clonazepam and dementia...I have to quit???

[in1peace]

Ok....I've been great, rarely having anything resembling a panic attack for years. I've also been on 1mg of clonazepam twice a day since 2005. So now the bad news is that benzodiazepines are associated with dementia. Especially long term daily use. I'm sick to my stomach right now. I have to quit. I remember how debilitating panic attacks are. I feel like going off clonazepam will be like the end of my world. I am so scared. Anyone else being told they should be weaned off? I can't imagine the battle I'm in for. Very, very upset right now!! :scared15:

[Davit]

Interesting, I know how benzo's work, they put neurotransmitters to sleep. They don't kill them. Each synapse has more than one neurotransmitter though so some are always available. If they are helping could you go to every second day. All neurotransmitters would come back on line for a while every second day.

[MyNameIsTerry]

If you are referring to the one published in the BMJ in September 2014, there are some important statements to remember such as:

The researchers relied on a database maintained by the Quebec health insurance program. From it, they identified nearly 2,000 men and women over age 66 who had been diagnosed with Alzheimer’s disease. They randomly selected more than 7,000 others without Alzheimer’s who were matched for age and sex to those with the disease. Once the groups were set, the researchers looked at the drug prescriptions during the five to six years preceding the Alzheimer’s diagnosis.

AND

“Benzodiazepines are risky to use in older people because they can cause confusion and slow down mental processes, ” says Dr. Anne Fabiny, chief of geriatrics at Harvard-affiliated Cambridge Health Alliance. “However, although there is an association, we still can’t say that benzodiazepines actually cause Alzheimer’s,” she cautions.

AND

The researchers acknowledge that the use of benzodiazepines could be just a signal that people are trying to cope with anxiety and sleep disruption—two common symptoms of early Alzheimer’s disease. If that’s true, their use of a benzodiazepine may not be a factor in causing dementia but an indication it is already in progress.

So, they have only looked at a very limited period of time prior to onset. If Benzo's actually did cause it, wouldn't we be seeing more early onset being linked to them? They only studies people over 66 so it would seem the concern is more for people who are older than you.

[in1peace]

Davit and MyNameIsTerry,
Thank you for your responses!!

Davit,
I would love more info on how neurotransmitters work. I also have Narcolepsy. It would be beneficial for me to remove some medications from my system because of the Narcolepsy diagnosis. Most likely because physicians need to separate what's caused by Narcolepsy and what is caused by medication. I got Nuvigil and Adderall added to my regimen.
I talked to a counselor yesterday and she said that they are recommending weaning off benzodiazepines for a much longer period of time. She said sometimes they recommend years, because it takes that long for your brain to adjust from all the changes made by the drug.

MyNameIsTerry,
I read those quotes too. There are more studies than just the one. I'm also concerned that I got on a daily regimen of using it, when I should have only used for a short period of time. I'm 49. Been taking clonazepam for 10 years! I'm afraid to find out that I've done more harm than good. I'm not willing to go quietly into dementia, even if I might be predisposed to it. I hope I'm not!


Anything you want to share that may help me keep from freaking out would be great! I'm sending myself into a bad place with this!

[MyNameIsTerry]

I'm sure Davit will tell you about neurotransmitters, he's often talking about them!

There are people on here who have weaned off Benzo's so it would be worth keeping in touch with them for support. The Diazepam board has a few recent threads that shows some of the people who could help with that.

A slow taper over long periods is recommended for coming off many of the SSRI/SNRI's too based on how much and how long. So, it sounds sensible but its not just for Benzo's so it shows how caution is often a good idea to monitor people to see how they cope with the adjustments. What it is masking underneath in terms of anxiety also needs working on too.

There are earlier studies that I've seen regarding short term use of Benzo's and whether they pose a risk. I seem to recall they did find something similiar to the above study but it was a very short period of use and at a specific point in monitoring. I can't recall all the details without checking.

The thing I take from this though is that the latest study still mentions the fact they can't say for sure, only that there could be a link.

I can understand your concern though, its going to be scary to see studies like this on psychiatric illnesses of that level. The fact they seem to be issuing warnings for older people would suggest they have little concern for younger people, including yourself but that nagging doubt is going to be there as we all know it can mean they haven't determined a link yet.

Perhaps the thing to think is that at this point, there is no science to support any fact that you could be at risk. You have been on them 10 years and surely if you were at risk, you could have developed it before now? But you haven't and I think we have to look at something like that and use it as a positive against the doubt. You are now coming off them many years before you could enter the currently known at risk groups so that could easily mean you never experience it.

Realistically, there is no 100% here. So, there is the potential for worry to keep you in a cycle about it if you let it. Rationalising is important here. Think about how many people are given these drugs even on a short term basis? Is there a world crisis over an enourmous increase in dementia? Surely if these drugs increased our risks by the high %'s they are quoting in these studies, we should be seeing an epidemic level of new cases as the doctors were putting people on Benzo's long term or dishing them out without much understanding of them until about 20 years ago?

