ramakentesh

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Makes you wonder. Im worried though as I dont see the connection between dysautonomia and digestive enzymes

raynauds is a common symptom of POTS. I dont know if you have POTS but if you did that would explain it

i can so relate to this thread. After my Florinef experience (going to work and feeling so freaked out and weird that I didnt move from my desk for 11 hours) I wasnt game to start my next medication for a while - infact it took me months to do so. I was feeling ok before hand and I didnt want to try the medication in case it made me feel worse as I was pretty busy at that time. Then i had a bad period I gave it a go and it was much better - but if youve got things on at the time sometimes it pays to wait - if id had my florinef experience during a holiday or something it would have been a real downer.

For me if its really bad i try some caffiene - its a 20 minute fix tops and makes me feel worse afterwards and always more dizzy. But i like licorice because it seems to give you a boost in a way that counteracts the type of fatigue you get with POTS - gets rid of my dizziness for a while with energy, whereas some of the meds address the dizziness but not that fatigue. For me only a very small amount is necessary - too much and ill get a migraine

Professor Esler explained that the study was under 'review - New England Journal of Medicine' and that the study is published once it has been reviewed and discussed by other medical researchers in the field. I dont actually know if this means that its been printed there for review or how it works. I cant really debate the content of the study too much because it goes into detail that was beyond even a friend of mine doing genetic biology at University. What was apparent was that although the POTS patients involved only number 14, these were the only POTS patients available in Australia - and hypermethylation of the NET gene promoter was found in all 14 while denervation of the legs was not readily found in any. That doesnt automatically mean that every POTS patients will have a similar finding - but the law of averages would suggest that it may apply for a fair number unless people in Australia develop a different kind of POTS to elsewhere. If it were a majority maybe it could be variable, but for all 14 to be in this basic looks pretty positive. Time will tell. Perhaps if Michelle reviewed the study she might have more experience on how to interpret these developments. As for medicines aimed at fixing the problem if it is found that this applies to the majority of POTS patients no time frame was given and in the study it says that 'no tests are imminent' but I was told that they were already aware of some medications that could resolve hypermethylation but that these were quite toxic. He was very positive about finding other chemicals that were less harmful in the future. It could be ten years or more - or in a much quicker timeframe I guess, but atleast they know what they are looking for.

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my tips would be licorice - it works for me unless im having a real bad one

The study is currently printed in the New England Journal of Medicine. The initially focused on denervation in the legs and kidneys of POTS patients and found no evidence of either in any of the POTS patients tested. Therefore that would suggest that there is really only one type of POTS - that which in the past has been labelled Hyperadrenagenic or beta adrenagenic - caused by impaired uptake of noradrenalin. The second variety of denervation suggest in studies by Streeton hasnt really been confirmed. They secondly discuss the fact that a mutation of the NET gene was suggested but in many studies by the Vanderbilt Institute only two people were found to have this. Im not sure how this impacts on people with POTS because of EDS but in my discussion I think I got the feeling that he thought that most or the majority of patients would be in the boat discussed in the study. The basic contention is that hyper-methylation of the NET gene promoter is a major cause of POTS. The study examined 14 POTS patients and 14 normal individuals and found firstly that the promoter in all POTS patients and none of the normal patients were hypermethylated. Hypermethylation of the promoter has the basic effect of silencing the gene - or its transcription. Ive done some research and apparently methylation is quite common in genes as CH is a weaker bond than CH3 - but in this case the methylation is unusual. To check their results they tested the methyl gene transciptor MeCP2 and found that it did not bind at all NET gene DNA in normal patients and bound highly to NET gene DNA in POTS patients - demonstrating their contention. Now they are looking for the cause of this hypermethylation. Prof.Esler is based in Melbourne, Australia and I must say that there are a number of other doctors and professors involved in this study. Professor Esler is by far one of the best doctors/medical professionals I have ever had the pleasure of meeting. His open to new ideas, treats you like a human and you can tell he cares. I consider myself very lucky that he is based in Melbourne considering his expertise and his wealth of knowledge. Apparently they can test for agents that hypermethylise in the lab and hopefully test for anti-methylising agents there as well - fingers crossed!

