Generic Clonazepam

[[In...]]

I’m not “attacking” you Dub. It just appears to me that you consistently recommend that people try the branded K by Genentech.

 

I can barely speak, so if there was a recording of my voice, you would not hear a verbal “attack” at all.

 

Thanks.

[[Ly...]]

Intend, can I please ask you why you are having trouble speaking?  Is it because of your withdrawal?

 

I have developed severe hyperacusis during my withdrawal and cannot stand any sounds at all.  I need earplugs for most things now.  I feel like fainting when I hear a pen drop or something "snap" or paper being crumbled, etc.  When people talk, it hurts my ears and head so much, they have to speak in a very soft tone.  I have to speak in a whisper or just above a whisper.  It is hurting my head and throat to talk.  I cannot chew food anymore.  Everything has to be done up like a soup or drink.  It is becoming unbearable.

 

I went to a specialist and he said I "do not" have hyperacusis!  Imagine!  I told him I was coming off of a benzo and that this started during my tapering.  Everyone of my senses is heightened--especially this one.  Smell, taste, tough, etc. all heightened.  But the hyperacusis is turning me into an invalid.  I cannot leave my house.  Ear plugs make my tinnitus scream in my head and I become disoriented, etc.

 

Anyone else have this or heard of this? 

 

I didn't know if you can't talk for the same reason I can't.

 

And to think I still have such a long way to go to get off this poison.  It leaves me feeling hopeless.  And I mean "hopeless."

 

 

[[Fr...]]

Lynn

I have similar symptoms to you as far as sound and people talking. My own voice talking makes my head hurt so bad. I do not have problems chewing though. Tinnitus is out of control as well. I don’t really go anywhere because the sound and talking is so overstimulating that it hurts my head and body terribly and makes the exhaustion worst.

[[In...]]

Intend, can I please ask you why you are having trouble speaking?  Is it because of your withdrawal?

 

I have developed severe hyperacusis during my withdrawal and cannot stand any sounds at all.  I need earplugs for most things now.  I feel like fainting when I hear a pen drop or something "snap" or paper being crumbled, etc.  When people talk, it hurts my ears and head so much, they have to speak in a very soft tone.  I have to speak in a whisper or just above a whisper.  It is hurting my head and throat to talk.  I cannot chew food anymore.  Everything has to be done up like a soup or drink.  It is becoming unbearable.

 

I went to a specialist and he said I "do not" have hyperacusis!  Imagine!  I told him I was coming off of a benzo and that this started during my tapering.  Everyone of my senses is heightened--especially this one.  Smell, taste, tough, etc. all heightened.  But the hyperacusis is turning me into an invalid.  I cannot leave my house.  Ear plugs make my tinnitus scream in my head and I become disoriented, etc.

 

Anyone else have this or heard of this? 

 

I didn't know if you can't talk for the same reason I can't.

 

And to think I still have such a long way to go to get off this poison.  It leaves me feeling hopeless.  And I mean "hopeless."

 

Lynn,

 

Of course you can ask me, and I will tell you.

 

Several years ago and literally out of the blue, I began to have trouble breathing. At first, I could cope with it because it occurred when I climb stairs or rushed to get somewhere when I walked. But it got to the point where I couldn’t get across a room with stopping and gasping for air.

 

I seriously don’t remember how I handled this; but I know it was hard. And as far as stairs, I’d stop and gasp for airs numerous times before I got to the top. It’s hard to remember what it was like when I walked slowly anywhere, but I know I did it.

 

And then I went to a doctor for a completely different reason, and during the exam, she listened to my lungs and my breathing. And she said, “you sure aren’t pushing much air through those lungs.” And then the made an appointment for me at a hospital to have them do some testing. So there, I had an x-ray of my lungs which were clear, and what’s called an arterial tap that indicates how much oxygen in in your bloodstream, and I had 98% oxygenation which is over the normal rate of 94-95%. So that was not a problem either.

 

From there, I went to the speech pathology dept. That person ran her tests which I can’t remember, but after she was done, she said, “I’m not sure what’s wrong here, but it seems to be in your upper airway. So these reports went back to the original doctor, and she called me and said she’d made an appt for me to see an ENT. So I saw him, and he put on a type of “head strap” that has a mirror on it. And then he put a small, thin metal device with a tiny light at the end of it to the back of my throat.

 

And I could feel it touch the back of my throat. It kind of hurt, and I got frightened. Then he pulled it out, took off that head strap, and said he’d be right back. He left his exam room and went into his office, and both doors were slightly open so I listened quietly while I sat there. And I heard him say, “this is an emergency. I have this woman in my exam rook, and her trachea is almost completely closed. She has less the 5% of the airway open, and she must be seen as soon as possible. Then he calmly came back, and I had an appt for 10:15 am the next morning at the university of Utah in the ENT department. And he said repeatedly that they were fitting me in so don’t be late. By then I could see that he was getting anxious and really concerned.

