L4UR3N

SSRI's usually take at least at least 7-10 days before the therapeutic effect is known. During that week they are flooding the brain with serotonin, which in people who are sensitive (like we are) may give symptoms of increased heart rate and blood pressure. After the brain gets used to this, the nervous system regulates itself and the therapeutic effect can be seen. If it is true that high serotonin = lower norepinephrine, then in theory the body would regulate itself to produce less norepinephrine. Of course with those kind of vitals you would be hard pressed to find any doctor willing to keep you on it long enough to find out, lol Dr. Randy Thompson from the POTS Changes video describes the use of SSRI's in terms that are easy to understand. Here's a link to the video: http://www.youtube.com/watch?v=4rtcw23CFqo&feature=related

I think it would be important to clarify what testing everyone had done? Many doctors only test for Celiac disease and they do NOT test for a gluten intolerance. The anti-tissue transglutaminase is specific for celiac disease, where as anti-gliadin can show a gluten intolerance. Therefore if someone went to their doctor asking to be tested, and the only test that was performed was the anti-tissue transglutaminase test (which is often the case), they can still not be sure that they dont have a gluten intolerance. For me, my anti-gliadin was off the charts, but my anti-transglutiminase was negative.

Does anyone have this? My neurologist said that I have ankle clonus and I am wondering if this is a common finding in POTS? I could not find any research relating clonus specifically to POTS.

The disturbing part with POTS is--we dont even have a good grasp on what the faulty mechanisms are .....let alone what is causing them to be that way.

Lets all think back to birth and find a commonality of where we went wrong!! lol. I think epigenetics are incredibly interesting too. We just have to figure what will turn OFF our POTS genes. Understanding what turned them on in the first place would help..... What I find interesting is how different disorders are classified. For instance, Schizophrenia is said to be a psychological disorder, and Parkinson's is not --even though one is thought to be caused by an excess of dopamine and the other a deficiency. Just because the symptoms are different, does it really make Schizophrenia any more "psychological" than Parkinson's? All of these disorders (Depression, Anxiety, Schizophrenia, Parkinsons, POTS) have a neurohormonal imbalance. I feel that it is a big mistake to think of Depression, Anxiety and Schizophrenia as any less of a physical condition than Parkinson's or POTS. It creates a barrier where the global function of the nervous system is typically segmented. How can we ever fully understand the nervous system if we are only studying parts of it that seem to relate to specific symptoms. With hormonal imbalances of any kind I believe that the interplay of ALL hormones needs to be assessed--whether they appear at first glance to be involved or not. I guess you could say we are all just one big hormonal mess, lol

Beautiful Issie!!!!!!!!!!! <3 <3

Ugh. Stories such as this one do not help. There may be some people who do have small hearts and that is the cause of their POTS, but for many of us, our hearts are of normal size and we were quite active before becoming disabled. I wish the focus would be taken AWAY from just the heart and shifted to the NERVOUS SYSTEM, which is the real issue. Sadly, America is once again misinformed.

My ANS is broken I actually have trouble with both. When I'm hot I get very dizzy very quickly, but when I'm cold I get tons of PVC's and my hands and feet feel like they will fall off.

We should also remember that even Beriberi (which has symptoms very similar to dysautonomia) comes from rice. The connection between food and nervous system effects is strong.

Here are a few interesting articles on gluten and its effects on the nervous system: http://www.ncbi.nlm.nih.gov/pubmed/16967315 http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2661192/ http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2077388/

LOL Rama you crack me up I've done my best to cut out all grains, but have not been completely successful. It's very difficult because you basically have to make all of your own food from scratch, which is very time consuming (a bit too much for my schedule). I would say I'm 99% grain free and sugar free, and I have noticed a difference...although not as big of a difference as I had hoped. I have been doing it for less than 2 months, so maybe it will continue to improve with time? I know for a gluten free diet they always say you have to give it at least 3 months until you notice a difference in the way you feel. Unfortunately there are some people who have a gluten intolerance, but do not improve when going gluten free (myself included) --that's why I started looking at other things that I might be intolerant to (like corn, rice and sugar). Almond flour and Coconut flour are great substitutes for baking . That being said, research has shown that the type of neuropathy that comes from a gluten intolerance does NOT respond to a gluten free diet. I'm sure there are other illnesses that are the same way. However, if gluten IS a problem, the illness will continue to progress as long as it is being ingested.

Here is some information on the toxin/ fungal agent that they seem to always find in the soil where these animals are eating --very interesting : http://en.wikipedia.org/wiki/Fusarium It scares me a little bit because I have eaten Quorn . I was a vegetarian for many years and they make a yummy product that is a sub for chicken.

