momofpreciousboy

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

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

wiggles and POTS are terrible names for this. They need to change POTS to something else.

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

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

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

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

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

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

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

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

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

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

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

[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

Hi guys, again. Still trying to get out of this pothole. I had been taking Inderal La 80 mg and two days ago started 50 mg of Zoloft. I noticed this morning that my hr and bp were lowish/normal for a regular person. But I took the inderal anyway. Now my hr is in the 50-60s and bp in the 80s-90s/ 50s-60s. Needless to say I feel awlful. Just trying to drink a lot and eat salt to keep it up till one of the meds wears off. Does anyone know why the Zoloft would lower my hr and bp? Could it alone lower hr and bp? This illness gets weirder every day and I cannot figure out anything-everything you try-the opposite happens. Jennifer TX

Hi. Your symptoms are just like mine except flushing and itching. But I have about 50 more I could add to it. I got better, but worse again big time with the flu. I got better by increasing the head of the bed 6 inches, beta blocker inderal, salt, drinking lots, and exercising which started off as only a couple of min a day. Now I can do 40 some days on the bike. Not now-but right before I got bad again. I never was 100% again and do not expect it. The beta blocker did wonders for the startling thing--I just about jumped out of my skin over everything, could go days without sleeping and not get tired--whcih was nice, because if I did not sleep, I did not get as bad, I assume from not laying down. The beta blocker lesses the surges and the intensity of them for me. Now the surges consist of whole body shaking, fear, needing to go to the bathroom, and maybe a few other things. But, I do not get the drastic bp swings, and racing heart and not as much fear. I do have all over numbness. Oh, and compression hose--Jobst. I hope you get better. It is so difficult to cope with this. And I understand completely, and I know the best thing is reading about others like you--because it is so nice not to be alone. Jennifer TX

Hi guys, and hope you all are doing better than me. I feel terrible--terrible "Coat hanger" muscle pain, feels like my chest, head, neck are starving for oxygen. It is hard to breathe. And WORST OF ALL --the terrible adrenaline rushes. I hate them so bad. One woke me up in the middle of the night--I felt like something was going to happen. And then it started-----Shaking you know the routine. I just hate the feelings you get with them. I just think--it is amazing when I wake up, because really I feel like I won't wake up. Do not know why I feel like that. I went to family dr and am going to start Zoloft. I am so disappointed. I was doing so much better, and now, back to square one just about. It is so hard to eat I guess because of adrenaline. Just the whole thing. The whole cycle. Very frustrating. Jennifer TX

Thank you all. I just had a terrible I guess adrenaline rush with so much anxiety. I feel better now that it is over, but, it is really acting up. Funny thing is I am really numb all over again, it had gotten better and some feeling had returned. I guess it is adrenaline related maybe. It was a Z pack, so I guess it will not be out of my system for days. I do not know if it is the flu or antibiotic. Thanks for the responses. JenniferTX

Hi. I have the flu for 6 days now. I am taking an antibiotic. My POTS symptoms are worse despite keeping fluids high. Is this expected, and why would it make POTS worse? My heart rate resting-laying down-is in the low 90s-100s on 80mg Inderal. Does it take a lot longer to recover than a person without POTS? Thanks, JenniferTX--I am really considering the flu vaccine from now on--as it has set me back so much.

Julie, what you are describing is very similar to what I go through and at my worst went through every day. I am sorry, and all I can say, is it happens like you described. It is the worst feeling. If I turned my neck, it made me sick-dizzy, just felt like someone was stirring in my head, eyes, everything. The twitches, and vibrations too. I am paying for this weekend too. Hopefully tomorrow will be better. JenniferTX

Hi Melissa: Thank you for all the interesting info. I think it is directly related to the BB as I could handle the 60 but not the 80. But 80 works better for blocking the adrenaline. I guess that is what is going on. I have a prescription for proamitine sp? but, I want to have another child and ---so it is out. I do wonder if it is just BB or if it is low blood pressure, though it does not seem that way. Cannot win, can you?? It is on the other subject, but as for sleep study. Really I am sick of all these tests. I have a child-this takes time away. The tests come neg every time--so what is the point. I went for a 4 hour eye appt-completley normal although I have many eye symptoms. These drs will think I am nuts--- I think I am too--not mentally-but physically. Really I think POTS bodies are really messed up and wonderful at messing with tests so they come out normal!!! Anyway, thank you. JenniferTX and last but not least the "fight" to keep BP up - even without low readings - can cause fatigue. What do you mean by the above line? JenniferTX

That is one symptom I did not mention to anyone. Yes, it happens, especially during attacks. I know it is a prob for moms, but I never had trouble until the blasted POTS stuff. Interesting post. I know part of ANS has some control over this, but not complete. JenniferTX

80 mg of Inderal LA works good for controlling all the muscle straining from too much adrenaline, but makes me not do a thing all day. I just flat out do not want to do anything. But 60 mg leaves me with still a lot of muscle tightness. Are there any specialist that are really good with hyperadrengics? Is it blood pressure that causes the fatigue? Or is it just a side effect that you cannot control? Any ideas on how to keep it from taking all your energy would be appreciated. JenniferTX

Hi guys. Does anyone know what is going on with the body when you start to fall asleep, and fade away? You suddenly wake up like after a second of falling asleep, and this goes on for a bit. Then finally you go to sleep not knowing if you will ever wake up. Then you wake up like maybe you were not breathing or your chest sunk too much. I have asked the dr about this before, but -no ideas. It drives me nuts, not to mention scaring me. Thanks, JenniferTX