 

So I went to that appt, saw Dr. Leland Johnson, who had all the test results. He sent me for a CT scan and said to come back immediately after, and he would read the results. So that scan confirmed to him that my trachea was closing fast. So fast that he couldn’t believe it and he said that. And I looked at his face, and he was so upset that he didn’t even try to hide it. I was confused and upset myself. And then he said he had to talk to his colleagues, and that he would call me in a couple of days. The next morning, he called at 8 am and said to be back up to the university by 6:30 am. And plan to stay for several hours. So I did. And I was scheduled for a surgery called a microlyryngoscopy (he probably said that when he called but I can’t remember). I went up the next morning and signed paperwork, and was rushed into surgery, and woke up in a couple of hours. My voice was a little hoarse, but I could still speak.

 

I’ve gone into a lot of detail here, but I was diagnosed with idiopathic sub glottis stenosis which is one of the rarest disorders in the world. I felt much better after that surgery as far as breathing. I thought that would be it. But it wasn’t. Over the next several years, I had a total of 14 surgeries on my trachea. And 8 of those were microlyrngoscopies. I ended up with several trachetomies, and 2 open airway surgeries. One was a laryngioplasticy where the took a rib and rebuilt my trachea using the cartilage from my rib. They literally slit my throat to get access to my trachea to do this. And by now I was working with what I called “a super specialist.” This was a 4-5 hour surgery. And I was in the ICU for about 48 hours under morphine. When I finally woke up I felt like vomiting and almost did, but somehow held it back because they showed me those stitches. I called the my “Frankenstein stitches” because they were black and totally visible.

 

Then I was in the hospital for 10 days. And I went through total unimaginable hell. Way too much to go into detail. But mo matter what, my trachea closed up again. I had several more of those micrlyrygoscopies until I just couldn’t take it anymore. And I told my husband that I was going to the hospital at the top of the hill where we still live to get a permanent tracheotomy. And he begged me not to go. And he finally looked up the phone number of Dr. Marshal Smith in the phone book. That was a feat in itself because he has a head injury, and could never find anything in the phone book. But he found it, and called the office secretary who screamed so loud that I could hear her and she was saying “stop her, stop her. I’ll get Dr Smith to call you immediately. And 5 minutes later he called, and asked if I could drive. I could, so he said to come to his clinic right away, and he’d be waiting for me. And he went down my nose with a device (I was very used to this by now) and went below my vocal cords to see the closure. And I was closed up again.

 

So I had the most extreme surgery the following year after having 3 more microlyrngoscopisies. And that was called a cricotracheal resection. They cut out over 2 inches of my trachea above and below the area that kept closing. That was a 10 hour surgery. And that time they separated my esophagus from my trachea which are held together by a ligament to get full access to my trachea. I remember how excited those residents were when they came in and told me this.

 

So an extremely long post here. But the biggest problem with what I have/had is breathing, but when it gets to this level your voice is effected no matter what. My voice became very quiet, but I could still speak on the phone and in person. I started on Xanax somewhere in all of this and had no idea what it was. It didn’t change my new voice a bit, but when I figured out what it was, I wanted off. And that’s how this Benzo mess started with me. After doing some basic research, I saw somewhere on the internet that I should cross to clonazepam to get off. So I asked my husbands pdoc (who originally started me on Xanax for too much stress) about the clonazepam, and she was happy to oblige. So I stated taking that after a very rough cross. And clonazepam did changed my voice considerably. By then, I had a new pdoc and she commented on how much my voice had changed. But it was still audible.

 

I managed to taper down from 3 mg to 1.5 mg using actavis clonazepam, but all that came to a screeching halt when Teva bought the actavis company. Since then I’ve spent way too much time being switch around on these generic versions of clonazepam, and with each switch my voice has gotten worse. I too speak in a whispery voice. I can tolerate noise as in a movie or tv if it’s not too loud, but I often want the tv turned down. My life has changed so much, I’m often totally despondent and feel like I’ll never get off this stuff. I feel hopeless to put it mildly.

[[Ti...]]

I won't be back here much more. Things just aren't going well.

[[Ly...]]

Oh, Tikobird, please don't let our stories discourage you.  I am in tears many times when I read some of our sharing times and feel that I need to get off the forum, too.  I ache so badly for all the buddies and what they are going through.  But I have also found that if I ever have questions or just need to unload or even just to express myself and know that there are those who FULLY understand my pain, this is the place.  Nobody in the "outside world" can fathom what it is like and it is lonely to be so misunderstood.  On this forum, the buddies understand and care.

