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More information on medications, plus... - Encephalitis Inte...
More information on medications, plus patient reviews
Written by
Gandalf2
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6 Replies
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Thanks, G2. This is a good resource. Out of curiosity, I searched benzodiazepines, specifically clonazepam. I’ve been offered that Rx at least 10 times for the issues caused by E in my brainstem. There are so many warnings on it, and my doctors offer it like it’s no big deal. 🤯
I have been taking Clonazepam (together with Phenytoin for 36 years) for my Status Epilepticus. What does Rx mean p)ease? It does the job so I have no complaints.
Sorry, Rx means prescription. It might be an American term. I’m glad to hear it works for you! I’ve heard stories of dependence and life-threatening withdrawal symptoms from others.
I think they mean that it's not wise to drink alcohol whilst taking it. I hardly ever drink alcohol because generally speaking it is bad for one's health, I only ever have 1 sweet sherry or 1 pimms if it's a special occasion, if someone offers me another one I just say no thanks and get a tomato or apple juice. I believe that one dr told me that Clonazepam is not as addictive as other benzodiazepines, and the last neurologist I saw said as long as you only take it as prescribed and no more. I take 2mg at bedtime. Don't take it in the daytime because it can make you drowsy. I was first prescribed 4mg but it was summer and I fell asleep in the garden then my Mum rang them up and they lowered my dose to 2mg which is now the maximum dose for epilepsy. I used to take Diazepam for the first 9 years, and because that was addictive they changed me to Phenytoin and Clonazepam together, I haven't had any side effects. Is this your first medication you have been prescribed? If so I would stay on it but also talk to your neurologist before changing it or thinking about coming off it.I hope this helps you a bit more Kitknaboodle.
Thanks, Paula-38 ! Yeah, I don’t drink either. To clarify, I haven’t taken clonazepam; all of my doctors have offered it, but I pass. I don’t want the risk of catatonia, dependence, or even death. I realize the risk is relatively low, but it seems unnecessary. If I had epilepsy, I’d definitely take medication for that. It is not obvious that medication is helpful or necessary for my conditions. If you want to read more about what I experience, I wrote a post on “flooding”.
Side note: Mostly early in my recovery, I trialed gabapentin, meloxicam, amitriptyline, trazodone, oxybutynin, fesoterodine, and others I can’t recall. The side effects were generally worse than the problem itself. If I make my life simple, stable, and predictable (cc Mnt2sea ), I can manage my symptoms for the most part. I do take mirabegron these days with no problems.
My rule is that the drug needs to be absolutely necessary and not harmful. I am sick and tired of Western doctors who think they need to treat or mask every little problem. Maybe the issue lies in our general aversion to pain and discomfort. But, guess what, folks: pain is not an aberration. There is no life without pain. Pain is informative. Our bodies are trying to tell us something valuable, if only we would slow down and listen.
But, I repeat: epilepsy needs to be treated pharmacologically! I was not referring to your situation, Paula, in my rant. I’ve just gotten carried away. I even made my hands numb from typing. 🙃
Thank you for your post, its always good to get a second opinion or more when things are health connected.
One of my doctors was impressed when I showed him a research paper on the possible brain nerve repair potential of psilocybin. I seemed to gain in his perception of me. (that doesn't read very well ....)
I often find that 'professionals' look down on people with a Yorkshire accent. On the other hand they can get irritated when patients trawl the internet blindly looking for miracle cures. Rx is a new term for me, now I know!
Best Wishes G2
