ramakentesh

With me it can change - I can drink coffee one day no problem, the next day one sip and my head is spinning. For me the things I avoid if im feeling sensitive are Cheese, Milk, coffee and seaweed - how weird is that? But when i go away from my home city i feel better and can eat all of the above no problem - i return and im sick again and cant touch any of these...

According to my dcotor POTS causes constriction of the arteries in the brain and the eyes - causing bizarre vision changes similar to those one would expect before a migraine. I used to have blurred vision, as well as sort of weird peripheral vision. it all began when i got pots and its how i can tell im coming down again.

its so weird - I was eating all the things over seas that usually send me off here in Melbourne without a problem - maybe something is causing the underlying thing and its making me allergice or have a reaction to more stuff. Ill have to work it out i guess. Starting with moving away from my sister's cat

Yeha I originally thought that - but the first time i went to a colder climate and the second time I went to a humid and very warm climate - both times I had defininate improvement within 48 Hours and similarly when i return I go straight into a pot hole within the same time frame.

Ive just realised the most bizarre thing. When i first went to university I moved to the city of Melbourne Australia and during that time I first got POTS. It started with weird symptoms before its onest such as dry eyes, dry skin, itchiness and other weird things. I started getting all the classic POTS symptoms and I was eventually diagnosed early last year. Since then my symptoms wax and wane - and IM ok as long as I avoid cheese. Ive just been overseas for three months on a highly stressful work assignment, but during that time my symptoms went away completely. In three months I only had one bad day. This is the same as the year before when I went away on a two week holiday - total loss of symptoms. This is even when I eat foods that would normally kick off an episode and which I cannot handle while in Melbourne. I arrive back in melbourne and have time off so there is no stress in my life. But as with the holiday last year my symptoms return within days - and quite badly - the groggy headedness, weird vision, body tremors, all the usual POTS symptoms. Im now convinced that something in Melbourne is causing my pots symptoms to worsen. It has to be some sort of allergy - what else could it be? The only things I can account for are that when Im in melbourne I always live with a cat - overseas and on holiday I never do, or maybe its the water or pollen in Melbourne? Is there a long term low dose antihistamine that might help?

mine isnt uncontrolabble. - the longer i stand the more irritable i get so i try not to go close shopping with my girlfriend to often - she usually takes a long time to decide.

My doctor goes the opposite way - he thinks that POTS patients have bodies that are heavily under stress from a constant surge in autonomic nerve activity from hyper adrenal responses to orthostatic stress. We exhibit symptoms similar to patients that are under real external stress because they and POTS patients both have high levels of adrenaline and noradrenaline in their systems. This ofcourse, leads to anxiety and panic - when i was really bad, and my symptoms were at their worst and my noradrenaline levels were described as highly excessive from orthostatic stress, i couldnt handle any stress without shaking, and was VERY jumpy about things - easily panicked. This was quite normal and from a physical manifestation of pots rather than a psychological disturbance. I get moody much more often since pots and occasionaly depression - my doctor says that you would expect this from the excessive nervous system overactivity as you would similarly from a thyroid overactivity.

im the same - always cold - get raynauds when im cold and my hands freeze and the veins over constrict. WHen i get those weird migraines or autonomic storms, my temperature drops so rapdily that it feels like im freezing and my whole body trembles. Ive never heard of that m drug - sounds interesting...

for me - icecream with real licorice helps fatigue - more so than straight tea as its too strong and gives me migraines. Secondly, heaps of sleep and thirdly a big salty bad breakfast of bacon and eggs is a pickup.

I also suffered from quite bad sensitivity for a while - i used to feel like crap after every thing i ate - everything made me feel worse when my POTS was at its worse. Medications would nearly make me want to jump out a window - so many sideeffects. There are a few theories regarding these problems - firstly, for POTS patients, some foods/substances tend to trigger symtpoms - i found out eventually that apparently i was suffering drops in blood pressure after eating. However, seperate from that i still cant handle meds very well - very hypersensitive to 99% of them (betablockers are the only ones i can handle). I read an article about the controversial diagnosis of of multiple chemical sensitivities and one study suggests there was an increase in poryphrins in the blood of sufferers exposed to certain chemicals - this means that they might be suffering (assuming it is correct) some kind of hyperreactive form of porphyria - whose symptoms include flushing, mental confusion, tachycardia, anxiety, psychosis, etc. Thirdly, the theory that is used for migraine triggers is that the chemical that protects the brain from substances in teh blood - the blood/brain barrier which is protected by MAO chemicals is some how deficient in migraine sufferers, so that certain chemical can travel through it and into the brain to trigger migraines. Red wind and MSG, etc. The evidence to support this argument was studies of people taking MAO inhibiting antidepressants who got migraine like headeaches from certain foods - red wine in particular - SO perhaps one of these posibilities explain your problem.??

over constriction would explain the raynauds type symptoms and pots being worse in cold peroids id reckon. Wonder if this is because of poor noradrenaline reuptake?

Yeah i try to not fight the insomnia, but then when i am dead tired at work for 8 hours life is miserable - but i do sleep well the next night Its a cycle i guess Thanks for the kind words

Atleast there are a few of us - i might move up north of australia where its always warmer The cold and i just dont agree at all - and i hate having cold hands all teh time.