 

If you need a break, take one.  I do, too, from time to time.  But you never know when there is someone that posts something that would be beneficial for you and might be a way of coping or some suggestion that helps you.

 

If some posts are disturbing, skip them and move on to something that you will find beneficial.  They are out there and I have found some helpful information.  ALL my doctors and everyone I've entrusted myself to in the medical profession have not known how to help me.  Only those who have been through it know and care and may have the helpful information you just might find is the "ticket" for you.

 

It was the initial tapering that really messed me up in the beginning because of the doctors' ignorance.  Jim Hawk's taper schedule to the rescue!

 

Is it easy?  No!  Is it possible?  Yes!    Time, dear one, time. 

 

Stay in touch from time to time if you must.  Just know that there are many here to help if/when you need it.

 

Wishing you the best.

 

Hang in there!

[[Ly...]]

Jlavogt and Intend,

 

Thanks for your responses.  I am so sorry that we all have to deal with such pain.

 

Please know that my tears flowed for you.

 

We're in this together. 

 

I really care.

[[In...]]

Thanks Lynn.

 

A lot of people here have previous medical problems. It seems to me that its kind Of common as far as the signatures I see.

 

If my story of my particular rare disorder and what was done about, I can’t afford to worry about that.

 

It happened, I sufferered, had correctivee surgeries, and now these Benzo and genercic switches (a total of 5 switches so far) have interfered with my tapering.

 

So someone wants to leave the thread or bb altogether? All I can say is “go ahead and do that. Do whatever you think is best for.”

.

[[Fr...]]

Thank you Lynn. It’s heart breaking for all suffering. I have faith one day this will be over and am happy to have others to connect with for support.

[[By...]]

Anyone else having a hard time with the recent shortage of the best generics of Clonazepam?

 

I have been taking the same generic for many years and am in the middle of a taper. Suddenly my last prescription was some pink pill I had never seen which gave me insomnia. So I switched to a yellow pill from another pharmacy and now I feel I'm going through pretty rough withdrawals and I haven't cut my dosage in 4 weeks. Today was hell.

 

The only solution I can think of is to somehow get ahold of the brand which I think is made by Roche. Any ideas? I have had two days of misery.

THIS IS EXACTLY WHAT HAPPENED TO ME!

I was in the middle of a taper from teva and they discontinued it!!

I tried actavis (yellow pill) and it put me in bad withdrawals.

I had been on solco for a few months and it had worked (just a bit of irritability) so I tried it again and it suddenly no longer worked! Upped dose...side effects!

I'm on name brand for 4 days now and still having issues!

I'm on my original dose now of name brand(1mg once per day) and getting interdose anxiety.

Doc told me to up dose until I slept but it made me hyper instead??

I haven't slept right for a few weeks

I just want to adjust to the name brand but don't know how long it'll take

I'm so discouraged

Oh and  trust me I called teva and ripped them a new one

[[In...]]

Anyone else having a hard time with the recent shortage of the best generics of Clonazepam?

 

I have been taking the same generic for many years and am in the middle of a taper. Suddenly my last prescription was some pink pill I had never seen which gave me insomnia. So I switched to a yellow pill from another pharmacy and now I feel I'm going through pretty rough withdrawals and I haven't cut my dosage in 4 weeks. Today was hell.

 

The only solution I can think of is to somehow get ahold of the brand whicI think is made by Roche. Any ideas? I have had two days of misery.

THIS IS EXACTLY WHAT HAPPENED TO ME!

I was in the middle of a taper from teva and they discontinued it!!

I tried actavis (yellow pill) and it put me in bad withdrawals.

I had been on solco for a few months and it had worked (just a bit of irritability) so I tried it again and it suddenly no longer worked! Upped dose...side effects!

I'm on name brand for 4 days now and still having issues!

I'm on my original dose now of name brand(1mg once per day) and getting interdose anxiety.

Doc told me to up dose until I slept but it made me hyper instead??

I haven't slept right for a few weeks

I just want to adjust to the name brand but don't know how long it'll take

I'm so discouraged

Oh and  trust me I called teva and ripped them a new one

 

Byrjun,

 

This has happened to so many of us here. It has happened to me.

 

And I can’t count the calls and emails I have made to Teva.

 

I actually started out on Actavis who Teva bought. Then switched to Sandoz who stopped making clonazepam. Then back to actavis when it was suddenly available again. Then back to Sandoz again when suddenly Actavis unavailable again.

 

Can’t hardly even recount all this. All I know now is that I recently went to the dissolvable tabletsby teva. So that’s 6 generic switches for me.

