Please Help New Patient-21yo: Family Looking For Your Input

[MightyMouse]

I am posting this for someone who needs your help and suggestions:

I am sending my e-mail to you since I am not currently on my home

computer but wanted to contact someone who might be able to help right

away. My 21-yr-old athlete son has just been diagnosed with

dysautonomia...he is in great shape with football workouts but passed out

on the field and had several days since where he felt as though he was

going to so that's why we had him checked out in the first place. He

normally has low blood pressure and the doctor who diagnosed him put

him on Pindolol...a beta blocker. Our concerns are several about this...if he

has low blood pressure why would he be put on this medication that will

take it even lower. Also, if his heart rate bottomed out during the tilt test

after the sodium nitrate was administered why would he need to bring the

blood pressure down further? The other thing we are quite concerned

about are the side effects of this drug/beta blocker and whether or not our

son will have to stay on this medication the rest of his life. We are trying

to get in to see a doctor that can help us with our concerns but meanwhile

we are supposed to start him on this medication that we are not sure of.

If you could help with any comments or info we would be very grateful.

[Guest tearose]

You really need a top notch cardiologist and a doctor knowledgeable POTS doctor who will help your son through these next weeks.

You do have good questions that need addressing. You should feel comfortable going back to the doctor with your concerns. Actuallly, your son should call.

I sure hope he is not playing football or exercising hard right now.

I suggest he call in the morning and follow up with his prescribing doctor.

Hang in there, we always are upset when our children (even grown ones) are facing a health challenge.

I hope this is a condition that is one he will get over fast or at least he will be able to manage.

best regards,

tearose

[CarolynCRNP]

I think they need to talk more to the doctor that prescribed the medication. However, Pindolol is actually is not a bad choice for someone with low blood pressure. Pindolol is not that effective for people with high blood pressure. It can decrease the heart rate without decreasing the blood pressure as much as the other beta blockers.

I just switched recently from atenolol to pindolol. I had been taking 25mg atenolol once a day and wanted to increase it but going up to even 37.5 mg/day dropped my blood pressure to the 60s-70s/30s. I am now taking Pindolol 5 mg BID and my blood pressure has been fine. (The mg doses of Atenolol and Pindolol are not the same - 25mg of atenolol is not the same as 25mg Pindolol. In fact, pindolol only comes in 5mg and 10mg while you can get 100mg doses of Atenolol).

[pat57]

it sounds like neurocardiogenic syncope. what happens is an over reaction to raised bp. The brain considers the raise life threatening and drops the heart rate fast and low. This is a normal mechanisim- gone wrong. It might be that the med governs the rise in heart rate so that the brain accepts it.

I have NCS but did not look up any info on that med- so guessing.

[Rachel]

Hello,

I'm sorry to hear your son has been diagnosed with dysautonomia. I hope he can find a good doctor and a helpful treatment plan.

Many people with POTS also have low blood pressure and are able to tolerate a low dose beta blocker. This can lower the heart rate enough to help with POTS symptoms without lowering blood pressure too much. However, it doesn't sound like your son has POTS (Postural Orthostatic Tachycardia Syndrome). It sounds like he might have NCS (Neurocardiogenic Syncope).

Someone with POTS has a rise of heart rate of 30bpm or more within the first 10 minutes of standing up. That's why a beta blocker can be helpful. But if your son has a heart rate that is dropping too low (bradycardia), then a beta blocker would be contraindicated. RxList says this about Pindolol: "Visken ? (pindolol) is contraindicated in....severe bradycardia."

If it were me, and my heart rate was going so low, I would not take a beta blocker. I think you are wise to think this through. I suggest finding a good cardiologist who is familiar with dysautonomia and it's treatment. You can check the physician's list on the main DINET site to see if there is a recommended doctor in your area.

Rachel

[bjt22]

Beta blockers have been considered part of "standard care" for NCS/POTS. Like all other drugs, sometimes they are helpful, sometimes they aren't. The thought with NCS is that a beta blocker can attenuate the response that leads to a syncopal episode. How often it actually works this way is up for debate.

I take a beta blocker, but I'm POTS/autonomic neuropathy. Even with very low blood pressure, I feel better with the beta blocker than I do without. Ofcourse, the beta blocker helps keep my heart rate and rhythm in line, but it also keeps my blood pressure steady, even if it is on the very low side. Steady low blood pressure feels better for me than a blood pressure that is moving around all over the place.

If her son wants to continue with his athletic pursuits, I would be very careful with a beta blocker, however. They can cause individuals to have a difficult time raising their heart rates while exercising.

[corina]

while having low bp most of my life i am on a 200mg/24h beta blocker. i have even been on 300 mg but thought of decreasing as i was so very tired. when i decrease more of the bb i start having terrible heartracing while seated not to mention while standing. the bb is meant to stop my heart from racing to and over 200, my doc told me that if i wouldn't take them i could get damage to my heartmuscle, possibly leading to a heartattague. i wouldn't want to risk that!!!

hope things will work out for the son and his parents.

corina

[Maxine]

It looks like everyone has offered some great advice---- A really good autonomic nervous system doctor, or a cardiologist with good knowledge of the ANS is a good place to start. Sometimes young people get this secondary to a viral infection, and usually get better with time.

I'm on propranolol/generic inderol, and I also have very low BPs, but they still swing high at times. I don't think the beta blockers affect my BPs, because I have been on them for almost 20 years, as I have had tachycardia spells since my 20s----probably before that. In 2000 I crashed really hard with POTS and my BPs were 150/90 on the BBs. I'd hate to see what it was off them. After the initial crash, my BPs can get as low as 70/something. I feel much worse when the BPs swing high. Not that really low BPs are good, but when they are really high, I'm propbably crashing. I think dysfunction of the ANS can cause unstable BPs either way-----high, or low.

I hope things turn out well for your son.

Take Care---

Maxine :0)