to believe that there is someone in the lab taking great time and detail and pouring over our test results, the truth is that this is just not the case, and mistakes are made ALL the time. I see it literally dozens of times every day at work. Patients come in and get lab work or imaging studies, and things--BIG things-- are missed. Patients often receive two different diagnoses depending on which hospital they go to, or which doctor they see. It is unfortunate, but it is reality. We are human and humans make mistakes. It just stinks when those mistakes end up causing us a lot of frustration/ torment/ suffering. I dont know if this is what happened in your case or not, but I do feel for you. Sorry you have to go through this and feel like you are starting from scratch all over again.

Yes, they can.

My 24 hour output was over 6,000 ml. I definitely dont take in that much, but no doctor will do the test for diabetes insipidus because I answer "no" to "do you wake up at night to pee". Even when I explain myself and tell them that my bladder holds about 3 times what it should and that I wake up in pain b/c I have to pee so bad--they still tell me I dont have diabetes insipidus. I would love to try vasopressin just to see... I have a feeling it would help me more than anything else!!

Very true, it should. You would expect that if an issue with vasoconstriction were the primary pathology then warm baths would help. Many of us have a lot of compensatory mechanisms going on which leads to a lot of "confusing" and paradoxical reactions. If vasoconstriction is a compensatory mechanism, then vasodilation will only produce greater symptoms instead of showing improvement. Much the same as beta blockers produce an increase of symptoms in people whose tachycardia is not the cause, but the result of an underlying pathology.

Interesting question! They can never, ever, EVER find my peripheral veins. It's pretty horrible when I have to go for a blood test or IV fluids. The veins on my abdomen and chest however are very visable (which could be related to EDS?) It would make sense for those with low BP to have prominate veins due to vasodilation, and those with hypertension to be the exact opposite. Do you have any spider veins? My feet are basically purple from spider veins. The thenar eminence of my hands also have a weird blue/purple hue--so much so that others have commented on how "weird" it is.

I've had variable effects from hot showers/baths. If it is cold outside and I am "cold to the core" then it usually makes me feel better, but if I am anywhere near a normal temp it makes me feel much worse with huge elevations in HR and dizziness (I believe my high BP is a compensatory mechanism that is there to keep me upright!). If you feel consistently better from a hot bath/ vasodilation, it may point you in the direction of which medications may benefit you! I cannot seem to tolerate anything that causes vasodilation--including warm baths .

I would definitely look in to ruling out all endocrine causes, since it seems that has not been addressed yet. I also agree with Rama--trying some new meds, or even just adjusting the levels of your current meds (under your doctors supervision of course). I definitely feel your frustration. Over 5 years of really bad symptoms and still looking for relief. Sometimes the only thing that keeps me going is the hope that there is something out there that will help-- just gotta find it. Research is being done every day .

That's very interesting that prednisone had this effect on you. Have you ever had a thorough endocrine or rheumatologic evaluation? Did they find anything? ...If I had that response to prednisone I would be tempted to stay on it hahaha

Hi there! Sorry for the late reply, work has my head spinning in a million different directions lol My sister does not have as large of an increase in heart rate as I do when she stands (although I have heard of some IST patients who do). The main difference between us is that her resting heart rate is high, and mine is not. Her resting heart rate is consistantly above 100 and rarely ever dips below that (off the beta blockers). My resting heart rate is typically in the 40's give or take 10bpm. As mentioned earlier, some researchers believe that Hyper POTS and IST are just different manifestations of the same disorder, while others believe they are two separate disorders. I personally believe they are related, but separate disorders, only because IST patients often benefit from an ablation, while such treatment often makes POTS patients worse. Many IST patients are also helped by beta blockers, which have a variable effect in POTS patients. These responses to treatment indicate to me a different causative mechanism of action in each disorder.

oops I think this was the link I meant to post on chromium and endothelial function LOL (though the other one is good too!) http://www.prnewswir...s-55696562.html

Same here!! I sleep on 3 pillows . I started just because they said elevating the head of the bed could be helpful in POTS, but then continued due to reflux. Now whenever I try to lay flat I am very uncomfortable with the head pressure that you just mentioned!

There is actually a link between prediabetes and peripheral neuropathy. Any sugar above 100 is considered abnormal, so having sugars above 100 for a prolonged period of time can definitely cause nerve damage. My neurologist is actually doing a lot of research in this area and found great success with specific lifestyle modifications. You can read about it here: http://www.umm.edu/n...pathy/inmed.htm (a link to the clinical trials) http://care.diabetesjournals.org/content/29/6/1294.full (what his results are showing) http://jn.nutrition....m%20T.%20Cefalu (Also his findings on Chromium Picolinate, diabetes and endothelial function ------ Very interesing!!!!!

Oh, also get fleeting sharp pains in my neck at times too.

Definitely happens to me. I spoke with a cardiologist about this who of course told me it was "normal". Then I showed him what my neck does when I lay down and his eyes bugged out of his head LOL. He started asking me all these questions like "Have you had a carotid ultrasound (yes), Have you had an MRA (yes), Do you have a heart murmur (yes), Do you ever get edema (yes)?", etc etc etc. He seemed truly concerned, so I think I got him in my corner LOL. I said that I didnt know if all POTS patients had this happen to them when they lay down, but that most of us complain of pressure in our head. He told me that when I initially said that I had pressure in my head, he was thinking of the normal pressure that everyone feels when they bend over. I told him this was about 10 times what normal used to be for me. He said he is going to do some research on it and get back to me to see if he can find any correlation between this, POTS, and any other disorders. He's a pretty busy guy so I doubt I'll hear anything for a while, but at least I got someone thinking!!! I wish I could show you a video of what my neck does, but I will have to describe it, and you will have to take a mirror and look at your own neck when you lay down. Basically when I am laying down and I breathe in and out it pulsates wildly (as if I have an aneurysm or something). This pulsating does NOT correlate with my pulse. He said it was definitely due to pressure gradients and told me it was definitely abnormal. ....Great. Now how do we fix it?!? ..........I also have a visible pulse in my suprasternal notch, presumably from my aorta (which is NOT enlarged). Anyone else notice anything similar?

Normal saline bolus

BTW the beta blocker that has helped my sister so much is called Pindolol. Its a very old BB with some interesting actions (one affecting a serotonin receptor which I am convinced has something to do with all of this).

http://www.potsuk.org/attachments/File/Grubb%202006.pdf Here is a link to Dr. Grubb's article describing the differences between IST and Hyper POTS.