 

Teva spent all spring and summer promoting Actavis as their new clonazepam AGAIN. I’ve not tried the brand K as I can afford it, but many can deal with it either. They have caused so many problems for so many people here, and most likely “out there” also. Not all of us can just take whatever is handed out at the pharmacy.

 

If you get a chance, please tell me what teva said to you.

 

I’d just like to know. I can’t get Actavis anymore here. It just seems to vary by state what one can get and can’t get. It’s a rough situation for many. I know how you feel.

 

 

[[Ti...]]

I'd been taking Trazodone only for sleep since a few years ago. A couple of decades ago I was prescribed three per day after being told I have an anxiety disorder. I'm starting with CBD oil now which is good for anxiety and insomnia. My main problem is anxiety about sleeping since I first had problems staying asleep. I'm learning meditation and other ways of relaxation. The main thing with anxiety is the ruminating about the symptoms. It's a vicious circle but an anxiety attack can be taken care of.

[[In...]]

I'd been taking Trazodone only for sleep since a few years ago. A couple of decades ago I was prescribed three per day after being told I have an anxiety disorder. I'm starting with CBD oil now which is good for anxiety and insomnia. My main problem is anxiety about sleeping since I first had problems staying asleep. I'm learning meditation and other ways of relaxation. The main thing with anxiety is the ruminating about the symptoms. It's a vicious circle but an anxiety attack can be taken care of.

 

And? Tikobird, can’t really comment on Trazadone because I don’t take it.

 

But do you take generic clonazepam of any sort? That’s what this thread is about.

 

You’ve undoubtedly highlighted some very good ways to deal with anxiety however.

[[By...]]

Anyone else having a hard time with the recent shortage of the best generics of Clonazepam?

 

I have been taking the same generic for many years and am in the middle of a taper. Suddenly my last prescription was some pink pill I had never seen which gave me insomnia. So I switched to a yellow pill from another pharmacy and now I feel I'm going through pretty rough withdrawals and I haven't cut my dosage in 4 weeks. Today was hell.

 

The only solution I can think of is to somehow get ahold of the brand whicI think is made by Roche. Any ideas? I have had two days of misery.

THIS IS EXACTLY WHAT HAPPENED TO ME!

I was in the middle of a taper from teva and they discontinued it!!

I tried actavis (yellow pill) and it put me in bad withdrawals.

I had been on solco for a few months and it had worked (just a bit of irritability) so I tried it again and it suddenly no longer worked! Upped dose...side effects!

I'm on name brand for 4 days now and still having issues!

I'm on my original dose now of name brand(1mg once per day) and getting interdose anxiety.

Doc told me to up dose until I slept but it made me hyper instead??

I haven't slept right for a few weeks

I just want to adjust to the name brand but don't know how long it'll take

I'm so discouraged

Oh and  trust me I called teva and ripped them a new one

 

Byrjun,

 

This has happened to so many of us here. It has happened to me.

 

And I can’t count the calls and emails I have made to Teva.

 

I actually started out on Actavis who Teva bought. Then switched to Sandoz who stopped making clonazepam. Then back to actavis when it was suddenly available again. Then back to Sandoz again when suddenly Actavis unavailable again.

 

Can’t hardly even recount all this. All I know now is that I recently went to the dissolvable tabletsby teva. So that’s 6 generic switches for me.

 

Teva spent all spring and summer promoting Actavis as their new clonazepam AGAIN. I’ve not tried the brand K as I can afford it, but many can deal with it either. They have caused so many problems for so many people here, and most likely “out there” also. Not all of us can just take whatever is handed out at the pharmacy.

 

If you get a chance, please tell me what teva said to you.

 

I’d just like to know. I can’t get Actavis anymore here. It just seems to vary by state what one can get and can’t get. It’s a rough situation for many. I know how you feel.

I've heard many people say they switched actavis formula as well and that its much weaker than the old one!

 

Teva basically said they were sorry I was having trouble but that my doctor could prescribe something else for me. I said no she couldn't. I cant take valium or any other benzo.

She said they still made the wafers but I told her I had an allergic reaction to them.

She just said she was sorry I was having trouble but that their actavis was a good med.

So of course I shot back with "then how come its giving people seizures?!"

She was quiet and I told her to do a google search, that I know it wasn't her fault but her company was making people sick.

I was tempted to threaten to sue but...

I did have one lady say if they got enough complaints they may consider bringing it back but she wasn't sure

In the end I'm trying to get a brand exception for the name brand from my doc/insurance.

I can literally have no other pill

Still trying to adjust and scared ill never sleep again

 

[[Ti...]]

