Jump to content
Important Survey - Please Participate ×

I'm still in here!


[B ...]

Recommended Posts

Back in the summer of 2015 I was doing pretty good....I had retired in 2013, had a beautiful wife, 2 kids, and 3 grandchildren. I played Senior softball a couple times a week, did some golfing, which I love and spent lots of time playing with my grandkids. My wife and I went to the beach probably 2-3 times a week as it was only 30 minutes away and I loved looking at the horizon, listening to the surf (I used to surf as a teen) and loved the "clarity" and the beautiful "colors" of God's creation.

 

Back 5 years earlier I had back problems and stress from work and a doctor gave me .5 Klonopin and told me they would help relax my back and were good for just general stress relief, he said to take them as needed. I was working graveyard shifts, which I'd been doing for years. He was right, they were a miracle drug. I took maybe 2-3 a week and they also helped me get some sleep on those tough days. I never took them more than that and didn't even know "benzos".

A few months after I had my 1st ever panic attack, which I felt at the time was caused solely by stress from my job. It was horrible as anyone whose had one knows and I thought I was dying. I talked to a counselor at my church and they told me to breath in a paper bag and try to relax, that they wouldn't kill me....but would eventually subside.

The next time I saw my Family Dr, who had given me the Klonopin he said it would help me with the panic attacks, so the next time I felt close to having one I would take one. I had never been fond of taking much medicine, but this K really helped the attack subside. Continuing on this course I would take only a couple a week, with the exception of when I felt a panic attack coming on, even though I would try the paper bag trick 1st. I had only 2 more full blown attacks in the next couple years heading into retirement, knowing I was retiring was beneficial to my peace of mind. I totally quit taking the K and never even thought about it.....

 

Back to retirement life, I had been a little over 2 years into it and was having some stomach issues including some severe pains. I went to a few doctors and changed family doctors, as my old one had been "let go"?

I went to the new family doctor and told him I was retired, had some stomach pain that was severe but was happy in general. He said does the pain get you depressed? I really didn't know what to say...I said I didn't like it but I wasn't really depressed. He said I got something I want you to try, it will help, Lexapro. I said no thanks (not really knowing anything about antidepressants), he said just try it; what can one hurt. If you don't like it just quit. I went to check out and noticed the clock on the wall was a Lexapro clock, the ashtray had Lexapro on it. Didn't know about Big Pharma...

I picked up the prescription and still had some reservations as I was doing fine, I thought  except for my stomach pains. I told my wife and she said "well you can try one, if you don't like it, quit".

Sounds like a plan. That evening I decided to try one....Disaster! The worst panic attack I had ever had came on. My muscles became stiff and rigid and I had 102 fever. My wife called the doctor for me as I was panicking, hitting my hands on the dresser, having spasms, etc.

The nurse said the doctor said we'll send you some Klonopin to take.

I had not even thought of K in a couple of years, had zero panic attacks until the Lexapro and was extremely anxious. I took one dose of K and it helped a little, then another the next morning.

I ended up in the ER and they believed I had "Serotonin Syndrome" the night before and could have died. I had never heard of it, but did some reading on it, and decided I would try even more to stay completely away from drugs as much as possible.

I had another panic attack 7 days later and took another K to help it...I was trying to stay away from as much as possible. Had another a month later, took a K then 3 months later, took a K. I was pretty proud of myself  as there were several more times I "needed" a K but toughed it out. I had did a little reading and found that the K was something you should wean off of, I had never even thought of that as I had no problem coasting off of it when I retired. I thought the Lexapro had done something to me that upset my equilibrium and the K kind of helped it back to the middle, especially reading about Serotonin and its effect on you.

This whole time I was still having the stomach issues, and had been referred to Gastrointestinal doctors. The doctor put me on Phenergan to help my nausea and said it would help me sleep some too. They ordered an MRI too. The MRI came back and was told I had Mesenteric Paniculitis, an autoimmune disease that is extremely rare. I had begun to lose weight and would lose almost 40 pounds in under 2 months. They said I could possibly have lymphoma, as it was similar in symptoms. I was having a rough time and still taking the Phenergan, now twice a day for 45 days, as per my GI doctor. I started getting extremely agitated and anxious, shaking, tremors, pacing the floor....all of a sudden. My mind raced, I couldn't sit down, relax, watch tv, read. I was nervous and jittery all day. I tried taking the K I had from before and it didn't touch it at all, in fact it was much worse. Panic attacks 3-4 a day, beating my head on the door jams, opening and closing cabinets, I couldn't sit still.

I self checked myself in to a Psych Hospital hoping they would help, I was even having suicidal thoughts. The 1st one took me in at 9 am, put me in a room with many other "crazy" people, who seemed just like me. At 5 PM they said we're calling your wife to come get you, without anyone even speaking to me.

I was even more delirious, I had went there begging for help. They kicked me to the curb. My wife took me to a different psych hospital 2 days later as I was still having major issues. They took me in and gave me a shot of Ativan...and it calmed me for a few hours. It felt so good to have my mind slow for just a minute, but then it was gone. They gave me K, Ativan, Visteril and Thorazine. Thorazine is known as "chemical labotomy" in the psych world, as it was used to warehouse patients back in the 50's and 60's to keep them quiet. DON'T EVER TAKE THIS! I had no choice, as I was in a hospital with locked doors and my wife wasn't allowed in.

