RachaelLee56

Thanks! Have you been diagnosed with Hyper POTS?

Thank you for your reply. Means so much to me to read about other people who experience this as well. Makes me feel so much less alone. I’m sorry you deal with this too. It’s not easy and not a fun way to live.

This guide was amazing! Thank you so much.

I would love to be on a med that I can tolerate that controls the adrenaline dumps. Those are the absolute worst symptom I get and makes me think I’m going to die.

I have not had my catecholamines tested that way before. I had them tested several times (along with other hormones) to rule out the adrenal tumor. I did blood tests and urine tests for that tumor and all were within perfect levels. I would love to see a dysautonomia doctor. I saw one before in New Orleans but he didn’t test me that way. He did some basic tests and told me I had dysautonomia but never told me what type.

I took a beta blocker in the past but it made my blood pressure too low when I slept. I would up passing out when I stood up. So I quit taking it.

I would love to get tested for hyper pots by someone who actually knows what they are doing! I am getting no where here with my doctors. My PCP is very helpful and is willing to try just about anything when I come to her with suggestions but I would love to get properly diagnosed.

Thank you! I’m going to PM you my story if you don’t mind!

Yes I do. And it gets worse with even slight physical activity. Also, I get heart palpitations and tachycardia from just standing up.

What is the RAS club?

I don’t have muscle twitches or tremors that I have noticed. Also, I don’t pee excessively. At least not on a regular basis.

I’m sorry you deal with this too! My adrenaline storms have been few and far between lately thank god! They are awful.

I’m sorry to hear you’re struggling with this crap too. It’s terrible at times. I’m currently taking Lexapro and Xanax when necessary. These 2 meds have helped me a lot but I’m still having symptoms. I have tried beta blockers in the past without much relief and some other meds a POTS doctor put me on that just made me worse. I think it was Florinef. I drink a lot of Gatorade and wear compression hose that help. I try not to over exert myself but being a mom of very active kids, that’s impossible most days! I hope you have a good follow up at the cardiologist tomorrow! I always have good check ups there. I love my cardiologist but wish he knew more about dysautonomia. At least I know my heart is healthy. I still worry about the skyrocketing blood pressure I get sometimes and it scares me because I’m petrified of a stroke or something. Which only makes the blood pressure worse!

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!