Oh, Tikobird, please don't let our stories discourage you.  I am in tears many times when I read some of our sharing times and feel that I need to get off the forum, too.  I ache so badly for all the buddies and what they are going through.  But I have also found that if I ever have questions or just need to unload or even just to express myself and know that there are those who FULLY understand my pain, this is the place.  Nobody in the "outside world" can fathom what it is like and it is lonely to be so misunderstood.  On this forum, the buddies understand and care.

 

If you need a break, take one.  I do, too, from time to time.  But you never know when there is someone that posts something that would be beneficial for you and might be a way of coping or some suggestion that helps you.

 

If some posts are disturbing, skip them and move on to something that you will find beneficial.  They are out there and I have found some helpful information.  ALL my doctors and everyone I've entrusted myself to in the medical profession have not known how to help me.  Only those who have been through it know and care and may have the helpful information you just might find is the "ticket" for you.

 

It was the initial tapering that really messed me up in the beginning because of the doctors' ignorance.  Jim Hawk's taper schedule to the rescue!

 

Is it easy?  No!  Is it possible?  Yes!    Time, dear one, time. 

 

Stay in touch from time to time if you must.  Just know that there are many here to help if/when you need it.

 

Wishing you the best.

 

Hang in there!

 

I take 1 mg. of Trazodone at night for insomnia. I used to take 1 mg. 3 times a day because this idiot Psych treated everything with pharmaceuticals. The problem with that is there are natural ways to calm anxiety but I guess no one was aware back then. He called himself a psychopharmacologist. Now that's a rare term. I'm currently using CBD oil. A friend of mine is working for a company that's got the best quality. It's organic, non-GMO and no THC. Between the CBD oil and meditation and therapy suggestions about changing the way people with GAD think I may just get off this. The company is hempworx.com. They have beauty products, animal treats (my dog gets so anxious if there's a storm). There are so many good quality brands and it's FDA approved. Generalized anxiety disorder is mostly about how you think and ruminate about the anxious thoughts. There is help out there without taking drugs. The CBD oil comes in a variety of milligrams depending on the problem. It helps sleep, anxiety, cancer, and then some.

[[In...]]

Byrum,

 

Thank you for filling me in on that conversation. Teva recently located from Pennsylvania to New Jersey as their US headquarters. It’s has left a “shell” of customer service people to handle these calls.

 

Their goal overall was to pay off the tremendous debt of $40 billion that they paid to acquire Actavis, which for the life of me I don’t know why they did buy Actavis.

 

In order to pay off the debt, they have payed off thousands of people, and closed manufacturing facilities all over the US. Ironically, we’ve had 2 of those facilities here in this state of Utah, and they closed one of those down. The other one is still operating at full capicicity. I called them also. and was told that they made both teva and actavis products there.

 

I have never taken a teva product before as far as I know. But I’m now taking those dissolving tablets by teva as I mentioned.

 

The Actavis is a good med for me, but not necessarily for you or anyone else. We are on BB, where most people are very sensitive to changes in their benzo brands. I’m one of those and so are you.

 

I know exactly what you mean when you say you had talked to teva. They are operating on a skeleton crew there in New Jersey and basically been told what to tell people. I just got to the point where I realized that was going on and just gave up with calling them or emailing them.

 

Teva has caused trouble for themselves and for the people that work for them and for people like us.

 

I was unaware that people were having seizures but then again, if these lower quality clonazepams are being used, they are not the same and are weaker and could cause seizures.

 

I hope you get that brand exception and that it works for you.

 

We all must remember that teva in operationing in Israel and everything we hear from US folks for teva is coming from that board of directors in Israel.

 

I would like to see teva rejuvenate and come back as the power house they once were. Those dissolving tablets are expensive also so I’m not thrilled about that. But I’m using them so I can do nothing else at the moment. The pharmacy was so concerned about the expense that they prepared those, and they also prepared the regular tablet which is accord brand around here. And I also found solco around here at a different pharmacy. I just didn’t want to fool around with any more of this “trying this and trying that.” It’s just too hard to constantly be changing generics like it’s happened with all of us.

 

Please keep me updated as I’ll always answer this thread. It’s been here for a long time as you can see from the long line of people who posted. They’re all still on BB as far as I know.

[[Ma...]]

Intend, can I please ask you why you are having trouble speaking?  Is it because of your withdrawal?

 

I have developed severe hyperacusis during my withdrawal and cannot stand any sounds at all.  I need earplugs for most things now.  I feel like fainting when I hear a pen drop or something "snap" or paper being crumbled, etc.  When people talk, it hurts my ears and head so much, they have to speak in a very soft tone.  I have to speak in a whisper or just above a whisper.  It is hurting my head and throat to talk.  I cannot chew food anymore.  Everything has to be done up like a soup or drink.  It is becoming unbearable.