Don't ever go into one of these if you have a choice!!!! I don't know how  I even made it through.

After getting out I was determined to try to get off all these psychological drugs. I had been diagnosed with "acute anxiety" but was given psychotropic drugs on top of other drugs along with the Phenergan, that I later found out, is used in Europe for anxiety and according to the manufacturer, should not be taken for longer than 7 days, I had been on it for 45 days....I tried on my release from the hospital to go cold Turkey on everything. I went to a neurologist who diagnosed me with drug induced Akathasia. I was pacing 18 hours a day, sleeping 0-1 hr a day for weeks. I couldn't leave my house, I suffered from severe agoraphobia for 9+ months after this. I cried everyday. I had no rest, especially mentally. I begged God every day for months to please take me....I don't even know how other parts of my anatomy functioned with No sleep. After the 1st month out of the hospital, I tried to find some stuff on line, anything, everything that might help. My mind was totally consumed with the drugs, and how to get off.

I found some videos on YouTube about tapering, and then found Benzo Buddies!.....You mean other people have been through this? I asked questions and watched taper videos....SG57, a buddy who is still suffering,  gave me some advice, advice that was instrumental. I watched a video from a guy from Canada named ,Crazy Canuck.

I went back on K with the hope of tapering this time. It wasn't easy....I was diagnosed with Parkinson's disease, and Tardive dyskinesia by 2 different Neurologists.

The 1st 9 months after the hospital, including the start of my K taper were horrible. I did a milk titration, I had a Chemistry background, so that helped a little. My wife would watch me measure the milk and take my dose each night...It was instrumental to have my wife stay with me. She has her own health issues, and I've always took care of her. The tables were reversed and now she was taking care of me. It wasn't easy, she struggled as she's never had anxiety and at 1st couldn't understand why I just didn't tell myself to "get over it". But she fought through it too...it was very hard on her too.

I tapered for 11 months reducing by .001mg a night. I saw an Endocrinologist for my Cortisol levels and he checked them. They were supposed to be no higher than 20, but came back 76. He said let's try again, maybe it was a mistake. The 2nd time came back 426....over 20 times normal. No wonder I was wired everyday, especially in the morning starting at 3am, like clockwork. He initially diagnosed me with Cushing's disease.

Today as I write this I'm 19 months from my last crumb of K. I also tapered off Nexium, which I had been on for 10years for reflux. I take nothing anymore, maybe a Tylenol once a week or so.

Last month my wife and I took an impromptu road trip for 4 days, we went to a concert, ate at some cool places, did horseback riding, hiked in the mountains and went to watch The University of Alabama have their fall football fan day. I'm coaching my grandson's soccer team, playing golf, going to the beach....loving life.

I can actually sit down, and relax!!! I have "clarity" again!!, I see "colors" again.

I've gained back my weight, (maybe too much:))

I reached a point after that 9 months of asking God to take me, that I turned a corner and asked God to help me.

Make it through the next moment, the next hour, the next day....don't give up! Don't let the drug, the evil win!

It seems as though all the diagnoses, except the Drug induced Akathasia, were maybe ALL because of drugs....no Parkinson's, no tardive dyskinesia, no Cushing's, perhaps never even Mesenteric Paniculitis???

I can't say for sure what tomorrow will bring.....but I've been through HELL and made it. There was a time I thought there was NO WAY!!!

HANG IN THERE!

I used to tell my wife when I was at my worst that I was in here somewhere....pointing to my heart. Well I'm here...I really was still in there!

Love to each of you! You can do it!!! I did it, so can you!

 

Things that helped

Keep a journal.... write how you feel, grade your anxiety, how you feel, etc.

You don't notice things when you're in the middle of the forest, but as you journey and read back, you'll see you're making progress.

Distract....everyone says this and it's true. My 5 year old grandson would come by and "play" with me...color, cards, Hot Wheels cars. It helped immensely.

Try to accomplish small things, wash the dishes,  fold clothes, anything.

 

I noticed that during my withdrawal I had extreme feelings, I wanted to die, I hated things like never before, I was so jealous of everything and everybody. I believe the drugs bring out the very worst of you. After making it thru this I'm more patient, more relaxed than I've ever been. I appreciate the small things, I love more, I appreciate everything. I'm at peace, I know based on what I've been through I'm tougher than I ever was.

I hope sharing the tough parts help someone. I used to read the Success Stories wondering sometimes maybe they were made up, maybe the administrators were just posting things to keep us coming back.

I really made it! Woo hoo! You will too!!!

 

Symptoms I struggled with the most....

Akathasia

Insomnia

Anxiety

Depression

Muscle pain (especially neck and shoulder)

Headache

Spasms

Twitching

Hypersalivation (mouth watering so much I would have a pool on my pillow)

Eye pain

Cold intolerent

Crying every day

Could not relax, rest.

