ramakentesh

oops double post

this might answer my previous post - sorry

I was wondering if anyone else worked all day on computers and whether the neon lights of the office and the computer screen made u get dizzy or a headache??? My boss gave me this link for a thing called Irlen syndrome but its only happened since POTS came around - since then i cant handle neon lights, computer screens and things like that very well - hard ro focus and makes me dizzier than i already am... anyone else relate?

That is a pretty common problem - worse under neon lights

Hi Michelle - as long as you have reviewed and are aware of the study I am happy. Fell free to comment if it gets published (remembering that the study by two doctors that proved that stomach ulcers were caused by a bacteria in the stomach lining were refused publishing twice before eventually being proved right)

When i first got POTS my doctor thought I had Graves because i was trembling and losing so much weight and had heart palpitations,. My thyroid received the most thorough examination imaginable and it was always found to be normal so for me I know it wasnt the cause of my symptoms. Thyroid disease and autoimmune diseases do run in my family to some extent, but POTS is it for me so far god willing.

I get light-headedness, disequilibrium, vertigo in the room spinning sense and the whole shebang - As there are all symptoms of pre-synacope they are most certainly caused by POTS

ive had problems with my lower back and sciatic nerve since i got pots but never connected the two

I have bad back pain but that isnt a symptom that I would have associated with POTS - normally the dizziness, palpitations and overactive sympathetic nervous system are the symptoms that people would notive with pots.

Doctors who really know POTS tend to tell you that it 'can' get better after a period of around 4 years - and that spontantious remission is possible - but that usually people dont progress and that you learn to live with POTS. Ive never met anyone who has completely recovered permanently from pots - most improve enough to live their lives but its always in the background. Im not saying this will be your case, but there is no studies or research that suggest 80-90% of people fully recover.

'Im assuming the "special transporter protein" which effects the reuptake is what we are discussing?? The methylation of the gene would then stop protein production, right? well, then again Im assuming here but if I or anyone with a lack of transporter OR a total/near total shut down of the gene ( deletion etc) then we would have to have abnormally high levels of norepinephrine??? and a mostly steady state of "sympathetic upregulation"?' Actually no - all POTS patients that the guys at the institute were testing reported similar symptoms to some degree (presyncope, tachycardia, orthostatic intolerance) as well as our own unique symptoms - but all also waxed and waned in symptoms. This theory certainly doesnt explain why this is the case. It might even suggest an autoimmune issue - perhaps an antibody hampering the regulation of an enzyme that results in over-methylating the promoter? Im not sure. Ive been emailing the Professor to discuss these possibilities but he is away on xmas leave. Im looking forward to Linda's feedback.

The only thing that works for me on THOSE nights is a swig of alcohol, some valarian or just staying awake so that Ill be tired enough the next night to sleep

Mestonin is a treatment used for M.Gravis and I dont think it has any effect on blood volume as such.

I feel like ive had a migraine often after a surge - under par for a few days and cant think straight

I get this from POTS in general and I dont get variations in my blood pressure that would explain it. By the time i feel this way im usually trembling from excessive adrenalin/noradrenalin so i assume that was the connection.

Interesting comment about MS Morgan. My great great Uncle had Diabetes and actually died young from complications from it. At the time they had no Idea what part of a person's diet was causing it and their only suggested treatment was lying around and not exercising. I bet one day if a pharm-company came up with a medicine that treated POTS effectively all of a sudden every GP under the sun would know all about it... All those pharm-company training sessions can be very informative for GPs.

For me sometimes Im glad I went - but if Im having a bad day I find that a large crowded table makes me feel worse as I struggle to keep up with the conversation and all that activity under neon lights leaves me spaced out and very dizzy. Lately Ive been feeling ordinary but I didnt want to miss out on some recent social functions. I went to the first through and felt miserable afterwards - but the last two Ive been to Ive just said 'stuff it!' and ordered a beer to pretend to myself I was well just for a little while. To my shock I actually felt btter and clearer headed after a few small beers. I didnt push it beyond that but it actually seemed to help.

For me its usually the neon lights in places like supermarkets, shopping centres, restuarants or places like that - I feel spaced out and dizzy almost straight away when im really bad - good days I can last out longer. When I go to dinner and im feeling POTSie I ofetn find that I cant quite keep up with the conversation - all that looking around at different people - im not sure whether its the light or what it is, but I feel dizzy and spaced out often. Thankfulyl I can tolerate the odd drop of alcohol and this seems to help me think clearler at dinners and such - but it is a real pain. When I go to BBQs and its outside in normal sunlight I never have as big an issue. My father had heart failure from a heart problem that he suffered before he passed away and he used to have poor blood flow to his brain and hypotension - he had the same problem with neon lights and busy areas. Maybe its just something that happens to people with blood flow problems to the brain?? I dunno - its weird.

nj

Ok - i should clarify - gene promoter hyper-methylation is different from regular gene mutations. This study is the first study ever to look at the gene promoter for methylation which is very different from the previous other studies - including those conducted by Vanderbilt - which only looked for mutations in the actual gene and not the promoter. The gene itself regulates its activity where-as the promoter regulates how the gene operates and how often. Hypermethylation of any gene promoter effectively turns the gene off. This is documented fact from a wealth of recent cancer study. Therefore, the study from Vanderbily didnt find methylation in any genes - they werent looking for it - they were looking for mutations. Of 90 people studied they only found 2 kindred with a mutation of the NET gene. What this study is proposing is quite different. In this study 14 patients were examined and their mean of NET gene promoter methylation was considerably higher than in normal patients - infact 8 of the 14 patients had 100% methylation - wereas in normal patients the rates were much lower (with one high normal patient detected as you have pointed out). It is not the mean average that I was suggesting to be indicative here - i was suggesting that as 8 of the 14 POTS patients had 100% methylation and none of the normal patients had 100% methylation - this was the important point. If i stated that this report suggests this is the only cause I was mistaken - but I think that the study does suggest a significant causal factor in POTS in general - if not just the patients tested. I should have probably clarified these issues before this time I guess.

As others have said here - Id be careful - a friend of mine gave me some weed to see if it would make me feel better as he had read that it helped somewhere. All it did was exaserbate all of my symptoms and gave me adrenaline surges like you wouldnt believe.

Assuming that studies at the Baker Institite are correct and that POTS is caused by hypermethylation of the NET gene promoter, they have found that certain drugs can hypermethylate genes - such as roaccutane - and they think that viruses will do it as well - Mono being the biggest culprit. As for CFS, they recently found that a gene that regulates a certain type of white cell as being altered in CFS patients. Its all very interesting - medicine is finding answers.

WHen i first got pots i used to have these random periods of intense fear and i would tremble all over - they were like panic attacks yet without a source. Apparently this symptom is a normal part of POTS - great isnt it - its often hard to work out which symptom i hate the most.

nj.

From the time POTS set in ive had constant floaters - they were so bad when i first got POTS that I could barely see through them. My vision is always weird when i standing and they did notice an increase in eye pressure as well with the onset of POTS