Physician speaks on her own benzodiazepine experience

[[So...]]

I actually posted this same link in the Chewing The Fat section, but then saw a post here. Agreed with all the comments - I think it will only be when more doctors feel the effects of these drugs that they will actually start to understand - and believe - our suffering. It is one thing to go through benzo withdrawal/recovery, but the gas on the fire is when doctors don't believe us!

[[sl...]]

Thank you Hope for sharing your story! Your story sounds almost exactly like mine.  Like you, my 2 little girls and my husband have kept me from going down the darkest path. 

 

I have seen so many doctors and only a few have recognized my symptoms as benzo withdrawal syndrome.  I would love to revisit one in particular, a pharmacist, who told me it would probably take 6-18 months to heal.  I wonder where she got her information from?  Probably patients she encountered while getting their refills, but I would like to know if there are pharmacy schools out there sharing more updated information on the drugs they are teaching about. If you can believe it, I have a doctor-friend who will not believe for a second that any of what I am going through is benzo related.  He takes Clonazepam himself and says that there is no way that my "microdose" (.5mg of clonazepam) could have caused this.  He also believes that my symptoms might be a result of being brainwashed by sites like this... even though all of my symptoms started several months before I found this place!  I was never a hypochondriac before this hell so it is so heartbreaking to have this sort of judgment from people, especially from someone with an MD! 

 

Anyway, thanks again and I wish you all the very best.

[[Ru...]]

Sleepless, how long has your friend been taking benzos? Has he ever tried to come off? I imagine he might change his tune when he decides he's had enough of the poison.

 

Thank you so much for posting this. I am going to take it to my doctor with a poster to put up in the waiting room. The trouble is I cant for the life of me remember who posted the poster or where I can find it. It was about the side effects of benzos. Anyone have a clue?

 

[[Ce...]]

http://www.benzoinfo.com/single-post/2016/10/15/An-Open-Letter-Cardiologist-and-Cancer-Survivor-Speaks-Out-on-Dangers-of-Benzodiazepines-and-Her-Personal-Withdrawal-Story

[[ma...]]

Thanks everybody for the shares and well wishes. I wish I could reply to you all individually but I'm having a day. But I do wish you all a speedy recovery. I posted my story for all of us.

 

I hope today is a better day for you, don't worry about replies Hope , I think everyone will understand.  Thank you so much for speaking out, and telling your story, I think you are a hero.

 

Magrita

[[Be...]]

Thanks everybody for the shares and well wishes. I wish I could reply to you all individually but I'm having a day. But I do wish you all a speedy recovery. I posted my story for all of us.

 

Hello Hope!

 

Thank-you so very much for posting your story. 

 

There are so many of us just like you...no history of drug dependence & very sensitive to withdrawal.

 

I truly hope that your status as a physician will help get the word out of how horrible withdrawal can be for some,  as many of us are still struggling years after cessation 

 

Many blessing to you my friend, you are an 

[[La...]]

Thank you Hope for sharing your story! Your story sounds almost exactly like mine.  Like you, my 2 little girls and my husband have kept me from going down the darkest path. 

 

I have seen so many doctors and only a few have recognized my symptoms as benzo withdrawal syndrome.  I would love to revisit one in particular, a pharmacist, who told me it would probably take 6-18 months to heal.  I wonder where she got her information from?  Probably patients she encountered while getting their refills, but I would like to know if there are pharmacy schools out there sharing more updated information on the drugs they are teaching about. If you can believe it, I have a doctor-friend who will not believe for a second that any of what I am going through is benzo related.  He takes Clonazepam himself and says that there is no way that my "microdose" (.5mg of clonazepam) could have caused this.  He also believes that my symptoms might be a result of being brainwashed by sites like this... even though all of my symptoms started several months before I found this place!  I was never a hypochondriac before this hell so it is so heartbreaking to have this sort of judgment from people, especially from someone with an MD! 

 

Anyway, thanks again and I wish you all the very best.

 

Sleepless, here's a link to the British National Formulary's benzodiazepines page, and if you look in the "Dependence and Withdrawal" section, there's a reference to "6-18 months". It also states that some people "may take longer" than that.

 

http://www.benzo.org.uk/BNF.htm

[[sl...]]

Lapis-  thanks for the link.  I wonder how many US docs are in the loop as that is a British study.  I've asked several doctors and none of them know who heather Ashton is.  I asked one in particular if he wanted me to jot down her name for him so he could look it up.  His answer was, "I don't have time for anymore manuals."  Jerk. 