Intrusive thoughts (They're not You!)

Mind racing incessantly

Tinnitus

All the other ones too!

 

Except for Tinnitus and some neck pains and headaches they are ALL GONE!

 

SORRY FOR THE LENGTHY SUMMATION BUT HOPE IT HELPS SOMEONE

Prayers and Hope for you all....

Love,

 

B strong

 

This too shall pass....

  • Like 4
  • Love 6
Link to comment
Share on other sites

WOW!!! What a story of survival and thriving!!!

 

Amazing fortitude. Thank god you knew what to do amidst all the diagnoses that were thrown at you. That all required great courage and strength.

 

I agree with this wholeheartedly:  I believe the drugs bring out the very worst of you. I often feel jealous, too, of others.

 

It must be so wonderful to be CALM again. My norepinephrine is way too high, but your cortisol levels were REALLY high. How did you get them back down? I just want to do things like talk to people without the anxiety always coming up. I'm doing meditation, which is good. But I've had this damned anxiety for six long years now.

 

THANK YOU VERY MUCH FOR COMING BACK TO TELL YOUR STORY!!! WE NEED THESE!!! There is light at the end of the tunnel, and you're proof!!!  :thumbsup: :thumbsup: :thumbsup: :thumbsup:

  • Like 1
Link to comment
Share on other sites

Back in the summer of 2015 I was doing pretty good....I had retired in 2013, had a beautiful wife, 2 kids, and 3 grandchildren. I played Senior softball a couple times a week, did some golfing, which I love and spent lots of time playing with my grandkids. My wife and I went to the beach probably 2-3 times a week as it was only 30 minutes away and I loved looking at the horizon, listening to the surf (I used to surf as a teen) and loved the "clarity" and the beautiful "colors" of God's creation.

 

Back 5 years earlier I had back problems and stress from work and a doctor gave me .5 Klonopin and told me they would help relax my back and were good for just general stress relief, he said to take them as needed. I was working graveyard shifts, which I'd been doing for years. He was right, they were a miracle drug. I took maybe 2-3 a week and they also helped me get some sleep on those tough days. I never took them more than that and didn't even know "benzos".

A few months after I had my 1st ever panic attack, which I felt at the time was caused solely by stress from my job. It was horrible as anyone whose had one knows and I thought I was dying. I talked to a counselor at my church and they told me to breath in a paper bag and try to relax, that they wouldn't kill me....but would eventually subside.

The next time I saw my Family Dr, who had given me the Klonopin he said it would help me with the panic attacks, so the next time I felt close to having one I would take one. I had never been fond of taking much medicine, but this K really helped the attack subside. Continuing on this course I would take only a couple a week, with the exception of when I felt a panic attack coming on, even though I would try the paper bag trick 1st. I had only 2 more full blown attacks in the next couple years heading into retirement, knowing I was retiring was beneficial to my peace of mind. I totally quit taking the K and never even thought about it.....

 

Back to retirement life, I had been a little over 2 years into it and was having some stomach issues including some severe pains. I went to a few doctors and changed family doctors, as my old one had been "let go"?

I went to the new family doctor and told him I was retired, had some stomach pain that was severe but was happy in general. He said does the pain get you depressed? I really didn't know what to say...I said I didn't like it but I wasn't really depressed. He said I got something I want you to try, it will help, Lexapro. I said no thanks (not really knowing anything about antidepressants), he said just try it; what can one hurt. If you don't like it just quit. I went to check out and noticed the clock on the wall was a Lexapro clock, the ashtray had Lexapro on it. Didn't know about Big Pharma...

I picked up the prescription and still had some reservations as I was doing fine, I thought  except for my stomach pains. I told my wife and she said "well you can try one, if you don't like it, quit".

Sounds like a plan. That evening I decided to try one....Disaster! The worst panic attack I had ever had came on. My muscles became stiff and rigid and I had 102 fever. My wife called the doctor for me as I was panicking, hitting my hands on the dresser, having spasms, etc.

The nurse said the doctor said we'll send you some Klonopin to take.

I had not even thought of K in a couple of years, had zero panic attacks until the Lexapro and was extremely anxious. I took one dose of K and it helped a little, then another the next morning.

I ended up in the ER and they believed I had "Serotonin Syndrome" the night before and could have died. I had never heard of it, but did some reading on it, and decided I would try even more to stay completely away from drugs as much as possible.

I had another panic attack 7 days later and took another K to help it...I was trying to stay away from as much as possible. Had another a month later, took a K then 3 months later, took a K. I was pretty proud of myself  as there were several more times I "needed" a K but toughed it out. I had did a little reading and found that the K was something you should wean off of, I had never even thought of that as I had no problem coasting off of it when I retired. I thought the Lexapro had done something to me that upset my equilibrium and the K kind of helped it back to the middle, especially reading about Serotonin and its effect on you.

