POTS treatment with Octreotide

[pattismith]

I don't have POTS, but read this article about an interesting treatment for severe patients.(free access)

Treatment of Refractory Postural Tachycardia Syndrome with Subcutaneous Octreotide Delivered Using an Insulin Pump
Muhammad Khan,1 Jing Ouyang,1 Karen Perkins,1 John Somauroo,2 and Franklin Joseph1
1Department of Diabetes & Endocrinology, Countess of Chester Hospital NHS Foundation Trust, Chester CH2 1UL, UK
2Department of Cardiology, Countess of Chester Hospital NHS Foundation Trust, Chester CH2 1UL, UK



Copyright © 2015 Muhammad Khan et al. This is an open access article distributed under the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited.
Abstract
Postural Tachycardia Syndrome (PoTS) represents a disorder of the autonomic nervous system that results in symptoms of orthostatic intolerance. Despite having a severe impact on the patient’s quality of life, the current treatment options for PoTS are based on limited evidence. Subsequently, this results in clinicians having to utilise a variety of treatment regimens in the hope of successfully providing symptomatic relief. However, the options available for PoTS are not without significant side effects that can worsen an already debilitating condition. Our cases provide a further novel treatment option for clinicians to consider in PoTS refractory to established treatments.

 

[kisekishiawase]

Is this for hyperadrenergic pots?

 

[bombsh3ll]

I tried it and it didn't help me personally. It was just like very expensive, injected midodrine with diarrhoea.

B xxx

 

[pattismith]

I tried it and it didn't help me personally. It was just like very expensive, injected midodrine with diarrhoea.

B xxx

yes, but I guess you didn't have the insulin pump, this is how this treatment differs and prevents side effects.
Of course, it is not a treatment targeting the root of the POTS, it's just a symptomatic treatment.

 

[bombsh3ll]

yes, but I guess you didn't have the insulin pump, this is how this treatment differs and prevents side effects.
Of course, it is not a treatment targeting the root of the POTS, it's just a symptomatic treatment.

I think if it was going to be effective, it would have helped as an injection. I would have gladly put up with the side effects if it had helped me. The people on the insulin pumps seemed to have benefited from standard dosing in the first place & got pumps because of side effects, that's what's different.

What do you think the root cause of POTS is?

B xxx

 

[pattismith]

What do you think the root cause of POTS is?

B xxx

I don't know, I don't suffer from orthostatic problem, so didn't investigate it much, but it seems that brainstem or cervical cord injuries could be the root problem.

 

[bombsh3ll]

I don't know, I don't suffer from orthostatic problem, so didn't investigate it much, but it seems that brainstem or cervical cord injuries could be the root problem.

That is what I am actually investigating right now! Dr Gilete has diagnosed me with cranial settling. Whilst I am not sure that surgery will cure me, I really believe the brainstem is implicated!

I do have a diagnosis of hEDS (acquired since illness onset), but I don't buy the stretchy veins theory. I have had the same veins all my life, they wouldn't have all suddenly become stretchy on one day, plus I haven't a single varicose vein despite 3 pregnancies. The brainstem however can be compressed either suddenly or gradually, if something shifts.

B xxx