Im improving, although winter knocks me back a peg - steadily, after the hellish first six months. But i still cant beat the periods of extreme fatigue and nights of insomnia. For the periods of profoudna nd exhausting fatigue im still struggling - Weird thing is if i take a betablocker when im really fatigued you would think it would make it worse, but i feel better! Caffiene is an abolsute no-no - licorice tea helps greatly, but then i get three migraines the next week. Any advice?? The insomnia i hate because on those nights nothign works - valerian, you name it - im still awake all night long. ANd it always seems to be a few nights after i injest a large amount of Yeast - but never before i had pots was yeast a problem.

terrible news - rough. Hope it all works out well. Thoughts and prayers your husband's way.

My doctor tells me that most people with POTS feel worse in hot weather and often feel hot a lot. He laughs at the fact that my pots seems to make me sensitive to the cold - i used to love it, but i get raynauds from even a cold breeze, and i feel cold all over. My symptoms are always much worse in the winter and improve in teh summer. I ahve to come home and have a warm bath to get my body going when i get home from work. Then in the heat of summer - everyone else is sweating and im out there in the 40C washing my car feeling great!

for me, all of the above as well as a sense of feeling VERY cold, pressure in my head that makes me feel out of it and very bad body tremors. Then feel unwell and mental fog for three days afterwards like after a migraine. My doctor even thinks that POTS storms are a weird type of migraine activity, because there isnt always a huge variation in BP - although there can be as we all know

im about to try ergotamine. Anyone used this for pots?

im in the same boat - cant even handle paracetemol without feeling ordinary - florinef made me feel terrible and i couldnt think straight - antiinflamatories and other things like that are just a no go for me. Its almost like my MAO blood brain barrier isnt working or something - all sorts of things give me symptoms. the only thing ive tolerated so far is betablockers at low doses - so for me i take a tiny piece of a crushed antihistamine tablet and it works for me fine without sideeffects. my doctor says that some patients are very hard to medicate for reasons unknown.

I get those wired feeling on nights. feeling like a cant fall into sleep mode, tachycardia baning in the head, rinign in the ears, sometimes weird visual changes and if you do sleep you get weird dreams like when your sick. My doctor tells me that these are the migraine equivalents that are the hallmark of pots - the blood vessels in the brain contract like at the beginning of a migraine (and you can actually start one of these nights by eating a migraine trigger food like red wine) and you get the miragine aura, but the vascular dilation of the migraine proper never comes - you just stay in the aura and your autonomic nervous system over compensates for the contracted blood vessels in the brain. If these are really bad, but can also get autonomic storms - for me they involve feeling VERY cold, low blood pressure, mental confusion, restlessness and my whole body just trembles like im having a fit - although i aint. betablockers and valerian can help.

i get those as well - when i first got pots they were so bad that my whole body would tremble, i would feel very cold and i would basically get this bizarre surging feeling in my head and be out of it. I often felt restless before the episode. My doctor told me that they were basiliar artery migraines, then my POTS doctor told me that they are more like one of two things: - migraine equivalents - they are apparently caused by the blood vessels in the brain contracting and unlike proper migraines, the vessels dont dilate and cause pain, they just make your entire autonomic system go haywire. - or if we look at those with POTS becuase of norepinidrine transporter failure, because their levels just get too high. My levels of norepinidrine/noradrenalin and epinidrine/adrenalin during a recent TTT were the highest readings they had ever had at a 45degree angle, by BP went up to 160/90 and my heart rate up to 160. And this is after i have imprved dramatically! but the high norepinidrine indicate mine is more on the hyperandrogenic type - although my doctor doesnt believe that there should be a distinction, since hyperandregenic patients still respond well to midodrine, indicating incorrect vascular constriction as well as an overly active sypathetic response to standing.

My doctor told me after i reported a variety of negative effects from florinef, that florinef works for the majority of patients, but that there is a subset of POTS patients that feel anxious and restless. I was jumpy, achy, mentally confused and had vision problems. When i reported these symptoms and asked whether this was because my body was adjusting, he recommended that i stop florinef immediately and try other medications. His feeling was that its better to try others before subjecting oneself to two-three weeks of hellish adjustment. So my advice would be hers - maybe try other medications before going back to florinef. As an example - i found the positive effects of licorice root to be the same as those of florinef, but with much less jitteryness and mental confusion. I did get migraines from licorice tea, but you might not. A combination of licorice tea and midodrine could refuce migraine activity.

SInce Pots is a manifestion of a variety of different disorders, and even the most researched doctor on dysautonomia suggests that their understanding of the varied symptoms and mechanisms in pots aare still in their infancy, perhaps its POTS that is causing this symptom as well. Although i havent had this symptom, i have had many other strange ones since i became ill with pots, so i am quite certain that they are POTS related.

it does sound terrible - but the adrenaline pumping with POTS couldnt be helping.

things that have helped me considerably. I didnt start improving until i started having a large bad breakfast of salty bacon and eggs - from the time i started this i improved. secondly, omega 3 and fish thirdly, valerian calms me down when im getting all trembly and lastly licorice tea - its like florinef but without the sideeffects - although i gives me migraines