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we_don't_look_sick's Achievements


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  1. Have your soul back Home with your child EVERY day after school (more time with your child will also give you your soul back; strengthens your soul; makes your heart sing and your child benefits) In your field You can financially afford this - in the worst economy since the Great Depression - you can afford this At an AWESOME place - where you WANT TO BE Have your soul back The size of the paycheck you have with a higher paying job pales in comparison to having your soul back and the benefit of that to you, your health and your family. Congrats on winning the lotto - lucky you!!
  2. I thought Dr's wanted us to fast before the TTT so we were less likely to throw up on them! I was told to make sure I took midodrine before the second test (to see if it helped prevent the faint). I think I had two TTT because the results of the first one were so severe, he was considering a pacemaker and a 2nd TTT was needed by insurance to confirm, but I am not sure.
  3. I have problems with lighting, noise and smells every day and worse of course with migraines. Mondays at work after my quiet weekend is sicking for me. Crowds, noise and too much talking causes my to have sensory overload. I start slowing on cognitve functions to the point that I have trouble leaving the area. This sensory overload is getting much worse. I avoid family gatherings if there will be more than 10 of us. And 10 of us in one location is a task for me. If you throw in one loud person, I am out. I won't even attempt to go to these functions now. I seriously see merit in living as a hermit in the middle of a quiet secluded area.
  4. I am thrilled to see so many treating low Vit D!! Mine has been at 5.5, 6, etc I took 50,000 IU prescription Vitamin d 2x a week. I seem to have a problem getting mine near the begining threshold (I think the begining threshold is 32). I figured out the OTC pill doesn't help me at all, but seem to get a little result with the gelcaps. Vit D is very interesting reading information! At higher levels (around 70-80 I believe) it seems to do amazing things for the body. there is a website exclusively about vit d and what it does in the body.
  5. Monstrosity; what are you symptoms? Did HR need a diagnosis from your Dr to say you are covered under Americans with Disabilities Act? I am wondering if my NCS; pacemaker and or injections in my spine for pain relief would make me covered. I think I am with NCS
  6. Is anyone more tired recently and/or having more pvc/s? To what do you attribute the increase in fatigue/pvc's?
  7. I haven't had mast tests of any kind; but it sounds like something I need to try. Have you had your hydroxy vit D tested? I am much worse when mine is low.
  8. My top 3 would be Fatigue, Brian fog, & pain. Fatigue and Brain fog (pain meds help with pain) I tie with those two. The fatigue is relentless and makes me feel hopeless. The brain fog is relentless and makes be feel hopeless. lol I want my brain scanned looking for gaping holes in brain matter or white spots that must be there to make my brain slow and 'out of it" erikainorlando You mentioned something I have felt and never seen anyone mention. That skin crawling after excercise; I was walking and felt that something very acutely. It seemed to be on the surface of my skin and all over my body. It was a pins and needles type feeling. I did feel faint and have lots of experience with fainting. I wondered at the time if it was my autonomic system trying to do something. Most people would sweat after walking, this pins and needles sensation was like extreme cold just on the surface of my skin. I stopped for a while because I was near rocks and thought the feeling may have been a pre-cursor to a faint. After resting, I had to return to my car, the feeling stayed with me even after I sat in my car a while. Do you have any idea what caused yours or how to stop the feeling.
  9. Can you buy it online? If I knew how to do the needle insertion, I would try it rather than an ER full of germs and noise.
  10. Since 2008: 5.5 13 6 6.5 21 30 Dec 2012 That has been with taking Rx 50,000 iu 1x a week and OTC 5,000 I.U. gelcaps (the pills did not help increase or maintain even at 2,000 i.u. a day) My goal is to get the hydroxy Vit D to 80 I will settle for 60 but at 80-100 is lotto win for me I also have read of low Vit D and autoimmune disorders; RA; bipolar; depression; schizophrenia etc and I have read at 80-100 fights (or stops or prevents) some cancers such as breast cancer and colon
  11. I think some of you are basing your information on old pacemakers. The Biotronik closed loop system can adjust for changes in heart rate. It makes adustments due to changes in autonomic nervous system. I got one. You need to check with an EP specialist who is familiar with the Biotronik. Not all EP's are familiar with it nor, if they are, are skillful at the adjustments necessary for the person with POTS. I am trying to read and find the answer but do you know if this Biotronik closed loop system is different from a Medtronic Adapta pacemaker? This pacemaker is 'rate responsive' which I think means it senses what I am doing, resting or excercising and adjusts for the activity. I got it in 2008, I wouldn't think that was old. But computers are old in 3 months...
  12. I think it is hard to have friends when even some members of our families don't understand this illness and they see us on good days and on days we can't get out of bed. As Ramakentesh posted, I have no energy after work to go out with anyone. Movie night at home is a great idea for some. I have made a super quiet and peaceful place at home; I like being alone; I love to read and noise and crowds are too much for me. I really like the idea of a movie night though. For me, that might happen once every few months! lol Because I always think I will feel okay, then cancel plans because I feel exhausted just breathing; I doubt that anyone would believe I would actually have a movie night. If I have pets; internet and books, I am content. I do realize now, that even though I was passing out at 5 yrs old; I have had illnesses that seemed to increase all the issues of dysautonomia. I see I retreated to my quiet living quarters and quarantined myself from noise and crowds. But this works for me as it seems to HilBiligirl.
  13. Very interesting posts!! I hated midorine. It was the generic, I was put on the medicine after a fail on TTT. I was rescheduled to take the TTT again in 2 wks and told to make sure I took the medicine the morning of the TTT. It is my understanding that; Failing the second test, even with this medication and the severity of my NCS was the reason I was given for needing a pacemaker asap. I was not told of any side effects this med could cause. I was so weak and so very sick; I was ready to die. I didn't want the pacemaker, I was ready to die but my daughters were so busy with college, I could not have a serious conversation with them about how I felt. I continued to feel that way after the pacemaker and was so miserable and regretted the surgery. I felt extreme stomach issues with midorine and hated the constant sick and uneasy feeling I had. I also, had extreme problems doing my job when I returned to work after the surgery. I didn't know about a possible weight gain with midorine until the second tilt test. I asked nurses if a weight gain was a side effect and they asked how much i gained; when I responded 10 lbs; they said lots of patients had said that. It may not be that everyone gains, but something made me gain weight. Reading your posts, maybe the midorine was affecting my mental process as well. When I pass out, my heart stops. The pacemaker is supposed to keep my heart beating. The feeling of 'coming back' after I faint is the sickest feeling I have ever had. I do not want to feel it again; but with the pacemaker I may feel it repeatedly. Interesting to think now that midorine could have been doing more than making me feel sick Thanks for posting this!!!
  14. Some people are really pleased with a pacemaker. Mine does nothing, NOTHING for symptoms. I was not given any false hope of it helping with symptoms; my pm will keep my heart beating on a faint. The pm has a high heart rate and a low heart rate, it will stop my heart rate from dropping below the low or above the high. That sounds like help for you. When my hydroxy Vit d was at 6 (min level is 32) I had wider swings in heart rate. Standing up to walk 2-3 feet would send my heart racing. Getting prescription Vit D and re-checking the levels brought my heart rate closer to normal. Low Vit D affects the muscles in your body; your heart is also a muscle. when the D gets low, it will start taking calcium from your bones. This caused me pain and lowered other levels in my body. Good luck & in my opinion no one should have surgery without making sure your hydroxy vit d levels are normal. I think you will have greater pain and more healing issues.
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