RachaelLee56 Posted February 18, 2019 Report Share Posted February 18, 2019 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! Quote Link to comment Share on other sites More sharing options...
JimL Posted February 18, 2019 Report Share Posted February 18, 2019 I have a very similar experience, but I am new to this. I think some of my doctors think I am a head case. I have my followup with the cardiologist tomorrow. I have gastro issues as well. Belching, especially after eating. What started my crap show was a H Pylori infection last year that was confirmed through EGD with gastritis. I also have 4th cranial nerve palsy too, that became apparent through this. CT scans, MRIs, ultrasounds, all negative for anything that could explain my symptoms. I had a tilt table test last week. Passed out. That totally freaked me and I haven't felt well since. I hope to get some answers tomorrow. I think the key is to find a good doctor, meaning PCP. I am still looking. Quote Link to comment Share on other sites More sharing options...
RachaelLee56 Posted February 18, 2019 Author Report Share Posted February 18, 2019 11 minutes ago, JimL said: I have a very similar experience, but I am new to this. I think some of my doctors think I am a head case. I have my followup with the cardiologist tomorrow. I have gastro issues as well. Belching, especially after eating. What started my crap show was a H Pylori infection last year that was confirmed through EGD with gastritis. I also have 4th cranial nerve palsy too, that became apparent through this. CT scans, MRIs, ultrasounds, all negative for anything that could explain my symptoms. I had a tilt table test last week. Passed out. That totally freaked me and I haven't felt well since. I hope to get some answers tomorrow. I think the key is to find a good doctor, meaning PCP. I am still looking. 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! Quote Link to comment Share on other sites More sharing options...
JimL Posted February 18, 2019 Report Share Posted February 18, 2019 59 minutes ago, RachaelLee56 said: 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! I have or had high blood pressure and I am on lisinopril and metoprolol, small doses. I've lost 167lbs since June of 2017. I don't know if that has anything to do with it or getting the H Pylori or the back surgury. Anyway, here's a link to my thread: Not sure about lexapro and xanax. I know what the latter is, not the former. I had been using one knee high compression stocking due to a DVT I had in 1993, but the knee highs aren't enough. I got 20-30mm pressure thigh highs and I have full 30-40 stocking, but it's much harder to get on and the feet are tight. I need custom or something better like I do with the knee highs, it's just expensive. that said, the compression stockings help a bit. I try to use a bit more salt too. I just don't know what to do to make this right. Back in May, was hiking over 20 miles a week. Now I have problems just getting in a mile or more a day just walking. I can't imagine having to care for little children. That would be impossible. I have 5 kids, but the youngest is 13, so they are self sufficient for most things. Right now my wife is very stressed as more things are on her and she doesn't get this. She doesn't believe in doctors. She thinks the only doctor one should see is the medical examiner. I come from a different background. If you don't feel well, find out why. I hope you find anwers. There just doesn't seem to be a lot of doctors familiar with this and it seems that even the ones that are treat it symptomatically. I'd like to see more root cause analysis. If a few million people have this, it's common enough to want to figure it out. Quote Link to comment Share on other sites More sharing options...
Outaker Posted February 18, 2019 Report Share Posted February 18, 2019 Rachel you are describing my condition exactly. I am battling with nightly adrenaline storms at the moment until i get into stanford.. Quote Link to comment Share on other sites More sharing options...
Outaker Posted February 18, 2019 Report Share Posted February 18, 2019 curious do you have tremors or muscle twitches? also do you pee alot? Quote Link to comment Share on other sites More sharing options...
Outaker Posted February 18, 2019 Report Share Posted February 18, 2019 @haugr I believe she might be a member of the RAS club.. Quote Link to comment Share on other sites More sharing options...
RachaelLee56 Posted February 19, 2019 Author Report Share Posted February 19, 2019 4 hours ago, Outaker said: Rachel you are describing my condition exactly. I am battling with nightly adrenaline storms at the moment until i get into stanford.. I’m sorry you deal with this too! My adrenaline storms have been few and far between lately thank god! They are awful. Quote Link to comment Share on other sites More sharing options...
RachaelLee56 Posted February 19, 2019 Author Report Share Posted February 19, 2019 4 hours ago, Outaker said: curious do you have tremors or muscle twitches? also do you pee alot? 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. Quote Link to comment Share on other sites More sharing options...
RachaelLee56 Posted February 19, 2019 Author Report Share Posted February 19, 2019 4 hours ago, Outaker said: @haugr I believe she might be a member of the RAS club.. What is the RAS club? Quote Link to comment Share on other sites More sharing options...
Outaker Posted February 19, 2019 Report Share Posted February 19, 2019 Hmm.. Im not sure if you have hyper pots rachel.. do you have orthostatic hypertenstion? Quote Link to comment Share on other sites More sharing options...
RachaelLee56 Posted February 19, 2019 Author Report Share Posted February 19, 2019 4 minutes ago, Outaker said: Hmm.. Im not sure if you have hyper pots rachel.. do you have orthostatic hypertenstion? Yes I do. And it gets worse with even slight physical activity. Also, I get heart palpitations and tachycardia from just standing up. Quote Link to comment Share on other sites More sharing options...
Outaker Posted February 19, 2019 Report Share Posted February 19, 2019 You need to be on a blood pressure med. Message me Quote Link to comment Share on other sites More sharing options...
