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My pupils are definitely messed up, but I tested negative for the antibodies. They say that a negative antibody test doesnt necessarily mean you that you dont have it --it's just not a definite "yes". I would really like I definite "yes" one of these days . I have constricted pupils too Rama, and I am incredibly sensitive to light. Typically dilated pupils mean SNS activation, but I seem to be the opposite if that is possible, lol. I also have anisocoria (uneven pupil size), but it's pretty mild--It's always my left pupil that is bigger though. I also have ptosis of my left eyelid that comes and goes. As a side note, my sister has HUUUUGE pupils and has Inappropriate Sinus Tachycardia (a sister to hyperadrenergic POTS) I would love to try Mestinon but havent yet.

The general consensus seems to be that POTS has changed our weights. I wanted to do this poll to see if there was any correlation between the type of POTS we have, and weight loss or gain. I assumed that people with Hyperadrenergic POTS would be more likely to gain weight due to the high NE surges and activation of cortisol on a pretty much continuous basis. People with hypotension do seem to fit more into the adrenal fatigue spectrum, which usually includes weight loss. I would love to have so many more people vote to get a really good idea of what's going on!

I loved this article but it worried me a little when I clicked to see what he wrote about defining POTS. The article itself was very good, but it did make the statement that (I'm loosely quoting here) "unlike other types of dysautonomia, SSRI's are not useful in POTS". The therapeutic effect of SSRI's in POTS has not been established yet. Some people with POTS do seem to be helped by them, while others arent....kind of like beta blockers.

Thank you for sharing!

I'm both high and low too. I really have no symptoms from high blood sugar, but a ton from low.

Trying to figure something out

Diet can make a huge difference Some people do need medications as well (I'm talking about type 2 diabetes here), but diet is typically the first treatment tried.

This is a great topic! Just this past month I bought myself a glucometer (you can get them for as little as $20). I was horrified to see my fasting glucose come up as 115 --basically that means I'm pre-diabetic. I am wondering how many of us are? Diabetes can cause all of the problems we face with POTS, yet I feel some of us might be flying under the radar. They have proven that pre-diabetes can cause the same detrimental health effects and full-fledged diabetes. What if our bodies are just more sensitive to it than most ? There have been some very interesting studies on pre-diabetes and autonomic neuropathy.

I definitely notice an increase in certain positions, and have noticed the same thing at the dentist, the podiatrist, and once in the ER when they laid my bed flat. They didnt even warn me they just pulled the lever and my heart went crazy. The heart patients that the hygienist is most likely referring to are those with heart failure. The reason is not because their heart goes crazy, but because they cannot breathe while lying flat. It's called orthopnea. :0) It occurs in some respiratory conditions as well.

I have a problem with taking certain forms of Niacin. I take a b-complex with the lowest possible dose.

What sort of testing have you had done? Month long holter monitors, stress tests, echos, CXR--these are all typical tests for cardiac arrhythmias. In my opinion, if you feel that something is wrong, then it needs to be evaluated. Month long monitors are very important because a lot of arrhythmias are short lived and can play hide and seek, lol. I also get copies of all of my medical records and read through it with a fine tooth comb--things can be, and are missed all the time. I am actually in the U.S.A not the UK. It has been a looooong hard road getting diagnosed (I have had these problems my whole life). It wasn't until the past few years that I got very fed up with waiting around for doctors to order the right tests. I do a lot of research and reading, and actually ask my doctor for specific tests that I feel may be beneficial. My job helps with being taken seriously, but even without that there are things you can do. If you present them with scientific articles that can support your request (in other words, no wikipedia --think research articles--pub med is a great place to find them), they will take you more seriously and be more likely to order tests. Be aware that family doctors are generally not the doctors who will order unusual tests--you need specialists such as Cardiologists, Neurologists, Geneticist etc. Just be very persistent and try to put aside the fear of what they might think of you. Your health is more important than any one person's uninformed opinion of you . Hope this helps!!

