L4UR3N

Wow that is scary stuff!!! Thank you for being a guinea pig Rama! haha. I heard that this was supposedly good for ehlers danlos. Definitely wont be trying it now. How long did it take to come back down??

Mine is actually very low -- 30's to 40's. Every time I wear a heart monitor it wakes me up in the middle of the night telling me to call the center LOL.

This is a great article Anna, thanks for posting!! "On the other hand, there is evidence that increased sympathetic activity results in insulin resistance due to 1-adrenoceptor activation causing a reduction in blood flow and therefore a reduction in glucose delivery to skeletal muscle. The outcome, then, is a continuous stimulation of sympathetic nervous system due to compensatory hyperinsulinemia in response to the insulin resistance." Maybe diet plays more of a role than we think?

I was not able to tolerate progesterone at all--actually when I was on it was the very worst I ever felt . However..everyone is different, and maybe it will not be the same for you? I do know at least 2 people with POTS who use Progesterone cream and do very well with it. Might be worth a trial.

Drove from PA to the very upper part of Maine. They only problem that I have is with variation in elevations--such as hills. I feel horrible (cant get enoug air and dizzy) when going up a hill/ mountain and much better coming down, and the best at the bottom. Other than that had no problems! Just make sure you drink enough and stop for some breaks here an there . I really loved the drive and would do it again! Hope this helps <3

Ramakentesh- I think he changed his mind on the HSAN type 1 after I saw the Geneticist (no family history of ulcers or insensitivity to pain) . He said it is a type of preipheral autonomic neuropathy, but he doesnt know how to classify it. I do have an ulcer on the inner aspect of my left ankle, which is from venous insufficinecy. I also am insensitive to pain, but only in my hands and my feet. I actually did not know this until I got a very bad cut, and never felt it--just saw blood everywhere . He did some testing for pain sensitivity, as well as a temperature and vibration test (not sure the name of it). Basically my hands up to about my mid palm area are insensitive to temp and pain, and my feet and ankles up to about mid calf are the same way-- with the right being worse than the left . I'm not diabetic, so not really sure what the cause is. I also have a Raynauds type of thing going on--though he thinks it is from the neuropathy and not true Raynauds. Annaliese --thanks for the article! He actually mentioned this to me when prescribing it because my mom has Lupus. He said that if it were to develop it would go away with discontinuation of the medication. I seem to have a LOT of contraindications to this medication, which is why I still have not taken it yet . Honestly I cannot see myself sticking with this med knowing the side effects--EVEN if it did help me. I would much rather try Clonidine and see what happens. You really have to weigh the pro's and con's. Currently I am able to function (though barely). If I developed hand tremors or other types of Parkinson's syndrome, I dont know how I would be able to do my job. I simply cant afford to risk that. Unfortunately my doctor is not willing to budge on it and really wants me to try it. I guess I'll be doing a 2 day trial in order to get my Clonidine haha.

I agree that serotonin is definitely involved somehow, or at least the 5-HT2C receptors. I'm still not sure how it all fits in --trying to sort through the mess and understand it a bit better. If you google 5-HT2C you can read some interesting info on it and draw your own conclusions. One of the ways that Prozac works is through antagonism of the 5-HT2C receptors. This in turn would actually increase dopamine and norepinephrine. **Issie- Tramadol is also a 5-HT2C antagonist.

I have not personally tried it, but apparently Inositol has been very helpful to a friend of mine. Its a natural suppliment that sort of works like an SSRI.

Has anyone here ever had an insulin tolerance test to check for central adrenal insufficiency??

Have you seen a gastroenterologist and had an endoscopy? Since your symptoms seem to occur only when your stomach is full, I think you should start there. If that turns up clean I would try to get an upper GI series as well as blood work taken WHILE you are having the symptoms (so after eating). Have they checked your pancreatic function?

I have never used it but I have been exposed to it in the hospital. A lot of patients get breathing treatments, and unfortunately it lingers in the air for a little while. Even just from the secondary exposure I get very tachy, flushed and light headed. I'm thankful I dont have to take it!!!

Is bush walking where you walk from one bush to the next and see how many you can get to w/o getting Potsy? If so.. I do something similar --only with buildings . Scrabble is fun. I play far too many games of words with friends! I like to draw/paint, discover new recipes, play guitar/piano, and organize things (yes it can be fun!). I spend much of my free time doing research on dysautonomia, but I wouldnt really call that fun. I just feel driven to figure out what on earth is wrong with me. Before I was sick I was very active and used to love to exercise, ride horses, go biking, hiking, swimming--pretty much anything outside and active. I really had to change the way I do things......

Are you referring to small fiber neuropathy? I dont take anything for it, but I have heard that alpha lipoic acid is supposed to be very good. I'm contemplating trying it.

