ramakentesh

im worried about Florinef sideeffects. Ive tried it before and i got considerably migraines from it - not as bad as licorice tea, but still annoying. Anyway my doctor wants me back on it after my TTT and for a longer period than two weeks (thats how long i lasted) Do people get moon faces and otehr sideeffects from a dosage around 0.1 ?

I had my third TTT two weeks ago and the results were quite amazing. Ive been feeling pretty much better recently, so i surprised by how bad these came back. My heart rate peaked at 160 beats - my adrenaline and nor adrenaline levels went so high after being tilted for twenty and thirty minutes at 45 degrees that my doctor said they were the highest he has ever seen - NA went from 197 to 468 and this was described as a 'extreme overreaction from my sympathetic nervous system to orthostatic stress' - no wonder im trembling all the time! my blood pressure went up from around 120 80 to 160 over 90 when i was standing. So rather than a decrease i have an increase. This could still be caused by hypovolumia appraently, so im going on florinef again. Im worried about the side effects - i dont want a moon face!

My test results basically demonstrated why people get tremors with POTS - particularly after long periods of orthostatic stress. My adrenaline and noradrenaline levels trebled from around 202 to 454 after being tilted to 45 degrees for twenty minutes. These levels were described to me by my doctor as extremely excessive. In a nut shell, the sympathetic nervous system - either causing POTS or responding to inappropriate vascular activity in arteries or due to hypovolumia - become overactive to compensate for the lack of blood pressure/volume to the brain. This results in body tremors, and 90% of the symptoms caused by POTS. Because our bodies tend to have higher than normal sympathetic nerve activity and heightened noradrenaline levels, we are more prone to excitability, anxiety, migraines and other neuroirritability. My doctor suggested that all POTS patients are 'wired and tired.'

i get itches a day or so after drinking alcohol and i often get a migraine a day or so after drinking (well a pots migraine which is apparently a little different to your average one). i definately find that my symapathetic nervous system is worse after drikning alcohol, but the dizziness doesnt seem as bad.

WHen i got pots i also started getting chronic back pain. since then every time i pinch a nerve i dont get the one or two days of pain i used to get, i get a month of pain. My nerves dont seem to heal as quickly. My back is a pain in the butt- literally if one sciatica isnt annoy me its the other. Never had any back problems before.

Has anyone else noticed that the foods that often trigger symptoms seem to be able to be classified into two or three categories. Foods that contain high Trymine (sp?) contents that are known migraine triggers all give me bad symptoms - these include aged cheese, red wine, and other common migraine triggers. Ive noticed that i only get that sinking hypotension feeling after eating when i eat Cheese or heavy carbs like wheat and oats - and i assume this may be because more blood needs to go to my guts to process this?

i find that anything that puts stress on my body results in worsened symptoms

wow! Im not the only one. Its the most obscure thing, but every time i put it on at night i dont sleep a whisker. Weird eh?

For me i awake very shaky and after eating breakfast - especially a saly one - it improves. If i exercise or stand for a long time during the day - sometimes even sitting all day, i get very fatigued, irritable, and my hands tremble quite badly. This is probably my most common symptom - i dont mind it when compared to the insomnia, dizziness, fatigue and migraines!

I was told i had CFS as well - although i couldnt work out why since my immune system wasnt abnormally weak, and I had never heard of CFS patients who trembled all the time when standing or got dizzy and had heart palps. The test you had isnt really good enough - a proper TIlt Table Test should also measure the narrowing of arteries in your neck upon standing, norepinidrine levels upon standing as well as heart rate increments. POTS goes up and down, so you might have had a good day when tested. A good way to pass the test is to drink two or three beers the nigth before - i did this because it always makes my symptoms more obvious - so that i was sure that I would be at my worst when tested. (sounds crazy, but i wanted to be sure i wasnt wasting my time) Some links that I would very much suggest for you are: Bloodvolume and CFS (POTS often have low blood volume) http://www.pediatricnetwork.org/medical/CF...cbloodvol99.htm http://www.findarticles.com/p/articles/mi_...103/ai_53668212 http://www.nymc.edu/fhp/centers/syncope/or...intolerance.htm http://www.ndrf.org/orthostat.htm

I bet this is one symptom that no one else will be weird enough to have - when i rub tiger balm on my sore nerve in my leg, i get insomnia and cannot sleep all night. Now that is weird!

