Author Topic: 3 years off - So much better!!  (Read 2077 times)

[Buddie]

3 years off - So much better!!
« on: February 22, 2022, 04:19:09 pm »
Iím 3 years off of Clonazepam today (2/22/22) and I donít want to waste space with details of my taper and withdrawal but I will be happy to answer questions regarding both.  BenzoBuddies was the light that saved my life one night while searching the internet for the cause of my crazy symptoms.  I am one of the many that had never considered the medication to be at the root of all that was happening in my mind and body, so finding a community of people who were having similar experiences, and then having access to the information from those who had recovered/were recovering is what kept me in this world.  The experience was still horrific but I no longer felt alone as I finally knew what was going on.  I posted mainly on the ďUnder .125 Klonopin ClubĒ thread where I found great support.

What this did to my brain and body is maddening. But the hardest part for me during the taper and the acute stage was the emotional impact of feeling like there was no one fighting for me.  No one advocating for me.  That I was the one having to discern how to proceed. That I was the one, the one with the broken brain, having to make all the decisions about how to help me. I knew my ďillnessĒ made others uncomfortable because they didnít know how to help.  I had to counsel others on how to respond to me being in pain.  This caused a lot of anger and deep sadness that I have since worked through, but it was my experience and my lesson.

But you know what, I did it.  And I am 1000 times mentally/emotionally stronger and more capable of living in this world now.  I canít imagine NOT having had this experience.  Without it, Iíd probably still be unhappy and involved in a cycle of busy-ness.  I was FORCED to slow down by things outside of my control.  I was taken out of the BUSY-ness of life, the outward achievement  that serves as some type of status symbol and sense of purpose for so many.  I had to face the uncertainty and the loneliness and isolation that comes with not being well, from feeling abandoned and discarded because you canít keep up with the rest of society. I was forced to deal with the reality of having lived a previously active "successful" life and then have it all taken away.  I was forced to go deeply within because there was no place else to go!  And I found so much inside.

The biggest game-changers for me started at 2 years off.  There was healing happening all along but it was the first time I noticed such rapid progress.  I started Neurofeedback at this time and it was amazing  for me.  I don't know if it would have had a similar impact earlier in the process, not sure if my system would have been too sensitive to handle it, but at 2 years off my brain was healed enough in order to benefit from this type of treatment. The initial assessment showed that all areas of my brain were suppressed similar to a chemo patient or someone who hadnít recovered from anesthesia.  My brain waves were not balanced and seemed to be stuck in a high-beta state (fight or flight) and I have learned that when the brain is stuck in fight or flight, all kinds of inflammatory response are activated in the body as the brain prepares for physical injury.  Having someone validate what had happened in my brain, along with being able to see it changing throughout the treatments and then actually noticing the improvements in my daily life was powerful! After 4 months of treatment, we balanced the brain waves and got all areas of the brain unsuppressed and my system definitely calmed down.

The other big game changer was finding an excellent trauma therapist to help me deal with the medical injury as well as how to live in this world with the resulting chronic illness.  I am so well versed in the nervous system now and can immediately notice when itís dysregulated and can then find way to calm it.  In doing this work, my emotional triggers have lessened allowing the body to continue to heal without the added stress.  This mind-body work has become so fascinating to me that I want to become some type of somatic therapist who addresses the mind, body and spirit to facilitate healing.

Despite the fact that I am not 100% physically recovered, I am so much better and am able to function at a level with which Iím comfortable. I have never felt as happy or as free as I do now.  Please hold on and keep fighting for yourself.  It gets better!!!  I spent months/years on the couch so sometimes that fighting looks like youíre not taking action, but when the nervous system needs as little stimuli as possible, resting is indeed the best action to take.  What I know to be true from this experience is that there are people who can help. They might not be the people who are currently in your life and you might not find them when you think you need them most, but there are people out there who are compassionate and who will believe you and who can make a difference.  When you canít do anything else, breathe in and breathe out.  And then do it again.  If you can handle it, sit in the sun, it is so healing.  Let nature heal you.  Hold on.  Forgive yourself and others.  Cry.  Feel all your emotions and release them.  Move your body if you can.  Grieve your former self and celebrate the [...] you are.  I understand the suffering and I love you all and am rooting for you from the depths of my soul!
Suggestions, opinions and/or advice provided by the author of this post should not be regarded as medical advice; nor should it substitute for professional medical care. Consult your doctor before making any changes to your medication. Please read our Community Policy Documents board for further information.

