PoTS subtype underlying root cause?

[Looking_for_light]

 

What conditions etc have people here identified as the underlying causation of their H POTS? 

A consequence of genetics, hypermobility,  autoimmunity, another chronic condition etc? 

 

Is H PoTS often classed as secondary or more as primary PoTS? 

 

Thanks! 

[Pistol]

@Looking_for_light for me HPOTS runs in three generations of females in my family  mother, two sisters, a cousin and six nieces all have it in various degrees of severity. I had symptoms all of my life but I became extremely sick with it after the birth of my daughter when I was 37. I have been disabled now for eight years. My mother and two older sisters also had problems all of their life but did not become disabled by them until menopause. The younger women ( 34 through 20 ) all have symptoms and all have had problems from the symptoms but are all yet able to compensate for them. 

In addition to the characteristic high BP and adrenaline rushes we all have tremors, brain fog, attention deficit, cold hands and feet, GI problems, vision problems, some have syncope and I have frequent syncope and seizures added to the mix. If you are interested you can read my story here 

I am so sorry that you are suffering from this and wish you all the best. Living with a little known chronic and often disabling condition is scary, frustrating and quality-of-life altering but I can assure you that we CAN live despite this condition. Hang in there, research for yourself, find physicians who take you serious and are willing to work with you in finding a treatment that is right for YOU. And hopefully you can find some help and comfort in this forum, we all are in the same boat here and we all understand the struggles. Be well!

[Looking_for_light]

 

Thank you so much! All your replies are very appreciated. 

It was a privilege to read your story. 

Are you or your family hypermobile? 

What is the specific gene issue with H P (it won't be tested for here regardless!)? Have any of you been tested for the specific gene issue? 

Do you think sex hormones / hormonal changes have a role in onset / exacerbation of H P?   

So much on it all to know! 

A huge concern is mcas impeding med options, (which are extremely limited over here anyway)! That, H P and other serious conditions together is inevitably an absolute disaster! 

What was your experience of clonidine? Was it in patch form? 

We would give anything to have the input of Dr Grubb! 

Have your symptoms been progressively worse since they came on severely? 

We're under severe stress and strain due to it all, made even worse as things are dire in every possible way here! 

Thanks again. 

[Pistol]

11 hours ago, Looking_for_light said:

Are you or your family hypermobile? 

Me and one of my sister have mild hypermobility.

 

11 hours ago, Looking_for_light said:

Have any of you been tested for the specific gene issue? 

Unfortunately not.

 

11 hours ago, Looking_for_light said:

Do you think sex hormones / hormonal changes have a role in onset / exacerbation of H P?  

Apparently so, since I got sick after giving birth and others in my family became severely symptomatic around menopause

 

11 hours ago, Looking_for_light said:

What was your experience of clonidine?

I could not tolerate clonidine, it was the pill form and it was horrible ( just my experience, it can be very helpful for Others )