This whole time I was still having the stomach issues, and had been referred to Gastrointestinal doctors. The doctor put me on Phenergan to help my nausea and said it would help me sleep some too. They ordered an MRI too. The MRI came back and was told I had Mesenteric Paniculitis, an autoimmune disease that is extremely rare. I had begun to lose weight and would lose almost 40 pounds in under 2 months. They said I could possibly have lymphoma, as it was similar in symptoms. I was having a rough time and still taking the Phenergan, now twice a day for 45 days, as per my GI doctor. I started getting extremely agitated and anxious, shaking, tremors, pacing the floor....all of a sudden. My mind raced, I couldn't sit down, relax, watch tv, read. I was nervous and jittery all day. I tried taking the K I had from before and it didn't touch it at all, in fact it was much worse. Panic attacks 3-4 a day, beating my head on the door jams, opening and closing cabinets, I couldn't sit still.

I self checked myself in to a Psych Hospital hoping they would help, I was even having suicidal thoughts. The 1st one took me in at 9 am, put me in a room with many other "crazy" people, who seemed just like me. At 5 PM they said we're calling your wife to come get you, without anyone even speaking to me.

I was even more delirious, I had went there begging for help. They kicked me to the curb. My wife took me to a different psych hospital 2 days later as I was still having major issues. They took me in and gave me a shot of Ativan...and it calmed me for a few hours. It felt so good to have my mind slow for just a minute, but then it was gone. They gave me K, Ativan, Visteril and Thorazine. Thorazine is known as "chemical labotomy" in the psych world, as it was used to warehouse patients back in the 50's and 60's to keep them quiet. DON'T EVER TAKE THIS! I had no choice, as I was in a hospital with locked doors and my wife wasn't allowed in.

Don't ever go into one of these if you have a choice!!!! I don't know how  I even made it through.

After getting out I was determined to try to get off all these psychological drugs. I had been diagnosed with "acute anxiety" but was given psychotropic drugs on top of other drugs along with the Phenergan, that I later found out, is used in Europe for anxiety and according to the manufacturer, should not be taken for longer than 7 days, I had been on it for 45 days....I tried on my release from the hospital to go cold Turkey on everything. I went to a neurologist who diagnosed me with drug induced Akathasia. I was pacing 18 hours a day, sleeping 0-1 hr a day for weeks. I couldn't leave my house, I suffered from severe agoraphobia for 9+ months after this. I cried everyday. I had no rest, especially mentally. I begged God every day for months to please take me....I don't even know how other parts of my anatomy functioned with No sleep. After the 1st month out of the hospital, I tried to find some stuff on line, anything, everything that might help. My mind was totally consumed with the drugs, and how to get off.

I found some videos on YouTube about tapering, and then found Benzo Buddies!.....You mean other people have been through this? I asked questions and watched taper videos....SG57, a buddy who is still suffering,  gave me some advice, advice that was instrumental. I watched a video from a guy from Canada named ,Crazy Canuck.

I went back on K with the hope of tapering this time. It wasn't easy....I was diagnosed with Parkinson's disease, and Tardive dyskinesia by 2 different Neurologists.

The 1st 9 months after the hospital, including the start of my K taper were horrible. I did a milk titration, I had a Chemistry background, so that helped a little. My wife would watch me measure the milk and take my dose each night...It was instrumental to have my wife stay with me. She has her own health issues, and I've always took care of her. The tables were reversed and now she was taking care of me. It wasn't easy, she struggled as she's never had anxiety and at 1st couldn't understand why I just didn't tell myself to "get over it". But she fought through it too...it was very hard on her too.

I tapered for 11 months reducing by .001mg a night. I saw an Endocrinologist for my Cortisol levels and he checked them. They were supposed to be no higher than 20, but came back 76. He said let's try again, maybe it was a mistake. The 2nd time came back 426....over 20 times normal. No wonder I was wired everyday, especially in the morning starting at 3am, like clockwork. He initially diagnosed me with Cushing's disease.

Today as I write this I'm 19 months from my last crumb of K. I also tapered off Nexium, which I had been on for 10years for reflux. I take nothing anymore, maybe a Tylenol once a week or so.

Last month my wife and I took an impromptu road trip for 4 days, we went to a concert, ate at some cool places, did horseback riding, hiked in the mountains and went to watch The University of Alabama have their fall football fan day. I'm coaching my grandson's soccer team, playing golf, going to the beach....loving life.

I can actually sit down, and relax!!! I have "clarity" again!!, I see "colors" again.

I've gained back my weight, (maybe too much:))

I reached a point after that 9 months of asking God to take me, that I turned a corner and asked God to help me.

Make it through the next moment, the next hour, the next day....don't give up! Don't let the drug, the evil win!

It seems as though all the diagnoses, except the Drug induced Akathasia, were maybe ALL because of drugs....no Parkinson's, no tardive dyskinesia, no Cushing's, perhaps never even Mesenteric Paniculitis???

I can't say for sure what tomorrow will bring.....but I've been through HELL and made it. There was a time I thought there was NO WAY!!!

HANG IN THERE!

I used to tell my wife when I was at my worst that I was in here somewhere....pointing to my heart. Well I'm here...I really was still in there!

Love to each of you! You can do it!!! I did it, so can you!

 

Things that helped

Keep a journal.... write how you feel, grade your anxiety, how you feel, etc.

