ramakentesh

My advice would be to be patient - its extremely hard to not know what is wrong with you and to feel ordinary all the time while people around you see you as looking normal. Doctors can be frustrating - many are under time constraints and dont have the time or inclination to do extensive testing to see what is wrong with their more diffucult patients. The answer of 'anxiety' or 'depression' is so much easier to medicate and chances are most patients improve on an anti depressant irrespective of whether that is actually the cause of their symptoms or not. You need to find a doctor who is patient, open to alternative therapies and ideas and then start searching. I used to have to beg some doctors to let me get tested - they kept on just sending me to endocrinologists who just told me i had 'anxiety' or 'chronic fatigue syndrome' and that there was nothing they could do. I basically found POTS on the internet after a year of illness, asked my doctor to send me to a specialist and was diagnosed very quickly. The diagnosis doesnt provide me with as much re-assurance as I would have expected, since they dont really understand the cause of the illness, the outlook for patients is extremely varied and the treatment protocol is also dependent on each patient. I guess its the early stages of understanding these illnesses - some doctors now feel that all patients with CFS actually have varying degrees of POTS - so atleast they might be able to get a test out there that demonstrates the problem. My advice would be to find what helps you yourself. Do the research yourself and dont be afraid to doctor swith until you find a test that gives you a result.

When i first got POTS I found that certain things I could not tolerate at all - alcohol and caffiene were no-nos and licorice tea always created a migraine in me. Ive found the changing nature of POTS the most confusing - the changing nature of symptoms (periods of dizziness, periods of food intolerances that come and go and conform to no apparent pattern, periods of medicine intolerances that also come and go without any pattern) Now I can drink licorice tea without any problem, can eat any food without an increase in symptoms and a beer actually helps (i dont know if this is because of its beta-depressing effects or its vasodilation which used to be bad for me). Bet blockers used to help me greatly, whereas now they just make me feel more out-of-it. Licorice has been the only thing thats been keeping me going - and i used to have a bad reaction to it. The strangest part of POTS for me is that I only get it when im back in my home city -and it always goes away when im overseas or out of town. Ive tried to find a trigger that is perhaps stressing my body and turning POTS on so to speak and I still cant find one. But the changing nature of POTS leads me to think that perhaps it is an autoimmune disease or atleast a result of the body under stress from allergies or intolerances. The fact that people can be on a medication that helps and then after a while it stops helping as the nature of their symptoms change is also confusing. If there was one underlying cause of POTS like something like Thyroid nodules or something, surely by targetting that one thing it would improve, whereas with POTS it seems that when you combat one facet of the disease, another one comes along to make it difficult. I wonder if the recent finding in the UK of cellular changes post flu for Chronic Fatigue patients means that post-illness pots is in the same boat? Im just rambling a bit because im frustrated that I have come home to all my friends and family and feel sick when i was overseas for two and a half months with barely any symptoms. I wonder what stresses long-term pots has on people's bodies? DO people actually ever get permanently better??

yeah im not a fan of George either - betablockers help me with eh anxiety when its coming with George.

I have periods where I dont have low blood volume, yet i still have symptoms - so POTS isnt always related to low blood volume. I have had low blood volume, yet had terrible reactions to Florinef. My doctor doesnt make a distinction between Hyperadrenegic pots and the vascular pooling type, since he views the symptoms of the overactive autonomic system as a reaction to the decrease of blood flow to the brain unless the patient demonstrates poor noradrenaline re-uptake (making the symptoms purely nervous system)

these are a normal symptom of pots - most patients get these as a sudden rush of severe autonomic hyper function. They dont know if these episodes are caused by venous behaviour or are the result of an unknown surge in autonomic function - but the result is dilated arteries in the neck and brain and the nervous system comphensates by shooting off more adrenalin and this causes noradrenaline to further constrict the arteries. Beta blockers can help - but the wiped out feeling is identical to a migraine - my doctor even refers to these as 'sort of like a migraine'

Adrenaline supporting herbs have traditionally helped with chronic fatigue and POTS - but not because they assist the adrenals to function, but more likely because they increase blood flow and volume to the brain. Try licorice when your feeling fatigued - too much may give you a migraine, but its pretty good.

