What medications work best for you?

6

u/chemical_xy 1d ago

I take guanfacine for Hyper andrealin POTS. It stops adrenalin production. I was on propranolol with improvements for 6-9 months but it wasn't exactly what I needed.

2

u/rucan66 1d ago

My symptoms are hyper adrenergic pots. How is the guanfacine? Any side effects.

2

u/chemical_xy 1d ago

Side effects so far are only sleepiness but it gets easier to deal with every day. It helps me get a full 7 hours at night so I'm adjusting to that well. Some ppl get cotton mouth but I haven't. It has effected my appetite for sure though. I'm less snacky from the ADHD but that can make it a little harder to eat when I NEED to but that might be a me thing idk.

Guanfacine has helped me SO much. Its reduced my hot flashes and panic induced rages and freak outs from several times a day to maybe once a week. I get a full night of sleep now and wake up rested (crazy!!! New to me!!!) and im able to keep myself at a safe and stable pace thru the day. Adrenalin dumps stopped mostly unless I'm having an anxious day for a specific reason.

I still have trouble with normal POTS things like showering, hands over the head, posture changes, etc. But the fact that my system isn't constantly in fight or flight mode has given me the freedom to take care of myself more intentionally and to prevent burn out and to be able to anticipate my future needs better

I think its totally worth it to try because I felt results after one dose so it doesn't take weeks to feel effects and decide if it works for you :⁾

2

u/Pinnacle_of_Sinicle 1d ago

Whats hyper adrenaline pots? What kind of symptoms do u have?

2

u/chemical_xy 1d ago

HyperPOTS is essentially POTS caused by over producing adrenalin but doesn't have to be the exclusive cause / driver of POTS. Like I also have low blood volume. for example if I get a little warm, my body will typically dump adrenalin into my system and I go into a full hot flash / panic attack along with the nausea and headache. W the new med that blocks adrenalin, this isn't happening nearly as much. Same w the cold but shivering. When i roll over in bed or wake up and go back to bed after using the restroom, I get adrenalin dumps too and its hard to relax again.

I've always felt like I'm super on edge and that I cannot stop myself from going into rages but it's because I've been driven by excessive adrenalin since forever. So irritability is a big symptom especially if im dehydrated or underfed.

I dont faint but I get very dizzy and my vision gets dark sometimes if I can't cool down or sit down.

I ramble so I hope any of this makes sense haha

1

u/ConsequenceOdd7685 1d ago

I have this as well, propranolol worked at first but doesn’t seem to be cutting it now no matter what I take… maybe I ask about this as well. Has it stopped your symptoms completely?

1

u/chemical_xy 1d ago

Not completely because unfortunately POTS is so complex.

However I do feel like I have control for once in my life. I'm not run-walking everywhere and doing things on 10x speed and im not going into rages or having severe hot flashes everyday anymore. Maybe once a week. I truly think it's worth asking about. I couldn't do the two together but being on just guanfacine has realllly helped me manage myself.

It doesn't reduce my heart rate directly so it's more about being able to actually adjust to a speed that is safe and not overwhelming and its helped me stop from over exerting myself at work or when doing chores. Its also an ADHD medication :⁾ so it's helped with my working memory and planning and over eating due to being under stimulated.

Hope this helps!!

1

u/djpurity666 1d ago

I was first put on atenolol which made me nauseous, and then propranolol ER which was too high a dose and when it wore off i had bad rebound adrenaline surges. Now I wear the clonidine patch... but yeah propranolol was so bad when it wore off, my doctor didn't understand... and also clonidine tablets cause rebound NE spikes anxiety horrible, but only the patch works. I did want to ask about tuanfacine but my doctor told me it was only for ADHD, and I have ADHD but he won't treat psych symptoms, so wtf

1

u/chemical_xy 1d ago

My psych approved it as well as my GP but honestly my GP is just that kinda person who gives out meds when you ask 😭 so perhaps you could see a psych and get it approved by them or both together?

I'm starting to have some anxiety now about 2 weeks off propranolol and on guanfacine so not sure if it's withdrawal or i need to up my guanfacine or both. Med changes suck!!!

5

u/beautiful11soul 1d ago

Every medication has side effects. You just have to make sure the pros outweigh the cons. It’s also very person dependent. What works for one individual, may not work for another. What medications did your cardiologist prescribe?

1

u/rucan66 1d ago

Ivabradine which works to lower resting heart rate but doesn't work when I'm not at rest. Makes me nauseous and tired with dizziness. And hydralazine to use in emergency blood pressure spikes.

2

u/ChattermaxBrain 1d ago

So far, Atenolol, Clonidine, and Gabapentin. Still working on the right dosing and timing, but it’s the best I have felt. Cardiologist kept saying hypertension until I proved Losartan and Amlodipine were actually making things worse. I tried guanfacine before I was diagnosed with hyper pots but it gave me horrible anxiety.

1

u/rucan66 1d ago

My cardiologist doesn't want to try me on a beta blocker because metoprolol is what caused my hyper adrenergic pots

1

u/ChattermaxBrain 1d ago

Interesting, I was told beta blockers were first line. Maybe ask about an alpha blocker. I have read it can help if other meds don’t. Mine was caused by Covid and/or SNRI so it had been fun trying to make heads or tails. The SNRI kept my BP high and then when I stopped it, the BP never dropped.

Curious, does your BP and HR increase or just one of them when you stand? At first both of mine increased, then after Atenolol, only my BP. Now after Clonidine, my BP only increase a little bit.

1

u/djpurity666 1d ago

Isn't guanfacine time released clonidine?

What kind of clonidine do you use? Tablets mess with my nervous system, but thr patch makes it feel so much better.

1

u/ChattermaxBrain 1d ago

Is in the same family but does something different, can’t remember right now. Clonidine ER is different and dosed different than its brand Kapvay. Normal dose for Clonidine ER is .17mg but Kapvay is .1mg. Also, insurances are weird about it because brand and generic ER version are for pediatric ADHD and off label for adult autonomic dysfunction. It has been fun getting that approved.

I’m on generic .1mg tablets. Dosing: .1 morning, .05 afternoon, and .1 evening. Hence why I’m fighting for the ER form.

1

u/djpurity666 21h ago

Oh you're right!! Same family! My mistake, you're right and I should know bc i looked into this when I went to talk to my doctor about meds. I was looking into alpha-2 adrenergic agonists bc he had told me clonidine caused too much rebound anxiety, but I found another inpatient that gave me the patch so I was okay. But before then I had been prepared to ask about zanafl3x as well just to lower norepinephrine and adrenaline surges.

But yeah, guanfacine is supposed to last longer than clonidine and not affect BP as much, so less BP rebound spikes and surges of NE. Something like that. My insurance only approved the IR guanfacine not the ER and all, and you're right, it would have been a fight for approval.

I'm glad the clonidine patch worked out though. Works great all week, although I think I need a dose increase.

1

u/International_Bet_91 1d ago

High dose pyridostigmine. Tramadol and Eszopiclone as needed.

2

u/LifeOfSprite259 1d ago

Ivabradine!

2

u/jayb_528 23h ago

Propranolol for IST

1

u/Night_Owl_679 16h ago

Midodrine Midodrine Midodrine. Without it, I don't stand up.

Question What medications work best for you?

You are about to leave Redlib