Bad reaction after quitting propranolol

[Betty42]

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?

 

[Mary]

Bumping to top of queue

 

[jesse's mom]

From what I have seen there are many common symptoms of ME/CFS. I have had this for many years now. I have been in remission also. A little over a year ago I got really sick with the real Flu Type A and pneumonia. I have been bedridden since then. I do get the sweating and being hot more than the rest of my household, but I am also intolerant to cold.

The worst symptoms for me is difficulty being on my feet for long, sound sensitivity, light sensitivity, and trouble with speech and finding words. The horrible insomnia has been with me for about 8 years when I have been overstimulated, it is much worse. If I rest well, and eat a good diet I do better.

There are many supplements that I have been trying that I found on this board by studying and asking questions.

I just wanted to welcome you and I hope that was helpful to you!

 

[Sushi]

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

It would be common to react to stopping a beta blocker (propranolol) without tapering slowly. This is because a beta blocker blocks the effects of adrenaline--and adrenaline affects so many functions in the body. Can your doctor start the propranolol again? I also take it so have some experience with it.

 

[sunshine44]

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?

I get your EXACT symptoms. Its horrific. Still working on stabilizing after a bad crash I had in August from upping a supplement too quick. This tends to e my bodys response to so many meds and supplements these days. I am just laying low and working on stabilizing but this is my longest stint ever being down for so many months. I am starting to see glimpses of yes moments but they are few and far between.. do you feel starving all the time and have to eat through the night too? I do....so worn out and dizzy and spinning. I really hope they can find a way to help people with severe POTS episodes like us, I was hospitalized in August and they did not know what to do with me, the iv fluids and magnesium helped of course but they don't continue the IV when I leave sooo….yeah....I take a tiny piece of beta blocker if it gets real high and did begin Ativan even though I did not want to but I have been in very rough shape physically and emotionally since crash. Seems our bodies are so sensitive.

Anyone from the flipside whom no longer has these severe reactions to give us hope? ha

 

[sunshine44]

sending love your way. <3 <3 <3 I have so much empathy and can relate to what you are going through.

 

[JES]

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.

I have divided my propranolol pills for years and they maintain their effect. It should have absolutely no effect and the same for storing pills inside or out of pill cards. I don't know how your pharmacist can make a claim that your pills had no effect anymore, so I would double check with another one. Most drugs, including propranolol, have shelf-life of several years and even much past the best before date given by the pharmacy. I have some propranolol pills in the drawer that are manufactured in 2014 and they still work today (even though they might have lost a tiny % of their effect).

Regarding your improvement on propranolol, I find it interesting, as it's not a drug that ME/CFS patients normally notice much effect from. It turns out that propranolol has both antiviral and immune modulatory effects (1,2,3) besides its action as beta-blocker, so it may be that some of your improvements came from that. Hopefully you find a way to get those improvements back and I feel your pain of being at rock bottom. The dosage you take (5 mg x2) is rather small, so you may want to consult with your doctor and see if an increased dosage could bring some of the benefits back.

 

[Gingergrrl]

According to the pharmacist I was taking my pills for 4 weeks with absolutely no effect.

If I am understanding you correctly, it sounds like you were not trying to taper off Propranolol w/your doctor vs. you were accidentally taking pills that had expired (or were no longer effective)? If this is the case, and if you had positive results from Propranolol in the past, can you ask your doctor for a new prescription?

I would hope that with re-starting, you would get the same positive effects as you did the first time. And if not, then you could slowly taper off vs. abruptly stopping. I have taken Atenolol for POTS since 2013 and if I do decide to stop in the future, I would do a taper. Best wishes and happy holidays to you.

 

[lafarfelue]

Sounds tough, your experience dropping off propranolol this way! Sorry to hear this. How frustrating and upsetting it must be for you.

I have POTS and take Inderal brand propranolol. I recently dropped from 10mg x 2 daily to 0.5mg x 2 daily and noticed worsening of most symptoms (but lessened propranolol related insomnia, which is nice!). I don't experience such severe POTS symptoms as you do, and I still don't think that 0.25mg x 2 daily would help my symptoms at all.... like I think Gingergirl(?) mentioned, it might be good to discuss dosage with your doctor or specialist? Some meds just have little to no effect unless at a certain dosage. There may be more info around the forums about that aspect.

I also agree with others about the propranolol's efficacy not dropping off if taken out and/or cut in half. It might if stored above or below the recommended temperatures or in full sunlight, but otherwise it's quite stable etc. Agree it's probably worth getting a second opinion on that too.