According to my doctor this is an interesting issue. The vast majority of POTS patients are worse when they hot - particularly in a hot shower or bath for the Reason Mighty mouse has described. But there are patients - such as myself that it actually benefits - i feel better after a hot shower or bath - feel better in very hot and humid weather and my symptoms are worse when im cold. I also get cold hands like raynauds - perhaps some of us just over constrict? A true Hyperandregenic version of pots (where the autonomic nervous system has poor noradrenaline uptake and there is no venous pooling issues would most likely result in a hyper constrictive state from what i can gather)

I was three months gluten free, two months yeast free and one month sugar free. Although sugary foods used to sometimes start a crash, i found no improvement at all in my symptoms - even the weird stomach issues I had when my POTS was really bad.

I try not to make it stop me doing much - but sometimes pots does

i lost a lot of weight when i first got pots - it just dropped off and was mostly muscle mass like when you have an overactive thyroid - so thats what they thought was my problem originally withthe hand tremors as well. i lost over 18kg in two months or something. Ive managed to put weight on - with the odd healthy dosage of guiness when i can handle it.

when i was really bad with pots i would get these periods of months where I would have daily flashing like the aura ofa migraine, but no migraine would ever arrive... Definately pots related according to my doctor.

'But I've been public speaking for 20 years and it really doesn't faze me psychologically. It's just my body over-reacts to any little adrenalin surge.' I can relate to this - I used to do weekly training sessions at work but once POTS set in I wouldnt be able to stand still and I would get all spaced out and jittery just from the normal nerves of having to talk to a large group of people. When i was really bad i couldnt even watch a scary movie - quite sad really...

I dont think they are a type of seizure. I usually used to get them if i had drank too much alcohol a couple of days before i think. morgan sums it up well

Ive spent so long trying to work out what caused my sudden onset of POTS - i had never been a particularly good long-term stander - when i was younger I would get pale and feel super-tired if i stood for too long but i thought this was normal. When I first moved to this city i developed a whole lot of weird symptoms - weird rashes, itchiness and other strange things. Then one night I woke up with 170 tachy, fighting to stay conscious and having trouble breathing. I got a major run-around and was treated like I was insane until I found a doctor who was open to researching my symtpoms and we came up with POTS. I too have blue eyes, pale skin and a celtic background. I had a cold about four weeks before this onset and I had been exercising very heavily and pushing myself a fair bit. I had also drank two beers that evening From the onset my body cannot handle caffeine - if i even sip the stuff i freak. Now days it ebbs and flows and when i get out of town I always feel better after a couple days only to return and get it worse the longer i was away. One thing that really helped was licorice tea but it gives me migraines - so its a balancing act. The hardest part for me is how hard it makes normal life - its hard to talk to people when your having trouble focusing and you are concentrating so much on trying to stop yourself from collapsing or zoning out that you cant really concentrate on the person your talking to.

'We're only young- there will be a cure before we hit 30, ' What about by the time i get to 30 - one and a half years - fingers Crossed!!!

thanks for the kind words. I was tested for M Gravis a while back among other things and thankfully I was negative. I have a job here in Melbourne so ill have to stay for a while unfortunately - gives me time to work out what might be triggering it here though I guess. Then i might get a transfer somewhere else. As for now - Im just resting.