You don't notice things when you're in the middle of the forest, but as you journey and read back, you'll see you're making progress.

Distract....everyone says this and it's true. My 5 year old grandson would come by and "play" with me...color, cards, Hot Wheels cars. It helped immensely.

Try to accomplish small things, wash the dishes,  fold clothes, anything.

 

I noticed that during my withdrawal I had extreme feelings, I wanted to die, I hated things like never before, I was so jealous of everything and everybody. I believe the drugs bring out the very worst of you. After making it thru this I'm more patient, more relaxed than I've ever been. I appreciate the small things, I love more, I appreciate everything. I'm at peace, I know based on what I've been through I'm tougher than I ever was.

I hope sharing the tough parts help someone. I used to read the Success Stories wondering sometimes maybe they were made up, maybe the administrators were just posting things to keep us coming back.

I really made it! Woo hoo! You will too!!!

 

Symptoms I struggled with the most....

Akathasia

Insomnia

Anxiety

Depression

Muscle pain (especially neck and shoulder)

Headache

Spasms

Twitching

Hypersalivation (mouth watering so much I would have a pool on my pillow)

Eye pain

Cold intolerent

Crying every day

Could not relax, rest.

Intrusive thoughts (They're not You!)

Mind racing incessantly

Tinnitus

All the other ones too!

 

Except for Tinnitus and some neck pains and headaches they are ALL GONE!

 

SORRY FOR THE LENGTHY SUMMATION BUT HOPE IT HELPS SOMEONE

Prayers and Hope for you all....

Love,

 

B strong

 

This too shall pass....

 

Wow, how scary and terrible for you and your wife.  I can't imagine.  You must be a very strong person to go through that and we are so grateful you came back to tell your story.  Amazing, I am so happy for you and your wife.  You were still in your ❤️.  That sentence still has tears in my eyes.  Bless you :smitten:

Link to comment
Share on other sites

What a wonderful success story! Thank you SO much for sharing it. I was also in the psych hospital and didn’t know I was in withdrawal. That seems to be common. Super sad and it’s so good to know there is hope and healing and success. Thanks for this story it’s helped me a lot today.  :smitten:
  • Like 1
Link to comment
Share on other sites

B Stong,

I can't thank-you enough for writing this!  I have been on Klonopin less than 1 mg a day for over 10 years.  It has been over a month since I took the last drop....I did liquid titration.  The complete right side of my body is in constant severe pain.  Had every test that can be done and not much shows up.  After reading your post I believe it has to be withdrawal from Klonopin though I suffered the entire 10 years I was on it.  I was never told Klonopin was the problem.  It was r/xed to help me sleep.  After taking it I then began suffering from anxiety:(

Hopefully, like you I can heal and live life again.

Thanks,

Somedaysoon

Link to comment
Share on other sites

Thank you, thank you, thank you for this story! I almost have tears in my eyes. I struggle with akathisia and depression and it's the most horrific thing I've ever experienced. You give me and I'm sure a lot of other people hope. I hope life brings good things your way. I think I'll save this story. Thank you again!
Link to comment
Share on other sites

Good God. I have suffered terribly but am finally recovering SLOWLY but how do you get past what these doctors and drugs did to you! I admire not only your strength to persevere through it but you ability to let it go.  Everything you wrote was so helpful. I am extremely lifted by your success story. But I do wonder about one thing... had you not reinstated and then tapered - would you have healed quicker or still be suffering? With your background, any insight into when it is good to reinstate and when it is not? I am past this stage but others are very much struggling with this decision. Thank you!!!!  Have a great life. You earned it and more.
Link to comment
Share on other sites

Terry,

The cortisol was horrendous, hit everyday at 3am was horrible till noon almost like clockwork. The Endocrinologist wanted me to go through more intrusive tests and take some other drugs but by this time there was no way I was letting any doctor give me more drugs or submit to more tests. I liked my Endocrinologist and he was one of the few that seemed genuinely concerned for MY welfare. I just allowed time to heal....it was very slow but I had also read of many people going thru pituatary gland surgery unnecessarily because my MRIs were inconclusive. Good thing I toughed it out, it seems to have been the right decision.

Leslie,

I was off almost 2 months struggling horribly when I reinstated. It was at probably my lowest point and as soon as I reinstated I regretted it. But I didn't know what to do because I was suffering so much. Later I read you should reinstate within 14 days or not at all....In retrospect I may have healed quicker not reinstating, perhaps days or weeks after reinstating, but I have absolutely no way of knowing. The one thing about reinstating was I felt I got somewhat of a plan with the milk taper and had some control to go slowly and let the symptoms dictate. It was a long 11 months tapering, then 19 more months till today but I'm  here so I'll take it.

Also one of the Neurologists when he said I had Parkinson's wanted me to start a course of drug for that. When I read about this drug it said, if you didn't have Parkinson's, the drug would give you tremors, shakes and mess up your dopamine levels. I asked him about this and he refused to see me any more after this and even blacklisted me from the other Neurologists in his hospital. He told me, if you're not willing to trust me to take this drug, I don't need to be your doctor and he also purposely hurt my chances at having any other doctors help me. Incredible but true....one of my lowest points as this helped me to decide to reinstate.

