Do we all heal ? To those who do not.

[[Up...]]

Here’s a suggestion to all who claim this.  Email every coach, BIC, Geraldine Burns, Dr. Witt-Doerring and Baylissa in your own words tell them your story.  Stand up and be counted.  Don’t hide in the shadows.  Let them know what is going on.  Did you take any more benzos, psych meds, antibiotics, have surgery or any other medication, supplements, THC or CBD, alcohol, diets, stress after original taper or ct?  They need the truth.   Be prepared to answer questions such as a complete drug history, health history and is anything better? Don’t depend on others to speak for you.  It costs nothing to do so.  
 

Also remember not everything can be blamed on a benzo.  If you were predispositioned to have a medical condition whether or not you took a benzo you were still going to get it.  Check your family medical history.  Certain conditions run in families.  I was tested for every thing under the sun because of the health anxiety I had. I was tested for Cancer, immune deficiency, hormone deficiency, MS, Lupus, CFS, Heart related issues, stomach issues, CT scan of my brain, MRI, blood work kidney, liver function you name it I tested it.  Guess what, NOTHING WAS FOUND!  It was withdrawal.  The whole darn mess.   
 

If enough of you tell your stories  then it can’t be denied.  Type it once copy and paste it to each person or entity. You have nothing to lose.  But sitting around waiting for a miracle and posting daily how bad it is has gotten nothing accomplished.  Try something different.   Advocate for yourself!  Yes I do believe we do get better because I lived it.  I can’t say I have not seen any healing in myself or every person who CT’d at the time I was active on this site. 
 

Stay in your world on your journey.  Don’t get caught in the obsessive rumination .  Do what ever you can to interrupt the cycle.  DONT LET A UNEDUCATED PERSON DIAGNOSE YOU.  STOP GOOGLING YOUR SX!  GO TO A DOCTOR GET EVERY TEST DONE AND ACCEPT THE FACTS!  
 

✌

Edited March 26 by [Up...]

[[Ms...]]

On 25/03/2024 at 16:12, [[U...] said:

Stay in your world on your journey.  Don’t get caught in the obsessive rumination .  Do what ever you can to interrupt the cycle.  DONT LET A UNEDUCATED PERSON DIAGNOSE YOU.  STOP GOOGLING YOUR SX!  GO TO A DOCTOR GET EVERY TEST DONE AND ACCEPT THE FACTS!  
 

✌

This is such a privileged take. Do you think most people really disabled by this harm can get to a doctor to get every test done? It also reads like you're blaming people for being harmed because you don't want to deal with the cognitive dissonance that some harm doesn't heal. If this situation doesn't apply to you because you healed, be grateful, but you don't have to have an opinion on it.

[[Up...]]

45 minutes ago, [[M...] said:

This is such a privileged take. Do you think most people really disabled by this harm can get to a doctor to get every test done? It also reads like you're blaming people for being harmed because you don't want to deal with the cognitive dissonance that some harm doesn't heal. If this situation doesn't apply to you because you healed, be grateful, but you don't have to have an opinion on it.

Who are you to tell me not to have an opinion?  Here you are posting yours.  You do and believe what you want and I will too!  You are a good example as to why people leave groups .  I believe most coaches, therapists, admins and mods would advise to get checked out by a doctor and not assume everything is related.  
 

Privileged? Blaming? Nope nice try though. 
 

if Colin or any Admin has a problem with my post trust that they would have jumped in.  I don’t need you to do there job and they don’t either. 
 

Have a great day!✌🏼
 

Thanks 

Edited April 3 by [Up...]

[[Ms...]]

54 minutes ago, [[U...] said:

Who are you to tell me not to have an opinion?  Here you are posting yours.  You do and believe what you want and I will too!  You are a good example as to why people leave groups .  I believe most coaches, therapists, admins and mods would advise to get checked out by a doctor and not assume everything is related.  
 

Privileged? Blaming? Nope nice try though. 
 

if Colin or any Admin has a problem with my post trust that they would have jumped in.  I don’t need you to do there job and they don’t either. 
 

