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About diamondcut

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  • Birthday 09/10/1983

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  1. I totally agree in that POTs itself was not her cause of death, if her immune system was not in great shape it left her wide open to a lot of nasty things. What i find sad is that there is not really a "celebrity" spokesperson who could draw attention to dysautonomia. You have Lady GaGa who has educated people on Lupus which is fantastic, i wonder who in the future will help us?
  2. I just happened to find this picture the other day, and if you look at the colour of her hands compared to the rest of her body, they practically look blue, true she could just be cold but it has that purlple blue tinge thats something many of us are familiar with. More proof that she most definately had something like POTs? http://www.designhairstyles.net/hairstyle/tousled-hairstyles/
  3. Rissy How have they tested you to find out what hormone is doing what can i ask? I want to try progesterone cream for migraines but i am unsure if it will help or hinder me.
  4. Thanks Jangle, Im going to see a new Immunologost this friday, do you think if i take some of this information along to her it may help translate to her what i am trying to get at with the POTs/Immune links. This Dr has no background of POTs so its going to be a real interesting consultation. Im going to ask about the AChR and other autoimmunity pannels, then really watch her face wince if i show her this!!!!!
  5. i get extremely dizzy on standing when i take Aspirin, i literally stumble, so for me i know it effects blood pooling and blood thickness in me.
  6. Has anybody had the exprience of having nerve block injections, that work for the pain, but then bring the nausea and vertigo to the forefront? This happened to me and i couldnt believe it. One thing taken away, another multiplied by a thousand! Can anyone give me any advice on this, because the occipital nerve block injection took away the pain, but made other symptoms worse, if i had an abliteration or have my "frozen nerves" could exactly the same thing happen with surgery as the injection. My problem is i am terrible with drugs and they do more harm then good, so although surgery is more
  7. 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.
  8. I have mine lifted and i would say it does benefit me, not much, but the smallest amount of improvement i welcome!
  9. My God how i wish there was! I am so with you on that score on diagnostic rationale for migraine, sadly i think its more a pin in a book and thats your drug to take home and try, never mind if its dangerous for you and ends up making migraines worse!!!
  10. I must say i did ok on it. I was lucky that laying down didnt cause me any high BP's compared to standing. I think its one of those drugs you have to try and just monitor yourself. Good luck
  11. Can I ask others if they have experience with testing for Hypolomia. My Prof has said it can be hard to test for and the best way is via bloods. My Renin and Aldosterone bloods have come back as normal, we are looking for evidence of low blood volume. Is it worth having a 24 urine to look at the levels that will be in this? Also apart from catecholamines levels in a 24 urine, can anyone give me any more idea that maybe worth measuring for POTSs, seeing as though i will be going to the effort to do this? Thanks......
  12. Its seems to happen to us all at some point, we may feel the beginings of feeling that little bit better we feel ready to take on the world, then the next day you can feel awful before you even get out of bed, and know its going to be yet another bad day.But i am sure you will figure out a way around getting through office days like that!
  13. Thank you everyone for your help. First of all, i didnt do well on a trial of Lyrica and really dont do too well on a lot of drugs, so the more sure i can be that i am on a drug or trialing a drug for the right reasons it will make my life easier, the reactions last for weeks when they are bad you see. I have been type one Diabetic since i was 11, i have been told from the tests i have had that its unlikely to be autonomic nueropathy from the Diabetes and more the EDS causing my problems. My POT's Dr came to this conclusion by having the autonomic testing of placing your hands in ice and they
  14. Can anyone offer any advice please. I have had exstensive autonomic testing and GI testing over the last few years but i feel the more information you can gather on your body, the more chance you have of fixing yourself. I would like some help by anyone in how i can word this to my POTs specialist and request a SFN test? I believe i have small fiber nueropthy or a very high chance of this. I have type diabetes and suffer with Vulvadynia which is a nueropathic pain issue in itself. I feel that my migrianes and constant nausea and discomfort if to do with SFN as i have had every possible stomach
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