Research related to using a wider variety of meds than just those for the heart

[Elizaangelica]

Sorry for two posts in a row…

I’m having trouble getting my cardiologist to think outside the box with my med direction, after having limited success with Ivabradine and beta blockers. The main issue is that even when my heart rate is more controlled, the other symptoms like fatigue and brain fog are not improved. I pushed to try Modafinil, which helped a little, but had to be discontinued for unrelated issues. I keep seeing a lot of people having positive effects from ADHD meds, but he is entirely dismissive when I’ve raised it and said that they’re not indicated at all for POTS.
 

I think he’s actually quite a good doctor, but knowledge of POTS is limited here. He’s responded well to articles before about potential medications, but I’m having trouble finding any (preferably peer-reviewed) research relating to using a wider variety of meds. Or else, at least acknowledging the relevance of treating symptoms beyond focusing on heart rate/blood pressure. In case it’s relevant I likely have HyperPOTS. Any direction greatly appreciated.

[MTRJ75]

Posted this in another thread the other day: 

https://www.sciencedirect.com/science/article/pii/S1566070221000588?fbclid=IwAR143FeT7sMs3VVmdMB-RrGwVkX-YIZnqnDaNZqlvpOlJL21SuGoE3mxR_E

But also, have you tried a neurologist. The cardiologist really only prescribes the heart rate modifying meds for me (along with sodium chloride tablets) with the neuro dealing with everything else. Of course, it's another challenge to find a neuro who understands the condition or is willing to learn too. 

[Pistol]

@Elizaangelica - I have HPOTS and have been taking Ritalin ( methylphenidate ) for years for fatigue and brain fog. My autonomic specialist prescribed it for me. Here is an article regarding use of methylphenidate for POTS :  Use of methylphenidate in the treatment of patients suffering from refractory postural tachycardia syndrome - PubMed (nih.gov)

[Nin]

Same with me. On beta blockers but all my others symptoms are there - fatigue, brain fog. It's the walking with me that's crippling me. I just can't walk far without everything going nuts. I got to keep sitting down and I just don't want to live like this. Walked from the car the other day to the school gates to pick up my children and my whole body started shaking so had to lie down in the hut (very embarrassed) everyone asking if I'm ok. Someone had to call my dad to come and get me.

[Sushi]

15 hours ago, Elizaangelica said:

I’m having trouble getting my cardiologist to think outside the box with my med direction,

About half of POTS patients seem to be responding to Mestinon and there is heart-related research to show why. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4860548/ He is working on a larger study. The primary researcher is a pulmonary and critical care doctor at Brigham and women’s in Boston and teaches at Harvard.

[p8d]

There’s this about immunoglobulin therapy https://sa1s3.patientpop.com/assets/docs/57649.pdf I have definitely benefited from SCIG with fatigue, malaise, brain fog, joint pain. 

[toomanyproblems]

I've been on immunoglobulin therapy off and on for nearly four years. Up until recently it was IVIg but because of covid I switched to subcutaneous Ig like p8d. It's very tough to get insurance to pay for it, but it's been the only thing that's helped my autoimmune problems. It doesn't help everything, but it makes most things much better.