Klonopin

[dannybex]

I find that diphenahydramine makes me incredibly jumpy - I might *sort of* sleep, but kicking my legs/tossing and turning all night. Not exactly the most beneficial way to sleep.

Yeah, me too. Even before I officially was diagnosed, Benadryl (or diphenhydramine) would yes, make me sleepy, but in a restless, uncomfortable way...from head to toe. I think it could possibly be because it constricts blood vessels, thus blood flow may be impaired...

But like all drugs, it's fascinating how some we all react differently to the same med.

 

[Wayne]

Wayne,
Can you tell me how your long term use of klonopin made your neurological symptoms worse? I have used it long term and I know all drugs have side effects. What happened?

Hi Hensue,

To clarify, I began to "suspect" the clonazepam was making my neurological symptoms worse, but I no longer feel that was the case. I decided to taper off the clonazepam to see if the neurological symptoms improved, and they really didn't.

I decided to stay off however, because I noticed I didn't have a morning "hangover" feeling like I did when I was taking it, and this made my mornings a little more bearable. I wouldn't characterize this hangover feeling as being a neurological symptom however.

Best, Wayne

 

[Wayne]

The other problem unique to klonopin, is that it is the ONLY benzodiazepine that has ANEMIA, LEUKOPENIA, and NEUTROPENIA as "side effects". The only one. How can our immune systems function properly if we develop anemia, or low white blood cell counts?

Hey Dan,

I really appreciate you mentioning the side effects of Klonopin. I would probably not be aware of it otherwise. My brother takes clonazepam regularly, and I was wondering if you know whether generic Klonopin (clonazepam) has the same side effects. I've been meaning to talk to him about these side effects, but I feel I need a little more information before doing so.

Thanks much!

Best Regards, Wayne

 

[greatgran]

Chris, I take Xanax which is a benzo like Klonopin and if wasn't for this medicine I would be non functional.. Not sure why it helps but so glad it does.
It doesn't take my symptoms away but sure takes the eddge off.. I have been told that CFS is a disease of the Central Nervous System so it true that would explain why it helps.. The only thing about xanax is doctors do not want to give it because it is a street drug, I guess thats the reason.. So my next doctor's visit I am going to ask about Klonopin.. I hear it is easier to come off of than xanax.. Hope it continues to work for you..

 

[donnawhit]

Am I hearing this right??? Klonopin eliminates your CFS pain? Klimas has me on Imunovir ( very low dose), and I take .25 Klonopin at night only. she recently added 1.5 mg of LDN/low dose naltrexone for "pain relief". I have not started LDN yet, as hate to add more drugs. Maybe try adding more klonopin first to see what happens. Has anyone tried Imunovir AND Low Dose Naltreone together????? imunovir really helped energy/fatigue. Pain is still there ........

 

[dannybex]

Am I hearing this right??? Klonopin eliminates your CFS pain? Klimas has me on Imunovir ( very low dose), and I take .25 Klonopin at night only. she recently added 1.5 mg of LDN/low dose naltrexone for "pain relief". I have not started LDN yet, as hate to add more drugs. Maybe try adding more klonopin first to see what happens. Has anyone tried Imunovir AND Low Dose Naltreone together????? imunovir really helped energy/fatigue. Pain is still there ........

LDN is a very safe drug from what I understand...it certainly doesn't have any addiction or habituation potential like klonopin, nor does it have anemia, or low white blood cell counts as a side effect. Plus, if it eliminates CFS pain, it does so only temporarily...until it wears off and you take the next dose. It's my understanding that

LDN helps "rebalance" the dysfunctional immune system which may help address the cause(s) of the pain, rather than just treating the symptoms. Just my two cents, but I'd follow Dr. Klimas' advice. She has patients who have recovered.

 

[leaves]

I take both ldn and imunovir, had severe side effects from ldn at start ( I think iris) Some people get worse some people get better. Please check the ldn thread before you start.

 

[dannybex]

Hi Leaves -- thanks for your input -- very important to hear the pros and cons.

Weird question: What does IRIS stand for? I've seen it on threads, but have never seen an explanation?