I'm no doctor, I'm sure there are many well meaning ones, but of 2 family doctors, 2 neurologists, 2 cardiologists, an Endocrinologist, 2 Gastroenterologists, a urologist, about 5 different Pdocs including the ones at the psychiatric hospital to a person....EVERY ONE said there is NO WAY this could be caused by drugs. Early on I started asking, no one believed me because I seemed so crazy, not my friends, my mom, my kids, any doctor or even my wife....I kept saying "I think it might be the drugs", but until I went thru it all and started coming out the other side I was the only one that truly believed it. You have to be your own advocate. Only you know you like no one else,  you decide not a doctor.

I lost several friends, people that when they heard I had something "mental" wrong with me, they didn't want to be around me at all. My wife asked a few to text me or send messages or Bible verses to encourage me, but almost no one did.....It hurt, bad.

That really bothered me and led to some of the strong feelings, I hated that doctor that blacklisted me, I was so jealous people were out living when I was dying inside, and only a few cared.

But alas you come to a place where you're ready to lose the chains and shackles that have harnessed you physically and mentally and learn to live again. I had heard before that some people have to "relearn" things emotionally and that is so true. The 1st time I walked in a shopping mall, about 10 months into my taper and still with major withdrawals,  I walked down the middle of the mall and just concentrated on every exit, how to get out if necessary. I didn't make eye contact with anyone, just tried to make it thru without a meltdown. Something else really strange was that complete strangers would look at me and talk to me, because they didn't know how I used to be....but people that knew me avoided me because I was different than before.

I had to relearn life and forgive people that basically dissed me. But I appreciate life again so much that I don't care about revenge. "If you set out on a course of revenge, dig two graves"

Enjoy the life you are given, you never know when it will end.

Peace, love...

 

Hope this helps someone...❤

 

B strong

  • Like 1
Link to comment
Share on other sites

WOW, again!!! Thank you for being so very honest and also FOR TRUSTING THE PROCESS. I can't imagine any of the people around you being able to go through such torture. It's absolutely mind-boggling what you went through, and to hear it from the other side is simply amazing.

 

Thank you for telling me about the cortisol. It is a very slow process. I can hardly wait for the anxiety to leave.

 

I'm interested to find out why you went to a urologist. I developed kidney problems while going through this (and have to take bp pills also), and I'm seeing a nephrologist. I have never discussed benzos with him except to tell him I was on them. But did you have kidney problems?

 

THANKS SO MUCH AGAIN!!!

Link to comment
Share on other sites

[f5...]

Dear B Strong,

 

There are no words really to do justice to an experience such as the one you lived. I know that your story conveys only a fraction of all the suffering... But, you're healed and whole!!! Congratulations - and thank you for making my heart sing this morning!

 

My story echoes yours: multiple misdiagnoses...in and out of psych hospitals...on and on. Like you, I have realised that most, perhaps even all, of my 'labels' were iatrogenic misdiagnoses - and I'll never touch medical drugs again (save in the case of a medical emergency, such as an accident requiring surgery).

 

Wishing you and your lovely wife a lifetime of love, wellness, and new adventures!

With warmth and gratitude

Link to comment
Share on other sites

Dear B Strong  :smitten:

 

THANK YOU SO MUCH for sharing this incredibly inspiring journey... the words just elude me.

 

At 15 months, still struggling daily from akathisia and mental symptoms, your story helps so so much... I can't possibly do it justice with any reply I could write just now...

 

THANK YOU SO MUCH ❤

 

And huge congratulations of course!  :smitten:

 

Hugs,

Julz xx

Link to comment
Share on other sites

YAY, BSTRONG!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!  Thank you for coming back to share your freedom with us, and thank you over the years for cheering me on at the Klonopin Klub. 

 

I relate to the process of forgiving those that turned away when we were most in need.  It hurts, but I understand people do the best they can.  I'm now working on repairing some of those friendships.

 

Wishing you a lifetime of peace and joy.    :smitten: :smitten: :smitten: :smitten:

 

WR

 

 

Link to comment
Share on other sites

Wow. What an incredible journey. Congratulations.  So so so many similarities to my story. That really helps to validate what I went through. Thank you for taking the time to write this.

 

Best Wishes.

Link to comment
Share on other sites

I have a question for Be strong.  did your anxiety gradually went away or just one day stopped?  and what did you do while going through it?

 

Link to comment
Share on other sites

Wow that's is amazing success story!!! Feel so many way similarity  to my story.

Congratulations to make it trough and thank you so much to coming back and let us know there is a hope.

27 months off benzo and 6 months off remeron. Still struggling badly but you give me hope it will get better one day.

Thank you

Love and healing

Vica

Link to comment
Share on other sites

Terry,

The Urologist had to do with the stomach pain and problems from the Mesenteric Paniculitis diagnosis. I had a bladder scope done, which was extremely painful, to rule out bladder cancer and check for stones. I've always had a bit of BPH ( enlarged prostate) which causes a feeling of needing to urinate. This feeling increased during withdrawal and I continue to have to get up during the night because of a feeling of needing to go. I think the nerve endings everywhere in the body are at increased awareness because of getting off of a drug that probably dampened them for so long. My kidneys were checked several times, so far so good, wish you well with yours.

