ramakentesh

Do you feel, after a long day of orthostatic/standing activity, tired, shaky, trembly and very irritable?

yeah but i get very dizzy - so dizzy i have to hold on to something everytime i look upwards and bend my neck upwards - quite scary sometimes. And normalk people dont get that!

Throughout human history, people have often eaten foods high in sugar and high in yeast. Fruit juices, dried fruits and wines have always contained a load of sugar that is quite similar to the refined sugars some people in the west now bombard their bodies with. Sugar-laden wines and spirits have been a way of life in many countries for centuries - in Russia and Czeckslovakia people drink around six times more alcohol per year than people from other countries, but despite this high intake of sugar and yeast, we dont hear of candida infections being a problem in these countries. Candida is a problem for people with depressed immune systems, just as toxoplasmosis and a host of other bacteria can also be given that environment. CFS and Lupus could provide these kinds of circumstances, but i have never seen a record of average people who eat lots of sugar having a depressed immune system because of it. The only place we hear and read about candida is from developed western countries. I believe it is because there are a vareity of medical conditions that we cannot explain that yield symptoms that people want an explanation for. At the end of the day Candida has been around for 20 years or so, yet there isnt one credible scientific study that demonstrates that normal, healthy people who eat a modern diet are being infected with chronic candida infections that yield a huge variety list of symptoms that could be caused by any medical condition.

For me sleep can only be guaranteed with an early rise. If i sleep in - and since pots started i ALWAYS feel like just sleeping forever - i feel wired that night and cant sleep - get weird pressure feelings in my head that wake me up. Or i get a migraine and my heart pounds all night which makes it hard as well.

well since i got four migraines in a week after trying the poor mans florinef - licorice tea - i would say that florinef will probably result in the same thing for me unfortunately.

Sugar is a weird one. I remember being told about Candida and all that, but after a four month sugar free diet i didnt feel that my POTS symptoms were in any way better, and it wasnt until i increased salt that i improved. Without wanting to sound bad, I dont think there is really any factual evidence that high yeast and candida levels actually contribute to systemic illness - recent studies actually found that people with low parasite levels (low bacteria, yeasts and intestinal worms) have much higher and worse allergies. Infact, children in SOuth America were tested for allergies before being de-wormed and they were almost totally free of allergies. Then two months after de-worming they were all allergic to a variety of common foods. I would look at food as being more like a trigger. Certain foods trigger Migraines like red wine, etc. Many of these foods also trigger POTS to worsen. My way of looking at it is that maybe these foods require more of the bodies resources to metabolise/digest and as a result, our POTS worsens - perhaps due to more blood being utilised to metabolise these things. For me, thick carbs, yeast, red wines, dairy products or sugar in the evening are all no nos and can trigger Pots symptoms OR migraines

Im not sure i see the connection with facial flushing and autonomic storms - Ive had quite severe autonomic storms/basiliar migraines that caused restlessness, mental confusion, body tremors, feeling cold, tachycardia - particularly when my POTS started shortly after a virus. I dont think i get flushing - just a surging feeling in my head and my eyes fill up with bright lights and all this weird stuff. Do you think that maybe these events are mastcell activity?

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.