 

[leaves]

Iris is immune reconstitution inflammatory syndrome You can feel sick when your immune system finally starts working. Wikipedia can explain it better tho

 

[JMK]

I take both Immunovir and LDN also. I started LDN about 6 weeks ago and Immunovir about 4 weeks ago. I am much worse! I guess I should have spaced them out more, so I know what is doing what, but I have been pretty much bedridden for the last 5 weeks and my pain is more severe and relentless. I took Immunovir a little over a year ago (no LDN) and I improved dramatically for a short period of time ( about 7 weeks), then it seemed to stop working. Since it gave me such a good couple of months, I decided to try it again, but as I said this go around is the pits. I'm guessing that it's probably due to starting both Immunovir and LDN so close together, but who knows. I'm sticking with both though, because I've got no other options, so I'm hoping to see improvement eventually.

 

[zoe.a.m.]

Is there any info by Klimas or anyone else with experience with these meds about what the negative reactions are caused by? I think IRIS is a good hypothesis, but is that really the case in most of these patients?

I just hope someone is keeping track (blood-work-type-of track) of who experiences what reactions and why, since it seems like a very good idea to figure out which patients will do well with which medications rather than just 'trial and error' in every situation.

Especially with LDN, it seems like we really need some info on who's benefiting and why...

 

[sensing progress]

Hi Leaves -- thanks for your input -- very important to hear the pros and cons.

Weird question: What does IRIS stand for? I've seen it on threads, but have never seen an explanation?

Here's an excellent write-up by Mindy Kitei about IRIS (and HAART): http://www.cfscentral.com/2010/07/haart-and-iris.html

 

[dannybex]

Here's an excellent write-up by Mindy Kitei about IRIS (and HAART): http://www.cfscentral.com/2010/07/haart-and-iris.html

Thank you...and thanks to Leaves too. I kept thinking, "Iris, who's Iris?"

 

[slayadragon]

I've recently realized that I'm not just an extreme responder to toxic mold, but also to toxic cyanobacteria. So I've been reading up on it.

Many of the toxic cyanobacteria exert their effects through excitotoxicity. They act on the glutamate receptors in the brain.

In some cases, this can be deadly.

For instance, one cyanobacteria is found in marine waters. It makes a toxin called domoic acid, which is responsible for killing sea otters and other wildlife off the coast of California, and that was responsible for an outbreak of "Amnesiac Shellfish Poisoning" (killing a number of people) off the Pacific coast of Canada in the late 1980s.

The main substance that is used as treatment for domoic acid poisoning is benzo drugs. These not only exert short-term effects, but help to prevent permanent neurological damage from occurring.

This was given to the people in the ASP outbreak, and is used regularly to treat the sea otters and other wildlife suffering from the poison.

This sounds an awfully lot to me like what Dr. Cheney says about the Klonopin preventing the brain cells from burning up.

So insofar as we indeed are being affected by an outdoor cyanobacteria, taking Klonopin or other benzos might be the exact right thing to be doing.

I certainly wouldn't avoid it if it felt right, just for theoretical reasons, anyway.

Best, Lisa

 

[*GG*]

Cyanobacteria?,

Interesting. I get notifications for this frequently for the state I live in. Perhaps something else you might want to look into is I read in my Alumni Magazine a while back, that there was found to be a high incidence of ALS in the Lebanon, NH (Mascoma Lake?) area I believe, if my memory serves me correctly.

You have heard of the Ciguatera toxin testing that the National CFIDS does?

GG

 

[slayadragon]

Hi GG,

Do you know any other CFS patients from your area?

Are headaches or heart/chest pain/pressure a part of your illness?

The team of researchers (from the University of Hawaii) who found the ciguatoxin is now doing some work under a CFS Foundation to look for BMAA (a cyanobacteria toxin) in CFS patients' systems.

Thanks, Lisa

 

[*GG*]

Hi GG,

Do you know any other CFS patients from your area?

Are headaches or heart/chest pain/pressure a part of your illness?

The team of researchers (from the University of Hawaii) who found the ciguatoxin is now doing some work under a CFS Foundation to look for BMAA (a cyanobacteria toxin) in CFS patients' systems.

Thanks, Lisa

I attend a couple of support groups 1 is for Fibro/CFIDS and the other is Fibro, perhaps others have CFIDS also?

Headaches are a big time issue for me. Not heart/chest pain/pressure. I just did the Exercise Disability testing, so my heart is pretty good!

 

[Bob]

I'll add my experiences of Klonopin/Clonazepam in case it's helpful for anyone.

Apart from resting and pacing, the only thing that I've ever found helpful is Clonazepam.

The trouble with it is that after a few days your body becomes used to it and builds a tolerance (the same effect as addiction), so that it then becomes unhelpful and you get a withdrawal effect when stopping it (i.e. increased agitation). For this reason I find that the use of Clonazepam is limited.