I have just been notified by my doctor that they have made some dramatic discoveries regarding the mechanisms that cause POTS in the majority of patients and with this discovery, the possibility of a potential cure to the disorder. The study and its discoveries are currently open for debate in a medical journal and are yet to be published - therefore has informed me that it would be inappropriate to comment on them - but that It was OK for me to give a layman's rundown of what they have discovered. Basically much of the study of POTS in patients other than those with connective tissue disorders and other primary causes has focused on the NET or Noradrenaline transporter. Basically it appeared that this transporter was not working properly in the majority of POTS patients and noradrenaline was not clearing effectively, causing excessive autonomic overactivity and the dilation of arteries throughout the body. Professor Esler and his team at the Baker Institute apparently found that in POTS patients there could be a reduction in blood flow to the brain of up to 40% - and as a response to excessive sympathetic overactivity, a narrowing of the carotid arteries which compounded the problem. Most study around the world had aimed to try and find out what was wrong with NET in POTS patients. They examined the gene that is responsible for NET and the amounts in the body and expected to find a mutation of some sort. Despite lengthy studies, no mutation was found. The team at the Baker Institute decided that rather than looking for a mutation in the gene itself, they should look at the gene promoter - the part of the gene that activates the gene or deactivates it so to speak. What they found was that in POTS patients this area of the gene was covered in some kind of particle attachments (excuse my wording here - Im no genetic bioliogist) The attachment is called metho-something with the chemical name CH3. They found that in normal people the gene promoter lacked these CH3s whereas in the POTS patients studied (including me apparently ) the promoter was covered with these attachments to a degree that turned the gene 'off' 100%. So the gene that regulates the NET in POTS patients is effectively completely off. To confirm this finding they examined the levels of the chemical transcription factor of this attachment in the blood of normal and POTS patients and found that in normal people it was almost absent, whereas in POTS patients it was extraordinairely high. This firstly means that in the future their may be a type of gene test that could easily diagnose POTS without a lengthy tilt table test. But the bigger news is that medical journals have already demonstrated that some chemicals - when introduced to the human body - can cause these CH3s to attach to gene promoters. And that some medicines can actually detach these particles from the cell promoter. Currently they are only aware of hazardess drugs that do this - but there is the possibility that they may find a medicine that can do this - effectively turning the gene back 'on' and curing POTS in patients.

Ive just started a course of an alpha agonist and vasoconstrictor DHE or Dihydroergotamine. so far this treatment has been working quite well.

im particularly bad in the cold - get raynauds and my dizziness in generally worse - i thrive in hot weather and my symptoms always improve - most are the opposite - i do get dizzy sometimes after a hot bath, but when its cold i need them to get rid of the cold hands and feet

I found this article that people might find interesting. Its a bit wordie but quite interesting. http://www.ncbi.nlm.nih.gov/entrez/dispomim.cgi?id=163970

For me the thing that kept me going for a long time was trying to find an answer to why I was sick - i became ill in October 2003 and didnt get officially diagnosed until late 2004. But during that time there were definately periods where i just didnt feel like getting out of bed - i knew that i would feel like crap within half an hour. I had to go to work and that was really hard at times when you feel disassociated from yourself and out of it and dizzy all the time. Thankfully for me it ebbs and flows - i have bad periods but I also have good periods - ive felt pretty good for most of 2005 - until recently any way. My best advice is to try and distract yourself - get into your hobbies for a while or start reading some books or buying new CDs. Before you know it you'll be feeling better and the bad periods will pass - they always do. I hate the brain foggy feeling and the dizziness the most. Have you tried licorice or licorice tea? For me I am a young person (like most potsies ive been told - in the mid to late 20s when the onset occurs) and i refused to give up my life - i just had to lesson my involvement in what i used to do and conserve my energy - and some times I just had to try and do things or have fun even when i felt terrible and dizzy and spaced out - I knew i wasnt going to do from this - and I wasnt going to let this crap limit me. I just started to grow in other avenues of life.

definately worse for me as well - always the dizziest in the morning with gradual improvement - although some days i go back down hill towards the end of the day - or now when i just stay dizzy all day long

heavy fitness training shortly after a cold/flu brought mine on - I had slight symptoms maybe before, but one dayi was running and felt dizzy, came home and nearly fainted - etc etc...

thanks for the feedback - im feeling better now after taking a vasoconstrictor similar to midodrine. Yeah ive spent too much time thinking about this. Both those posts were very informative and all good points and I agree with them. For me my POTS can dissappear when im outside melbourne, but here i always get it back within a few days of returning - whether im living my old house, my new place i just moved into or my sister's house. It went away when i had a shower filter so i guess i can try that again. Overseas or when Im sent away for work i always get better. Its quite strange. Its not so much that i havent learnt to deal and live with POTS, its just that I find in annoying that the one city where my life, work, friends and life are located seems to be the one place where i get POTS. If i could work out why i got it here and perhaps fix the cause it would be nice. Otherwise i wouldnt bother trying to work out the triggers - for me ive never been able to any way - foods that i can handle one week, may set me off the next. If i got POTS everywhere then i wouldnt have to bother trying to work it out and there us always the possibility of coincidents - that i just happen to get POTS when im here by shear luck.

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)