Hyper Pots Patients And What Drugs Do You Take For Tachycardia?

[kitt]

Hi all,

Am wondering who here with Hyperadrenergic pots has tried Clonidine and/or what meds you're taking for your tachycardia?

I just finished a trial with Clonidine and had a bad and odd reaction. Worst was with the extreme high tachy episodes while sleeping and sitting, (not related to postural changes.) So I'm done with Clonidine, but had very high hopes for it.

I had asked about Mestinon in another post, but am interested in any/all prescription medications hyper pots patients are taking.

Thanks for your help with this. Am seeing my cardiologist next week. He's knowledgeable about all kinds of dysautonomia and is open to suggestions.

I'd like to share some options with him to get my heart rate down, because this is a cardiologist who is very keen to start me on cardio therapy, and I'm wanting to start cardio therapy, but suspect he won't agree until we get my heart rate down!

Any ideas or thoughts would be appreciated.

Thanks! Hope everybody has a good day tomorrow.

[Katybug]

I used Meteprolol for quite a while and it did help my yacht but we finally figured out that's what was making my breathing worse once I was dx'ed with MCAD. Now I'm on Verapamil (still very low dose) and it seems to be helping. Im not where I'd like to be but we may need to play with my dose. I haven't had any side effects from the Verapamil (at least that I can identify ...I didn't think I was having any from the beta blocker until I stopped taking it.)

[Altruism]

My question too! I've only tried Metoprolol so far and it did NOTHING. Propranolol is next.

[arizona girl]

Hi, Dr. Grubb prescribed me labetalol as I swing from high to low. I'm hype confirmed by high cats with a norepi that almost tripled on standing. It seems to work for me. It is very low dose and I don't take it as much anyone more as my symptoms are improving because we are treating my underlying causes.

If you google Dr. Grubb and labetalol, one of grubb's abstracts with the meds he likes to treat with should pop up.

[kitt]

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[arizona girl]

Hi kitt, Actually it is an alpha/beta and I have norepi of 1200 on standing. I take such a baby dose of it I have not noticed any problems with it. I haven't though looked at mcas, and wondered about that myself. I also had problems both with atenenol and propananol. The first stayed to long and I was waking with hypotension. Propan didn't control the rises and a higher dose caused rapid weight gain.

A friend of mine who has a genetic dysautonomia has recently been put on a calcium channel blocker, I forget the name, but it seems to be working for her. She went to a kidney doctor and I am going to see him as well. I let you know what it is when I find out.

[Katybug]

Kitt,

You might want to keep Verapamil in your list of options now that you've given more details. I have MCAD too and that's why I had to stop the bb's. I actually tend to be on the low BP side of things but the Verapamil has not made my BP bottom out (I am hyperpots even though low BP.) The upside is if you do have a higher BP it may also lower your BP in addition to your heart rate

It wasn't a first choice originally but with the MCAD diagnosis we had no choice but to try other things and I wanted to try the safest, least addictive options first. It took about a month before I felt like it was helping my yacht but it is now and with some adjustment to my dose, I am hopeful.

[kitt]

Katy, it's great that Verapmil is helping you. Am glad you found something. I researched it, and it has side affects that I already have with pots, particularly the flushing dizziness, lightheadedness, fatigue and nausea.

Some possible side effects of the drug are headaches, facial flushing, dizziness, lightheadedness, swelling, increased urination, fatigue, nausea,ecchymosis, galactorrhea, and constipation.^[9][10]

And then it mentions this about calcium channel blockers: This has led to their use in treating hypertension and angina pectoris.

I'm hypotensive, and you say you are too. Am confused. Here's the article. http://en.wikipedia.org/wiki/Verapamil

Am really glad it's helping you! To be honest, I've finally begun to wonder if any drug is going to help me. Tried 2 bb's and Clonidine and ugh, they were all pretty awful.

Seems like a lot of us are hyper sensitive to medications.

Arizona Girl, Thanks for the information about Labatalol. Not sure how I'd respond to the alpha/beta combo, But something to keep in mind.

I just found this from a website that quotes Dr. Grubb on this subject. Pasting below:

In the hyperadrenergic form of POTS, patients often respond best to agents that block norepinephrine or its effects. One agent that is particularly helpful is clonidine HCI in either pill or patch form. We start the oral form at 0.1 mg PO 1 to 2 times a day and filtrate upward. The patch form of clonidine is quite useful because it provides a constant and continuous amount of the drug for up to 1 week at a time. The combined and β blocking drugs labetalol and carvedilol are quite useful in some patients as pure β-blockers may exacerbate symptoms (because of unopposed receptor stimulation). Methyldopa has been reported to be useful in some patients, as has phenobarbital. In addition, both the SSRIs and norepinephrine reuptake inhibitors are useful in select patients.

I just researched Methyldopa, and wow...No thank. Too many side affects.

Am wondering if any hyper pots people just do without meds for tachy and BP due to meds making things worse?

[Altruism]

My doctor thinks I have hyperPOTS and suggests trying Propranolol. I'm surprised it's not mentioned anywhere on this thread. Isn't it a good one for hyper Potsies?

[kitt]

.

[Altruism]

Right.. My genetic counselor said I don't, cause it usually has skin involvement? Hm. We'll see.I'll give it a try.