 

I went to a specialist and he said I "do not" have hyperacusis!  Imagine!  I told him I was coming off of a benzo and that this started during my tapering.  Everyone of my senses is heightened--especially this one.  Smell, taste, tough, etc. all heightened.  But the hyperacusis is turning me into an invalid.  I cannot leave my house.  Ear plugs make my tinnitus scream in my head and I become disoriented, etc.

 

Anyone else have this or heard of this? 

 

I didn't know if you can't talk for the same reason I can't.

 

And to think I still have such a long way to go to get off this poison.  It leaves me feeling hopeless.  And I mean "hopeless."

 

Lynn,

 

Of course you can ask me, and I will tell you.

 

Several years ago and literally out of the blue, I began to have trouble breathing. At first, I could cope with it because it occurred when I climb stairs or rushed to get somewhere when I walked. But it got to the point where I couldn’t get across a room with stopping and gasping for air.

 

I seriously don’t remember how I handled this; but I know it was hard. And as far as stairs, I’d stop and gasp for airs numerous times before I got to the top. It’s hard to remember what it was like when I walked slowly anywhere, but I know I did it.

 

And then I went to a doctor for a completely different reason, and during the exam, she listened to my lungs and my breathing. And she said, “you sure aren’t pushing much air through those lungs.” And then the made an appointment for me at a hospital to have them do some testing. So there, I had an x-ray of my lungs which were clear, and what’s called an arterial tap that indicates how much oxygen in in your bloodstream, and I had 98% oxygenation which is over the normal rate of 94-95%. So that was not a problem either.

 

From there, I went to the speech pathology dept. That person ran her tests which I can’t remember, but after she was done, she said, “I’m not sure what’s wrong here, but it seems to be in your upper airway. So these reports went back to the original doctor, and she called me and said she’d made an appt for me to see an ENT. So I saw him, and he put on a type of “head strap” that has a mirror on it. And then he put a small, thin metal device with a tiny light at the end of it to the back of my throat.

 

And I could feel it touch the back of my throat. It kind of hurt, and I got frightened. Then he pulled it out, took off that head strap, and said he’d be right back. He left his exam room and went into his office, and both doors were slightly open so I listened quietly while I sat there. And I heard him say, “this is an emergency. I have this woman in my exam rook, and her trachea is almost completely closed. She has less the 5% of the airway open, and she must be seen as soon as possible. Then he calmly came back, and I had an appt for 10:15 am the next morning at the university of Utah in the ENT department. And he said repeatedly that they were fitting me in so don’t be late. By then I could see that he was getting anxious and really concerned.

 

So I went to that appt, saw Dr. Leland Johnson, who had all the test results. He sent me for a CT scan and said to come back immediately after, and he would read the results. So that scan confirmed to him that my trachea was closing fast. So fast that he couldn’t believe it and he said that. And I looked at his face, and he was so upset that he didn’t even try to hide it. I was confused and upset myself. And then he said he had to talk to his colleagues, and that he would call me in a couple of days. The next morning, he called at 8 am and said to be back up to the university by 6:30 am. And plan to stay for several hours. So I did. And I was scheduled for a surgery called a microlyryngoscopy (he probably said that when he called but I can’t remember). I went up the next morning and signed paperwork, and was rushed into surgery, and woke up in a couple of hours. My voice was a little hoarse, but I could still speak.

 

I’ve gone into a lot of detail here, but I was diagnosed with idiopathic sub glottis stenosis which is one of the rarest disorders in the world. I felt much better after that surgery as far as breathing. I thought that would be it. But it wasn’t. Over the next several years, I had a total of 14 surgeries on my trachea. And 8 of those were microlyrngoscopies. I ended up with several trachetomies, and 2 open airway surgeries. One was a laryngioplasticy where the took a rib and rebuilt my trachea using the cartilage from my rib. They literally slit my throat to get access to my trachea to do this. And by now I was working with what I called “a super specialist.” This was a 4-5 hour surgery. And I was in the ICU for about 48 hours under morphine. When I finally woke up I felt like vomiting and almost did, but somehow held it back because they showed me those stitches. I called the my “Frankenstein stitches” because they were black and totally visible.

