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About radiohfan23

  • 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 really start to suffer. I would say that movement no matter how small helps. At least in terms of mitigating some suffering. I wanted to chime in because i am currently thinking there is some sort of neurotransmitter issues going on with me. Have you looked into dopamine/norepinphrine relationships at all? I am just getting into this more but symptoms wise an imbalance or synapse deficiency or problem may be at play with me. I never feel relaxed anymore despite being relatively happy and content. So, just wanted to chime in in case this helps and to let u know that i know what you are going thru as so many of us unfortunately do. Take care and i hope u find answers really soon! Joe
  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 everyone posted if anything changes.
  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 make sure I don't experience any side effects before ordering all 10. Here's a bit more about me, so that anyone considering this has a sense of my case to compare as to whether he/she may have a similar response to the EPO, I do not know the cause of my POTS - doctors believe it's autoimmune but no definitive tests to confirm (although, I am in the process of going through Mayo's autoimmune dysautonomia testing profile). I currently am taking only multivitamins and salt loading with the occasional xanax as needed at a low dosage. I've been through the run of all the standard medicines and haven't been able to tolerate them. In terms of severity I'm pretty much bed ridden as I'm constantly very ill and weak. I'll try to keep on top of posting as often as possible so that anyone considering this options can get make a knowledgeable decision given the expenses associated with this option. And feel free to PM me if you'd like, I'm happy to try and help if at all possible. Joe
  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. Thats interesting because yesterday and today I've been particularly ill.. Worst I've felt in a while actually. I was wondering whether the solar flares may have something to do with it, but hadn't thought about the full moon.
  10. Cant wait to hear it. I'm totally impressed and very grateful for you doing this. Take care and rest up, I'm sure you're exhausted after all of this.
  11. Glad this helped, I was pretty happy with it as well. I'll let you know when I get the orange tinted glasses and lighbulb. I'm so happy this has helped, please spread the work... there's a lot of exhausted potsies out there!
  12. My wife saw on Dr. Oz this week that using orange lights at night can help with falling asleep. Basically, as the sun rises it emits blue rays which stimulate you and keep you awake and alert. Computers, televisions, phones, lights, etc. produce a similar emission. Then, at sunset it emits orange rays which signal you to relax and wind down and get ready for sleep.The recommendation Dr. Oz made was to place an orange bulb in your room and turn it on about 2 hrs before you go to sleep and let it help wind you down. There is also a program you can install on your computer called f. lux (http://stereopsis.com/flux/) which dims your computer to produce orange light in accordance with the sun's schedule. I need to watch something nightly in order to help relax/distract me from feeling like crap, but it hurts when i'm trying to wind down and sleep at night. I downloaded the f. lux program (totally free) and saw a nice difference at night. I could view my computer screen without feeling so over stimulated and i've noticed a reduction in headaches at night. I have also ordered a standard orange tinted light bulb an a pair of orange tinted glasses which make a big difference. I'd highly recommend looking into this for anyone who has similar issues. There is no downside and I've had some positive results. I'm new to discovering this so if anyone else is more of an expert please chime in!
  13. Lieze, i think you make a great point. It's easy to feel guilt over relationship troubles, but unfortunately the reality is that there is a limit on what we can manage to deal with and it's important to realize that what is important is to focus on managing and trying to overcome your symptoms versus trying to fix something that is not your fault. Hope that makes sense.
  14. Hi Michelle, Thanks for sharing this and I'm so sorry for what's happening. Unfortunately, (as I'm sure you're well aware) I think a lot of us can relate, myself included. My wife and I have been married for nearly 2 years and together for 6. I'm very lucky for what she has done for me and for how caring she has been but I fear the end is coming soon. I'm living with my parents about 5 hrs away because I'm unable to care for myself like I would need to do if I were with her. I've come to terms with the fact that I'm ill and that those close they are to us, will never realize just how horrible and serious this truly is. Sometimes I get so angry that nobody understands how I feel and they seem way too tough on me. But what i have to tell myself is that when I was healthy before I realized this level of suffering I would never have understood it either. I can only hope that I would have been as wonderful as my wife has been. I try to stay as positive as I can for her sake because to spend excessive time talking about just how horrible I feel all the time takes away from what hope she has left. But sometimes it seems like i'm just lying when i speak positively about a horrible situation. So, what I have learned from all of this is that I may not be able to control the fact that I am suffering and likely will suffer for the foreseeable future, but I can try and make her as happy as possible and that makes me happy. In terms of a normal relationship I have found that leaving notes, writing emails/letters, etc. have helped me stay close with her. In the past before I got ill I took a lot for granted and now that I see that, I've used it to try and grow stronger with her. But, unfortunately I feel like the reality is that as I grow more and more bed bound it is more and more likely that she will have to move on. I wish I had better answers, I'm sure more people here do. I just wanted to share my experience and let you know that you're not alone despite how desperate and lonely this illness can make you feel. I wish you and your boyfriend the best and will be thinking of you both! Joe
  15. I am going to see a new doctor as I suspect Lyme disease could have caused my POTS outbreak. One thing in prep he's had me do is take periodic temperature readings. I'm consistently low ranging from 96-97.5 degrees. From what I've researched it is consistent with Lyme disease to have this. I also have a low WBC which is also consistent with Lyme. Does anyone else have low or abnormal body temperatures? thanks, Joe
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