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Everything posted by forevertired

  1. There are motility tests (for example: manometry http://www.biomed.ca...f/51/51_541.pdf) which are used to test whether your bowels have motility issues. My POTS doctor says there are a number of gastrointestinal disorders that can be caused by autonomic nervous system problems. If you think your bowels work too slow or too fast, you can perhaps ask your doctor if he/she would schedule you to have bowel motility testing done. I have not had these as the gastroenterologist said I did not need them as it was obvious my bowels move way too slow. I would still like to have at least the small bowel
  2. Has anyone been diagnosed with this? Have you tried Mestinon for it? I was recently diagnosed with this and was prescribed Mestinon. I would like to hear how other people have dealt with this, what they have experienced, what treatments they have tried, and what helps with the pain.
  3. Your best bet is to be referred to a geneticist. The geneticist would test you for it. If you think you have type 3 some rheumatologists and pain doctors can do the testing for that type, but for the other types I believe the only people that can truly diagnose you with those forms are geneticists.
  4. Glad to hear she has been seen by neurologists. Sorry to hear she is going through so much. I also experience the shivering gone crazy, I find the best way to stop that is to get warmed up, such as being wrapped in many blankets. When I get just the slightest bit cold, even if I shouldn't be, my full body starts shaking like crazy (shivering), and my teeth chatter, and my breath is affected too. Its almost like I am hypothermic (i.e. sympathetic nervous system excitation). I somewhat blame this on my dysautonomia because its like my body can't properly regulate temperature. I figured the shive
  5. Has your daughter seen a neurologist? It might be worthwhile, especially if the spasms are getting worse, if she hasn't, to take her to one (with a videotape of the spasms if they don't occur all the time), just to rule out any neurological causes of the spasms. Did the spasms start before or after she developed POTS? Have you discovered the cause of your daughter's POTS? Does she fall when she has these spasms? Do they cause her pain? Does her head hurt when she has these spasms? Does she experience any cognitive issues, like memory loss when they happen? Do you have a family history of movem
  6. I do admit I am somewhat de-conditioned, especially when it comes to running, weight lifting, and other cardio exercises. I know that if my POTS just magically went away tomorrow, that I would not be able to go back to the amount of exercising I used to do. I do believe that everyone after a period of time (especially if it is years) of not doing something say lifting 50 lbs of weight or running 20 miles will become de-conditioned and will have to work back up to lifting that amount of weight and running that amount of miles, without hurting themselves. My only point is that I don't think my i
  7. I have problems with stairs too. For most of my life I have gone up stairs almost everyday, as I have always lived in a 2 story home, my job is on the 2nd floor, and in school my classes were on different floors. When I developed POTS, I suddenly had a problem where I would be out of breath going up stairs, I would feel palpitations, and I would become quite fatigued, which didn't make sense to me, as I have gone up stairs almost every day of my life for many years. I knew it was not deconditioning, as how could it be deconditioning if I had been doing it almost every day before, and still do
  8. The "losing time" does not seem to be a symptom tied to POTS, at least not from my research on POTS. It sounds like he is having seizures. It could be possible he does have POTS too, although I wouldn't blame his "losing time" on POTS. Is your sister going to have your son do a tilt table test? It has been known for some people who have epilepsy to have a normal EEG simply because they had the EEG when they weren't having a seizure. How did the doctors induce the seizures in your sister? I have episodes of "losing time". It usually only 30 seconds to a minute or so, but it is long enough that
  9. Tachyfor 50years: I am afraid I don't. I also don't know which medical conditions where that would be required. I know that CA is one, as I remember a case where a person was fired because of their health, and it came out that the person was legally required to notify the company of his health condition before being hired. I believe it was related to safety issues. I also know that when I lived in CA, I was told when I took certain meds, that I was supposed to tell my employer, if I had a job that required me to operate heavy machinery, that I was taking those meds. Also, in CA, if you have ep
  10. I ended up telling my boss, even though I was fairly new to the job, because when I first got really sick, it interfered with some of the duties of my job and I was going to several different doctors every week. I still go to the doctor's quite often for someone my age, and unfortunately most of my doctor's only have appointments from 8-5 which requires me taking time off work. I do agree with the others, it all depends on your boss. I had to tell my boss, because my health wouldn't allow me to do some of my duties. I was afraid I would get fired (I live in an at-will state), but there was no
  11. Have you seen a neurologist? If you are concerned about possibly having seizures, it might be beneficial to see a neurologist, to know for sure whether you are or not. The neurologist would possibly also be able to prescribe a medication that could help with your muscle twitches, if those bother you. I am not a doctor, but I have been told that some people with epilepsy have normal EEGs. This is sometimes because they have the EEG when they are not having seizure-like episodes. I see a movement disorder doctor (a type of neurologist) for my muscle twitches, jerks, and tremors. My POTS is tied
  12. My doctor's believe the cause of my POTS is my Parkinson's-like disorder. Carvidopa-Levodopa has helped a lot of my neurological symptoms (like Myoclonus) and helped to lessen some of my POTS symptoms.