Have a great day!✌🏼
 

Thanks 

 

Sure, everyone would advise seeing a doctor, but that's missing the point! How are they going to even get the testing? Just don't be sick that day? Being healthy enough to even go to the doctor and undergo testing is beyond the ability of many severely harmed. And, to be clear, as you suggested, I'm not assuming the role of an admin; I'm simply pointing out how your minimizing, privledged words can be perceived by others. Frankly, comments like yours are why I rarely participate in support groups. You say you are healed, but I am not. Who needs the support group more?

While you're entitled to your opinion, it's important to recognize that it comes from a place of privilege, with a perspective that is entirely irrelevant to those who are suffering for reasons unrelated to what you've listed. The reality is that benzo harm, for some, is incredibly severe and long-lasting. Nobody should be told their suffering is something else just to make someone else comfortable. Your response displayed a total lack of reflection and pure defensiveness so I won't engage further.

 

[[Wa...]]

I would like to offer an opinion, a perspective, if that is okay. 

I am 5 years off and do not come here anymore because I decided a long time ago that it just didn't serve me to marinate in symptoms and talking of suffering every day. The support was great for the first 18 months and then after setbacks and things, I had to choose to go my own way. I didn't want to reinforce the damage and trauma that has already been so chemically ingrained in me. That was just what is best for me.  But I saw this thread and it made me think of my mom.

 

She developed breast cancer in her early 60's and she fought like hell to survive it. The chemo was so aggressive it actually nearly killed her. She eventually recovered as much as she was going to and tried living her best life for 9 years cancer free until pancreatic cancer took her. I saw that her health was never the same after chemo. I saw that she would always tire easily, always be at risk for developing secondary conditions, and she never fully got back to where she was after what she went through. But if she were here today she would probably say that she got back to 80% and was able to function and travel and live with limitations and enjoy things as best she could. My point is that she was never going to be "all the way healed" or back to 100%. It wasn't going to happen.

I think of that quite often in this experience as I am still nowhere near even 80% and deal with and wonder about the very fears posted here. Will I ever be okay? Will I ever be me again or feel like a real human being? Is this permanent? Are the coaches wrong? How much more can I lose and grieve? Where does it all end and will it every end? All the things. The answer is that I don't know. I don't know for me and I wouldn't ever presume to know for someone else. But I hope to get to a functional life at some point. A life worth living even with limitations and never being the exact same again. 

I know cancer isn't the same. Nothing comes close to this brutal existence we share here. But I choose to believe that healing is possible and I focus on improvements and will keep fighting. I hope you will, too and I hope we can support each other. 

[[Md...]]

On 10/03/2024 at 04:53, [[A...] said:

@[Md...]..this "rare neuropathic condition" you have. What is it called?

So sorry for the late response.

Doctors don't quite know, so they have labelled it a few things: Aytpical Facial Pain, Post Traumatic Trigeminal Neuropathy, Type 2 Trigeminal Neuralgia, whatevever. Even the "experts" (and there are none when it comes to this condition) don't quite know how to deal with it, and it doesn't help that they keep changing the terminology. It was originally termed Atypical Odontalgia, but that term is supposedly obsolete now. 

Basically, the literature (which is nothing short of a bad joke) on this condition basically just states that it is some type of rare neuropathy...but in the face. 

There are no surgeries to correct this, and the only way the rare and few doctors that have come across it usually just prescribe anti siezure medications (including benzos), or antidepressants (especially TCAs).

Sometimes botox injections help. Sometimes SPG blocks help, but these are just band-aids, and there is no known cure.

My benzo psych is Dr Josef, and he himself even admitted that I am stuck between a rock and a hard place. 

It's funny, but I never thought I would be envious of people who only had to endure through benzo withdrawal.

Then again, I never thought I would be in this situation to begin with.

This is why I wonder If i should just stay on benzos indefinitely, or continue to taper in hopes that the pain doesn't come back full throttle, because it's constant pain that no one can live with.

If you're really interested, this is probably the best presentation of the condition. I bookmarked it, so you really only need to watch the first 10 minutes (if that) to get a somewhat of an understanding of it.

With all that said, my goal is to get off benzos and beat the odds of this condition. 

Edited April 7 by [Md...]