I tried some bilberry tablets and they did seem to help - and drops every morning has helped the pain. I also find that reading or using the computer for long periods - especially if there is glare - makes me get a headache and very sore eyes. I tyry to avoid reading or computers five hours before bed every day and it helps in the morning

'I suspect that for many of us, POTS is related to a problem with albumin homeostasis. Emma said that for some people with POTS, the body just doesn't make enough albumin, or maybe it consumes it too rapidly. My theory is that the kidney's "critmeter" then adjusts the red blood cell mass to match the abnormally low plasma protein. Then, the adrenals work overtime to try to compensate. The result would be hyperadrenergic POTS. ' If that were the case it should be quite easy to demonstrate this. I think you might be on the right track, but if you use me as an example there could be problems as well. Firstly, my BP rises when i stand and I have hyperadrenegenic POTS. My albumin levels are actually high normal rather than low, although my overall blood volume is low. I guess if this were the case, the increase albumin could only be considered in reference to my current blood volume and could still be quite low when compared to a normal person. Many people with POTS have a type of hypoglycemia problem, but from my understanding the vast majority of POTS patients can pass a glucose tolerance test despite getting an adrenegic reaction to going without food in the morning or after high glucose consumption. My guess is that POTS is related to complicated migraine activity, since it can be triggered by similar foods to migraine triggers - but even then i dont feel that this theory adequately covers many of the symptoms so its just a guess. Good luck with your theories anyway - hope you find the answer - i for one would be VERY happy!

When i got pots i had constant blurred vision, tunnel vision, weird migraine-like flashes in my vision, and i got vitreous floaters so bad that it was like looking through a curtain. My eyes have been sore and painful constantly since it all started. My eye pressure went from 16 to 19 when i was real bad - 10-20 being the normal parameters, so there is definately something going on with POTS and eyes.

My doctor thinks that there could issues with the kidneys in regulating volume, but i guess if it was an easy thing to work out it would have been by now.

thanks for your reply. My point was more that it seems to make sense that its the autonomic nervous system that is at fault rather than the hypothalamus. ofcourse it could well be the hypothalamus as no one really knows, but if it was, you would expect more than just the ANS to be effected - you would expect pituitary and/or thyroid and/or adrenal problems as well, and generally this isnt the case with POTS, it purely an autonomic nervous system and cardio-vascular/blood volume issue.

It was one of my first symptoms too - i mentioned it to my doctor and he was interested in finding out if others also had this symptom. I hope you all dont mind me referencing this thread for him to read.

Interesting - i have similar problems with my wisdom teeth.

My understanding was that they were still uncertain whether POTS was an autonomic nervous system problem primarily, or whether hypovolumia/barocontsriction of arteries or hyporenin levels were causing the nervous system to compensate, creating neurohyperirritability. I guess if its the ANS that is the problem then perhaps the hypothalamus could be at fault, but this small pod in the brain also regulates thyroid function, adrenal function and other glandular hormones - surely if it was damaged - wouldnt we see problems with the functions of these systems in POTS patients? My understanding of the nausea with POTS was due to vasoconstriction in the brain - very similar to the beginning of a migraine.

Irlen sounds interesting. My dad had a heart problem that reduced blood to his brain and when this started he also had problems dealing with neon lights in malls and supermarkets and like me, felt that crowded malls made him over stimulated or something. So perhaps there is some connection with this syndrome and reduced blood flow to the brain.

Thanks for all the replies - its always so comforting to hear that others have this same problem - because i get it quite often at work and its very hard to deal with. I too also get it sometimes from staring at the computer as well for some reason. I remember one time at the mall i was just sooo out of it that an elderly man with a cane gave up his seat for me and it was like i had become disconnected with reality or something - almost like i was there but my senses were gone. Now days i only go on good days and im straight in and out!

Is it because i get over stimulated - for some reason i can test how my POTS is on any day by walking into a crowded mall under neon lights - if im bad everything is too much and i feel like im going to fall over from dizziness, and it feels like i cant keep up with the rush of people. My work, also under neon lights and also very fast paced and busy can make me feel this way as well - its like my brain just cant keep up and i start getting spaced out and dizzy - like im in a bubble. I read on the site that things to avoid include crowded areas - so this must be something others have felt as well???? Can anyone relate?

I amazed an ignorant doctor once by taking in a block of cheese and getting him to test my blood pressure before and after I had eaten it. He couldnt believe that cheese could make my blood pressure drop so sharply and then return to normal minutes later... Its like a sinking feeling - quite unpleasant

I have worked right through my POTS problem. I was going to work even when i was so sick that most of the time i felt like i was on a different planet - dizzy and mentally confused and trembling all over. SInce the doctors couldnt find anything, i just told my bosses that i had a thyroid problem but i didnt know what was happening for a year and a bit. FOr me, i find that work and crowded places where you can get easily over stimulated or where you have to be completely on the ball and must rely on high energy levels always make me feel worse. Work is a struggle some days, other days since ive started to improve and have increased my salt have been a lot easier. I work in an office environment that can be stressful at times, but not physically draining. That being said, the meetings under neon lights and all the staring at computers makes my more dizzy than usual. Does anyone else find neon lights, computers and busy crowded environments make them feel worse? I did reead this in the symptoms page on this site so i assume its true for others as well?

ive been there too - i cant stand the arrogance - the assumption that if they cant find what is wrong from the most cursory of examinations then it must all be in your head. I finally found a dysautonomia specialist and i was surprised with the amount of odd symptoms that he was aware of that I had never mentioned to any doctor becuase I knew they would think me mad.