ramakentesh

thanks Gena - my friend thinks its my blood sugar levels, but i ate a sugar and i still felt like crap. Ill just have to take it easy for a while i think.

I have a question im going to ask my doctor next time i see him, but i was curious. The other night I watched the football and drank a few beers. I know it isnt good, but sometimes i just cant resist - and i thought - what damage could that do? That night in bed though, I got that familiar weird feeling - where my body is shaking because it feels sooo cold, yet Im not feverish - i feel cold as well. So the symptoms are cold and clamy skin, tremors like im freezing, feeling weird in the head and sometimes an ache in the back of my neck. Could this be being caused by hypovolumia - i remember a few people here saying that sometimes they feel bad when they are hypovolumic - how can they tell? Or is this just another weird migraine varient? Ive had a number of off ones - basiliar and autonomic storms.

When i first tried licocrice root i thought I had found a goldmine! When i was feeling dizzy and spaced out it always improved my condition almost immediately. I found it a little hard to concentrate after drinking a full mug, but it seemed like an ideal treatment. The down side for me was that I got a migraine EVERY DAY after consuming just two mugs of the stuff for 7 days! I stopped and then started again with the same result. My migraines are real annoying - they stop me from sleeping properly, so i decided to deal with the occasional dizziness rather than stay on licorice and get migraines.

The last three times ive had the flu my POTS symptoms seem to lesson significantly. Maybe its because my body is too busy fighting a virus to hassle me with POTS??

I get lots of irritability and occasional anxiety at the beginning of my symptoms. Thankfully, i think the anxiety was more because i was freaking out about my symptoms and the high adrenaline didnt help. I still get irritable if i am forced to stand beyond my limit and my hands begin to tremble. I also got an electrode inserted into a nerve when i got my tilt table test done so they could see firstly whether i was hyper sensitive to adrenaline or was actually hyperadrenagenic - as some people might have normal norepinedrine levels upon standing or upright, but still have an overactive nervous system response according to the doc.

i started getting weird 'autonomic storms' and all sorts of weird migraine activity once I got POTS - apparently the predome of a migraine is caused by the arteries in the brain constricting before they expand - my doctor says that many POTS patients get predome quite often - nausea, sound sensititviuty, tunnel vision, but not always with an actual migraine resulting. I do get migraines, and also basiliar arteries migraines - that give you tremors, mental confusion and a weird surging feeling in your head. They seem to come in cycles or after i eat trigger foods

thanks for the replies guys - very interesting to read! Id agree with Briar rose - i didnt feel quite 'right' for many years before POTS really came out - if i stood for too long ive always got tired and shaky. Then something just brought it RIGHT out.

Marijuana causes impaired neurological function - orthostatic hypotension and abnormal heart rhythms. Recent studies also show that marijuana slows blood flow to the brain, a change that stayed in chronic users one month after they stopped smoking, which would or could result in similar feelings to pots. Orthostatic hypotension certainly wouldnt assist blood flow to the brain either.

A lot of people here seem to indicate that florinef made them feel worse rather than better? According to my doctor, most people improve on florinef, but when i tried licorice tea i had a week of nightly migraines. Do you think that florinef would be the same for me? Or should a betablocker help with the negative sideeffects?

Im curious to see the number of people here who got POTS out of the blue vs. those that got it slowly over time. I would also like to compare how these two different onsets might relate to improvements. For me, i had occasional but very slight POTS symptoms for a long time, and then i got the flu and shortly after this went for a run before i was better (my fitness instructor told me 'run the cold off.') - i got so dizzy that i nearly fell over. Two days later I had a shocking autonomic storm for the first time (rushed to ER and after eleven hours sent home and told i was 'suffering anxiety'). Then i was so dizzy the day after taht and so spaced out and the whole thing came on soooo bad that i could barely function, got 80 year old men to give up their seats for me purely by looking so bad, and generally was the most unwell of my life. gradually i improved over a period of a year and a half, and when i finally discovered I had pots and increased my salt levels, i was able to function almost normally after 18 months or so. As my doctor says - im doing ok, but i could still be better.

My doctor told me that my anxiety was related to my pots - betablockers work for me when im anxious - makes me dizzier, but atleast im not freakin i guess!

salt and licorice tea - but the later gives me migraines every day for a week...

Weird thing about these autonomic storms - and ive had my fair share - start with feeling tired, then cold and mentally confused, then my vision goes weird and i start getting the shakes, feeling cold and clamy, yet hot and flushy - then i get these surging feelings in my head - is that they are very similar to migraines. My doctor even thinks that they are a type of 'migraine equivalent' similar to basiliar migraine. Infact, if you go to a website that talks about basiliar migrains and ask them to list the symptoms of this migraine it is identical to our autonomic storms. How i found this out, was that my autonomic storms started making me feel nausea and then i would get sound sensitivity - then they basically turned into classic migraines - with that same feeling aweful for days aterwards and really bad POTS symptoms afterwards as well. Complicated migraines also cause palpatitations and tachycardia. Not something your average GP will ever acknowledge! I alywas compabt them with two things - an aspirin and a betablocker. Aspirin seems to work surprisingly well, and i didnt believe it would work until i tried it.

Phew - im not the only one - i was worried i had some weird thing happening that was only me... Thanks guys!

I think most POTS patients suffer from sympathetic overactivity. Without it, none of us would get tachycardia in the first place, making it impossible to diagnose. My doctor says that whether POTS is being caused by vasoconstriction of the arteries in the brain due to an excessive adrenal/sympathetic response to standing, or is caused by low blood volume, or blood pooling in the lower limbs, since they dont really know why any of these are occuring, or ehwther they are seperate entities or facets of an underlying problem, the symptoms are pretty similar, although the cause might mediate the treatment. For me, Im all dizzy and spaced out in the mornings, then i get the shakes and the longer i stand or do physical activity, the worse my heart races, my hands tremble and the more irritable i get. I do get quite anxious as well at times - when i first got POTS more so than now, and sometimes before i get a migraine (which i never got much before pots) i get restless or anxious. The migraines are weird too - POTS has odd migraines apparently - much more all shakes and visual problems rather than truew migraines with pain for me.

sounds terrible Morgan! The shakes go away for me if i take a betablocker (which also healps the thumping heart beat in my ears) or some valerian

In the mornings when my symptoms are bad i feel the urge to drink and eat. If i dont eat or drink for a long period i start to feel out of it - like my blood sugar is low. But i never had this problem before POTS - maybe its the higher amounts of adrenaline taking all the sugar out my body or something?

I too spend most of my day sitting rather than standing, but at times if i feel ok i can go for a long walk in the evening - and i ony get a littel liht headed towards the end. The mornings are always the worst. I feel ok, then i have a salty breakfast and i feel good for about two hours, then i dip for about two hours and then i gradually improve. But if im exhausted from standing beyond my limit = or even sitting all day, i gat so shaky and irritable.

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?