Pistol Posted February 19, 2019 Report Share Posted February 19, 2019 Hi @RachaelLee56 - yes, I share your symptoms ( and history of ignorant docs ) and I have hyper-POTS. What pretty much is a key sign of hyper-POTS is the diastolic hypertension and tachycardia upon standing. This is - in my case - caused by excessive vasoconstriction from high norepinephrine levels. It also causes the chest pains you describe. When I could not get anywhere with the local docs I went to a specialist who was able to diagnose me and test me. What I have found extremely helpful for my symptoms are Carvelidol and Diltiazem, they are a beta blocker nd a calcium channel blocker. I have been on them for years. Feel free to pm me if you have questions - take care of yourself!!!! Quote Link to comment Share on other sites More sharing options...
p8d Posted February 19, 2019 Report Share Posted February 19, 2019 I have hyper pots too. BP rises and tachycardia kicks in after being upright for a time. Then all the wheels fall off, sweaty, shaky, nauseous, etc. Have you had your catecholamines tested? Properly? Laying for 10 minutes and then standing for 10 minutes? I believe that’s the gold standard test. Can you get to a Dysautonomia clinic for testing? There are lists of Drs on this sites main page. Specialists are worth their weight in gold. I just started guanfacine for my increased norepinephrine but tried clonidine and methyldopa first. They control the norepi dumps which helps control BP/HR etc. Quote Link to comment Share on other sites More sharing options...
Pistol Posted February 19, 2019 Report Share Posted February 19, 2019 Hey @p8d - I too take guanfacine and it works well for me!!! The good thing about it is that it not only works for high BP but also for attention issues. I have been on it - and benefitted from it - for years. I hope it helps you as well!!! Quote Link to comment Share on other sites More sharing options...
haugr Posted February 20, 2019 Report Share Posted February 20, 2019 On 2/18/2019 at 7:29 PM, RachaelLee56 said: What is the RAS club? Agreed @Outaker, sounds like she could be a member of the club. lol @RachaelLee56 what he's referring to is a known cause of POTS that results from a dysfunctional RAAS. Here's a guide that I wrote up about it: http://hyperpots.blogspot.com . Quote Link to comment Share on other sites More sharing options...
RachaelLee56 Posted February 20, 2019 Author Report Share Posted February 20, 2019 17 hours ago, Pistol said: Hey @p8d - I too take guanfacine and it works well for me!!! The good thing about it is that it not only works for high BP but also for attention issues. I have been on it - and benefitted from it - for years. I hope it helps you as well!!! Thank you! I’m going to PM you my story if you don’t mind! Quote Link to comment Share on other sites More sharing options...
RachaelLee56 Posted February 20, 2019 Author Report Share Posted February 20, 2019 On 2/19/2019 at 5:03 AM, Pistol said: Hi @RachaelLee56 - yes, I share your symptoms ( and history of ignorant docs ) and I have hyper-POTS. What pretty much is a key sign of hyper-POTS is the diastolic hypertension and tachycardia upon standing. This is - in my case - caused by excessive vasoconstriction from high norepinephrine levels. It also causes the chest pains you describe. When I could not get anywhere with the local docs I went to a specialist who was able to diagnose me and test me. What I have found extremely helpful for my symptoms are Carvelidol and Diltiazem, they are a beta blocker nd a calcium channel blocker. I have been on them for years. Feel free to pm me if you have questions - take care of yourself!!!! 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. Quote Link to comment Share on other sites More sharing options...
RachaelLee56 Posted February 20, 2019 Author Report Share Posted February 20, 2019 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. Quote Link to comment Share on other sites More sharing options...
RachaelLee56 Posted February 20, 2019 Author Report Share Posted February 20, 2019 23 hours ago, p8d said: I have hyper pots too. BP rises and tachycardia kicks in after being upright for a time. Then all the wheels fall off, sweaty, shaky, nauseous, etc. Have you had your catecholamines tested? Properly? Laying for 10 minutes and then standing for 10 minutes? I believe that’s the gold standard test. Can you get to a Dysautonomia clinic for testing? There are lists of Drs on this sites main page. Specialists are worth their weight in gold. I just started guanfacine for my increased norepinephrine but tried clonidine and methyldopa first. They control the norepi dumps which helps control BP/HR etc. 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. Quote Link to comment Share on other sites More sharing options...
RachaelLee56 Posted February 20, 2019 Author Report Share Posted February 20, 2019 Just now, RachaelLee56 said: 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 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. Quote Link to comment Share on other sites More sharing options...
RachaelLee56 Posted February 20, 2019 Author Report Share Posted February 20, 2019 11 hours ago, haugr said: Agreed @Outaker, sounds like she could be a member of the club. lol @RachaelLee56 what he's referring to is a known cause of POTS that results from a dysfunctional RAAS. Here's a guide that I wrote up about it: http://hyperpots.blogspot.com . This guide was amazing! Thank you so much. Quote Link to comment Share on other sites More sharing options...
Outaker Posted February 20, 2019 Report Share Posted February 20, 2019 WE need a method to prevent them from occuring in the first place... Quote Link to comment Share on other sites More sharing options...
p8d Posted March 5, 2019 Report Share Posted March 5, 2019 @Pistol the guanfacine ER is working pretty well. I am close to being on it long enough (3 weeks) before we might up the dose. I like how I don’t get peaks and valleys and I think I am more calm in general. Probably the first time in my life! @RachaelLee56none of my Dysautonomia specialists had prescribed it before so the cardiologist was reluctant but did in the end. It’s not controlling my BP all the time, I still get high readings but not as often. Ok, apparently I shouldn’t have said anything. BP is now 165/81. Arghhh Quote Link to comment Share on other sites More sharing options...
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