Author Topic: I'm still in here!  (Read 6988 times)

[Buddie]

I'm still in here!
« on: September 05, 2018, 07:53:21 pm »
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 [...] 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 [...] 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 [...] 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 [...] 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 [...] IT HELPS SOMEONE
Prayers and [...] for you all....
Love,

[...]

This too shall pass....
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: I'm still in here!
« Reply #1 on: September 05, 2018, 08:28:49 pm »
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 [...] 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 [...] 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:
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: I'm still in here!
« Reply #2 on: September 05, 2018, 08:40:33 pm »
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 [...] 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 [...] 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 [...] 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 [...] 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 [...] IT HELPS SOMEONE
Prayers and [...] for you all....
Love,

[...]

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:
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: I'm still in here!
« Reply #3 on: September 05, 2018, 08:53:23 pm »
What a wonderful success story! Thank you SO much for sharing it. I was also in the psych hospital and didnít know I was in withdrawal. That seems to be common. Super sad and itís so good to know there is [...] and healing and success. Thanks for this story itís helped me a lot today.  :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: I'm still in here!
« Reply #4 on: September 05, 2018, 10:26:52 pm »
 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,
[...]
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: I'm still in here!
« Reply #5 on: September 05, 2018, 11:06:09 pm »
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 [...]. I [...] life brings good things your way. I think I'll save this story. Thank you again!
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: I'm still in here!
« Reply #6 on: September 05, 2018, 11:32:47 pm »
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.
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: I'm still in here!
« Reply #7 on: September 05, 2018, 11:34:14 pm »
Thank you so much for doing that.

Congratulations and well done!
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: I'm still in here!
« Reply #8 on: September 06, 2018, 01:03:48 am »
[...],
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 [...] 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...

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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: I'm still in here!
« Reply #9 on: September 06, 2018, 06:02:09 am »
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!!!
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.