I believe, again in my opinion I'm no doctor, that the artificial synthetic drugs altering our body systems and changing our CNC may play a huge role in many problems we go through that are attributed to illness. I'm not saying we don't have other health problems and the ramifications of old age attacking us, but many if not almost all of my problems were drug related.

Early on in this adventure I went to the ER after my doctor decided to try me on Propranolol because my BP had been "mildly elevated". Prior to this my BP was approx 145/90. ( This was on Klonopin too).  This had been my normal BP for the last few years while on K. Although I don't know for sure if that had an affect on it.

A couple of days into taking propranolol my BP was 195/95. I was admitted had extensive cardiology tests including stress tests, EKG, EEG, and a heart Catheter after wearing a holter monitor for a few days. Everything in my heart checked out fine, even though I was having chest pains and palpitations. I stopped the propranolol on my own. They wanted me to take losartin instead, but I never took any. I had some major heart pains, lots of palpitations, but decided in part since my heart had no damage and needed no stents, I would do without. Today my BP is 117/82...I'm on NOTHING! I'm not saying there aren't people who need certain drugs, and that indeed some are life saving, but I can only go by my own experience.

Vica,

One of my Pdocs tried me on Remeron, but I had a reaction, fever, flulike symptoms and nervousness. I've heard it's helped some people, but anything that needed any tapering made me nervous anyway, after trying tapering prior. Again, quite possibly we taking an antidepressant drug, which by definition raises your Serotonin, makes you artificially "happy"....while benzodiazepines do the exact opposite...calm you by decreasing serotonin levels and increasing melatonin.

Perhaps us toying with our CNC this much gets our GABA out of balance and homeostasis is very hard to achieve after all the artificial "happiness" and "calming". Alot of drugs we are given play on other body systems cross the blood/brain barrier and affect much more than what they are intended for.

I would definitely tell people who are having anxiety or depression to exhaust all other avenues, be it therapy or changing your environment, or maybe you're just having some anxiety or depression that may subside on it's own if you tough it out. We all go through tough times and situations and if we learn how to work through them instead of introducing an artificial entity to our system to control our emotions, that we learn how to cope naturally. Some situations are just hard!!

But I've definitely had nothing tougher to deal with than what I went through with this...not even close. That is why coming out of this funk feels like we have to "relearn" life skills all over again. The more you try the more you succeed. Heck, you're succeeding by just trying!

 

WR,

So great to here from you!!!!! Hope you're hanging on and trying to enjoy life again my friend.

 

Sorry for rambling on....but I was where many of you are, and sometimes reading just one thing helped me make it another day.🌞

 

 

Prayers to all of you,

Love,❤

 

B strong

Link to comment
Share on other sites

Terry,

The Urologist had to do with the stomach pain and problems from the Mesenteric Paniculitis diagnosis. I had a bladder scope done, which was extremely painful, to rule out bladder cancer and check for stones. I've always had a bit of BPH ( enlarged prostate) which causes a feeling of needing to urinate. This feeling increased during withdrawal and I continue to have to get up during the night because of a feeling of needing to go. I think the nerve endings everywhere in the body are at increased awareness because of getting off of a drug that probably dampened them for so long. My kidneys were checked several times, so far so good, wish you well with yours.

I believe, again in my opinion I'm no doctor, that the artificial synthetic drugs altering our body systems and changing our CNC may play a huge role in many problems we go through that are attributed to illness. I'm not saying we don't have other health problems and the ramifications of old age attacking us, but many if not almost all of my problems were drug related.

Early on in this adventure I went to the ER after my doctor decided to try me on Propranolol because my BP had been "mildly elevated". Prior to this my BP was approx 145/90. ( This was on Klonopin too).  This had been my normal BP for the last few years while on K. Although I don't know for sure if that had an affect on it.

A couple of days into taking propranolol my BP was 195/95. I was admitted had extensive cardiology tests including stress tests, EKG, EEG, and a heart Catheter after wearing a holter monitor for a few days. Everything in my heart checked out fine, even though I was having chest pains and palpitations. I stopped the propranolol on my own. They wanted me to take losartin instead, but I never took any. I had some major heart pains, lots of palpitations, but decided in part since my heart had no damage and needed no stents, I would do without. Today my BP is 117/82...I'm on NOTHING! I'm not saying there aren't people who need certain drugs, and that indeed some are life saving, but I can only go by my own experience.

Vica,

One of my Pdocs tried me on Remeron, but I had a reaction, fever, flulike symptoms and nervousness. I've heard it's helped some people, but anything that needed any tapering made me nervous anyway, after trying tapering prior. Again, quite possibly we taking an antidepressant drug, which by definition raises your Serotonin, makes you artificially "happy"....while benzodiazepines do the exact opposite...calm you by decreasing serotonin levels and increasing melatonin.

