Bad reaction after quitting propranolol

[Sig]

 

I’m a European woman in my 40’s who has severe POTS, but I have had good effect from propranolol (5 mg x 2). Before starting this treatment my average shape/condition have been from 8 -12 % of what a healthy person can do. After starting using propranolol my shape has increased to 18-20 %.

 

Due to wrong storage of my propranolol pills they lost effect (I took the pills for 6 weeks out of the pill cards and divided the pills in 2). I continued for 6 weeks to take these pills with little to none active substances. According to the pharmacist I was taking my pills for 4 weeks with absolutely no effect.

This resulted in a heavy setback where all my symptoms are back and I’m totally bedridden and my pulse is very unstable. I have been very sick for 9 weeks now. The symptoms started gradually and increased until I “hit bottom” after 8 weeks (I’m still at this stage). It started with an increase in skin temperature, can’t have any clothes on, had to cool down my skin with a cooling element, I can’t sleep (need sleeping pills), I’m shivering, sweating in my hands and feet, the sweat in my armpit’s smells “chemical” (I never sweat generally) and my pulse is high and unstable.  

I have experienced the same reaction before ago after being part of a research project (I didn’t tolerate the medicine). Then I went through the same reaction and timeframe before “hitting bottom”. Back then it took me 4-5 months to get out of bed.

 

Have anybody experienced this? Do anyone know what sort of reaction I’m experiencing?

 

[Pistol]

Dear @Sig - I am sorry about this terrible experience. I too had a similar effect when I had to stop my Beta blocker because a cardiologist ( not mine ) told me to stop all meds because there was nothing wrong with me and I did not need them. So I stopped Metoprolol for 5 days and became terribly ill, with symptoms similar to what you are experiencing. Then I saw my cardiologist and he saw with his own eyes what happened and got very angry at the cardiologist and I restarted the Metoprolol and after about 3 days I was back to "normal". BB's have to be weaned off slowly and carefully and what you are going through is a typical reaction to sudden withdrawal. Are you not back on new pills? Once you start back with a fresh supply you should see improvement. You might even have to increase the dose or switch to a different BB ( check with your cardiologist ) I wish you well and that you feel better soon. 

[Sig]

Hello Pistol

 

I have new pills (which I haven’t taken out /divided 😊) and I have been taking them for 9 weeks now. It hasn't slowed down the downward spiral, but it has some effect on my pulse. I think that being 4 weeks of propranolol has giving me a huge POTS reaction. I guess this also effect my central nerve system and that it will take some time to get the “system in balance”.

 

[Pistol]

Dear @Sig - I am sorry. Yes - once you are in a fullblown flare it can take long. Especially since you have to recondition yourself all over again. What I have done in those instances is keep taking my meds, do the usual hydration/salt/compression regimen and - most importantly - get up and exercise. This is the one thing that helps your body regain strength and balance. Also - in my case IV fluids over 12 - 24 hours help significantly. They interrupt the faulty ANS signaling and give you strength. They help most POTS patients but often are not easily ordered by physicians, especially in Europe. Try to talk to your doctor about IV fluids - or go to ER for them. Best of Luck!!!!!!!

[MomtoGiuliana]

So sorry for your reversal of progress.  If you are increasing fluids and salt and that isn't really helping, IV fluids might still really help a lot.  When I was very sick earlier this year I was admitted to hospital and given fluids over 48 hours.  It helped tremendously to stabilize my heart rate and blood pressure.  After that I received fluids 3X a week as an outpatient.  I believe it helped tremendously in my recovery.  

I agree also that trying to get up and move around is generally a good idea.  Too much lying down will lead to deconditioning.  Of course it can be a balance, bc moving around too much can trigger worse symptoms too.

[Sig]

Dear @Pistol

 

I think you are right about the signaling in the autonomic nervous system (ans). I have tried IV, but without any effect. My pulse is very unstable and goes up and down from 75 -95 while I’m sitting totally still, but sometimes it feels like the ANS signals is working properly and the pulse is much more stable.  

 

[Sig]

Dear @MomtoGiuliana

 

At the moment I'm feeling so sick and I'm having some sort of seizures that I believe is some sort of nerve pain. It's therefore not much I'm able to move around, but I agree - it's probably smart to try to move around a bit.