Pots With High Baseline Heart Rate

[andreak]

My daughter is 20 and was diagnosed with POTS three years ago

She has had autonomic tests in London and we have chased up an appointment to discuss these as she is really struggling at the moment

The Autonomic Unit at RHNN explained there may be medication she can have to help but I was wondering what we should expect given that she has a very high baseline heart rate during the day which never usually drops below 100bpm linked to generally raised BP on the very upper limit of normal when resting. When exercising gently this may increase to 210bpm within a minute or so.

From what I understand midodrine decreases BP by reducing HR, SSRIS such as sertraline can increase tachycardia, fludrocortisone is steroidal and she worries about weight gain with this

That leaves beta blockers and she has previously tried propranolol albeit at a low dosage with no success.

The only other thing is Clonidine which reduces heart rate but in reducing HR would this increase BP ?

I was wondering if anyone else has a high baseline heart rate and blood pressure and what, if anything, you have found helpful

As the hospital is 200 miles from home its not easy for them to monitor and change dosage levels so I was wondering how the medications are managed and how the hospital will arrive at the suitable dosage and monitor its effectiveness

As the appointment is liekly to be very brief I feel it best if we can go armed with as much information and advice as possible

Thanks

Andrea

[PotSieMelissa]

Midodrine increases bp and the beta blocker is meant to reduce heat rate, but it also decreases bp. Fludrocortisone also increases bp and can increase weight but doesn't with everyone.

[bellgirl]

She sounds like she has similar issues as my self. I had increased B/P and heart rate before medications and diagnosis 3 and a half years ago. They never considered putting me on midodrine, because it increases B/P. Clonidine, however, stopped adrenaline surges with me and decrease my B/P. I've never been on a SSRI, or SSNI, because it stops seritonin, which is needed for sleep and digestion, and I have trouble with both of those. I'm on a very small dose of the Fludrocortisone, because it can cause increased B/P, but it has been a lifesaver for me, in that, it has balanced the fluid and electrolytes in my body, which I've needed desperately, because of chronic dehydration and hypovolemia. It caused me to gain about 5 pounds, which was helpful for me, since I was loosing weight rapidly. If she has only tried one beta blocker, she should consider other options. I'm on Bystolic, and since the half life of the medication is 12 hours it lasts longer. Everyone is different, and all doctors have different approaches, but if they are Autonomic Specialists, I'm surprised they haven't tried her on other medications by now. I live 2 hours away from my doctors and I can call the nurse at anytime with any questions I may have regarding my health or medications and she will talk to the doctor about them. You should have that line of communication open.

[CoCoNutNut]

When I was was first diagnosed with POTS about 7-8 years ago, I had LOW blood pressure with tachycardia (I also have low blood volume), and was put on Midodrine 3 times a day. It helped raise blood pressure and lessened some symptoms. I eventually weaned off Midodrine and was mostly symptom free for a while but recently my POTS came back. This time I had HIGH blood pressure with tachycardia. My cardiologist could not put me on Midodrine since it raises blood pressure. I was put on a beta blocker (Metoprolol extended release), and it has helped with both tachycardia and lowering my blood pressure. I was nervous about taking the beta blocker, and it took some getting used to, (I started off taking half the pill for the first 4 days, then took the full dose (25mg), and it helped a lot.

I hope your daughters doctor will find the right medication & dosing, it may take trying a few different ones, since everyones bodies are different and adjusts/reacts to medication differently.