Perhaps us toying with our CNC this much gets our GABA out of balance and homeostasis is very hard to achieve after all the artificial "happiness" and "calming". Alot of drugs we are given play on other body systems cross the blood/brain barrier and affect much more than what they are intended for.

I would definitely tell people who are having anxiety or depression to exhaust all other avenues, be it therapy or changing your environment, or maybe you're just having some anxiety or depression that may subside on it's own if you tough it out. We all go through tough times and situations and if we learn how to work through them instead of introducing an artificial entity to our system to control our emotions, that we learn how to cope naturally. Some situations are just hard!!

But I've definitely had nothing tougher to deal with than what I went through with this...not even close. That is why coming out of this funk feels like we have to "relearn" life skills all over again. The more you try the more you succeed. Heck, you're succeeding by just trying!

 

WR,

So great to here from you!!!!! Hope you're hanging on and trying to enjoy life again my friend.

 

Sorry for rambling on....but I was where many of you are, and sometimes reading just one thing helped me make it another day.🌞

 

 

Prayers to all of you,

Love,❤

 

B strong

 

You are so right, sometimes just one topic or sentence can get you through day, it's happened to me many times.  I think it's called hope, and you continue to give that, thank you b strong :smitten:

Mary

Link to comment
Share on other sites

Thank you so much, B Strong!!! I've always thought that once I get off the bp pills (slowly, of course) that my bp will be normal again and also once I get rid of the benzo anxiety. The bp problems escalated when I was on all the pills and especially during Ativan and Klonopin. It seems that bp pills also cause their own problems. It's a never-ending battle, and of course the doctors don't understand and just give me more pills! I certainly concur with what you said about the nerves. Doctors have no idea what these drugs cause, and since everyone is different, some may experience one thing and others something else. Benzos then become a moving target, difficult to pin down. But that's what you get when you play havoc with the CNS by hijacking GABA and causing endless problems with nerves traveling throughout the body.

 

I'm thankful that you didn't take Losartan. I also have gotten Propranolol but don't feel well on it.

 

You're one tough guy!!! Blessings and a wonderful life to you!!!  :thumbsup: :thumbsup:

Link to comment
Share on other sites

Momack and Blue,

As you probably know Momack, the anxiety that lots of us deal with during this process is not normal anxiety. Mine was an extreme 24/7 inner turmoil, terror and fear. For the period from when it started, during my agoraphobia, my taper and through my withdrawal it was constant. Having akathasia made it much, much worse. My mind never relaxed....even a few months in when I would have a brief respite late in the evening, it was still there messing with my thoughts.

Many times I felt like my mind wasn't my mind. I had suicidal thoughts every day for months, which were my intrusive thoughts Blue. I knew I didn't want to leave my wife and kids, but my mind told me I did. The "inner turmoil" was so exhausting that the pain and the lack of sleep at times seemed insurmountable. Perhaps you've been there. I don't want to get to specific about suicide, as this is a success story. You have to fight through every moment, and then hour and then day....one day we'll look back and realize we've climbed out of a dark deep hole without even knowing how far it was.

The anxiety and intrusive thoughts kept me at bay for almost a year. The anxiety started to lessen slightly for maybe an hour late at night after about 9 months so I used that as a sign that it was possible. I really believe too, like I said earlier that keeping a Journal of everything daily, how you feel, what helped, something positive, what to avoid...like foods helps looking back.

When I started doing this I rated my days 1-10 by how extreme my anxiety was. Good days at that time were 7's soooooo that shows where I was. I gave myself a star for days that something happened that felt somewhat normal. I would have possibly one maybe 2 stars a month initially.

After about 10 months I had some 5 or 6 days, and maybe 4 or 5 days in a month that got a star. This was important because as I looked back it was very helpful because when you're in the middle of it, you can't remember it was worse.

I just now looked at my journal and the last day I had 0 stars was June 1st....today is September 6th. Some days have 2 or 3 stars in that time, even a couple 4 star days!. Most days now are rated somewhere between 3-5 as far as anxiety level. It gets better, but it's not always linear. You WILL have setbacks, you will take 2 steps forward and 3 back at times, but your body is trying get back to homeostasis. It has to recover from the damage that it went through. It's not overnight for many of us.....but IT WILL GET BETTER!

THE KEY IS TO SURVIVE!!!!!!!!ONE MORE MOMENT, ONE MORE HOUR, ONE MORE DAY!!! As they add up you start to notice what you've came through and that you are stronger than you realized.💪

 

Keep swimming!!!🏊‍♂️

 

Hope this helps a little!!👍

 

Love❤ and prayers,

 

B strong

 

Link to comment
Share on other sites

B strong - thank you SO MUCH for your story. I'm at 14 months out after three years of tolerance withdrawal and tapering, and I'm still suffering 60 different symptoms - yes, 60! My story is long and complicated, but not as much as yours. I pray to die most of the time, but I don't really want to. What the hell is life all about anyway? Just suffering and more suffering? But you have overcome tremendous misery and found happiness again. If you can, then I can too. Thank you for your inspiration.

 

MirandaJane

Link to comment
Share on other sites

×
×
  • Create New...