[Katybug]

kitt,

I know...I was confused about the Verapamil too. I wasn't afraid to use it now because before we knew about POTS, I had a neuro a few years ago try it for my migraines and I did ok on it. Hypotension is a potential side effect but, like all side effects, you may not experience it. We just monitored my BP closely the first few weeks and will be monitoring closely if we increase my dosage. As, far as the other side effects, I totally get your concern because they are the same symptoms I have too. But, it seems like every drug I'm on or the docs have wanted to try all have the same ugly list of potential side effects. I have made jokes about "How would I know the difference between dizzy from POTS vs. dizzy from (fill in the medicine)?"

[Kellysavedbygrace]

Kitt, Dr. Biaggioni has mentioned Methyldopa to me while I've been here. It is an older drug that works is similar to Clonidine but he recommends it over Clonidine for me. I know our cases have some similarities. I'll get more info about it from him when I meet with him at the end of my stay here at Vandy and circle back with you.

[kitt]

Thanks Kelly,

I'm following your thread and hope you're doing well at Vandy...In my experience the more I give the more I get, so feel certain this visit is going to be/has been amazing for you!

You and I are both hypotensive, and I'd be very interested in hearing more about what you learn about Methyldopa! Are you planning on starting it while there, or shortly thereafter?

What does Dr. Biaggioni have to say about Verapamil, if anything?

Are you still taking Verapamil, or did you just start?

Am really happy for you having this extraordinary experience at Vandy!

Soak it up and thanks for sharing.

[peregrine]

Currently on clonidine (my wonder drug!) and atenolol (and Ritalin, but that's not for the tachycardia). I don't have issues with betas - no obvious mast cell issues for me despite the hypermobility issues. You might think about a calcium channel blocker as others have mentioned; I took diltiazem (Cardizem) for several months but found it wasn't for me (edema, lack of effectiveness against other issues but it did remove the tachycardia).

If other folks are thinking about beta blockers, keep in mind they come in different "flavors":

(1) Where does it target?

selective (beta-1 receptor targeting only): atenolol, bisoprolol, metoprolol, etc. Little to no effect on breathing so safer for folks with asthma etc, though still not totally safe!.

non-selective (beta-1 and beta-2 targeting): propranolol, nadolol, Eucommia bark, etc. Hit the lungs too - safe if you don't have breathing issues, less safe with asthma etc.

(2) Does it go into your brain or not?

lipophilic/crosses the blood-brain barrier (so has effects in the brain): propranolol, metoprolol etc. Can have more side effects affecting the brain like insomnia, nightmares, worsening of depression, etc.

hydrophilic/does not cross into the brain: atenolol, nadolol, bisoprolol, etc. Little to no effect on sleep, etc, though perhaps still less safe for folks with mood disorders.

(3) Does it block other things too?

Carvedilol and labetalol block both beta receptors and alpha receptors, but I don't know if they are selective/nonselective and lipophilic/hydrophilic.

You might consider whether a given beta blocker your doctor suggests/you are interested in fits these categories - e.g. if you already have insomnia and asthma, you might want to try atenolol; if you have migraines and no asthma, propranolol might be a better choice since it might help the migraines too. (nb - I am not at all trying to imply that folks should be taking betas, especially folks with a history of MCAS etc; mostly just that not all betas are the same and it's nice to know why you are taking a given one over another.)

I was originally prescribed propranolol for its central nervous system effects - my ANS neurologist suggested that its targeting the hypothalamus might ease some of my overall issues, but it didn't end up doing anything special and the breathing got to be an issue. I haven't had any central nervous system side effects from the propranolol, but atenolol is overall better for me.

[POTLUCK]

http://www.stars-us.org/files/file/Clinical%20papers/110912-Hyper-POTS%20Proof%20copy.pdf

[bebe127]

How does one actually get diagnosed with Hyper POTS. I've been to two EP's and neither suggested this or suggested further testing. I am currently getting treated by my GP that has a few other patients with POTS, but is certainly no specialist. I will hopefully be going to a new EP in the spring. Do I ask him about this and what testing needs to be done, or do I have to go to a place like Mayo or Vandy (which would probably not be a likely senario for me)?

[bebe127]

How does one find out their norepinephrine levels? Is this done by blood? I'm so confused! It doesn't help that I still (after 3+ years) have yet to find any doctors in my area with an iota of information about POTS other than what this website has to offer, of which I am so grateful for!! I just get frustrated because I still have no idea as to the 5 w's of my condition.

Do you all research on your own, print any info and take it into your Dr.? Does he/she actually read it??

[joyagh]

I am on metoprolol, Zoloft and Klonopin if needed. BB's work well for me - 80% better with them. I also am taking DHEA to reduce cortisol production, and phosphatidyserine (Seriphos) for the ANS. I also take acetylcholine to help the synapses in the para-sympathetic NS. I'm wondering about a Nor-epi inhibitor.

[joyagh]

How does one actually get diagnosed with Hyper POTS. I've been to two EP's and neither suggested this or suggested further testing. I am currently getting treated by my GP that has a few other patients with POTS, but is certainly no specialist. I will hopefully be going to a new EP in the spring. Do I ask him about this and what testing needs to be done, or do I have to go to a place like Mayo or Vandy (which would probably not be a likely senario for me)?

my EP sent me to an endocrinologist to rule out primary endo pathology. I think (hope) they will run all the hyper tests - epi, nor-epi, standing plasma and 24 hour urine levels. This should be enough to rule out adrenal tumors and DX hyper-POTS, I think. I'm not looking forward to stopping my meds to get accurate test results, though. Try to get an endocrinology referral.