Hyperadrenergic pots and midodrine...anyone on this medication?

[Nin]

Just wondering how midodrine works for anyone who has hyper pots? I'm a bit worried about what Medication I will be on as I'm sure I have hyper pots. I will be on ivabradine, midodrine and mestinon. I was told even thou they have sub types of pots it's all treated the same really. 

[Pistol]

@Nin - I have HPOTS and tried Midodrine ( amongst other POTS meds ) and it did not affect me negatively - it just did not help in my case. 

1 hour ago, Nin said:

I was told even thou they have sub types of pots it's all treated the same really. 

I personally have to disagree. Especially HPOTS requires different meds than some other, more common types of POTS. The reason for that is that most POTS symptoms are caused by excessive dilation of blood vessels, but in HPOTS we suffer from excessive CONSTRICTION. Therefore any vasoconstrictors ( frequently ordered for POTS ) are contraindicated and vasodilators help ( yet they are often contraindicated in other POTS types ). Also - often in POTS people have a low to normal BP, whereas in HPOTS the BP tends to run high - another reaon to be careful with simply treating all POTS the same. This has definitely been the case for me - I take high doses of several BP meds that would knock other people with POTS out, yet I have greatly improved on them. 

So, in other words - no, I do not agree. Treatment in POTS is highly individual, a lot of Hit-and-Miss. This is even documented in many, many articles dealing with the frustrations of POTS treatment. As with ALL illnesses - physicians need to treat the PERSON and the SYMPTOMS, not the name of the disease!!!!!

[Nin]

21 hours ago, Pistol said:

@Nin - I have HPOTS and tried Midodrine ( amongst other POTS meds ) and it did not affect me negatively - it just did not help in my case

So, in other words - no, I do not agree. Treatment in POTS is highly individual, a lot of Hit-and-Miss. This is even documented in many, many articles dealing with the frustrations of POTS treatment. As with ALL illnesses - physicians need to treat the PERSON and the SYMPTOMS, not the name of the disease!!!!!

Yes I agree with you there, you need to treat the person and the symptoms. I was kinda panicking because I thought with hyper pots it's vasodilation you need to combat and midodrine helps with vasconstriction. I'll try it at least as it's worth a try. How do you get tested for hyper pots? What type of doctor does this?

 

[Pistol]

2 hours ago, Nin said:

How do you get tested for hyper pots? What type of doctor does this?

@Nin - here is an exerpt from an article on HPOTS from our information resources page: 

Diagnosis
The criteria for diagnosis shares many factors with POTS; including the presence of symptoms for 6 months or longer, a Head-Up Tilt Table Test (HUTT) shows tachycardia of 30 BPM or above 120 BPM in the presence of orthostatic intolerance within the first 10 minutes of upright posture. Patients are diagnosed with the hyperadrenergic form of POTS based on an increase in their SBP ( the higher number ) of at least 10 mmHg upon standing or during the HUTT with concomitant tachycardia or serum norepinephrine levels of above 600 pg/ml when upright. (Grubb, et al, 2011)

An autonomic specialist ( usually cardiologist or neurologist with specific knowledge in dysautonomia ) can diagnose HPOTS.