[Buddie]

Re: 3 years off - So much better!!
« Reply #1 on: February 22, 2022, 04:51:32 pm »
Wow, what a powerful story, thank you so much for sharing it with us!

I love how you looked within and found so much, I'm going to send another member here who is mourning the life they thought they were headed toward, your story provides hope that bumps in the road can lead to even better things.
Suggestions, opinions and/or advice provided by the author of this post should not be regarded as medical advice; nor should it substitute for professional medical care. Consult your doctor before making any changes to your medication. Please read our Community Policy Documents board for further information.

[Buddie]

Re: 3 years off - So much better!!
« Reply #2 on: February 22, 2022, 04:52:21 pm »
Thank you so much for your success story and for sharing it.
I am three years off too and had hoped to be posting my success story but an antibiotic has taken that from me...for now. It's not over yet!

I'm wondering if you are willing to share more information about the Neurofeedback. Did you need to get a referral from a doctor? Can you talk a little about the treatments, cost, what that involved?

I need to pull out of these last setbacks before my brain can handle something like that but I am wondering if it could be beneficial.

Thank you and best of luck!!!! :smitten:
Suggestions, opinions and/or advice provided by the author of this post should not be regarded as medical advice; nor should it substitute for professional medical care. Consult your doctor before making any changes to your medication. Please read our Community Policy Documents board for further information.

[Buddie]

Re: 3 years off - So much better!!
« Reply #3 on: February 22, 2022, 06:19:20 pm »
The fight or flight body preparing for an injury makes so much sense why we have all these inflammatory, autoimmune like symptoms. I don't know why it clicks so well when described that way.

Congrats on healing and bringing us good news!
Suggestions, opinions and/or advice provided by the author of this post should not be regarded as medical advice; nor should it substitute for professional medical care. Consult your doctor before making any changes to your medication. Please read our Community Policy Documents board for further information.

[Buddie]

Re: 3 years off - So much better!!
« Reply #4 on: February 22, 2022, 06:33:27 pm »
KristenM,

Thank you so much for sharing your journey.

I resonate with what you have said. I also believe that I came away with a lot of positives from what was a very challenging and difficult process. It's great to not sweat the small stuff and find something to appreciate every single day.

I wish you the best in with your continued recovery. Enjoy your life!

[...]  :smitten:
Suggestions, opinions and/or advice provided by the author of this post should not be regarded as medical advice; nor should it substitute for professional medical care. Consult your doctor before making any changes to your medication. Please read our Community Policy Documents board for further information.

[Buddie]

Re: 3 years off - So much better!!
« Reply #5 on: February 22, 2022, 08:57:41 pm »
Thank you so much for your success story and for sharing it.
I am three years off too and had hoped to be posting my success story but an antibiotic has taken that from me...for now. It's not over yet!

I'm wondering if you are willing to share more information about the Neurofeedback. Did you need to get a referral from a doctor? Can you talk a little about the treatments, cost, what that involved?

I need to pull out of these last setbacks before my brain can handle something like that but I am wondering if it could be beneficial.

Thank you and best of luck!!!! :smitten:

I'm so sorry to hear about the setback from the antibiotic!  I think our nervous systems are so sensitive that the foods/medications/supplements that help most are just detected as threats and our bodies respond accordingly.  In terms of Neurofeedback, it was not covered by insurance and I did not need a referral.  My primary care doctor recommended a practitioner she knew of when I expressed interest.  It was expensive at $150 per session.  I went two times a week the first two weeks and then once a week for two months and then every other week until the end.  It started with an initial assessment which included an analysis of the amplitude and frequency of my brainwaves at different sites in my brain.  I can't really go into much more detail about that because I don't understand it all.  The brain re-training treatments consisted of being hooked up to sensors at different spots on my head and then listening to music or completing different visual activities that were not done on the conscious level.  For example I would listen to music that would only play when my brain was in a certain pre-set brain wave parameter.  I couldn't consciously control when I heard the music but my brain would be working to make the connections it needed in order to hear the music.  It was sometimes tiring and when I started the whole process I was very fatigued, but by the end I had so much more energy. I hope that helps and I wish you continued healing!
Suggestions, opinions and/or advice provided by the author of this post should not be regarded as medical advice; nor should it substitute for professional medical care. Consult your doctor before making any changes to your medication. Please read our Community Policy Documents board for further information.

