ramakentesh

My doctor said that in his experience it did not generally seem to be hereditary - but that since they didnt really understand the many causes and mechanisms it was too early to tell.

If i were to look at those two types of POTS i would say that i probalby fall More into the second catagory, rather than the first - that is i dont have pooling in my legs, i do have hypovolumia and i do have constant hand tremors that are worsened by standing and i get migraine-type phenonema. My doctor sort of put POTS to me a different way. He said that basically, there are a variety of possible causes - some patients have low blood volume, others have blood pooling, others just have such an overactive response to orthostatic stress that the adrenaline actually further constricts the arteries to the brain resulting in even greater dizziness, and as a result even more tachycardia and tremors. He feels that the distinctions are just really speculative at present, but that there are three or so different manifestations that he sees. At the end of the day, despite what is causing it, the autonomic nervous system will go into overactivity to compensate - resulting in very similar symptoms. The thing about the migraines is that POTS causes a type of 'false' migraine. He explained to me in detail how a classic migraine will constrict arteries before it actually dilates them - and in POTS patients there seems to be a mechanism where the arteries go into constriction causing a varierty of odd migraine-like symptoms, but enver result in a true migraine. He said that most patients find that once POTS is on the scene, a patients migraines will be more frequent, but different.

ah I see - okay - i stand corrected Jonathan

Yeah i guess it would as if your adrenal hyperactivity is contributing to the problem then betablockers as well as florinef are the first port fo call.

I thought all POTS was hyperadrenegric. Otherwise, how does one explain the increase in heart rate that is usually the symptom that is relied upon for diagnosis. If the body was not over producing norepinepherine or the body was not over sensative to the norepinepherine present upon standing, the sympathetic nervous system would not be overactive, therefore the symptoms of POTS (tachycardia, tremolousness, etc) would not be present. The tachycardia is a direct indicator of sympathetic overactivity or accessive norepinepherine levels. If there is an obvious decrease in BP upon standing, according to my doctor, this is Postural hypotension, which he feels is quite different from Postural Orthostatic Tachycardia Syndrome. Accordingly, POTS patients can often have completely normal blood pressure upon standing (or even hypertension), but due to the vasoconstricting properties of accessive norepinepherine and sympathetic overactivity, blood flow to the brain is decreased to such a level that it causes dizziness. Thus you get dizziness, tachycardia, tremors, mental confusion, etc. My doctor told me that most POTS patients have an everactivity of their sympathetic nervous system upon standing upright for some time that is five times above that measured in normal patients. Lastly, as part of my TTT i had an electrode measuring my sympathetic nervous system and also a pipe into an artery measuring my BP and norepinepherine levels. It was all done at the sametime.

I know all about the odd migraines that one gets with POTS, and their increase in severity when i was taking licorice tea to increase my blood volume. Ive been discussing my migraines with my pots specialist and he told me that the migraines that are associated with POTS are usually different to normal migraines -they are what a normal GP or Neurologist might call 'complicated' migraine exquivalents that generally bring on many of the neurological and aura symptoms without the actual pain itself. Obiously this isnt always the case, but according my my doctor, the whole thing is caused by the same mechanism as pots - that is the narrowing of the arteries that supply the brain with blood due to the overactivity of the sympathetic nervous system. In normal migraines, there is a narrowing of the arteries before they expand and basically cause you pain - in POTS and in Pots type migraines, often it is just the narrowing of the arteries that start migraines in other people that give the symptoms. I did find an increase in migraines after trying licorice tea - i havent tried florinef, but it might be the same for me.

Many people here have mentioned that they avoid alcohol - particularly red wine. Red wine in my family has always been a no no due to migraines. When i drink red wine, i get a migraine or an autonomic storm (like a migraine, but i tremble as well?) and then i get real bad POTS for about a week afterwards. I was reading that Dr.Bell: http://www.pediatricnetwork.org/medical/CF...ary/nmh-cfs.htm was saying that he was interested both in the connection to autonomic abnormalities like POTS and migraines in connection with CFS. If we consider that the same foods may set off migraines as well as POTS, this could further that possibility What do people here think?

im having trouble working out when a migraine stops and an autonomic storm begins - they both seem pretty similar to me. I havent had a migraine or many pots symptoms for ages, then WHAM! Ive had 4 migraines in nine days - and pretty much constant POTS and aura symptoms as well. They are sending me for a brain scan, but i doubt they will find anything - as usual...

thanks for teh tip - ill try that out

ive been diagnosed with exactly the same thing - aural migraine without headache, or accompanied with mild sinus pain.

Ive been reading that many people who suffer pots have a variety of odd neurological symptoms - like muscle twitches, hand and body tremors, visual changes, blurred vision, tunnel vision, increased sensitivity to light and sound, etc. Many of these symptoms also occur during migraines. I have been having what some people here call 'autonomic storms', and during one of these i went to see my doctor - he seems convinced that it was actually a rare type of migraine - or atleast migraine related. Since we all seem to have neuro-excitability (a term a doctor once told me that CFS patients suffer from), could POTS be a strange form of migraine, could the autonomic storms (tremors, mental confusion, increased heart rate, restlessness) be a severe type of migraine aura - since both leave you with that same 'wasted and beaten down' feeling the next day. Or are the migraines a symptom of POTS caused by neuro-excitability - itself related to pots...???

