Upcoming appointment

[Bailee]

I have an appointment on January 17th. I just wanted some guidance on what to ask ? Or if others have had similar experiences? My doctors have been saying deconditioning for a year, despite being on a cardiac plan and meds. I’m a year into my diagnosis and q year on treatment/ medication. They told me in June that they couldn’t give me answers as to why I’m deconditioned or how long typical deconditioning last. My most prominent and life altering symptom is my lightheadedness/orthostatic intolerance. When I’m out with family or even cooking at home I don’t have the stamina to do daily activities despite being on midodrine 5mg 3 x a day, ivabradine 1.5 mg a day, salt 8 grams a day, compression socks, and leg strengthening exercises. I’ve tried metoprolol which decreases my blood pressure to much. The midodrine helps with energy but I still feel awful even when my blood pressure is normal (I’ve been keeping track). My QSART was abnormal but biopsy said no small fiber neuropathy. I’m just at a standstill as I’ve tried most of the meds they can give me at the clinic so I’m worried there’s nothing they can do .

[Pistol]

@Bailee who is the appointment with - a new provider? Either way I think tell them exactly what you have written here, that pretty much sums things up. I am aware that many doctors pin all symptoms we have on deconditioning, mostly because many of us ARE quite inactive, even on a better day. I remember that you exercise every day on a treadmill? That and the fact that you do the leg exercises should be enough to avoid true deconditioning. I would explain that you experience orthostatic intolerance and fatigue/ low energy that are affecting your quality of life, despite the exercise and treatments you are doing. I would also point out that Metoprolol was not working for you, maybe a different beta blocker would be better for you. Many of us had to try several BB before we found the right one, And remember to make sure to try the lowest dose and increase slowly to tolerance, that is very important in dysautonomia. 

I know several dysautonomia patients that mostly suffer from fatigue and brain fog - their doctors prescribed Modafinil and it is known to help patients. Here are two articles that mention this: 

Modafinil and Cognitive Function in POTS - Full Text View - ClinicalTrials.gov

Postural Tachycardia Syndrome (POTS) | Circulation (ahajournals.org)

I also was prescribed Modafinil by my autonomic specialist but it was not covered by my insurance, so I take Ritalin instead, and it helps me quite a lot with energy. You could always ask your provider about their thoughts about this medication. 

Hopefully the appointment will be fruitful! Make a list of questions, starting with the most important ones. Good Luck!

[MomtoGiuliana]

I think what Pistol already provided is super helpful.  We do have this resource as well.

 

 

[Sarah Tee]

@Bailee, I found these two resources helpful to see whether there was anything else for me to try:

Lecture by Satish Raj on POTS medications:

https://vimeo.com/486427306

List here of just about everything that has been tried for POTS:

I wonder if your specialist would try you on IV saline given that you are still struggling despite your best efforts. Some doctors view it as a good bridging therapy to get people more active and allow them rebuild their strength and stamina, then slowly reduce the infusions, hopefully leaving them in a better place.

Other doctors are concerned about the risks of having infusions and the complications of access for regular use.

One more thought – you mentioned compression socks. Have you tried compression that covers the abdomen, e.g. tights, leggings or bike short style?

I too have been working through a long list of interventions and medications and trying to exercise at night (when I often feel better). It is very hard when nothing really seems to be working.