Regarding your improvement on propranolol, I find it interesting, as it's not a drug that ME/CFS patients normally notice much effect from.

Perhaps not for ME/CFS directly, but for treating POTS, it can make a significant difference for many. I think it bumped me up around 15-20% functionality once I started taking it for POTS.

 

[Betty42]

It would be common to react to stopping a beta blocker (propranolol) without tapering slowly. This is because a beta blocker blocks the effects of adrenaline--and adrenaline affects so many functions in the body. Can your doctor start the propranolol again? I also take it so have some experience with it.

Hello

I startet the propranolol treatment again in the end of October. This gave my a huge reaction. I got very warm and wasn't able to wear clothes for 2 months. I'm still on the propranolol hoping for the best.

 

[Betty42]

I get your EXACT symptoms. Its horrific. Still working on stabilizing after a bad crash I had in August from upping a supplement too quick. This tends to e my bodys response to so many meds and supplements these days. I am just laying low and working on stabilizing but this is my longest stint ever being down for so many months. I am starting to see glimpses of yes moments but they are few and far between.. do you feel starving all the time and have to eat through the night too? I do....so worn out and dizzy and spinning. I really hope they can find a way to help people with severe POTS episodes like us, I was hospitalized in August and they did not know what to do with me, the iv fluids and magnesium helped of course but they don't continue the IV when I leave sooo….yeah....I take a tiny piece of beta blocker if it gets real high and did begin Ativan even though I did not want to but I have been in very rough shape physically and emotionally since crash. Seems our bodies are so sensitive.

Anyone from the flipside whom no longer has these severe reactions to give us hope? ha

Hello

When I'm very sick I have to eat all the time (and I don't gain any weight). I'm also extremely sensitive to everything. Do you have POTS?

 

[Betty42]

sending love your way. <3 <3 <3 I have so much empathy and can relate to what you are going through.

Thank you so much

 

[Betty42]

I have divided my propranolol pills for years and they maintain their effect. It should have absolutely no effect and the same for storing pills inside or out of pill cards. I don't know how your pharmacist can make a claim that your pills had no effect anymore, so I would double check with another one. Most drugs, including propranolol, have shelf-life of several years and even much past the best before date given by the pharmacy. I have some propranolol pills in the drawer that are manufactured in 2014 and they still work today (even though they might have lost a tiny % of their effect).

Regarding your improvement on propranolol, I find it interesting, as it's not a drug that ME/CFS patients normally notice much effect from. It turns out that propranolol has both antiviral and immune modulatory effects (1,2,3) besides its action as beta-blocker, so it may be that some of your improvements came from that. Hopefully you find a way to get those improves back and I feel your pain of being at rock bottom. The dosage you take (5 mg x2) is rather small, so you may want to consult with your doctor and see if an increased dosage could bring some of the benefits back.

Hello

I think it helps my POTS more than it helps my CFS.

My propranolol pills are German and the pharmacist told me that the pills had to be stored air sealed (she got the information from the producer of the pills).

Thanks, I really hope to get back to an activety level of 18-20 % again

 

[Betty42]

If I am understanding you correctly, it sounds like you were not trying to taper off Propranolol w/your doctor vs. you were accidentally taking pills that had expired (or were no longer effective)? If this is the case, and if you had positive results from Propranolol in the past, can you ask your doctor for a new prescription?

I would hope that with re-starting, you would get the same positive effects as you did the first time. And if not, then you could slowly taper off vs. abruptly stopping. I have taken Atenolol for POTS since 2013 and if I do decide to stop in the future, I would do a taper. Best wishes and happy holidays to you.

I'm back on the propranolol and hoping for the best

 

[Betty42]

[QUOTE="lafarfelue, post: 1020517, member: 28320"

Perhaps not for ME/CFS directly, but for treating POTS, it can make a significant difference for many. I think it bumped me up around 15-20% functionality once I started taking it for POTS.[/QUOTE]

I have the same experience . I bumped up from 8-12 % to 18-20 % on 5 mg x 2 Inderal.

 

[sunshine44]

Hello

When I'm very sick I have to eat all the time (and I don't gain any weight). I'm also extremely sensitive to everything. Do you have POTS?

yes, es and yes. Although past year I began gaining weight.....years ago I was underweight...gah.

 

[Gingergrrl]

I'm back on the propranolol and hoping for the best

That is good news and hoping that you return to the prior improvements that you were getting from propranolol plus MORE