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momofpreciousboy

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  1. This is interesting because what got me was a story someone posted about thyroid. You can have normal TSH levels and still have problems. You have to go to a doctor who will also look at symptoms. And do the free T3, T4s, and I really am not sure what else. I know these people have an AMAZINGLY similiar story to mine. It would explain everything-rib pain, muscle weakness, swelling in hands, my eye problems, virtually every system in my body. I just read something that said it can do something with the blood vessels. I have never had a doctor put it together. I have been to many specialists to be told "normal" and they are not normal. Some things like weight do not fit me either, but I am breastfeeding, and that could throw it off. I cannot help but think POTS is a group of symptoms not a disease, and something is causing it. It is so hard because you just do not know if you are getting good doctors, and it is hard when the tests that are in the normal range don't always mean that. Plus they changed the ranges a few years ago for TSH, so who knows who got missed in that. There is no doubt I have POTS. I am going to go to this dr, and it will be interesting and expensive-as we have no out of network benefits. There is a family history, and I just cannot settle for this lack of quality of life until I am certain. Thanks, Jennifer
  2. Hello. I am wondering if any of you have had extensive hormonal work ups. Thyroid T3, T4 in addition with TSH, adrenal workups, sex hormones workups. I cannot help but notice the extreme similarities to hyperthyroidism, and the so called adrenaline rushes. I have been reading and it seems as if you can have it even if the TSH is normal. Someone told me of a Dr in Lubbock, TX that sort of looks at the whole picture. Instead of the cardio for heart rate, neuro for ... you get the idea-a specialist for each symptom. I am wondering if any of you had POTS and were diagnosed with thyroid problems as a cause of POTS. Thanks, Jennifer
  3. wiggles and POTS are terrible names for this. They need to change POTS to something else.
  4. At my worst, this would happen, and never figured it out. I always wondered if I would wake up the next day. I attributed it to just everything being totally messed up. It is very scary and in my case for sure related to POTS. If it makes you feel better, it has not happened in a while and stopped after I started getting better and on beta blockers. I hope it stops, as it is very scary. JenniferTX
  5. I have both. I wonder too if it is related to autonomic function. I also have loss of sensation everywhere- not total, but noticable. Good luck, and it could easily be from sinus. JenniferTX
  6. I just wanted to say my cardio stresses that POTS is a collection of symptoms--hence the word "syndrome". It is NOT a diagnosis. So I do not think POTS is what is wrong with us, it is a collection of symptoms. There is something else. JenniferTX
  7. I struggle with this too. I worry that they are missing something, but what can you do? You feel so nuts for going to so many drs, plus they don't know anything (for the most part). Then, the cardio will say that is not in my field, neuro same thing and it is like you have to find someone in every field that knows POTS. I have gotten better, I am pregnant again 10 weeks, and that has helped. I still take some propranolol but not as much. I think the most helpful thing to me would be to study the ANS and its controls instead of just POTS research. Really it controls so much and really, if it is messed up, it can throw a lot off. I just have not had time to do that. I really want to go to Grubbs. I will do that before I go to any other new drs, because I think I can find the most answers there. I find some comfort in that I have an aunt that is 70 with this. I do not think a lot of medicines work well for POTS. Except for me beta blockers have been a blessing. I hope you find what you are looking for. Jennifer TX
  8. If it makes you feel any better, the throat constricting happens to me. From what I understand, it is like the neck shoulder pulling--the adrenaline does something to the muscles something with the oxygen in the muscles, and creates this suffocating and throat tightening. Scares me too. Good luck. JenniferTX
  9. I always take it with food. Also, I cannot tolerate the 50 mg dose and take 12.5 mg and at that dose, it works for me. 50 mgs wiped me out. Good luck, JenniferTX
  10. It was explained to me that this happens and causes that coat hanger effect (pain shaped like a coat hanger neck/shoulder) because of adrenaline. Adrenaline does something to the muscles something with oxygen in the muscles. That is all I can remember. It caused me massive neck pain, which gets worse during bad episodes. In one of the books, it talks about a person, who would think the worst of every symptom. Mitral Valve/ Dysautonomia, I think. I do this too. I was stuck on the Chairi for a while, and sometimes still wonder, but I have gotten so much better. But the symptoms are so similar, it is a valid concern to me. But my dr said that it is a common symptom of POTS. Hope it gets better. The beta blocker worked so well for this neck pain for me. Better days, JenniferTX
  11. Hello. I know exactly how you feel. It is a life changing experience. Start by doing the what helps on the potsplace web page. They really do help. Even the little things like gatorade can make a huge difference. Compression hose. The hard part is when you are diagnosed and it takes forever to get into specialists. This support forum will get you through a lot. It is just wonderful. Look at what people have at the bottom of their messages and see what has helped them. JenniferTX
  12. Hi everyone. I am wondering if anyone struggles with the following. You know all the reports out this week about women and heart disease? They were saying that the standard tests do not detect the plaque that clogs arteries, and that women's blood vessels are so small. There were women who went to the Er 5 times and told they were ok, felt like they were not getting enough oxygen/felt like they had a pillow over their face-this was on local. Do you guys struggle with you wonder if you will have a heart attack, from the symptoms you have especially when working out? I mean, many symptoms are classic heart attack signs. SOB, lightheaded, chest pain, ect. I have been through many heart tests and told my heart is fine. But then you see these reports that say well, the standard tests do not detect the problems in women. Just wondering how you ever know. Jennifer TX
  13. I do not have to have a prescription, and my insurance does not cover them. The jobst do squish my toes too. I guess there is no perfect compression hose! I get frusturated because it is hot here and I wear shorts and sandals, and they get holes all the time, and it is too expensive to buy new ones. I sew them all the time. I have considered just wearing regular hose over them, but it is so hot. Thanks for the replies. JenniferTX
  14. Hi. I have been wearing Jobst 20-30 mg hose as prescribed by the cardio. Sometimes they make my legs hurt in places like a bruise. Plus they are 86.00 and really do not last long. I have had them professionally measured, and understand that Jobst is the only FDA approved ones, but dislike them too much. Anyone know of something more comfortable and where to get them? Thanks JenniferTX
  15. [i have noticed this too. Has anyone mentioned it to Dr. Grubbs or any of the specialists and know why it would bother us? I have the worst time going to the stores at night, I assume it is because they seem brighter at night. I also have to sleep on my sides, as if I sleep on my back, it seems as if I quit breathing and wake up. According to all CT scans there is nothing wrong. I wonder if this could be a POTS symptom. I hope things get better, and it sounds like you have been to some wonderful drs. I understand about the screen, I could not type and get on the computer at my worst. We have a flat screen now, but It still bothers me. JenniferTX
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