Experiences of Guanfacine (Intuniv) on heart rate and blood pressure in non-hyperadrenergic POTS

[Elizaangelica]

I haven’t been told which type of POTS I have. My blood pressure doesn’t increase on standing, though I’ve read that it’s not determined by that factor alone, and my experience is far closer to HPOTS. Anyway, I’m thinking of asking my doctor to try Guanfacine in the hope it’ll help with my POTS, but especially my ADHD and fatigue (for which I can’t find a med I can tolerate). But because I’m not sure which POTS I have, I’m concerned about it going badly. I have normal (very occasionally slightly low) blood pressure. I know Guanfacine is a heart medication for hypertension, so does anyone have trouble taking it if their blood pressure is usually normal? Anyone experience low blood pressure or increased heart rate while on it?

[Pistol]

Hello @Elizaangelica - I have HPOTS and was on Guanfacine for years. It helped with high BP and somewhat for ADD, but I only used it in addition to my other heart medications. I only took 1/2 of the lowest dosage pill ( 0.5 mg ). Eventually I had to stop it b/c I no longer needed it, my BP stabilized b/c of IV fluids ( i still take my other BP meds though ). 

I don;t believe that I personally would take it if my BP was on the low side, like yours. It is a pretty powerful little pill! You might benefit more form Ritalin ( which I also take ), or another ADD med. 

[CallieAndToby]

I didn't do well with guanfacine. It made me extremely exhausted and tired even though it stopped the adrenaline. It also gave me horrific insomnia. I have low blood pressure issues and it made my blood pressure much lower and I would feel faint just moving my head. I'm really sensitive to medication so even at 1/4 of 1mg I was having these symptoms so I had to discontinue.

[cmep37]

I've not tried it so can't comment on how it affected BP but I wondered if you had considered Ivabradine (Corlanor) instead - it has no effect on BP and is supposed to help with fatigue. I couldn't take it as it reduced my already low HR but I know several people who had good results with it.  

[p8d]

I take it but have hyperadregenic POTS. I have supine HTN and orthostatic hypotension so am a nightmare for the cardiologist. I take the extended release formula and it’s much, much less sedating than the non ER version. I couldn’t tolerate the non ER formula, it really caused fatigue. My BP swings to very high sometimes so we use it and accept the extra OH it causes. It doesn’t do anything for the fatigue so it wouldn’t help with that. 

[Elizaangelica]

Thanks everyone. I feel really backed into a corner with my med options. I haven’t been able to find an ADHD med (stimulant or Strattera) that doesn’t drastically increase my heart rate. I recently went back on Modafinil, which I’d had success with before my POTS worsened, but now I can’t tolerate it either. I also have bipolar, so these type of meds always bring the risk of destabilising me 😒 This includes beta blockers (which made my POTS worse anyway).

I’ve been on Ivabradine for about 7 months. It’s lowered my heart rate by about 20bpm and broke me out of a terrible flare, but it hasn’t had much of on effect otherwise, and my heart rate (resting and standing) has been creeping upwards over the months so that now, in the hours when the med should be working the best, my standing heart rate is back over 120bpm. And around 150bpm when it wears off.

[CallieAndToby]

On 6/1/2021 at 2:39 PM, cmep37 said:

I've not tried it so can't comment on how it affected BP but I wondered if you had considered Ivabradine (Corlanor) instead - it has no effect on BP and is supposed to help with fatigue. I couldn't take it as it reduced my already low HR but I know several people who had good results with it.  

Seems like something I'd like to try. Bystolic even lowers my blood pressure.

[CJ65]

I can’t live without Guanfacine for my HPOTS. I tried Clonidine first but it knocked me out. Guanfacine is less sedating but still adds to my tiredness.  At one point I took 2 mg at night and 1 mg during the day which helped with daytime sleepiness, but I’m back to 1.5mg twice/day. It didn’t help get my heart rate down so I take propranolol for that. There is a hyperandrenergic POTS group on Facebook that I found very helpful, lots of posts about Guanfacine. @Elizaangelica good luck!

[cmep37]

19 hours ago, CallieAndToby22 said:

Seems like something I'd like to try. Bystolic even lowers my blood pressure.

My cardiologist was very keen on Ivabradine and touted it as a game changer for a lot of people like me who couldn't take other BBs because they lowered BP too far.  My Bp runs low normally (100/60 ish) so when I took propranolol although it reduced my standing HR by about 20 BPM it also dropped my BP into the 80/40 range which was just as bad if not worse than the 140+HR.   Ivabradine did not do this but despite still being POTSy in the evenings my resting HR was high 40's low 50s - 3 weeks of the lowest dose of Ivabradine and by 4pm until 8-9am it was mid to high 30s which I just couldn't tolerate.  It's never quite gone back to how it was before Ivabradine but is now low to mid 40s in the evenings and at night which isn't pleasant but is tolerable.  If you don't have that low HR in the evening problem (and to be honest I've not heard of many POTSies who do!) then I'd definitely try it - here in the UK a GP can prescribe it, you don't need a consultant's prescription although the situation in the US is probably different.  

[CallieAndToby]

18 hours ago, cmep37 said:

My cardiologist was very keen on Ivabradine and touted it as a game changer for a lot of people like me who couldn't take other BBs because they lowered BP too far.  My Bp runs low normally (100/60 ish) so when I took propranolol although it reduced my standing HR by about 20 BPM it also dropped my BP into the 80/40 range which was just as bad if not worse than the 140+HR.   Ivabradine did not do this but despite still being POTSy in the evenings my resting HR was high 40's low 50s - 3 weeks of the lowest dose of Ivabradine and by 4pm until 8-9am it was mid to high 30s which I just couldn't tolerate.  It's never quite gone back to how it was before Ivabradine but is now low to mid 40s in the evenings and at night which isn't pleasant but is tolerable.  If you don't have that low HR in the evening problem (and to be honest I've not heard of many POTSies who do!) then I'd definitely try it - here in the UK a GP can prescribe it, you don't need a consultant's prescription although the situation in the US is probably different.  

Thanks, good information. Yea the blood pressure thing is very tricky.