StayAtHomeMom

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About StayAtHomeMom

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  1. My biggest strike against having hyperPOTS is my blood pressure doesn't rise. Since this all started it moves more but only like 5 or 10 points. And that is just daily reading not tilt table readings. Can you have hyper without the blood pressure change?
  2. Buffrock is irritability and mood swings not normal for regular POTS?
  3. My body goes through phases. It is almost like if I eat it makes my stomach bloat and makes all my symptoms drastically worse. When it happens I avoid heavy foods, so no potatoes or breads. Eat tiny meals only when hungry. It usually lasts a week or so and then I slowly reintroduce my heavier foods. Pizza is one that gives me a lot of trouble. But as long as I don't eat a lot of it I can still have it.
  4. Does anyone else notice loud noise or overlapping noise (like crowds or mutiple people) makes it worse? Or mornings are better than evenings?
  5. Finnmin I am not sure. I imagine I did so I could keep my mind off not having many cigarettes and absolutely no caffiene. I never thought about it. I spoke to my pcp the other day and she is sending me to an endocrinologist to see if he can do the blood test. I requested that test because of some new information I got from my dad. But now I am wondering if I did it "wrong".
  6. I had the 24 hr urine test and it all came out normal. I have an appt with an endocrinologist next month to test the blood. As far as I know as long as the test is done correctly by the patient it should be accurate.
  7. The only idea I have would be a good chiropractor. Have you tried an ENT? Or maybe an opthmologist (not optometrist)? I am not sure a rhematologist could help, but then again maybe they have seen your symptoms before and they might know what it is. I think rhematologists see a lot more because of what they deal with.
  8. Thanks everyone for your input. I am grateful.
  9. The articles helped a little, but I have read them before. It still doesn't truely give me the difference though. I am hoping to find something that is a symptom or sign that directly points to "you have hyperpots".
  10. When I used to do my poor man's to collect data I would watch tv so I wouldn't think about it. I can drop my hr if I think about it so I have to have something to keep my mind occupied. I did it everyday for a month. I had a few normal days and a few few really bad days but I averaged about 25-35 most days. Everytime it was done in my doctor's office it would be normal. I don't think my pots is as bad as it could be, then again I am not a hundred percent sure when it started. My tilt table showed me above 130 for almost the whole 45 minutes. I didn't have any meds administered. But then again I think my cardiologist might have been humoring me thinking it wasn't gonna show anything
  11. I would get a second opinion. I didn't pass out on my tilt table yet I "failed" it and was diagnosed with POTS. Look into NCS. For some reason I am thinking that is related somehow to POTS. I can't remember where I seen NCS in all my research. Maybe someone else will know. Does you hr jump the reqired 30 most of the time? A lot of the average numbers you are giving sound like mine. A lukewarm shower will help bring those numbers down when showering. Try doing a poor man's tilt table for a little while and record the results that way you have some data to give to your doctor. POTS can be misdiagnosed as anxiety. My doctors kept telling me that was what I had. I knew better though. My panic attacks feel nothing like my POTS. I hope you find your answers. I know it took me a year and a half just to get my diagnosis and now I am on the long road of finding my cause. Don't lose hope. You will find your answer.
  12. Something I have noticed during my research these last months is there doesn't seem to be a good list of the differences between pots and hyperpots. I know hyperpots may or may not cause a blood pressure change but are there any other symptoms specific to hyperpots? I know the difference by definition and I know there are tests that could tell the difference, but I am wondering about the symptoms and signs themselves.
  13. Has he tried a calcium channel blocker to lower his blood pressure? They recently switched me from the propranlol to the new one and I tolerate it so much better. It has dropped my bp by an average of 10 points just from the lowest dose. I dont have blood pressure issues so I have to keep an eye on it tho.
  14. I think that is a question for a doc. I have an ask a nurse hotline through my insurance. Thats who I would call if my husbands blood pressure looked like that. His numbers usually run 140/90. That being said when we first figured out he had hypertension his bottom number has hit 110. If it hadn't gone down I would have taken him to the er. Through pressuring his doc we figured out he has mild/moderate sleep apnea, so I think that is a huge factor. He refuses the meds. Other than his high cholesterol and triglycerides he is pretty healthy. I know from reading some of your previous posts that your husband has a lot going on. I hope you find answers soon. And I wish my husband was as understanding and supportive as you are. Good luck!
  15. I don't know if eating right would reverse autoimmunity but eating right can prevent more types from emerging. My allergist told me once you get one type you will have more as you get older. I agree POTS is always secondary to something. It is a cluster of symptoms not a disease in itself. Sometimes the cause isn't obvious but it should be throughly investigated. My mom's old pcp told her POTS isn't that big of a deal as long as you take your meds you are fine. That made it sound like it is just seasonal allergies, no big deal. But as a sufferer of POTS I believe it is a big deal. It feels like you are always being beaten with a really big stick, and because no one sees the marks it isn't a problem. In my journey I have found a lot of doctors that treat 1 symptom. It isnt enough. The whole body should be treated. And if thd patient believes something is wrong they should investigate. Not dismiss them. Sorry for the rant, doctors and others who haven't experienced an "invisible disease" make me a little crazy. I hope you find your answers. It seems like you may have found a good doctor to help treat you.