They Dont Believe Me

 

Nearing completion of my 4th month.  Things have just gone down hill this month with no windows.  Waves to severe waves have consumed me, my family, my work, my therapist and my doctors.

 

I am starting to see cracks in support.  People dont believe me when I say there are no drugs to fix this.  Everyone wants me to take SSRI’s and/or other drugs.  They see me in so much pain and dont know what to do so they go to what they know - drugs.  It is frustrating.  I tell them what I need when they ask - to tell me I am healing and it will get better.  I am not sure they believe me when I say that is the support I need.

 

All of them keep asking ‘what do the ‘expert doctors’ recommend.’  They tell me not to rely on the internet or message boards.  I keep telling them the doctors dont understand and that I am doing the right thing.  I just need them to support me and provide reassurance that I am healing.

 

I am looking for concise but thorough documentation to help show them what I am going through and what I need.  I tried to show them a book but it was too long.  I showed them letters from others that made it through but they say it is not from an expert.  Is there anything out there that is just right.  That I can point to and say here - read this 4 page document.  It will tell you what I am going through and more importantly what I need.  That no medication or intervention will help other than time, distraction and positivity.

 

Please help.

The closest thing to an authoritative source is The Ashton Manual. I linked the chapter that I thought you might find most relevant. It's a weighty manual but well worth looking through even though you seem to know your stuff. If you take a look through it, you might find some good stuff to print and highlight to make it less of an intense read and get your point across. The Wikipedia article is actually pretty good and there's a quote there that exemplifies the point you want to make:

 

"Over-rapid withdrawal, lack of explanation, and failure to reassure individuals that they are experiencing temporary withdrawal symptoms led some people to experience increased panic and fears they are going mad, with some people developing a condition similar to post-traumatic stress disorder as a result. A slow withdrawal regimen, coupled with reassurance from family, friends, and peers improves the outcome.[6][18] According to a 2015 Cochrane review, cognitive behavior therapy plus taper was effective in achieving discontinuation in the short-term but the effect was not certain after six months.[99]"

 

The source that Wikipedia lists is actually the Ashton Manual, which I already linked.

 

Hope this helps. Another good strategy would be to look for a video on YouTube that backs up what you're saying. There are tonnes, good and bad. I have seen some good ones in myself but didn't save the link.

 

Sorry you're having this trouble. I hope they pull round. I know first hand how devastating a misunderstanding this can be. I'm one of those with "something similar to PTSD" that the quote mentions, but a lot better than I was.

A group of highly respected scientists gathered together to address our plight, its a long symposium but if your loved ones care about you it's worth their time and attention.

 

Thank you!  Oh my goodness Pam that video is 4 hours long.  I will watch every minute of it haha.

I've had exactly the same. More drugs to fix it. It's just the thinking of modern society, and why we are in such a mess.

 

When it comes to documentation. You could show them this http://www.btpinfo.org.uk/family-support

 

Or I've heard good things about the film "medicating normal". They have some stuff on YouTube too

That video is the best and the nurse Carrie is a member here - I don't want to give her username away, but I found it.

 

She has also been interviewed along with her husband Bernie by many podcasts etc.

 

I told my Dr about this and the psychiatrist at the hospital, they just thought I was crazy and why would I listen to "experts" in the states about this over Canadian experts.

 

The podcasts that are good are:

Geradine Burns- benzodiazepine awareness

DE Foster - Benzo Free

 

Youtube

Benzo Brains - Jocelyn - she has a bunch of amazing experts on that really explain the new research etc. I ignore some stuff about her that bothers other people (I won't mention what it is, as I don't want to offend). But she really does have some great interviews.

 

By watching the interviews with the pharmacologists, you really do see how these drugs impact the entire body and the damage that they can do!

 

These drugs are so old that they've never been tested the way that you would a new drug today.

 

hope this helps.

Oh, I've seen the movie Medicating Normal - really good, told the psych about that too, obviously didn't listen, as she wrote in my report that if my symptoms get worse (which they have) that it's all in my head - somatic symptom disorder.

 

if you go to their website, YT or FB pages, you can get info on upcoming screenings that you can watch for free.

I joined one night in Dec and asked a bunch of questions of the panel.

 

 

i gave this to my family members and think it helped somewhat

 

https://w-bad.org/family-and-friends-this-ones-for-you/

So sorry your support system is weakening.  Here is another site and repository of information, one that is made up of medical experts who are on a mission to help educate prescribers while also providing information for those injured. https://benzoreform.org/about-us/

 

Stay strong!

All good stuff!

I second w-bad!

And also Benzodiazapine Information Coalition! It is made by medical professionals who are trying to educate other medical professionals

https://www.benzoinfo.com/

 

This will put all arguments to rest: Show your friends and family this video from Dr. Ashdon and Dr. Lader: 

 

 

A group of highly respected scientists gathered together to address our plight, its a long symposium but if your loved ones care about you it's worth their time and attention.

 

 

Love the part where they talk about how benzos were never studied beyond their impact of gaba in the brain and go on to show that image of the body containing gaba receptors all over.

 

Also that most benzos probably wouldn't pass basic pharmacology testing if they were introduced today.

And this might could help with communications and appropriate discontinuation protocols and support..

 

https://www.benzoinfo.com/2016/09/05/dont-harm-them-twice-when-the-language-surrounding-benzodiazepines-adds-insult-to-injury-part-1/

 

 

***

Unless one has slipped by me, we really could do with a compilation in a orange  “sticky thread”..

 

I had to convince my hubby in the beginning for the first couple of months while I was in acute. I understand how you feel. It's very hard to be convincing people while you feel like total heck.

 

He runs his own company. He's very busy. So, I printed it out and he read it while he was on the toilet. Sorry TMI, but he found the time to read it is my point.

 

I just asked my husband about this now. He said: "I know my wife.. I know who you are and that your suffering and behavior was not 'who you are. Not your norm'. Also a combination of documentation written by doctors (like the Benzodiazepine Information Coalition) and testimonies from people who've been through it." - Helped my husband get his "enlightening/light bulb moment."

 

And you know what - it benefits my husband too because he now knows to steer clear of medications such as these. This is true to the point that he is dealing with a kidney stone for a week now, and he won't take the Percicet they gave him unless he absolutely has to. He's using Motin instead. I know in his casei t's an opioid, not a benzo, but still the importance of not getting into a dangerous situation with addictive medications, and just how easily someone can innocently can fall into that when taking medications as prescribed -- my husband benefits from knowing that.

https://l.facebook.com/l.php?u=https%3A%2F%2Fvimeo.com%2F188181193%3Ffbclid%3DIwAR1ty4hXbb7hRGmdi_laBWub_fK_UtYWTJFdXaZuWcN3DVLAJYvpbJWKYNc&h=AT2ydYgVSUF3Y4qroSTzsAFAjtgaq0XUR6PRyYHU3BAgMxwaIv1AsBWCe8e0tPMfCqcbY-HOlJHZf9Xu6INX6cmEeY25qWvwBeQB3U4MoAx4uJzs4cqno5YwpX1MmMZrlBM

 

This video is worth showing them. There is a shorter version which is 15 minutes long, that you can access once you click on the link.

No doctors or nurses are trained in medical school for benzos. Hand them that piece of info when they tell you they dont believe you. You have more training and knowledge about benzos than any of them do. Please dont take an SSRI either.

BIC - benzo information coalition...good info in there even for providers.