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Everything posted by we_don't_look_sick

  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.
  15. CC something may help with fatigue, keep looking. Stimulants, for me, are super temporary but the crash afterwards is days! DAYS of feeling worse because I try something for quick energy. Something that works without crashing; NADH and Ribose. Each cell in our bodies need energy, NADH & Ribose feeds our need for energy at the very basic or beginning step of energy. I had a power point presentation I had made to map the cell energy procurement and use. I lost it on a crash and haven't reworked it. I HIGHLY recommend these two items.
  16. It is difficult to get an iv. IV's work well for me, maybe I think of this too simplistic: IV builds blood volume fast and efficient vs digestions slower and less efficient manner. How could it not be that simple? Nothing else is simple with us, but an iv being a major help for some of us seems very simple. But I haven't had an iv in a while and I don't get much blood to my brain...
  17. CC I too wake fatigued and stay fatigued. I try to keep a positive outlook but it gets difficult. I take Nadolol beta blocker now, I tried propranolol and the doseage went very high, I changed it thinking it was causing the fatigue. My hr would get super high if I stood to walk. I have found getting my vitamin d levels from a 6 to closer to 30 has helped my hr be more normal. I hope you feel better soon
  18. Your comment "I guess I kind of expected that I wasn't going to have to do this forever-- because it isn't sustainable. I thought I'd have some help and understanding (from family, friends) or treatment that would allow me to recover some of my life." sums up what I was feeling! I thought something would change, my life would improve. Your experiences shopping & cleaning are mirror images of my life. I work, but the job is in danger. When I come home from work, most of the time I am too exhausted to eat anything, much less cook anything. Jangle, you are correct; we are alone in this and must research this ourselves. I have considered posting an ad looking for a Dr. who has dysautonomia himself/herself to have a Dr with understanding of the simple things day to day that profoundly affect our excistence. Ramakentesh I can see the Dr. saying that. I bet He brought his hands down, turned away and began writing in your chart, said 'excercise more' without looking back up. Our only hope in a Dr is finding Dr who suffer from dysautonomia. Suffer from it enough to nessisitate dropping thier hours to deal with their illness. I have tried NADH and Ribose (stuff each cell uses to make energy). I will try another round of this and report how it works for me.
  19. lol I like salt straight! And make salt shots (small amount of water and lots of salt). Many of us with dysautonomia grew up in households with parents that had high blood pressure and who limited salt intake. I grew up thinking salt was 'bad' for you and avoided it as well. I still don't like to salt my food, but I like foods that are salty or taking drinking salt and water. I don't think you are weird at all, roflol BUT I have been caught drinking salt water during a long meeting and they thought I was a freak. I can live with that
  20. I caution my daughters about over achieving. I used to work a full time job (40 hrs) and part time job that was 5 hrs a day 5 days a week. I believe we do burn ourselves out and set the stage for this illness hitting us hard
  21. "push to Pretend to be Normal and everything will be fine" Pushing myself becuase I didn't know better has taught me many things; most of which involve things like: fainting and sliding down a sheetrock wall will give you a painful wall burn; fainting in the bathroom causes bruises in places on all sides of your body and hurt for a long time; fainting and hitting wood for the wood stove hurts very bad and causes cuts and bruises RUNNING behind other kids on a sidewalk & pretending to be normal will result in huge concrete burn/scrape and you feel anything but normal when you come to I have been told to pretend I don't have a pacemaker and move on with my life! Seriously?? How about the $22,000 back from the surgery and you forget about the bill? I would like to learn the Vulcan pinch Spoc uses to show people how it is impossible to feel normal when you wake up on the floor - Move on with the Dr search, this one is definetly a loser.
  22. PLEASE Print out our responses and paste them on a website or Rate this Doctor site! lol I love that you told the Dr. the sleep apnea was bogus as well. WOW a Dr who picks and chooses health issues as real or not! I can't believe they still make it thru medical school! 43 years ago, my mom was told she was having 'empty nest syndrome' and saying I was sick because I was her baby. Mom had 7 children, by the time I was 5 she was babysitting/raising grandchildren. Her nest was never empty!! She told the idiot who said it was empty nest syndrome; it is NOT my imagination when I pick her up from the floor in a dead faint on put her on the bed or couch. The response was "well...okay..." It took 40 years for me to get a diagnosis. And I am in the captiol city of Arkansas and do not have a Dr who specializes in dysautonomia. Write to the Dr's your son has seen and they diagnosed him. Maybe they will mail prescriptions? Finishing medical school does not eliminate sheer stupidity. If you have a medical board or the clinic where that Dr works is under a medical board, I hope they are reported. Send a 'imaginary' payment for the visit.
  23. Volume of food makes me very symptomatic. I have explained to co-workers that I can't eat 'meals' like they do and graze all day. Also, I didn't realize another reason for grazing, it seems to reduce nausea. I didn't realize nausea was a symptom until I was reading posts on this forum! I have had this since I was 5 and have many 'habits' that were dealing with symptoms. I will watch this post with great interest! I too have days when I don't want to smell food or even look at it becuase I know it will make me ill.
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