 

Rubiks- my doctor-friend who is on clonazepam has been tsking them for 3 years or so, at night.  He is also an alcoholic and I firmly beleive that his obsessive behavior started because of benzo use.  Too much of a coincidence- but he will never see it that way.  Whatever.  I gave up trying to help him see the ugly truth about these drugs and I'm definitely done discussing any of this with him after his rediculous implications.  Oh, BTW, I can partially thank this guy for my own clonazepam use (thanks dude).  I put 99% of the blame on my doctor, but this guy gave me an ambien a week before clonazepam crossed my path and he clued me in on the fact that there were other sleeping pill (benzos) options out there.  I doubt I would have done anything for my minor insomnia if it weren't for his glorification of sleeping pills. 

[[La...]]

Hey Sleepless, it's not a study, but more of a guideline for medication. There's likely an equivalent there in the United States, and we have one here in Canada. Here's the description:

 

"The September 2016 British National Formulary (BNF) provides up-to-date, practical guidance on prescribing, dispensing, and administering medicines. This essential reference reflects current best practice as well as legal and professional guidelines relating to the uses of medicines."

[[Ho...]]

Hey Sleepless, it's not a study, but more of a guideline for medication. There's likely an equivalent there in the United States, and we have one here in Canada. Here's the description:

 

"The September 2016 British National Formulary (BNF) provides up-to-date, practical guidance on prescribing, dispensing, and administering medicines. This essential reference reflects current best practice as well as legal and professional guidelines relating to the uses of medicines."

 

I haven't been able to find a national statement regarding U.S. Guidelines for prescribing of

Benzos. A quick Google search shows that there are CDC guidelines for the prescribing of opiates when I search for benzo guidelines. The few benzo protocols I'm finding are institution specific. I know the VA just put out some guidelines regarding the use of benzos in veterans. I honestly think there is no centralized stance here in the U.S. but would have to do some more digging to

comfirm that. I have an appt with my pdoc next week, maybe he will know something. He is very smart and kind and a good psychiatrist. However, he had never heard of Heather Ashton either. I brought in a copy of the Ashton manual for him to look at and he had never seen it. The standard here is to taper people off short acting benzos with clonazepam, which he wanted to do for me, but I was scared of it from everything I've read on here. So he let me do the Valium taper instead.

[[La...]]

I'll be interested to hear what you find out, Hope. I just found the Canadian version and will try to do a bit more research to see what it says about benzos. The page that I shared from the BNF is a good one for people to print out and share with their own doctors -- that is, if people think their doctors would be interested and willing to read it. The UK is obviously ahead of us on this issue.

[[Gr...]]

Sleepless - your comment reminded me of the Psych Doc that I saw last and his wife. I knew her personally and she was taking Clonazapam at night to help sleep (off and on). Not sure how long this was going on but I wonder if it's caught up to her yet. Maybe then her husband will listen and remember my situation and finally do some research on this huge problem.

[[Fi...]]

Christine--thank you for speaking up and telling your story.  I really hope other doctors will pay attention.  I totally identified with your feeling that if this could happen to you, it could happen to anyone.  I feel the same. I've put a link to your story on my author's website.  Can't promise amazing traffic, but we have to keep throwing those pebbles in the water and hoping for ripples, right? 

 

 

[[La...]]

I wonder if such an article could be published in a medical journal or a newspaper. It would be great to give it larger exposure.

[[so...]]

Hey Hope, you are doing some real good. Last week I had a pretty bad blow up with my cousin, as I felt she was not understanding the benzo thing.

 

I posted your letter on my FB page, and just got this text from her: "Great FB post from the doctor. Legitimized all you have said, so I will try to not be one of those family members alienated from your agony".

 

This is just what I needed - to be believed. Thank you so much. 

[[Ho...]]

Hey Hope, you are doing some real good. Last week I had a pretty bad blow up with my cousin, as I felt she was not understanding the benzo thing.

 

I posted your letter on my FB page, and just got this text from her: "Great FB post from the doctor. Legitimized all you have said, so I will try to not be one of those family members alienated from your agony".

 

This is just what I needed - to be believed. Thank you so much. 

 

That is so wonderful SS!

[[Ms...]]

Hey Hope, you are doing some real good. Last week I had a pretty bad blow up with my cousin, as I felt she was not understanding the benzo thing.

 

I posted your letter on my FB page, and just got this text from her: "Great FB post from the doctor. Legitimized all you have said, so I will try to not be one of those family members alienated from your agony".

 

This is just what I needed - to be believed. Thank you so much. 

 

 

Oh, I love this, all of this, I'm so glad her letter was able to bring some help to your family's understanding.

That is so wonderful SS!

[[Ho...]]

Hey Hope, you are doing some real good. Last week I had a pretty bad blow up with my cousin, as I felt she was not understanding the benzo thing.

 

I posted your letter on my FB page, and just got this text from her: "Great FB post from the doctor. Legitimized all you have said, so I will try to not be one of those family members alienated from your agony".

 

This is just what I needed - to be believed. Thank you so much. 

