SIDE EFFECTS OF MEDICATION

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Hi dear co-travellers,

It has been a long time since I have not been active in the forum. Thanks to Cymbalta x 60mg per day, Clonotril/Rivotril (clonazepame) x 2 mg per day and 9 Neurontin x 300mg (similar to Lyrica) per day.

I am almost two years medicated in order to cope with excessive neuralgia on the top of my head. Without these medicines, I cannot walk, talk or sleep.

I have almost all the symptoms of CFS/ME/fibro - outlining this burning effect in my muscles after exertion, extended sleeping, inability to work and all the limits u can imagine.

Unfortunately I now have to deal with the side effects of the medication. I am becoming stupid. Clonotril is listed as a true drug in Greece.

I am experience loss of short-term memory. I have to dive into deep waters to bring up memories that otherwise it would be easy to remember. I dont write correctly any more and I am doing so many mistakes on the telephone and in messages. I mix up places, words, orthography is bad. I cannot articulate well. And I have started speaking slow. I mean SLOOOOW. 10 sec to retrieve a common word like for example...cloud. I registered myself talking and it is like a retarded trying to talk.

I am really worried. I have no choice but to continue medication and limit a bit the meds. Doctors say that these symptoms are reversible. Are they? How bad will the situation get guys? I dont care about myself so much. But my partner? Who will he have next to him? An empty shell, just good hearted and nothing else?

I cannot retrieve even names of actors...Pierce Brosnan...I was asking myself. Is it James? Is it David?

Nobody talks about the long-terms side effects. I have the right to know.

Please help me. I only have u.
 

ljimbo423

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Clonotril/Rivotril (clonazepame) x 2 mg per day
Doctors say that these symptoms are reversible. Are they?
Hi Vickytoria1988 - I can't speak to the other medications you take but I took 1-2 mg a day of Clonotril (clonazepam) for many years. I have been off it now for several years.

I didn't experience any long time side effects from it. Although while I was taking it, it often made my thinking much slower and made me much more foggy headed.
 
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Hi Vickytoria1988 - I can't speak to the other medications you take but I took 1-2 mg a day of Clonotril (clonazepam) for many years. I have been off it now for several years.

I didn't experience any long time side effects from it. Although while I was taking it, it often made my thinking much slower and made me much more foggy headed.
Thank you so much for responding. This information is quite relieving. Stay well & happy!
 

geraldt52

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I can't tell you what to do, but since you asked I will give you my experience.

I was on clonazepam for about 4 years, based on what I now know to be the insane recommendation by numerous CFS "experts" at the time that it was "neuro protective". I became habituated to it, finally reaching a point where I couldn't increase the dose, couldn't decrease the dose, and had intolerable side effects at the dose I was taking. I went through an absolutely horrible withdrawal after stopping it, lasting at least a decade. That was 20 years ago, and the anxiety and horrible insomnia of the withdrawal appear to be permanent, though no where near as bad as during the first decade. I never even knew what anxiety was, and had only mild occasional insomnia before taking the clonazepam...no question that it was the clonazepam. Benzos are notorious for this, but not everyone who takes them is so affected. If you are one who is though, it can be a living hell. Only you can decide if it is worth the risk.
 

Thinktank

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I can't tell you what to do, but since you asked I will give you my experience.

I was on clonazepam for about 4 years, based on what I now know to be the insane recommendation by numerous CFS "experts" at the time that it was "neuro protective". I became habituated to it, finally reaching a point where I couldn't increase the dose, couldn't decrease the dose, and had intolerable side effects at the dose I was taking. I went through an absolutely horrible withdrawal after stopping it, lasting at least a decade. That was 20 years ago, and the anxiety and horrible insomnia of the withdrawal appear to be permanent, though no where near as bad as during the first decade. I never even knew what anxiety was, and had only mild occasional insomnia before taking the clonazepam...no question that it was the clonazepam. Benzos are notorious for this, but not everyone who takes them is so affected. If you are one who is though, it can be a living hell. Only you can decide if it is worth the risk.
the same happened to me with clonazepam... 4 years of usage turned into a living nightmare. 3 years clean now but still suffering immensely, it feels like my CNS/ANS has been permanently damaged or altered to be highly sensitive.
The anxiety you are describing is pure terror. I could deal with anxiety before the benzo, but not any longer. I'm in a state of fight or flight 24/7.
How are you dealing with stress 20 years after?

Taking a benzo for so long has been one if not the worst mistake i have made in my life. That and taking ciprofloxacine, a fluoroquinolone antibiotic. Also 4 years of high dose antibiotics for overdiagnosed lyme disease has left me broken. Had i not put so much trust in doctors and not taken all those medications then i believe i would still have something that might resemble a life.

I'm rambling now... the pent up frustration is driving me nuts.