Hey Shoegal! Yes atrial tachycardia is one of the more rare forms of SVT. Do you know what type of atrial tachycardia you have? I actually work in cardiology, though I cannot give you advice. I can tell you though that depending on what type of atrial tachycardia you may have there is a potential for decompensation into heart blocks (which are dangerous). This is just my personal opinion, but for me personally, I would be very cautious of any cardiologist that would send me away with IST and atrial tachycardia. These are not normal rhythms and they do need to be monitored and treated if possible. Any type of tachycardia (POTS included) can lead to an enlarged heart called Cardiomegaly. This in turn can lead to heart failure and a host of other life threatening issues. I'm not saying that to scare anyone, just to create awareness that tachycardia is not a benign arrhythmia, and does need to be treated.

Ive never taken Airborne sorry I hope you start feeling better soon though! And go to the ER if you need to!!

Antiarrhythmics can definitely work. Just remember though that any antiarrhythmic also has the potential to be a proarrhythmic (meaning can cause more arrhythmias). Everyone is different though, so what may work well for one person might not for another. We all seem to be unable to take beta blockers though which is interesting, lol.

The only thing that was noted as abnormal with my MRI is that my pituitary was shifted slightly left of midline with nothing to account for the shift (no tumor, etc). Since my microbiology teacher instilled in us "form = function" I do have to think it would affect the function in some way.

I have never tried to post a picture on here, so I'm not sure if it is doable or not, but it would be cool for us to take pictures of our MRI's and post them to compare .

This is such an interesting topic and observation Sue! It also goes along with the Driscoll theory. To my knowledge I do not have cervical stenosis, but I do have a lot of pain/pressure in my neck, and a lot of pain when trying to bend my head backward (eyedrops are torture to put in my eyes). Now I am going to review my MRI's to see if I can find any stenosis! I probably should just get a spinal X-ray, but I've been putting it off. I should also get a CXR soon to check for hypertrophy, but I keep telling myself that knowing wont change it, lol.

I think it's important to be hopeful no matter what. The truth is that we dont know enough about POTS to really establish outcomes, so I choose to believe that it is possible to recover. I personally have several factors going against me (ehlers danlos, strong genetic history, a gradual lifelong decline), but I am still searching for something to help me --even if just to relieve some of the symptoms. I think we can all improve the quality of our lives, and be hopeful that a recovery or scientific breakthrough will come.

I often forget to breathe too. I even do it during sleep (called central sleep apnea)....its pretty scary .

I am exactly the same way! I have mostly elimated sugar from my diet, but the rare times that I do have it--I definitely dont feel well afterward. You would think this would stop me from ever wanting to eat it lol

The other thing it mentions is serotonin toxicity, although I am not on any SSRI's to cause this.... . I'm so confused now .

yep! and B1 deficiency can be induced by eating polished rice.

From what I know about it, there is an association with either brain lesions or spinal cord lesions. No lesion has been found on any of the 3 brain MRI's that I have gotten, and now I'm wondering why no one has checked my spinal cord I'm really sick of having to be the one to suggest things to my doctor. 99% of the tests and care that I have received have been initiated by me...... this just shouldnt be.

I cant really give you an answer as to if SVT is a product of POTS, but it is interesting that many of us do have SVT in addition to POTS. Have you had this arrhythmia evaluated by a doctor? I actually have Atrial Tachycardia, which is a rather rare form of SVT. Unfortunately they cant easily ablate atrial tachycardia, so I am living with it. Most other forms of SVT can be ablated, and if you have Wolf Parkinson White (WPW) it is something you definitely want to have evaluated and treated because it has the potential to be fatal. SVT is very scary when it happens and feels like complete crap. The first time it ever happened to me I was exercising and wearing a heart monitor. With POTS my heart rate is already way above where it should be, and I do get dizzy, however when I get SVT I get so weak I cannot even lift my arm to my head (to call 911), let alone stand up or exercise. My heart rate went from 140 (I was slowly walking on the treadmill) up to 220 and would not come back down even after lying down. After having many many many bouts of SVT I decided to try to get an ablation--that's when they realized that it was atrial tachycardia and unfortunately it could not be ablated. One thing I know helps break SVT is to put and ice pack over your eyes. This stimulates your vagus nerve and will lower your heart rate. It works a million times better than bearing down . So sorry you have to deal with this too . It's no fun.

I know! Im glad they value awareness more than $$ .