'From my experience, yours kind of sound like tension. I say this because migraines generally are one sided' Id have to disagree - my doctor informed me that the pain can occur anywhere - from the face (sinus area), behind one or both ears, back of the head, and can be excruciating, or just throbbing, or the pain can be completely absent with aura symptoms only.

ive had major lower and mid back pain since the onset of my POTS symptoms but never before.

when i forst came down with the condition that created POTS in me i lost about 14 kgs in two months! It was so rapid they thought that my thyroid was overactive.

ive had pretty much constipation since i got pots. but tremors and shakes are one of my main and consistant symptoms.

its nice to see an australian study that actually has some progressive ideas.

your right - ive read that before. I think its probably yet another problem that adds on to my pots - high adrenaline system means bigger reactions to glucose according to my doctor.

thanks for the feedback - i think its quite weird how this particular exercise sets me off - it makes me wonder whether there is an issue with the muscles in my neck or something - or just plain exercise intolerance. Ill take it easy for a while.

since i have been feeling better, i decided one day - probably stupidly - to do some weights - i did some weights and then some chin ups. then next day i had the worst orthostatic intolerance ive had for ages - dizzy, weird vision, floating feeling, feeling out of it. I improved, then tried it again - same response the next... I wonder why this could be? Other exercise no longer gives me this problem.

just as an aside, people with Mitral Valve Prolapse Syndrome and POTS are reported to exhibit hypersensitivity to adrenaline - despite often having normal plasma volumes of these hormones.

I get symptoms where i start feeling very cold and tired, then i feel a feeling of uncomfortable-ness and weakness, my skin goes pale and my veins dissappear on my arms, then my body starts to tremble uncontrollably - and i get a strange surging in my head and my vision goes weird. The whole thing lasts about twenty minutes, but i have a strange feeling of mental confusion and restlessness that stays for about two more days. Since these episodes started - and they are usually preciptated by a period of little sleep, or even minimal alcohol consumption - i have had orthostatic intolerance and dizziness, vitreous floaters, weight loss (which has improved), hand tremors, foiod allergies, feeling cold all the time, and palpitations. Ive been diagnosed with POTS, but no cause was found or looked for other than confirmed low blood volume. I have found that a betablocker does make the 'storm' more bearable.

I often get these kind of hypoglycemic feelings in the morning when i havent eaten for a while - i get shaky, out of it and feel unwell until i eat. My blood sugar was tested and most of the time - once during this symptom, it was found to be inside the 'normal' levels despite my symptoms. I have read the information on that site above, but its unfortunate that no doctor i have spoken to has read this anywhere or even acknowledges that this is the way that research is going in this field. I would love to see a study that indicated that.

I am surprised by some these responses. And maybe the way i wrote my post has caused some of these problems. I was just chatting with this guy out of the blue and wasnt suggesting anyone should take anything he said as gospel - i just thought people might be interested in his unpaid for opinion during a down-to-earth discussion at a party. He raised some points that i hadnt considered, so i thought it would be ok to post this info. Whether any of it is valid or not, i thought it might interest someone. I was talking to this guy for some time, describing my symptoms - and i have hypovolumia and diagnosed POTS and have had for a year and a half. He understood entirely that low blood volume would have in his words an 'incredibly detrimental affect' on the living standard of any person and also sympathised greatly with the fact that it would be particularly hard to diagnose this kind of condition. He also talked about hypovolumic shock and what happens if blood volume goes down in a rapid timeframe. On that note, we both agreed that taking salt tablets/florinef/other substances that increase blood volume, would significantly improve the living standard of any person with this problem. What he said was that if the low blood volume was a body response to things like an unknown cardiac, kidney, or artery contsricting dysfunction, then increasing blood volume might put a person at danger of further health problems. This was assuming that the reason for hypovolumia in POTS patients is unknown, and to my understanding there isnt any definitive answer as to what causes this in POTS/CFS patients. I explained that most people take these agents and lead healthy lives for many years without detriment and he suggested that perhaps the kidneys are the problem in regulating blood volume so maybe there is no danger in taking blood-volume-increasing agents. What he was more suggesting was that hypovolumia could be the answer to what might be causing these conditions in the first place - unless there is some demonstratable problem with renin levels being produced by the kidneys, then the reduced blood volume might be to compensate for other problems. WHen you consider that cardiac and kidney disease now days often require diaretics to lower blood volume to reduce strain on these organs.

When my POTS was bad I had all sorts of sleeop disturbances - surging feelings in my head, breathlessness, etc and light sleep that all affected me -

I was lucky enough to meet a senior medical researcher at a work function recently. He was involved in studies on autoimmune conditions and their causes for many years, and although he has moved on into other fields, was still abreast of recent developments in that area. When i talked to him about POTS - which he had never heard of at all - and its many symptoms, he was particularly interested in the relating hypovolumia that this condition and CFS also shares. In his opinion, there could be literally hundreds of conditions that could causes this, most of them being unknown - and that the hypovolumia would be a compensatory response to any of these numerous conditions. He could see many biochemical pathways that could be influencing this phenomenon. On one hand you might have dietary, viral or genetic problems that are causing your kidneys to excrete too much water. On the other hand the renal system may be acting to compensate for a problem elsewhere. For instance our arteries have stretch detecting receptors that act along with many other systems to regulate blood volume and hence pressure. I dont know where the current research is on these receptors but I'll bet we dont totally know how they operate. It is quite likely that they react to the enzymes produced by the surrounding tissue when under stress. If you had a defect in these cells making your vessels weak then your low blood volume would be a very desirable compensatory mechanism that the body has utilised to keep you alive. In all he was very worried about people taking meds to increase blood volume if there is a biological problem that is occuring that is making or bodies lower blood volume to compensate. The most interesting point he made was that when he was involved in this area, the current thinking was that many of these mysterious conditions might be viral in origin. He was told that there were currently about 40 virus known to have been integrated into the DNA of the majority of us. He explained that Researchers believe that in the end we will find out that their numbers are in the 1000s. Under the appropriate conditions these virus can activate and manipulate their host into reproducing them. This was what they were and still are investigating with a huge number of health problems.