Yep it states that a toxin gets into the grass and then is eaten......which could also happen with humans with all the grass that we eat. Maybe some people are just more susceptible to the effects than others (or perhaps our own gut bacteria are not able to fight it off).

Issie--so sorry this didnt work long term . I am also taking B1 (along with a B complex) and it seemed to rev up my SNS at first too, but it really leveled out and now I definitely see a difference when I use it! I read in another post (I wish I could remember who) that someone was using a B1 cream and has had great improvements from it. She also said that at first it made her tachycardia worse. I'm not sure if this was her opinion or her doctors opinion, but she said that the more you need it, the worse it makes you in the beginning?! I dont know, but it sure seemed to be consistent with my story. In any case though, what works for one person, might not work for another! I hope you find what works for you very soon <3

Normally I don't post this kind of thing, but as a horse enthusiast I was kind of blown away by this. The fact that this equine dysautonomia is felt to come from "grass sickness" is particularly interesting. If food can cause dysautonomia in horses, why not in humans too? Interestingly Gluten is part of a grass family called Poaceae. This grass family also includes corn, oats, rice, sorghum, kamut, millet, teff, sugarcane and a whole list of other things found in the last link below. How many of us who are gluten free are truley avoiding everything in this family? I know I am not, but I think I am going to start. A source of potential "grass sickness' in humans?? http://en.wikipedia..../Grass_sickness http://en.wikipedia....Food_production

There is also a link between IST and Hyperadrenergic POTS, with some doctors theorizing that it is the same disorder. Both have hypertension and tachycardia, but there are some differences. With POTS the tachycardia occurs when standing, and with IST it occurs inappropriately (out of proportion) to what you are doing. There is some definite overlap between the two, and the lines are easily blurred. For example, I was diagnosed with hyperadrenergic POTS because my heart rate and BP dramatically increase when I stand up-- but my tachycardia is also definitely out of proportion to what I am doing when I climb the stairs or try to walk fast. My sister on the other hand was diagnosed with IST. Her heart rate does not increase with just standing up, but is way out of proportion to any type of activity at all. Typically if your resting heart rate is above 100 they will say you have IST, and if it is below 100 they will call it Hyperadrenergic POTS. From my own family standpoint I believe they are related disorders, though not necessarily the same one.

I have never taken either of them directly, but I have been exposed to them when my patients get breathing treatments. I do get very tachycardic and dizzy when exposed to them, but since I am not directly taking them, I really cant say for sure. I did have one experience where I was stuck in a room for the whole breathing treatment. At first I was terribly dizzy and sure I was going to pass out, but eventually it passed and I felt like I had been given a fresh set of lungs haha . I have no issues with asthma or bronchoconstriction so I was surprised by the difference I felt in my breathing capacity. Not sure that it did much for my POTS, although I was kind of elated that I had survived a whole breathing treatment without passing out

Have you ever heard of Trigeminal Neuralgia? ....Just wondering because the symptoms you are describing sound very similar....

I would be very interested in knowing the type of neuropathy that everyone has. There is a link between celiac disease/ gluten intolerance and peripheral neuropathy. Many of us seem to suffer from some type of gluten intolerance, which is interesting.

The interesting thing is that I was actually on an SSRI years before I developed this level of severity of POTS (I have always had it to some degree). It was only when I went off the SSRI that I started to not feel well. I really didn't connect the dots until recently when I started really thinking back and trying to pinpoint when I crashed. I have been toying with the idea of going back on an SSRI, but I know the potential is there to make me much worse as well. I think I need a long vacation to try out all these meds lol . There is a natural supplement called inositol, which works like an SSRI and apparently does not have a lot of the negative side effects. I have a friend with POTS who has benefited greatly from this supplement. Gives me some hope

Thanks for the replies!! I'm definitely going to look into getting one from either the CARE website or Walmart . I was wondering more about what do you put in terms of diagnosis, and not so much about the other things which you should have (such as name/birthdate/meds and allergies). Most doctors dont even know what POTS is, so EMT's will have no clue LOL. I was trying to think of how I could word it in terms that they would understand, and would get me the treatment I need as quickly as possible. Most likely the treatment I would need would be IV fluids, but they are more likely to give me a beta blocker before giving someone with hypertension fluids. I'm not sure if putting "idiopathic hypovolemia" is the right thing to do or not. It would definitely get me fluids, but its not an "official" diagnosis, more of a speculation. What do you think? Have you come up with anything else to describe your POTS in terms they would understand?

I definitely think serotonin plays a role in my POTS--just havent figured out how yet. I'm particularly interested in the 5-HT2C receptor... I wish more research was being done on this.

haha thats better thanks!

Do you have a medical alert bracelet, and if so, what does it say? For all the things I have wrong I really should have one Anyone know of a cheap place to order a decent one?

Hey there! The link doesnt work right..