Two Daughters Presenting With Pots Symptoms..could This Be Genetic?

[Science girl]

In the last three months my eldest daughter, now 15 years old, has had POTS symptoms. It was sudden and I thought she had the flu but when she returned to school, they rang as she has fainted. Oh no that sounded not so good! I took her pulse lying and standing and her heart rate was jumping from 80 to 120. In a month she attended school for maybe only five whole days, the rest were at home, at the dr appointments or I had to go pick her up. She's waiting for a tilt test. As a mum with POTS I'm trying all my tricks...salt, coffee, she got permission to use the elevator at school and put her feet up in class. The school have put up a bed for her outside the directors office so she can lye down when needed...they have been great.

Then a few weeks ago my youngest, 13 years old, broke down in tears as she was too tired to help around the house and said she couldn't breath. We listened to her lungs (hubby is a nurse) and found she had a heart arrhythmia! We all ended up in tears from the overwhelming thought of us all being sick! (Turned out to be a lovely bonding family time as we ate comfort food and snuggled in front of the ironman series! Silver linings!). The arrhythmia comes and goes so we must go to the hospital when it's happening. But she does seem to have a jump in her heart rate when she really exhausted but not as high as 40 beats/min. No other symptoms and is mostly functional for now.

Does anybody else have kids with POTS as well as themselves? Have they found a genetic cause? We have a ray of problems associated with EDS and some hypermobility but haven't been tested for this.

Any advice on how to cope supporting sick kids when being sick yourself, would be great. I haven't had a whole week crash (it was down to just a few days) for over a year but the last month I've crash 3 out of 4 weeks. My oldest was an amazing help with washing, and cleaning but now can't do much so it up to me. And I'm needing to drive her everywhere which I find hard.

[Nymph]

I would guess that it's probably related to EDS. My mom, sister and I all have some EDS symptoms. My mom has low bp and has fainted with that. She has also had life-long IBS. My sister has NCS, but has only fainted 2-3 times and seems to be ok now. I am the only one with POTS, and mine is on the mild side.

[DizzyGirls]

Ahh, hours in front of the Iron Man series! We love it too! Something my two POTSie daughters enjoy! My two daughters (19 and 17) have not only POTS, but Dysautonomia (where it affects the entire autonomic nervous system) as well as EDS III (my husband and I both are probabilities also). It's rough. My daughter's primary symptom is vertigo. It's been a month today since we were at Stanford University, saw the autonomic doctor, got the EDS and POTS diagnoses and had the TTT and some valsalva testing. It's been a rough year, over 100 doctor's appointments. We know how you feel. My daughters don't drive due to the vertigo and the meds they take. I'm the primary caregiver and I've been showing more signs as of late, my husband brings home the paycheck and is our resident chaeuffer to places I don't feel comfortable driving. This group has really given me hope that eventually we will stumble on to the right meds and get this under control. There are so many knowledgeable people here. Sort of like a big brainstorming group of people that all have similar things that no doctor has ever heard of, so we have to educate them so that we can get some help. My girls are on Florinef and Verapamil to try to help the Dysautonomia, but so far it's not doing much. They are on other meds too, to help control vertigo. Hang in there!

[Science girl]

Thanks Dizzygirls (cute name) for your encouragement

I think EDS is a good candidate. I have hip and shoulder mobility and a long list of the complications...it might be the thing that ties it all together. Only thing is I wrote it off as I don't have any the skin issues of stretching and scaring. However, my girls look like they do which is weird. I've always considered myself the less flexible than my husband and girls (all three) as they do crazy things with there fingers and thumbs .... They even hassle me that I cant!

Interesting that you think both your husband and yourself may have past on the EDS. Maybe it's the same for us? It's strange to the of all the people to marry, finding someone else with this genetic disorder!

I really appreciate this forum too!

[thewayiam]

I am interested about the genetic component as well.  My mom is deceased, but I recently learned from her best friend she suffered all of the same symptoms as me and was dizzy. She also had years of IBS problems. I believe she had POTS like me. I don't think I have any EDS symptoms and neither did my mom... Hmm. 

[Kaitlyn]

My neuro (mayo trained) explained it to me this way regarding family connections. Dysautonomia is the umbrella under which many different dysregulations fall under for example POTS, OH, Gastroparesis and even things like rheumatoid arthritis, endometriosis and Graves' disease. I am paraphrasing. But this was the general idea as I understood her. It helped me make lots of connections throughout my family. 

[OkamiLuna]

I think that it may have some form of genetic component. I have a severe form of POTS, and my 1st cousin on my mother's side has POTS. While my mother has a genetically inherited neurological disorder as well, Charcot-Marie-Tooth, and we believe that our grandmother has POTS, she has all the same symptoms we do but refuses to go to the doctor about it. 

Though without any clinical study as proof, we can't say it's genetic, but seeing as my cousin and I both have it are our sharing side of the family is riddled with neurological disorders it might be possible.