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I second that, i have just posted about how i grate pure ginger root and add so boiling water, it helps with the awful nausea i have suffered with for years. Simple but more efffective then any antiemetic drug i have ever taken.

I am grating pure ginger root and drinking it as a tea, could you just add a spoonful of turmerric to that, as lovely as that would taste. Be great if it helped migraines too, ginger most certainly helps my nausea. More than ANY antiemetic drug i have ever tried, and i have tried a lot!!!

This is true, it is documented and i have just been to see a geneticist today and at least when you can hold in your hand written down proof as to whats going "wrong" with us we habe to be taken seriously, i wanted to see the page where they have come up with new treatments and non side effects drugs for us though, they must have missed that page out by mistake!

i can not stand the cold, even though it makes you vasoconstrict!!! I just cant function when its cold, also damp wet weather makes my breathing and migraines worse. I clear day with a nice temperature is whats best for me.

Im another one, my heart rate when i had my autonomic tilt table testing was almost as much under stress by raising my arms as standing!!!

Prof Aziz is a gastro nuero and he actually dx me with pots, he works with Mathias closely and prof Aziz deals with a lot of patients with GI problems as a result of EDS and POTS.

Sorry something strange happened to my post then hippychic, my reply is tagged on to yours above!

I to have such delayed reactions to exercise also, before I had this flare I would exercise in the morning and be fine until late afternoon or evening then I would be so sick, I tried to explain this to several doctors and they said there was noway that was possible and it couldn't be from the exercising. It didn't happen when I didn't exercise and I knew it was form that. Any ideas what causes that??t[/quoteI do not understand why the Drs wouldnt believe this, i have immediate problems when i lift my arms for too long as far as physical activity goes on a daily basis, thats far worse than standing for me, but i can very often push myself through the day becuase i want to go somewhere and do something! I of course pay for doing that with a serious migraine as well as terrible Tachy. Someone else said on here that it could be to do wit the body re-building the muscle that was used earlier. Like your body still thinks and acts like it is in exercise mode even though it is not. Confusd signals again.

I can hear the Dr's already "but if the symptoms are improved, whats the need to test?!" I think someone like Driscoll or Grubb would prob be your best bet.

Have they recommened any treatment for you sister yet? Jangle, what your idea be to try and decrease these cytokines? Or is it an unpredictable pattern that taking a drug to decrease constantly would make you feel worse? Did you have any more luck looking for a Nuero, i read a post earlier where you mentioned you found one that claimed to deal with POTs everyday, which made you frown a bit. How did it go?

Thanks for answering both my questions Zap and Issie Issie, yes thank you for the NE analogy and thank your husband too lol, i do understand what you were putting over with the more you can lower the NE levels the less the transporter cells have to work and therefore the function is improved. If i remember rightly you have been tested for NE levels that are high in your blood? Could you maybe do these 2 things. - Could you try a low dose of Tramadol everyday and try not to take as many of the other supplements or meds you are on to see purely what the Tramdol does to you? - If indeed your NE were proven to be high, could you take tramadol and the have your catecholamine levels tested whilst the tramadol is in your system to see what the bloods would say. Have you looked into other drugs similar to Tramadol to see if there are others which may "tweak" you even better!! I know we both tried clonidine at the same time recently and for different reasons came off of it. I had no energy at all on it, would love to know why. Zap Again that is so strange with the Tricyclic, they are renowned to lower your BP yet it did the opposite for you!! If you are going to try the SAM-e again please let me know how it goes again. Did it make your migraines worse at the time can i ask?

Thank you for telling your story. Im very happy for you, the relief must be imense and i am sure you have very mixed emotions when you think back to the dr's you have seen. Two questions you maybe able to help with, if people on here (like me who is due to see an immunologist) Would they be able to run this blood pannel? I also am talking to my Nuero at the end of the month about a SFN biopsy. Why do you think your biopsy came back negative and the sweat test positive? Is there a better one to have for SFN?

How many people on here would put hair loss down to the amount of drugs they have tried over the years, and what it has done to the body inside that we can not see. I wonder if its the drugs more than the pots in some cases.