 

Then I was in the hospital for 10 days. And I went through total unimaginable hell. Way too much to go into detail. But mo matter what, my trachea closed up again. I had several more of those micrlyrygoscopies until I just couldn’t take it anymore. And I told my husband that I was going to the hospital at the top of the hill where we still live to get a permanent tracheotomy. And he begged me not to go. And he finally looked up the phone number of Dr. Marshal Smith in the phone book. That was a feat in itself because he has a head injury, and could never find anything in the phone book. But he found it, and called the office secretary who screamed so loud that I could hear her and she was saying “stop her, stop her. I’ll get Dr Smith to call you immediately. And 5 minutes later he called, and asked if I could drive. I could, so he said to come to his clinic right away, and he’d be waiting for me. And he went down my nose with a device (I was very used to this by now) and went below my vocal cords to see the closure. And I was closed up again.

 

So I had the most extreme surgery the following year after having 3 more microlyrngoscopisies. And that was called a cricotracheal resection. They cut out over 2 inches of my trachea above and below the area that kept closing. That was a 10 hour surgery. And that time they separated my esophagus from my trachea which are held together by a ligament to get full access to my trachea. I remember how excited those residents were when they came in and told me this.

 

So an extremely long post here. But the biggest problem with what I have/had is breathing, but when it gets to this level your voice is effected no matter what. My voice became very quiet, but I could still speak on the phone and in person. I started on Xanax somewhere in all of this and had no idea what it was. It didn’t change my new voice a bit, but when I figured out what it was, I wanted off. And that’s how this Benzo mess started with me. After doing some basic research, I saw somewhere on the internet that I should cross to clonazepam to get off. So I asked my husbands pdoc (who originally started me on Xanax for too much stress) about the clonazepam, and she was happy to oblige. So I stated taking that after a very rough cross. And clonazepam did changed my voice considerably. By then, I had a new pdoc and she commented on how much my voice had changed. But it was still audible.

 

I managed to taper down from 3 mg to 1.5 mg using actavis clonazepam, but all that came to a screeching halt when Teva bought the actavis company. Since then I’ve spent way too much time being switch around on these generic versions of clonazepam, and with each switch my voice has gotten worse. I too speak in a whispery voice. I can tolerate noise as in a movie or tv if it’s not too loud, but I often want the tv turned down. My life has changed so much, I’m often totally despondent and feel like I’ll never get off this stuff. I feel hopeless to put it mildly.

 

Oh Intend, I had no idea you had been through all that.  I knew the benzo problems with your voice but not the rest .  I swear you are one of the strongest women I have ever meet.  You amaze me.

Love you, Mary 🌹🌹🌹🌹🌹🌹🌹🌹🐱🐾🐾🐾🐾🐾🐾

[[In...]]

Oh Mary,

 

I have been through so much I just couldn’t do it again. And it seems that the tears come to me now more easily than ever before about so many things.

 

But rereading what I posted to Lynn barely a month or so ago, has the tears running down my face.

 

I am just hoping that getting off clonazepam will make a difference in my voice again. There’s this area of the brain that’s called Broca’s area that controls speaking ability, and it must be part of the CNS I think. So I just keep hoping that getting off will make a difference.

 

I have thought often that I haven’t mentioned it to my pdoc in these terms. But I’ve got to remember to do that. He’s a smart one and has seen a lot. His daughter is a speech pathologist so he’s asked her about Idiopathic Subglottic stenosis, so he gets that very well. Never met a person like him. He listens, learns, and we work so well together.

[[Ma...]]

Oh Mary,

 

I have been through so much I just couldn’t do it again. And it seems that the tears come to me now more easily than ever before about so many things.

 

But rereading what I posted to Lynn barely a month or so ago, has the tears running down my face.

 

I am just hoping that getting off clonazepam will make a difference in my voice again. There’s this area of the brain that’s called Broca’s area that controls speaking ability, and it must be part of the CNS I think. So I just keep hoping that getting off will make a difference.

 

I have thought often that I haven’t mentioned it to my pdoc in these terms. But I’ve got to remember to do that. He’s a smart one and has seen a lot. His daughter is a speech pathologist so he’s asked her about Idiopathic Subglottic stenosis, so he gets that very well. Never met a person like him. He listens, learns, and we work so well together.

 

After all that, the least you deserve is a great doctor.  Please no tears, now I have them.  I can't imagine such an ordeal.  Love you Intend, Mary 🌹🌹🌹🌹🌹🌹🌹🌹🌹

[[In...]]

Mary,

 

I’m definitely going to discuss Broca’s area with him in January. In fact I’ll be looking on google a lot about that area of the brain. Wonder if it’s on both sides or just the left side.

 

Time for Dr. google.

[[By...]]

Genentech is now the manufacturer of brand name Klonopin. I am going to take that for the duration of my taper to insure I'm getting the same medicine with every prescription.

 

I changed over to the brand of Klonopin about a year ago because I got tired of the continual generic discontinuations.  It sure makes these a lot more dependable.  You’re doing the right thing!