[Buddie]

Re: 3 years off - So much better!!
« Reply #6 on: February 22, 2022, 09:15:06 pm »
The fight or flight body preparing for an injury makes so much sense why we have all these inflammatory, autoimmune like symptoms. I don't know why it clicks so well when described that way.

Congrats on healing and bringing us good news!

Right?  I heard that a while back and it clicked for me too.  Glad to pass it on.  Keep going, [...]!
Suggestions, opinions and/or advice provided by the author of this post should not be regarded as medical advice; nor should it substitute for professional medical care. Consult your doctor before making any changes to your medication. Please read our Community Policy Documents board for further information.

[Buddie]

Re: 3 years off - So much better!!
« Reply #7 on: February 22, 2022, 09:45:54 pm »
KrisinM!

Your success story couldn't have come at a better time. I think A LOT of us are struggling mightily right now. I know I am at 8 1/2 months off all meds.  This gives me hope.  I noticed you said you spent a weeks and months on the couch.  Sadly, I do too and I used to be an athlete of sorts so this has been crushing to me.  The day in and day out unpredictability, discomfort, pain, etc becomes hard to fathom at times.  I'll be reading your story many times.  I may check into neurofeedback later when I can handle more.  I don't think I could count on being able to get out to the appointments just yet. But it's a great suggestion for later.

Thank you so much for sharing your good news with us and for spending time writing such an eloquent history.  I'm so glad you can enjoy your life and really live now.

Thanks,
Helen
Suggestions, opinions and/or advice provided by the author of this post should not be regarded as medical advice; nor should it substitute for professional medical care. Consult your doctor before making any changes to your medication. Please read our Community Policy Documents board for further information.

[Buddie]

Re: 3 years off - So much better!!
« Reply #8 on: February 22, 2022, 10:29:15 pm »
KrisinM!

Your success story couldn't have come at a better time. I think A LOT of us are struggling mightily right now. I know I am at 8 1/2 months off all meds.  This gives me hope.  I noticed you said you spent a weeks and months on the couch.  Sadly, I do too and I used to be an athlete of sorts so this has been crushing to me.  The day in and day out unpredictability, discomfort, pain, etc becomes hard to fathom at times.  I'll be reading your story many times.  I may check into neurofeedback later when I can handle more.  I don't think I could count on being able to get out to the appointments just yet. But it's a great suggestion for later.

Thank you so much for sharing your good news with us and for spending time writing such an eloquent history.  I'm so glad you can enjoy your life and really live now.

Thanks,
Helen

Thank YOU Helen for your kind words.  It means more to me than you know to be able to finally share my success story.  I was also an athlete, long-distance runner, and not being able to run was soul-crushing.  I remember crying a few years back and just pleading with a higher power to let me be able to go for a walk outside.  My body will probably never be able to handle the running I once did but I can enjoy walking and new types of movement daily and I have a better understanding of what my body needs to feel it's best.  You are healing too and I know you will get to the point where the pain and uncertainty of what you can do becomes less and less.  Keep being kind to yourself.  I know how difficult this is.  You've got this!
Suggestions, opinions and/or advice provided by the author of this post should not be regarded as medical advice; nor should it substitute for professional medical care. Consult your doctor before making any changes to your medication. Please read our Community Policy Documents board for further information.

[Buddie]

Re: 3 years off - So much better!!
« Reply #9 on: February 22, 2022, 10:35:59 pm »
Oh thank you, Kristin. I'm sure it must have been soul crushing not to be able to run.  I was a competitive tennis player. I also did some running (not like you though) and lots of yoga and other fitness practices.  When you said you prayed to be able to just take a walk, that's exactly where I am. I'd give anything to ride my bike too!  Earlier in the process I could walk quite a bit but now I'm lucky to walk around my cul de sac a few times.  I'm in a big ol' wave right now so knowing things improve, even if it takes a long time, is mana from heaven.  Thank you again!

( I could ask you a million questions but I won't...you need to live your life!)
Suggestions, opinions and/or advice provided by the author of this post should not be regarded as medical advice; nor should it substitute for professional medical care. Consult your doctor before making any changes to your medication. Please read our Community Policy Documents board for further information.