Also Zap you say you are on Nortriptyline, i am on something very similiar but i can garentee if i go abouve 50mg it makes my BP drop and tachy even worse, its dreadful but at a 10mg dose it does help. Also while we were talking about NET and pathways and compensating etc, i wonder if that would explain why so many Dr 's i know always think for hyper POTs Clonidine is the cure! Then they look so surprised when you tell them in actual fact i was more fatigued and dizzy on it than off it!! I suppose its lowering the NE levels which isnt really the problem if the idea of the transporter cells for NE are whats lacking . would this be correct? or am i way off.

There were a lot of "we dont knows" and "could possibly help in the future" but i do not see why a study like that couldnt be carried out on POTs patients. It seems like as you sai about science we are slowly narrowing down to the real exact issues to why we have the problems we have. I think as a whole that was a positive thing to read. Out of interest does anyone know the types of budget of a control study like that would cost to run?

You are a clever thing as i said to you in email. Well found, what would we do with out you on here! xxx

Forgot to mention, if its Nuerology specifically that you want the place is The National Nuerology Hospital, Queens Sqaure, London. Its a huge hospital dedicated to just Nuerology and really anyone who is a consultant there is pretty good.

Yes as far as being the only Prof who specialises in POTs Prof Mathias at The Nuero Vascular unit in St Mary's Hospital London. Thats where i had all my autonomic testing done. He does know his stuff and is very friendly, but the only down side is even privately he is very busy and sometimes you feel like he has so many patients and conferences around the world he cant manage the demand of his pots patients. Also because it is central London, the tests and consultations will be more, the hotels and general trip over will be more. I can recommend a very helpful Dr called Dr Arnold Deering who is a cardio who runs a Syncope clinic in Gloucester (he has a small team), he has a very nice manner and is really good at keeping in contact by email with after care, not a case of here are you tablets good luck if you know what i mean. If you want to PM me i can tell you more.

I forgot to mention, when i had my stress test months ago, i had to cycle for 10 minutes and they kept me there for an hour after and i was fine, 3 hours later it was like someone was sat on my chest and i couldnt breath, thats why i am so scared to to do any real exercise apart form fast walking. There has to be a reason for such a serious delayed reaction The study that MS patients recover better than CFS pateints is incredible! I cant understand how or why that would be, MS surely the signals from the brain, nerves and muscles would be more deteriorated or effected in a bad way than that of a CFS patient. Like you said CFS and POTs are so a like and no doubt many CFS people have undiagnosed POTs. There has to be a major floor that they are simply missing here. Zap, what briefly is COMT and what are you doing about it? Just to let you all know i am seeing a geneticist next month so if there are any question you would like me to get them to investigate please PM me.

Hi Thought i would say hello as i had a quite similar story, i had POTs from a teenager i believe and i was only officially dx over a year ago, i feel so bad for you that your own family had this attitude with you, i read your other post with "i told you so" on it and did chuckle to myself. Good luck with the awareness ideas, there are a few in the UK trying to do the same thing and its not easy getting Dr's to listen but i suppose we are the ones who can try and change that. Hope you find support on here as i have done.

I cant believe people think you would fake this? Why? Are you still friends with these people?????? I must admit there are so many times when you have to bite your tongue, especially when someone says "Im so tired i could drop after all that driving, i just cant do anything tonight" you feel like screaming at them that you wished you could drive miles, and if you could you would still have the energy to party through the evening because all it takes for others to recover from a heavy day is a good nights sleep and their bodies recover! How lucky they are.

Have you heard of a drug called Resolor. My NueroGastro gave it to me mainly for upper GI problems although it has fairly recently been here in the UK for more lower GI constipation problems. I dont know what its called in the US but i know a lot of people who it really helped. Its not a laxative either.

I would second that, if you have a Dr who is willing to listen and LEARN and you feel comfortable with them, stick with them. I hope you are put on a path with the right treatment so that one day soon you can get back to your job and previous pots life!

This is kind of off topic but there was a really interesting tv show on in the UK today where they conducted the first real indepth study of the effects of ecstasy or more specific MDMA. It has never been officially looked at, and the amount of positive things they could perhaps help people with with controlled substance of pure MDMA sounded promising, especially for things like depression and post traumatic stress disorder etc, it made me wonder if MDMA could help in some pots cases with the effects on seritonin etc. Not sure on the heart rate though!!!!

I have my ways, but it appears I was beaten to the most exciting POTS research to come out - which was the autoimmunity study just published this week. I should think you feel pretty pi**ed at the idea that your scientist of the year award has been snatched out of your hands!!!!! And your a willing guinea pig too!!!