  13. If I may ask, ChristyD, POTSGirl, ramakentesh, rachel, and allaboutpeace: How did you get your doctor to prescribe Saline IV as a treatment? What made them suggest it as a treatment (for example they thought it would help with low blood pressure)? Does your insurance cover it?
  14. When I did the poor man's tilt table test it did not show I had postural orthostatic tachycardia. It wasn't until I did the regular tilt table test, that it showed I had postural orthostatic tachycardia. In other words I think it is very possible she has POTS, even though it doesn't seem like it from the poor man's tilt table. It is also possible she has a different form of dysautonomia. Either way it sounds like it would be worthwhile to have her do autonomic testing.
  15. I was diagnosed with CFS 7 years ago. I have never been treated for it. The only comment I got from my doctor, was that he was surprised I graduated from College. I graduated 3 years after being diagnosed with CFS and Fibromyalgia. My symptoms are chronic fatigue, low grade fever, chronic sore throat, muscle weakness, hair loss, eye pain, tinnitus, alcohol intolerance, difficulty swallowing, parasthesias, propioception difficulties, emotional lability, brain fog/ memory problems, chronic muscoskeletal pain, sleep problems, gastrointestinal issues, sensitivities to medications, temperature dys
  16. Has anyone else felt that their emotions have an affect on their POTS symptoms? If so, is it only strong emotions that affect it? What emotions do you feel affects your symptoms? What symptoms do they make worse? I have found that when I get really sad, my chest pain gets worse, and when I get really upset my breathing gets worse.
  17. I have the same problem. When its too cold out, (less than 70 degrees) my pain and shortness of breath get worse. I also shiver like I am hypothermic when it is cold out, and my movements disorders are worse. I end up bundling up in layers of clothing, but then I sweat a lot, and the temperature changes from going inside to outside to inside are rough on me, as I am still cold when outside, but then too hot when inside. When it is too hot out, my fatigue and shortness of breath get worse. I am best POTS wise when the temperature is in the mid 70s. I love hot showers and hot baths. They help co
  18. Unfortunately, I have not yet found a doctor willing to prescribe me anything to help me sleep. I am hoping that once I get to see one of the ANS doctors at UW Med center, that they will be willing to prescribe me something.
  19. My blood pressure ranges a lot i.e. greater than 25/20 points a day (i.e. 117/67 to 144/90). I was curious if any other people with POTS have a wide range of blood pressure variability too? If so, have you gotten an explanation or diagnosis for the wide blood pressure ranges? Was it explained/diagnosed as being due to your POTS?
  20. I am not sure if my cognitive issues started before or at the same time as my gastric issues. I have had cognitive issues since I was a child but that was always blamed on depression. The cognitive issues got worse when I started college, even though my depression was under control. Around that same time, I started having stomach/bowel problems, chronic pain, and chronic fatigue. Shortly after that I started having chest pain and shortness of breath. The chest pain and shortness of breath only happened a couple times a year, whereas the fatigue, muscular pain, cognitive issues and gastro probl
  21. My blood pressure on the tilt table test when laying down ranged from 117/70 to 144/90. When standing up during the tilt table it went up then came down a little bit, but was still in the range of pre-hypertensive/ low hypertension. It came down to the mid 120s. I was only standing during the tilt table test for a little more than 5 minutes, so I don't know if it would have fallen more, or went back up. When I am sitting it ranges from below 120/80 (like 110/67) to the high 130's/80s. I have not measured it standing up. I have not yet tried any meds for my blood pressure/heart rate other than
  22. Hot tubs, hot baths, and hot showers make my POTS worse. Which is unfortunate, since I love to take hot showers and baths as they do wonders for me emotionally and help with muscle soreness.
  23. Rissy2D, I am also curious about the question Potluck posed. Does your sister's hr rise from lying to standing? Thanks.
  24. Jen LR, I am surprised they measure your B-12 every week. If I may ask, why do they measure it every week? I usually get mine measured every 6 months or so, just to verify that the amount of B-12 I am taking is still correct for me. I take B-12 shots once a week. I am like you in that I don't notice much of a change in the way I feel. In other words, if I forget to take my shot for a week or two, I can definitely feel that I need a shot as I get really lethargic, but the shot does not do much other than make me less lethargic. I am always surprised when people say that B-12 makes them feel way
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