Dysautonomia

Vanderbilt has an autonomic dysfuntion research center, if that’s not too far from you. It’s one of the main research centers for POTS in the US.

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Thanks to everyone who posted under this topic. I wasdiagnosed with primary hypertension 5 years ago when I was 27 years old. One thing that always bothered me about this was the fact I had NO risk factors for this, unless you count heredity which even I question. Mother developed high BP at age 60(but so do many people?), and my grandmother was 19 when diagnosed but in hindsight, I sometimes wonder if she had Dysautonomia instead.
As I did not need to modify diet, exercise, etc, I have only needed bp meds off and on since being diagnosed. Even my p-doc said this is unusual for hypertension (the off and on thing). Only recently have i realized my bp is high only while standing or mobile. My tachy has always been mild and also episodic, and not necessarily postural. It was also 5 yrs ago when other mysterious symptoms of “physical anxiety” cropped up, so i think there is something to this. 4 years ago, vertigo started, gradually got worse until 2 years ago and has been “stable” ever since. The vertigo may or may not be related to Dysautonomia for me, but i see no harm in investigating the POTS route regardless.
I am not registered on Dinet forum because i THINK you have to be diagnosed to register there, yes? So I was wondering if anyone knows a website listing POTS specialists or neurocardiologists? I live in NC, so my first guess would be Duke. In response to others on this thread, I have also noticed Potsies on various forums testing positive for Lyme…

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Hi:
I am in the same boat as you and I am so glad I came across your reply to this topic. I got diagnosed with high blood pressure this year which all the doctors found strange because I only weigh 108 (I am under weight), I’m 28, eat very healthy, and try to exercise as much I can. I to have family with high blood pressure but the heredity part of it makes me a bit suspicious as they got high blood pressure late in life and ate really salty foods. When I went to the emergency room for my MAV, the ER doctor could not believe how high my blood pressure was and she informed we that I am to young and in good health for this. She had 3 blood pressure machines and 4 different nurses check my blood pressure because she was shocked it was high. I followed up with my general doctor and my blood pressure went down so she is going to wait to put me on blood pressure meds. I know nerves can cause high blood pressure but not high as my blood pressure. My blood pressure can get really high and sometimes it drops (fluctuates).I also started getting physical anxiety and increasing heart palpitations. My vertigo is at its all time worse and I have a new and odd symptom. I am craving salt even after I have a little my body is craving it which is odd and I can’t sleep anymore. I feel like I need to dump a cup of salt in my mouth. Your symptoms are just like mine and wow it’s all so strange.

Katie

Katie, what tests have you had since symptoms started? (not just the vertigo, but everything else mentioned). I really think we are onto something here. I just cannot believe you and I merely “lost the blood pressure lottery”, heredity or not. I was always told high BP is equally, if not more dependent on lifestyle/weight, than heredity. Since those factors were already in our favor, we should not have primary hypertension.
Should we try to get our GPs to order a Tilt Table Test, etc? Or should we consult a specialist directly? See, I have told my gp several times about my POTS fears, but he is either unconcerned or not familiar with it(many GPs arent…).

Hi:
I have had the basic blood tests like iron, b12, white/red blood cell count etc…I have also had a cat scan, MRI, nerve test, and sigmoidoscopy. I really think that we should get tested for Lyme disease and also I am going to push my neurologist for a tilt table test because this high blood pressure stuff is just not normal for us. My sister who is 1 year older than me and eats junk food does not even have high blood pressure. I have not fainted before but I do tend to feel faint. The only symptom I don’t have is the fatigue but I read that not everyone gets all the symptoms. I find this really strange that we have the same symptoms. Another thing is I went vegetarian for a while and my blood pressure was still high. The challenging part is convincing my doctor to get me these tests. My neurologist was always asking me what could be causing the dizziness but I could never figure it out. I have also been getting these really bad dizzy spells where my brain actually feels like its jumping around. I will keep you updated.

Cheers,

I went to a cardiologist yesterday for POTS symptoms. Sure enough, my heart did rise significantly upon standing (29 bests per minute) not enough to cause fainting or anything. I have always had a very high resting heart rate, despite being physically active. Also discussed IBS symptoms that change over time.He noticed I’ve had thyroid issues in the past too.

Well this is autonomic dysfunction! I won’t have a heart attack but need to try to manage this.

I’m sure it’s all related to migraine as my hormones (autonomically controlled) has always caused issues.

Doing a stress test, holter monitor and blood pressure monitor for peace of mind.

It is a good explanation.

And here is what he suggests….
Cold showers!!! (Propranolol out of the question).

He couldn’t stop talking about it. “Especially for you” he went on.

Does anyone take cold showers? It’s in the middle winter here… I cannot bring myself to do it. GOD NO! Any success?

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POTS is an apparently unexplained common comorbidity with MAV …

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Oh my gosh Belinda, I am right there with you. I think lots of us (maybe exclusively us women, but I’m not sure), are in the same boat with this, thats why its so chronic and difficult to explain and treat. After Covid I also tested positive for the POTS tests, but cardiologist said I should be suffering for 6 months with those symptoms to qualify for a diagnosis! The treatment is basically the opposite than for migraine: eg massively up salt intake. I’m dying to find out how all these conditions fit together, but they’re often found together (in women). I think I may have asked you before if you’re bendy/ hyper mobile - another risk factor. So weird.

I am really really into the idea of cold showers. For a while I gave it a go, but it felt like too much - my symptoms flared too much each time. Made me feel exhausted. But there’s so much written about the benefits when it comes to autoimmune issues (Dr Terry Wahls takes ice baths!) if you give it a go, I’ll be so curious about how you get on. Perhaps it needs to be VERY slow and steady and gradual