i found the article: Chronic fatigue gene signs found Scientists believe they have pinpointed biological markers of chronic fatigue syndrome which could help develop a test and treatment for the condition. CFS, or ME, makes people feel extremely tired, and can cause weakness, headaches, and disrupted sleep. Scientists, now based at St George's Hospital, London, found differences in the way genes are expressed in white blood cells of people with CFS/ME. But others say the New Scientist findings may not explain all cases. It is also due to be published in the Journal of Clinical Pathology. The scientists say their findings fit with the understanding that a virus, such as Epstein-Barr, may trigger CFS/ME, because that illness might alter how genes are expressed. CFS/ME often first appears as a flu-like illness, but does not then go away. 'Hijacked' The researchers compared levels of gene expression in the white blood cells of 25 healthy people and 25 who had CFS using DNA chip technology. They found differences in the behaviour of 35 of the 9,522 genes they analysed. Further genetic testing showed 15 of the genes were up to four times more active in people with CFS, while one gene was less active. Several genes the team pinpointed play important roles in mitochondria, the "powerhouse" of cells. One of the products of these genes is EIF4G1, which is involved in the protein production in mitochondria. EIF4G1 is hijacked by some viruses, so cells may compensate by increasing gene expression. The genetic differences lead to changes in how blood proteins behave which could allow the development of a blood test for CFS, the team say. Other genes are involved in regulating the immune system or playing important roles in nerve cells. The team will now carry out further research on 1,000 CFS patients and healthy people. Not 'made-up' Dr Jonathan Kerr who led the research team, which is currently in the process of moving to St George's, said: "The involvement of such genes does seem to fit with the fact that these patients lack energy and suffer from fatigue." He added the work could also potentially lead to a treatment for the condition. "We have shown that a significant part of the pathogenesis resides in the white blood cells and in their activity "It will open the door to development of pharmacological interventions." Dr Russell Lane, a neurologist at Charing Cross Hospital, in London, said: "This exciting new work shows that some aspects of this complex illness may be understandable in molecular terms, and that CFS is not a 'made-up' illness." Chris Clark, chief executive of Action on ME, told the BBC News website: "The prospect of having a diagnostic test is very encouraging because many people with ME can currently take well over a year to find out what is wrong with them." Dr Neil Abbot of Merge, a charity which funds research into CFS/ME, said: "CFS/ME can have very different effects on patients. "We're not looking at just one condition with a definitive patient group. "So it might be hard to get a gene signature which works for everyone with CFS/ME." But he added: "This research probably won't be the answer for everyone, but it is still very interesting." Story from BBC NEWS: http://news.bbc.co.uk/go/pr/fr/-/1/hi/health/4702515.stm

Having just returned from two months of 100% normal health overseas and finally the feeling that I might have moved the POTS thing behind me (background - symptoms started abruptly in 2003 - progressed until June 2004 and gradually improved until xmas 2004 where I have been fine - finally diagnosed Jan 2005 no treatment required due to improvement - bad reaction to all treatments offered - TTT demonstrated the highest nor adrenaline levels recorded in that testing centre - shucks ) I have suddenly crashed SUPER bad - my vision is all weird again all the time, Im tired, dreadfully dizzy, foggy headed and trembly - its just so frustrating that just whenn you start to think this is behind you it whams you in the head again! My eye lids are starting to dropp like they did when i was really bad again - im starting to worry that this is gonna put me back where i started. Ive had some bad relapses but most last two to four day and im fine - its now ten days since this started (two days after returning from overseas so you can understand why i think its something environmental that triggers it here! My last crash was the year before a day after returning from a three week holiday in NEw zealand where i felt almost recovered). My only hope is licorice tea which will result in its usual 5 day period of migraines - but it will get rid of this terrible brain fog - brain constricted feeling. My doc says that this can be caused by reduced blood flow - but that they recently found that the arteries in the brain are constricting - like the body is trying to reduce blood flow to the brain for some reason. Im so over POTS...

thats interesting - i guess now that they consider CFS as primarily an autonomic nervous system problem as well then this could be great news. My doctor was telling me about a study that was actually thinking that there was possibily a chemical that was interferring with our autonomic nervous system that might be the cause - in particular the noradrenalin uptaker thingie

yeah i get those looks from my family sometimes as well. For me its got to be something environmental that is atleast causing a relapse of my POTS. Myabe its a cat or the heavy chlorinated water in Melbourne - I cant seem to fiund the exact trigger but last year wehen i got a shower filter i improved quite a lot.

I get this sort of inability to focus - weird depth perception

according to my doctor people with POTS suffer a particular type of migraine activity that actually constricts the arteries in the brain causing symtpoms similar to those experienced during the onest of a normal migraine without the headache.

Thats me to a tea when im bad - betablockers can be a god send when your like that but can make the spaced out dizziness worse

wow I am in this boat right now. I went overseas last year and felt 100% better after a day. I had to work overseas for two months this year and I felt 100% better except for one day when i had a bad flu. I get home and its the same every time - within a couple of days im dizzy and groggy again and lose all my energy. Its quite frustrating. The noyl things i can think of that could be causing it are pollen in the air, the cat i live with or the water here in Melbourne. Its really weird. I might try some antihistamines and see if that makes me feel better?

oh yeah - that one can do it for me too - especially in the morning