@Vickytoria1988 , please read Dr. Ashthon's manual and articles on https://www.benzo.org.uk/
On how to get off clonazepam. Don't believe your doctor that you can reduce your dose by half in a few weeks, most doctors are completely clueless about benzodiazepine withdrawal syndrome and the dangers these medications bring.
 
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Hi dear co-travellers,

It has been a long time since I have not been active in the forum. Thanks to Cymbalta x 60mg per day, Clonotril/Rivotril (clonazepame) x 2 mg per day and 9 Neurontin x 300mg (similar to Lyrica) per day.

I am almost two years medicated in order to cope with excessive neuralgia on the top of my head. Without these medicines, I cannot walk, talk or sleep.

I have almost all the symptoms of CFS/ME/fibro - outlining this burning effect in my muscles after exertion, extended sleeping, inability to work and all the limits u can imagine.

Unfortunately I now have to deal with the side effects of the medication. I am becoming stupid. Clonotril is listed as a true drug in Greece.

I am experience loss of short-term memory. I have to dive into deep waters to bring up memories that otherwise it would be easy to remember. I dont write correctly any more and I am doing so many mistakes on the telephone and in messages. I mix up places, words, orthography is bad. I cannot articulate well. And I have started speaking slow. I mean SLOOOOW. 10 sec to retrieve a common word like for example...cloud. I registered myself talking and it is like a retarded trying to talk.

I am really worried. I have no choice but to continue medication and limit a bit the meds. Doctors say that these symptoms are reversible. Are they? How bad will the situation get guys? I dont care about myself so much. But my partner? Who will he have next to him? An empty shell, just good hearted and nothing else?

I cannot retrieve even names of actors...Pierce Brosnan...I was asking myself. Is it James? Is it David?

Nobody talks about the long-terms side effects. I have the right to know.

Please help me. I only have u.
I too am struggling with medication side effects with similar symptoms. The crazy thing is that I've only been on them maybe a month! I am so terribly sensitive but my migraines and neck pain were unbearable. Now I'm not so sure, this feels unbearable too. My wife told me today that she feels like I've died and she's taking care of some patient. I hope you are doing well since this was posted. Sending much 💕 and thank you for sharing. Auds
 

EddieB

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Just wanted to share in all of your frustrations with medications. I’m currently trying to gradually taper off mirtazapine and it’s awful. The lower the dose, the more severe the effects become.

The only bright spot (if any) is how much worse all my symptoms became from it. Tells me there is a neuro-chemical component to this, and that maybe with the right medicine or supplement it could be helped.

I hope we can all find some relief soon.
 

lenora

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Hello Everyone....I've been diagnosed for approx. 34 yrs., so you know I've had ME for much longer than that. I also have 2 serious neurological disease (which also cause considerable pain) as well as other illnesses, which I won't bother mentioning now.

I'd like to say that when I started with this, we had nothing to help with the burning and other pain of these illnesses. Ice was the only thing that helped; I became like Pavlov's Dog when I thought of it. To this day it's the only thing that numbs it, heat always makes it worse the next day. Ace has great blue cloth covered ice packs that you can lay on. Make certain that the cord area is included. No longer than 20 min. on/at least 20 off. Sometimes I forget about this simple cure, and I hope you've all tried it. Just wrap in a very light flour tea towel and lay on it. No big deal for any of it...and it's not hard like a rock.

Also, during that time, all newly introduced drugs were given in amounts that were too high in dosage. I know what you mean about being a zombie....that's exactly how I was left. Fortunately for my husband, he was gone for 5 days/wk. and kept mighty busy the 6th. I gained a tremendous amount of weight, even though I wasn't eating much (that's the truth), high blood pressure, severe tooth problems oh, I could go on and on. So I came off the gabapentin, but the pain drove me back to it. Tens units were useless for me and taking a shower/day was a major Olympic event. I became a bloated caricature of myself, but the pain was even worse.

Sometimes our decisions are incredibly difficult to make. I'm in the midst of one now and have no idea which medication(s) are responsible. I'm fighting off Autoimmune Encephalitis which doesn't seem to be terribly rare with people with ME. In my case, it has been traced to my heart. In the meantime I had dropped down to 115 lbs., my usual weight, and didn't feel like eating at all. Well, in all honesty, I still don't, but I'm eating soup 3 times/day and I'm trying to adjust as well as I can to these meds. I'm the guinea pig who came before you...and it helped. Newer, more tolerable drugs were developed and doctors and researchers had a greater understanding of how our bodies worked. I've already gained 18 lbs. and will face the wratch of my cardiologist soon.

I guess what I'm trying to say is that we are individuals and the drugs are not going to work the same way on all of us. I wish you well as you make your decision. A mind is a terrible thing to lose....I lost mine for 3 mos. and that was more than enough. Yours, Lenora