You make a very good point! The ALCAT test actually is not an allergy test, but a food sensitivity test. It measures how your white blood cells (which is where your antibodies are) react to various different foods. The test can tell if your WBC's are releasing cytokines--which are inflammatory mediators--in response to the different foods. The larger the response, the more likely that you will have issues with that food. The ALCAT test is not 100% accurate, but then again, no test is . It IS however just as accurate as any of the other current tests on the market for detecting food sensitivities. The overall reproducibility is 98%. I definitely agree that one should find out as much as possible about something before making a decision and purchasing it. I would encourage anyone thinking about it to read all of the studies involving ALCAT. On their website they have links to the studies which can be found at http://www.alcat.com/studies_links

Kmaod- totally agree with you! It's the rotating of shifts that is the worst. I keep the same hours whether I am working or not. Socially, its not the best schedule to have, but physically--it works.

This is a great idea and I'm believing more and more that diet is closely tied to this whole thing (at least from the standpoint of causing inflammation and setting off your immune system--which will make any illnesses worse). If you have the $$ and can invest in an ALCAT test, I would highly recommend it!! They test your WBCs against 200 different foods to see which ones your body reacts with inflammation to. Of course the results are different for everyone. In the last month I have been following a grain free and casein free diet. I have definitely noticed a difference in the way I feel--I'm just hoping it continues. **if anyone is interested in a grain free diet, www.grainfreeliving.com has some great information on it!

This may be the strangest question that I have ever, and probably will ever ask on here, but here it goes . Do you ever feel as though your brain is bobbing up and down, or sloshing around when you are walking? It may be related to the EDS more than the POTS, but I have a definite sensation of something moving around inside my skull. I also get vertigo with it and a great amount of pressure. I have had 3 MRIs which have not revealed anything abnormal. Is it just me, or do others have this as well??

I had been having issues for a looooong time (my whole life really), but there was a horrible moment that things went spinning out of control. I came home from work, had not eaten much all day, and had not drank enough. I was unloading groceries from the car and carrying them into the house. At this point in time I was very fit and had been exercising about an hour and a half every day (despite significant tachycardia--which I assumed just meant I was not fit enough and needed to work harder). I got horribly nauseated, extremely tachycardic, and my extremities turned blue. I collapsed in a chair and just before I passed out I said "I need help". The ambulance ride was a blur, and even some of the ER was a blur--I just remember a doctor that I knew personally, standing over my bed looking very concerned. I thought I was definitely going to die. .......but..... I'm still here.

That is so interesting to think about. My grandfather had parkinsons and I often wondered if he had the same issues I do and then his body just wore out---of course we are talking about dopamine not NE, but one can make the connections. I do know that he had heart and blood pressure issues since he was 20 years old--in fact he got sent home from the military due to one too many syncopal episodes. It also makes me wonder about long term methyldopa use-- I would think it would halt the onset of parkinsons (if that is an outcome), but with our wacky bodies--it just might progress it. It's one of the reasons I have a full bottle of methyldopa still sitting on my desk. I'm too scared to take it.

I work nights and it definitely works well for me!! In fact, I feel better working nights than days. I have always been a night owl though and used to joke that I should move to the other side of the world for my body to be in tune, lol. I cant really put my finger on WHY I feel better on nights, but my body definitely seems to like it. When I get 8 hours of sleep and wake up late afternoon I feel much more rested than if I get the same 8 hours but wake up in the morning. Working nights is also the only way I could do my job right now. In nursing you have to stand for 12 hour shifts as well as lift things (and people!), bend down to pick things up (or check pts feet), and RUN when there is a code. Thankfully working the night shift gives me some opportunities to sit down. It is also a great pay differential . .......I do worry about vitamin D though, as well as the plethora of studies linking night work to cancer.

On the DINET website it says that YAZ exercises may be beneficial, however the link provided no longer works. Does anyone know exactly what they are?

I know that you shared this a while ago, but this is a gem of an article. Thanks for sharing!!

There is a reason why those stranded at sea will die from drinking sea water--- hypertonic solutions dehydrate you. Unless you can find a way to make exactly a 0.9% solution, I would strongly caution against mixing salt with water and drinking it....

I was recently tested for this antibody and am still awaiting the results. They had to send it to the Mayo clinic, so it can take 3 or more weeks for results. My neurologist came from the Mayo Clinic, so he is up on the current research. After reading the articles and seeing the small % of POTS patients who are actually positive for this antibody, I do not have my hopes up. I do however believe that it is definitely worth studying the mechanisms behind myasthenia gravis and POTS, though I dont claim to fully understand it.

Potsgirl--I would definitely talk to your cardiologist / electrophysiologist about this. Being that you have dilated cardiomyopathy, you may actually be working out too hard. That being said, I have the same problem! Initially my heart rate will take off and go too high, but then it will drop far too low for what I am doing, then bounce back up to waaay too high. I also get atrial tachycardia at times when I exercise which is very scary. When I took a beta blocker (wich turned out to be very bad for me) I could not get my heart rate up above 120. It is typical with BB to reduce heart rate during exercise, but I also felt as if I was dragging a truck around and was dizzy 99% of the time. I was only taking 1/2 of the lowest prescribed dose.