Hello! I’m Rachael and I’ve beem a member of this group for a while now but haven’t posted in a long time (if ever I honestly can’t remember!) Anyway, I have an inconclusive POTS diagnosis and have for about 5 years now. I say inconclusive because some doctors tell me I definitely have it and others tell me I don’t. It’s so frustrating. I personally am sure I have Hyper POTS and based on all of the reading I have done, especially from people in this forum, I am even more sure I have it. I have the classic symptoms of hyper pots and just about every single one of them.
When I first got sick I was terrified. I was sure I was going to die. When I would get “attacks” as I call them, I would beg someone near me to call 911 only to go to the ER to be told I had a panic attack. Well of course, my anxiety skyrocketed after each attack. I went to SO many doctors and specialists. Had 2 TTT’s. I passed out cold on one but “passed” the second but my diastolic BP was high. I have the most trouble with my diastolic numbers and it honestly still terrifies me if I think about it too much. I’m scared I will have a stroke or something. Anyway, I also struggle with chest pain too and that makes me scared for my heart even though I’ve had several full cardiac workups over the years and all is completely fine with my heart. I’ve had MRI’s and CT scans on my brain due to awful headaches. I’ve been tested for a Pheocromcytoma several times because I convinced myself I had one but all my tests were perfect in that area too. So basically I am on here today to get some encouragement from those who have Hyper POTS. I’m kind of in a low point today and would love to hear something positive because I am pretty scared right now. Some days my mind goes wild with what if thoughts and today is one of those days I guess. I am 34, married with 2 kids ages 12 and 8. I’m a stay at hom mom but living with this illness has been so hard. I feel like someone kind of pulled the rug from under my life that was going so well and suddenly everything changed. What tips do you guys with Hyper POTS have for someone like me who can’t seem to get a definitive diagnosis? The doctors in my area aren’t too familiar with Dysautonomia apparently. I’ve even traveled to Oschner’s in New Orleans only to baffle some doctors there too. Lol.
My main symptoms are tachycardia when standing and it gets worse with even minor physical exertion, fluctuating BP it can be low sometimes and swing high at times especially during activity. I have had adrenaline storms in the past that made me fear for my life immediately (luckily haven’t had one in over a year), I have passed out 3 times so far, I have body temperature regulation issues, I get left sided chest pain a lot, I used to get terrible headaches but those subsided thank goodness, I have bowel issues that go back and forth between constipation and diarrhea, I am so easily agitated by things that don’t bother most people like sounds and over stimulation. I get dizzy off and on, I get short of breath, and sometimes feel a little off balance. I have other issues too but these are what come to mind. I guess I’m just looking for a friend who understands and can offer some encouraging words and advice. I am going on a Disney World trip with my family next week and I’m so excited to be able to experience the memories with my husband and kids but also pretty nervous about how my body is going to handle this. Everyone in this group seems so nice and I’m glad I found an outlet where people understand how I feel because I don’t have that anywhere else!