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radiohfan23

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About radiohfan23

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  • Birthday 06/10/1981

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    Philadelphia, PA

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  1. I have got to say that this sounds an awful lot like me. Totally bed ridden, weak, dizzy, etc etc. I was exercising when pots struck and have tried to keep at it but my body just cant take it anymore and i totally understand what you mean by deconditioning not being the cause. I recently got in touch with a home medical doctor who is wonderful because i can no longer get to the office without lying down the whole way. Things have just deteriorated despite my efforts to exercise. I have a physical therapist come to my house twice a week but i always try too hard and about an hour later i reall
  2. Thanks everyone for the info. I just started taking this last night. 1.5mg at bedtime. I slept quite deeply and an hour longer than usual, other than that nothing else thus far in the way of side effects/benefits. I am staying at this dose so I'll check in periodically with my progress.
  3. So I had my second injection and was having some of the same side effects. High BP, headache, more dizziness, etc.expect this time it failed to dissipate and the hang over type feeling continued for a few extra days. The doctor recommended I take two weeks off and restart next week. I may lower the dose but he said that the good thing is that it will sill remain effective for quite some time so I am not really restarting the therapy. WIll keep anyone interested in following in the loop when I can moving forward. Take Care.
  4. Had my first injection today. No allergic reaction or initial side effects. I just sort of feel groggy and weak with a bit of a 'sick' feeling but not serious enough for me to assume it's related to the injection versus just being a lousy day. The only noticeable side effect is high blood pressure. I noticed some chest tightness (nothing alarming) and my bp is up in the 150s over 90s. I do have pretty normal bp most of the time unless I'm standing up when it is a bit low. So I'm gonna take a baby aspirin if it continues to stay so high. So far nothing big to report but will keep everyon
  5. Just got approved on my first try also... wasn't expecting it but am thrilled.
  6. FYI, I'm about to start taking Erythropoietin this thursday. I just had some basic blood work done (CBC, hematocrit, etc.) to get a baseline of my current levels and will be tested monthly as I go through the treatment. I'll check in to update how it goes. Basically we're just following the protocol with which Dr. Grubb has had success. I can say that it was quite difficult trying to get the medication as most pharmacys don't carry it and insurance will not cover it. It costs about $180 per injection for the generic type i'll be taking, so it isn't cheap. We ordered just the first dose to
  7. I should say though that he will do a TTT if necessary but it isn't going to b a full lab work up like at mayo or Cleveland. But he is very knowledgeable and will try different medications appropriate to ur situation.
  8. If u can travel I see a cardiologist in new jersey who is good. Dr Tullo. Go to njfaint.com. Wait shouldnt be terribly long.
  9. Thanks, and i find having a drink to be beneficial also. It's calming enough - so long as I don't get dehydrated. I'm not sure I agree with a high dopamine level being related to POTS. In fact Vanderbilt is enlisting for a study now to administer carbidopa which is a Parkinson's drug used to increase plasma dopamine levels. The reason there is no evidence of a correlation is because it hasn't been measured properly. Urine tests are not accurate. In fact many parkinson's patients aren't measured because it requires a spinal tap. Dopamine is very difficult to measure. I know norepinephrine
  10. I'm so glad you brought up this topic because I think like a lot of others here the ability to handle stress and subsequent social anxiety is an issue for me. I often avoid social environments whereas before becoming sick I used to do fine. I wasn't the life of the party or anything but was always able to enjoy myself in crowds. I've been doing a lot of research with regards to neurotransmitter irregularities and I've become quite interested in dopamine deficiencies. From the research I've done I've learned that social anxiety disorder usually presents with low dopamine levels. It's also c
  11. Happy Birthday and well wishes!!!

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