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Post by dizzycheermom on Apr 14, 2024 17:02:44 GMT
When y’all were initially looking into what could be wrong, do you remember other things they were considering? I have several autoimmune disorders (fibro, hypermobile joints not sure about EDS, hashimotos, psoriasis and maybe PsA, doctors have conflicting opinions on that. Anyway, I have serious issues with showers and heat and humidity. I have to have the door open, fan on, 1/3rd of the curtain open, cold water right next to the shower and only use lukewarm water. And I still have a hard time and often have to stick my head out of the shower to breathe and sometimes get out and sit on the toilet. I e fainted in 80 degree but humid weather and EMS did all of the usual checks. I actually fainted twice in one day while lying down which got me a quick visit to a cardiologist but I wore a halter monitor and my report didn’t show anything. I have also checked my heart rate upon standing and it wasn’t over a 30 or 40 bpm difference. So my guess is not POTS. I have a drs appt (rheumatologist) in a couple of months, and I’m hoping to come armed with questions but have no clue what else I should be reading about. Some people believe that fibro is really undiagnosed EDS. It does sound like you have some form of dysautonomia. Maybe not POTS but something is definitely going on. You could try adding extra salt and water and see how you feel. Gatorades have the extra sodium and my daughter usually adds extra salt to foods. When she is feeling really icky we give her pickles and potato chips. |
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pantsonfire
Pearl Clutcher
Take a step back, evaluate what is important, and enjoy your life with those who you love.
Posts: 4,740 
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Post by pantsonfire on Apr 14, 2024 17:14:45 GMT
When y’all were initially looking into what could be wrong, do you remember other things they were considering? I have several autoimmune disorders (fibro, hypermobile joints not sure about EDS, hashimotos, psoriasis and maybe PsA, doctors have conflicting opinions on that. Anyway, I have serious issues with showers and heat and humidity. I have to have the door open, fan on, 1/3rd of the curtain open, cold water right next to the shower and only use lukewarm water. And I still have a hard time and often have to stick my head out of the shower to breathe and sometimes get out and sit on the toilet. I e fainted in 80 degree but humid weather and EMS did all of the usual checks. I actually fainted twice in one day while lying down which got me a quick visit to a cardiologist but I wore a halter monitor and my report didn’t show anything. I have also checked my heart rate upon standing and it wasn’t over a 30 or 40 bpm difference. So my guess is not POTS. I have a drs appt (rheumatologist) in a couple of months, and I’m hoping to come armed with questions but have no clue what else I should be reading about. Some people believe that fibro is really undiagnosed EDS. It does sound like you have some form of dysautonomia. Maybe not POTS but something is definitely going on. You could try adding extra salt and water and see how you feel. Gatorades have the extra sodium and my daughter usually adds extra salt to foods. When she is feeling really icky we give her pickles and potato chips. Agreed. I would increase fluid intake. Also have you seen Cardiology and had pulmonary function testing as well as echocardiogram to look at your heart? |
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Post by dewryce on Apr 14, 2024 20:51:14 GMT
Heat syncope? I have a good friend who does not have POTS but has similar diagnosis as you as well as others and the same triggers with heat. AI disorders cause our bodies to act differently for sure. I will look into that term, thank you! Some people believe that fibro is really undiagnosed EDS. It does sound like you have some form of dysautonomia. Maybe not POTS but something is definitely going on. You could try adding extra salt and water and see how you feel. Gatorades have the extra sodium and my daughter usually adds extra salt to foods. When she is feeling really icky we give her pickles and potato chips. I had issues even when I was drinking over 130 oz a day, but I’ve never really gauged my salt intake. Will start paying attention. And read more about dysautotomia. Some people believe that fibro is really undiagnosed EDS. It does sound like you have some form of dysautonomia. Maybe not POTS but something is definitely going on. You could try adding extra salt and water and see how you feel. Gatorades have the extra sodium and my daughter usually adds extra salt to foods. When she is feeling really icky we give her pickles and potato chips. Agreed. I would increase fluid intake. Also have you seen Cardiology and had pulmonary function testing as well as echocardiogram to look at your heart? I saw cardiology for a complete work up. EKG good, halter showed no issues, echocardiogram was good but they had to give me a medication to slow down my heart rate to get a decent reading. Stress test was not completely abnormal but not great, and now that you bring it up I just remembered he wanted me to see a pulmonologist just to make sure all was well. And one of those electrocardiologists. Eeesh, I had forgotten completely about that! I wonder what was going on in my life that it got lost in the shuffle. Off to make an appointment with my primary to see if he has anyone he can refer. Or maybe call the cardiologists office to see if it’s still in my notes, it was at least 5-7 years ago. Thanks so much for the input ladies!!! |
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Post by dewryce on Apr 14, 2024 21:05:24 GMT
Rereading the thread I see a mention of Gabapentin making things worse. I took that for a couple of years for anxiety and pain but it caused weight issues for me so I had to come off of it. I also had a duration of time where I was faint every time I sat up from laying down. Now I’m wondering if they coincided with each other.
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Post by sabrinae on Apr 14, 2024 22:52:36 GMT
When y’all were initially looking into what could be wrong, do you remember other things they were considering? I have several autoimmune disorders (fibro, hypermobile joints not sure about EDS, hashimotos, psoriasis and maybe PsA, doctors have conflicting opinions on that. Anyway, I have serious issues with showers and heat and humidity. I have to have the door open, fan on, 1/3rd of the curtain open, cold water right next to the shower and only use lukewarm water. And I still have a hard time and often have to stick my head out of the shower to breathe and sometimes get out and sit on the toilet. I e fainted in 80 degree but humid weather and EMS did all of the usual checks. I actually fainted twice in one day while lying down which got me a quick visit to a cardiologist but I wore a halter monitor and my report didn’t show anything. I have also checked my heart rate upon standing and it wasn’t over a 30 or 40 bpm difference. So my guess is not POTS. I have a drs appt (rheumatologist) in a couple of months, and I’m hoping to come armed with questions but have no clue what else I should be reading about. One of the indicators of POTS is your heart rate rising more than 30 beats/minute upon standing or a heart rate over I think 130. Sounds like pretty classic POTS symptoms especially if you have a hyper mobility disorder. The two regularly coincide- your blood vessels are connective tissue and they are too stretchy to go along with the rest of your too stretchy connective tissue. |
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