 

 

Oh, I love this, all of this, I'm so glad her letter was able to bring some help to your family's understanding.

That is so wonderful SS!

 

It took me quite some time to convince my own family what I am going through.  I'm not sure they still quite fully get it, but I got my mom and husband to do some reading on the subject, and at least they don't think I'm full blown crazy any more.  So I'm glad my letter helped. When I was diagnosed with cancer, I had my psychiatrist write a nice letter to all my cancer care providers explaining that I was not a substance abuser, had become accidentally dependent on benzos, and was tapering off slowly due to extreme sensitivity to benzo withdrawal symptoms.  I asked him to write the letter for me after I told my oncologist I was tapering off Valium and it was causing withdrawal symptoms, and she asked me if the Valium was helping my anxiety  Um no, I'm in withdrawal.

[[Ki...]]

You rock Doc! Thanks for speaking out! We need advocates like you. FWIW, I too am a breast cancer survivor, mastectomy with reconstruction, and that was cake compared to benzo w/d.

 

When you are well, you may want to consider testifying in front of the MA legislature's committee on mental health and substance abuse. They were considering a bill which would require written informed consent. The bill died in committee last April, but may be reintroduced in January. Totally understandable if you don't feel up to this by then, but perhaps you can give the bill's sponsor permission to enter your letter as your testimony. Email your letter to Garrett.burns@mahouse.gov and tell him you want your letter submitted as testimony if the benzo bill is reintroduced in Massachuesetts.

 

Good luck and God bless you!

[[Gr...]]

Hey Hope, you are doing some real good. Last week I had a pretty bad blow up with my cousin, as I felt she was not understanding the benzo thing.

 

I posted your letter on my FB page, and just got this text from her: "Great FB post from the doctor. Legitimized all you have said, so I will try to not be one of those family members alienated from your agony".

 

This is just what I needed - to be believed. Thank you so much. 

 

Seeker, I am thrilled for you! It is absolutely wonderful that that family member has come around after seeing your Facebook post. I posted this story also on my Facebook page and nobody liked it or shared it other than my husband who understands what I'm going through. And I have family that just doesn't get it. But it's so encouraging to see that your post has helped you. 

[[Ho...]]

You rock Doc! Thanks for speaking out! We need advocates like you. FWIW, I too am a breast cancer survivor, mastectomy with reconstruction, and that was cake compared to benzo w/d.

 

When you are well, you may want to consider testifying in front of the MA legislature's committee on mental health and substance abuse. They were considering a bill which would require written informed consent. The bill died in committee last April, but may be reintroduced in January. Totally understandable if you don't feel up to this by then, but perhaps you can give the bill's sponsor permission to enter your letter as your testimony. Email your letter to Garrett.burns@mahouse.gov and tell him you want your letter submitted as testimony if the benzo bill is reintroduced in Massachuesetts.

 

Good luck and God bless you!

 

Thanks Kickin It. Nice to meet a fellow survivor. I can definitely email my story to be submitted as testimony. We are trying to get something similar off the ground in my home state of Texas and this would help pave the way!

[[be...]]

Thank you so much for posting this. I am going to take it to my doctor with a poster to put up in the waiting room. The trouble is I cant for the life of me remember who posted the poster or where I can find it. It was about the side effects of benzos. Anyone have a clue?

 

Thank you so much Hope for telling your story in the Open Letter!

 

Rubiks, is this the poster you were looking for?  http://www.benzobuddies.org/forum/index.php?topic=165785.0

[[Ru...]]

Yes thank you benzohono.

Sleepless, this guy you are talking about will reach tolerance WD soon enough and will then turn to other meds most probably. I obviously hope this is not the case, but I wouldnt be at all surprised if he doesnt come crying to you in a few years. By then you will be 100% better.

That will be a bitter-sweet time.

[[so...]]

Hey Hope, you are doing some real good. Last week I had a pretty bad blow up with my cousin, as I felt she was not understanding the benzo thing.

 

I posted your letter on my FB page, and just got this text from her: "Great FB post from the doctor. Legitimized all you have said, so I will try to not be one of those family members alienated from your agony".

 

This is just what I needed - to be believed. Thank you so much. 

 

Seeker, I am thrilled for you! It is absolutely wonderful that that family member has come around after seeing your Facebook post. I posted this story also on my Facebook page and nobody liked it or shared it other than my husband who understands what I'm going through. And I have family that just doesn't get it. But it's so encouraging to see that your post has helped you. 

 

 

It has helped me a lot that my cousin now understands, and I've gotten some nice replies from some of my friends. No response at all from my two siblings or even my daughter though. A bit disappointed, but I guess you can't win them all. They'd rather post photos of their fancy drinks on the pier and "like" pics of their friends at football games. 

[[Co...]]

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