Dysautonomia In Siblings?

[Tzipora]

Hey everyone,

I haven't been round in a few months and was a newbie then anyway. I have a whole lot of stuff going on with my health. But I'm back tonight, despite my heavy fatigue because I'm really wondering about something.

I'm 22 (well, I will be in a few weeks) and just got diagnosed with POTS/ Dysautonomia about 6 months ago though I've had a sinus tachycardia diagnosis for a few years now. And I've got a zillion other issues, primarily very severe digestive stuff.

I have a younger brother who is 18, almost 19. He's started having severe headaches that are really scaring him. He just saw his PCP and found out he ha high blood pressure (as in he was running about 159/87!). Out of curiosity I asked him his heart rate and it's in the 50's, so the upper end of brady range. I hope I didn't totally scare him since I know he's absolutely terrified of ending up anywhere near as sick as I am. And unfortunately where he lives, his doctors will never figure out if it' Dysautonomia anyway. For that matter the University of Michigan diagnosed me but are clueless on treating me so I'm trying to get into the Cleveland Clinic... but I digress!

So my brother has considerable hypertension, bradycardia, severe headaches, and stated he has palpitations sometimes. I realize it could be a lot of other things too but I'm kind of fascinated because the vast majority of my own health issues have the possibility of being genetic yet no one else in my family has any of the diagnosises I have...

I know there's obviously possible genetic links with Dysautonomia and know that a number of you also have siblings with it. I'm curious though, what are the chances of siblings having different kinds of Dysautonomia and very different symptoms? Because my brother's symptoms are like the exact opposite of mine (minus the severe headaches and palpitations, story of my life too) but I have a lot of problems with low blood pressure (I'm always below 90/60) and I have tachycardia. Like I said, I realize my brother's issue could be something else entirely but given that he's my brother and I have Dysautonomia, seems like it might be worth considering that he does also. But is it common for siblings to present in entirely different ways? Also, because I'm personally very severe and extremely disabled by my health issues, even if my brother does have Dysautonomia, there's still a good chance his will never get bad like mine, I hope, right?

I'm just really wondering and wanted to come on here and chat about it because as it is, I know my brother is terrified. He's always been the healthy one. But my issues first started when I was about the same age he is now too...

So anyway, just wondering about all of this. Any thoughts?

[Chaos]

I have asked several POTS docs about this. One said there had been no studies on it and she wouldn't comment on it at all. Another said it was not uncommon to find close family members with similar symptoms but that it was all anecdotal at this point.

I have a couple of my siblings (all older) who have some symtoms like mine but they're not as sick. I have 4 kids and 3 of them show some symptoms that worry me but haven't been diagnosed as anything.

Sorry to hear you've been feeling so poorly. I'm sure your brother is freaked by his symptoms. Usually most docs won't diagnose hypertension based on one exam. They usually want to see a pattern. Is your brother checking his BP at home? He might have "white coat syndrome" where a person's BP goes high but only at the doctor's office. One of my son's had a really high reading at his physical, but he'd also been up all night studying and drinking red bull. When we checked it repeatedly at home, it was usually fine.

Two of my kids had surgeries in their middle teen years and I was surprised on the heart monitors that both of them had HR in the low 50's and high 40's. The docs weren't at all concerned and said they were just "fit" and young.

Good that your brother is getting things checked out but I wouldn't worry TOO much about it. It's good that you know about the dysautonomia though so that if he continues to have problems he can let the docs know that there is a family history of it and you can help him with all the knowledge you have.

Sorry you've had to come back. I always hope when people are away from the forum for awhile it's because they're out having a great time and all better. We can wish anyway.

[Tzipora]

Chaos,

Thanks so much. The hypertension came as a surprise. It's these severe headaches that my brother has been so concerned about (they sound like migraines to me, something else I deal with) but they discovered his blood pressure was high. Honestly we were testing my mother's old blood pressure monitor months ago so I could have it and he was high then too. And he is checking it at home and he's still running very high... He's going for blood work in the morning. I should maybe also add that my mother has hypertension and is on medication for it. So who knows. In general I worry about him getting treated where he is because the doctors aren't to great. He and my parents still live in the same place where I grew up and I've had a lot of health issues my whole life but they never could figure me out. I have a lifelong history of GI issues yet growing up, no one ever had the brains to send me to a GI and I can't at all figure out why! So that's one of my concerns too. But I certainly hope he's okay.

Unfortuantely, I am very far from okay and very severely ill (as you can see from my signature). As I mentioned, unfortunately I've been away not because I was doing so well but because I was doing so poorly. I still am. Not even sure I'll be around here much in general. I'm very exhausted. I'm very anemic right now. Also dealing with low Magnesium and even low albumin levels despite being on parenteral nutrition and having been so for over 5 months. I can't eat at all. I also can't drive because of the Dysautonomia. And while my brother and I are growing close, my parents can't cope with my health and are not able to be there for me at all. But anyway, I don't want to throw my sobs tory out here, it's beside the point. It was all my GI issues that ultimately lead to my Dysautonomia diagnosis. But I do throw in my issues because I know my poor brother is probably so worried he's going to end up like me and I can absolutely understand that he'd be utterly terrified there! I would be too!

Anyway, I told him to keep me posted on things and I'll try to stick around here and all and will for sure be back when I hear more from my brother too. And thanks again!

[Chaos]

Sounds like it's a really good thing your brother is getting checked out then. Maybe the docs where he is will at least have enough sense/compassion to figure him out if you can help provide ideas for diagnosing him. Sad but true that so many of us have had to do this in order to get a correct diagnosis.

SO SO SO sorry to hear you're having such a horrible time with the GI and dysautonomia stuff. You're so young to have so many issues!!!

Sending you and your brother both lots of hugs!!!

[issie]

My sister and I both have autonomic issues. We are totally opposite. She has low bp's and I have high ones. She is diagnosised with OI and I have HyperPOTS. So, it is possible for siblings to both have autonomic issues yet present differently.

Issie

[Hannah_mariet13]

My older brother was diagnosed with Autonomic Neuropathy when he was a teenager. I have pots, and a couple years later my mom was diagnosed with POTS too, but much later onset. So i think there is very likely a genetic component in Dyautonomia.

[puppylove]

I thought my twin sister was fine, but for the past two months or so she has been exhausted- which was one of my first symptoms.

[MomtoGiuliana]

I have 3 sisters and one has been diagnosed with POTS. When she had symptoms they were similar to mine. However she is very mildly affected and never had any disabling symptoms as I have had.