[in1peace]

Thank you MyNameIsTerry!

That helps, just reading your post. I almost had a real panic attack again. :blush:
I appreciate the time you took to think about my post. It never fails to amaze me when people care enough to talk to strangers about their shared health issues. I definitely will need support and will look at the other board you recommended!

I am also hoping that this new therapist will get me to a safe place in my thinking/understanding to become more powerful over anxiety and panic. I've tried before. Couldn't do it. But with new research, I'm starting to feel hopeful that I can come out of the state of anxiety that controls my life.

Thank you again!!

[MyNameIsTerry]

I used to attend charity walk-in groups for anxiety/depression and its amazing how much support you can get, just like these places, because everyone knows how difficult this all is and wouldn't want anyone else to go through it.

I hope your new therapist can help you to work through all this and recover. Its going to likely be tough but I'm sure you've had many tough times throughout this and you've made it through them so you can do this too.

From seeing what some of the people withdrawing from Benzo's have said, I have noticed they often seem to say it can be harder coming off the smaller doses than making the larger initial drops but it does differ for others. Thats why its worth asking their opinions as it could give you an idea of what you will go through and help you to weather it.

[in1peace]

Again thank you!! ��

[MyNameIsTerry]

Davit,
I would love more info on how neurotransmitters work. I also have Narcolepsy. It would be beneficial for me to remove some medications from my system because of the Narcolepsy diagnosis. Most likely because physicians need to separate what's caused by Narcolepsy and what is caused by medication. I got Nuvigil and Adderall added to my regimen.


Davit has started a thread up about some of this tonight:

http://www.nomorepanic.co.uk/showthread.php?t=170885

[chickenhawk]

I have just posted about this elsewhere on the forums, but found this. The dementia they are talking about is frontal temporal dementia which affects younger people than the other varieties, and strikes people in any age group :ohmy: but mostly 40s, 50s and later. There is no way to know if this will only affect some benzo users, or all, or how much you need to take, for how long. It is very very scary. And it applies to all the people taking tri-cyclics as well! I took imipramine 10mg daily for 12 months for fibromyalgia,before I stopped as it stopped working for me, but I know people who have been taking amitryptaline for years and years at high doses, including a woman in her 70s who is on 75mg daily, and has been for years, and is perfectly fine. My 85 year old mother takes one of the sedating antihistamines (also implicated) for sleep, and is also fine. Surely, if people were all getting dementia from the use of these meds we would hear more about it? Considering they are widely used by younger age groups. I know dementias of various types are increasing worldwide, but there are so many other causes for it. And surely, they would know if stopping the drug stops the risk, OR if you take them for years and then stop, and are perfectly fine, does the dementia start later? And if so, how could they blame the benzos when it could be caused by something else? It's a minefield of ifs and buts and what ifs.:unsure:

[Phill2]

I've been on 2 x 5mg benzo for 12 yrs now
Nothing wrong with me :wacko:

[MyNameIsTerry]

I have just posted about this elsewhere on the forums, but found this. The dementia they are talking about is frontal temporal dementia which affects younger people than the other varieties, and strikes people in any age group :ohmy: but mostly 40s, 50s and later. There is no way to know if this will only affect some benzo users, or all, or how much you need to take, for how long. It is very very scary. And it applies to all the people taking tri-cyclics as well! I took imipramine 10mg daily for 12 months for fibromyalgia,before I stopped as it stopped working for me, but I know people who have been taking amitryptaline for years and years at high doses, including a woman in her 70s who is on 75mg daily, and has been for years, and is perfectly fine. My 85 year old mother takes one of the sedating antihistamines (also implicated) for sleep, and is also fine. Surely, if people were all getting dementia from the use of these meds we would hear more about it? Considering they are widely used by younger age groups. I know dementias of various types are increasing worldwide, but there are so many other causes for it. And surely, they would know if stopping the drug stops the risk, OR if you take them for years and then stop, and are perfectly fine, does the dementia start later? And if so, how could they blame the benzos when it could be caused by something else? It's a minefield of ifs and buts and what ifs.:unsure:

Where have you read about it? Someone on here posted an article about this a few weeks back and the blog was pathetic as it didn't reference any study at all other than to mention the number of people in it. The funny thing was, it was the same number as the article I was talking about earlier in this thread which the person incharge of that research said they found NO link.

[chickenhawk]

Hi Terry, I'm trying to find it, it was a scholarly-type article, not a blog or comment on a forum. Will keep looking tomorrow, (its my bedtime now):)

[MyNameIsTerry]

Hi chickenhawk,

Ok, post it when you get chance.

I've just done a quick Google and all I get back seem to be what I've already seen after checking a few.

This comment is one that keeps coming up about people >65:

“While correlation certainly isn't causation, there’s ample reason to avoid this class of drug as a first-line therapy.”

But their argument is to avoid it due to the prevalence of falls.