However, I find that there is a way to get around this, that works for me... I've been taking one quarter of a 0.5mg tablet almost everyday for a couple of years now... so this is a tiny 0.125mg dose.
At this tiny dose, my body does not build up a tolerance and there is no withdrawal effect when i stop taking it.

I find that this dose stabilises my ME, helps me heal, and is extremely useful for a frazzled, agitated brain. It has a mild effect but is very useful over time. I really notice the difference when I am on it, and this has been consistent ever since I discovered it. It doesn't cure the ME or make it go away completely, but I do find that it helps to stabilise it, and it helps me heal (i.e. improves my symptoms over time, as long as I pace).

My ME is quite stable right now, so I don't always take Clonazepam at the moment, but I do if my symptoms are getting worse, or becoming unstable (I seem to be at quite a stable place right now, which is quite a new experience for me - but I don't think this is related to the Clonazepam - I think it's just luck, and maybe a lot of resting and pacing.)

I don't take any other medications or supplements, apart from taking antidepressants when I need them, because I find that nothing else helps my symptoms.

 

[Sing]

Hi Bob,

I am new to Clonazepam over the past two months. Like you I am finding that a quarter of a .5 mg tab is helpful though mildly so. Using a half sometimes, however, is helpful for a better night's sleep. Every day, however, a half makes me too sleepy and slow, and like you, I noticed the nearly instantaneous addiction or tolerance--how the brain just grabs on and wants to keep it coming! That is scarey.

I hope this drug is actually helpful to my brain in the lower dose.

Something else I really appreciate it for is that it helps with pain.

Sing

 

[kaazoom]

Someone pointed me to this thread after I talked about my recent experience with clonazepam. I was originally prescribed it for involuntary movements that started within the first 6 months of being ill. I was prescribed up to 1.5 a day on a as needed basis. I took 0.5mg at night as at that time as my involuntary movements were worse when I was laying down, I also found it helped me to sleep.

A year or so ago I read an article that talked about Dr Cheney's use of the drug. So I started to take 0.25 mid morning and 0.25 mid afternoon on to of the 0.5 at night. I found it made a huge difference. Then I read about the dangers of benzos and cut it back down to the 0.5mg dose at night.

About five weeks ago I decided to try it again, the effects were remakable. My involuntary movements stopped, my brainfog cleared, the stiffness in my hands went, my speech improved and most dramatically my gait improved. I have really bad gait problems, my legs spasm when I walk and my legs stiffen, I often look like I have Parkinson's.

I made a video to show this dramatic effect it had on me. I filmed myself before taking the dose and then 45 minutes later. You can see it here:

[video=youtube;LhLADys6F_k]http://www.youtube.com/watch?v=LhLADys6F_k[/video]

I functioned virtually normally for nearly four weeks. I was ok all the while the dose was effective, but my legs would stiffen and my other neuro problems would return as it wore off. I'd take the next dose and I'd be ok again after about 45 minutes. The only problem I had was the afternoon dose would make me sleep for a couple of hours. Every few days I found it had little or no effect and had to rest for the day, but after a days rest it seemed to work well again. I should have seen this as a warning sign...

On the third week I had to increase the dose to 2mg a day. I was taking 0.5 at night, 0.5 in the morning 0.5 , 0.5 about 1pm and another 0.5 about 7 pm. Sometime in week 4 it stopped working. No matter how much I took it made no difference. Worse still the effect had made me doubt my M.E. diagnosis again ( a regular occurance) so I did far too much. I had a bad crash. On my doctors advice I am going back to 0.5 at night.

It sounds like others experience had been like mine, an almost miracle cure like effect at the beginning, but it doesn't last. My problem is all the extra activity I was able to do seems to have made my M.E worse. I even have immune symptoms, something I rarely suffer from.

I am pleased it gave me a bit of a reprieve from my symptoms, I was able to walk my daughter down the aisle when she got married, and was able to do things with the family for a few weeks. I was even able to tolerate and enjoy spending time with my 2 grandchildren without suffering the after effects. But I think the extra activity it allowed me to take part in has led me to being in a worse condition than I was before.

I know that dotors are reluctant to prescribe benzos, but there are a number of neurological conditions that can only be treated effectively with benzos. Many of these conditions demand very high doses. Also every drug has side effects and many - including the anti-depressants doctors love to push on us - need to be tapered off from as suddenly stopping can cause bad reactions.

Paul