How do you taper brand name with that giant k cutout in the middle?

Im still stabilizing from the whole teva fiasco but moved to name brand and was kinda discouraged by the cutout

[[By...]]

Byrum,

 

Thank you for filling me in on that conversation. Teva recently located from Pennsylvania to New Jersey as their US headquarters. It’s has left a “shell” of customer service people to handle these calls.

 

Their goal overall was to pay off the tremendous debt of $40 billion that they paid to acquire Actavis, which for the life of me I don’t know why they did buy Actavis.

 

In order to pay off the debt, they have payed off thousands of people, and closed manufacturing facilities all over the US. Ironically, we’ve had 2 of those facilities here in this state of Utah, and they closed one of those down. The other one is still operating at full capicicity. I called them also. and was told that they made both teva and actavis products there.

 

I have never taken a teva product before as far as I know. But I’m now taking those dissolving tablets by teva as I mentioned.

 

The Actavis is a good med for me, but not necessarily for you or anyone else. We are on BB, where most people are very sensitive to changes in their benzo brands. I’m one of those and so are you.

 

I know exactly what you mean when you say you had talked to teva. They are operating on a skeleton crew there in New Jersey and basically been told what to tell people. I just got to the point where I realized that was going on and just gave up with calling them or emailing them.

 

Teva has caused trouble for themselves and for the people that work for them and for people like us.

 

I was unaware that people were having seizures but then again, if these lower quality clonazepams are being used, they are not the same and are weaker and could cause seizures.

 

I hope you get that brand exception and that it works for you.

 

We all must remember that teva in operationing in Israel and everything we hear from US folks for teva is coming from that board of directors in Israel.

 

I would like to see teva rejuvenate and come back as the power house they once were. Those dissolving tablets are expensive also so I’m not thrilled about that. But I’m using them so I can do nothing else at the moment. The pharmacy was so concerned about the expense that they prepared those, and they also prepared the regular tablet which is accord brand around here. And I also found solco around here at a different pharmacy. I just didn’t want to fool around with any more of this “trying this and trying that.” It’s just too hard to constantly be changing generics like it’s happened with all of us.

 

Please keep me updated as I’ll always answer this thread. It’s been here for a long time as you can see from the long line of people who posted. They’re all still on BB as far as I know.

There are some that the actavis works great for. Some like accord. Solco did work for me but I realize now the irritability must have been early as? When I tried it again and it didn't work I just attributed my we symptoms to the pill "no longer working" not realizing that it would take awhile for it to start working right.

K is an anti seizure med too so I have read about people who took it for seizures having breakthru seizures with the change. But as far as I know no one getting seizures from the change from wd.

I slept okay last night (not as long as I wanted to though) and a lot of my other symptoms are starting to ever So slowly go away.

The worst part now is feeling like I have to constantly pee but not get much out. So it wakes me up a lot. and omg it stinks!!

[[In...]]

Good question Byrjun.

 

I’d just ask circlestar. I just checked her posting history, and she’s still here.

 

Go to her profile history and and click on “show posts,” and you’ll see the last post made.

 

I guess you could send her a pm about this also. Looks like she’s about done, so I’d do that ASAP.

 

This post was referring to your question about cutting the brand K with the big Star in the middle. You posted something else right after so I’ll look at that now.

[[By...]]

Good question Byrjun.

 

I’d just ask circlestar. I just checked her posting history, and she’s still here.

 

Go to her profile history and and click on “show posts,” and you’ll see the last post made.

 

I guess you could send her a pm about this also. Looks like she’s about done, so I’d do that ASAP.

Thank you!!!

[[In...]]

Byrum,

 

Thank you for filling me in on that conversation. Teva recently located from Pennsylvania to New Jersey as their US headquarters. It’s has left a “shell” of customer service people to handle these calls.

 

Their goal overall was to pay off the tremendous debt of $40 billion that they paid to acquire Actavis, which for the life of me I don’t know why they did buy Actavis.

 

In order to pay off the debt, they have payed off thousands of people, and closed manufacturing facilities all over the US. Ironically, we’ve had 2 of those facilities here in this state of Utah, and they closed one of those down. The other one is still operating at full capicicity. I called them also. and was told that they made both teva and actavis products there.

 

I have never taken a teva product before as far as I know. But I’m now taking those dissolving tablets by teva as I mentioned.

 

The Actavis is a good med for me, but not necessarily for you or anyone else. We are on BB, where most people are very sensitive to changes in their benzo brands. I’m one of those and so are you.

 

I know exactly what you mean when you say you had talked to teva. They are operating on a skeleton crew there in New Jersey and basically been told what to tell people. I just got to the point where I realized that was going on and just gave up with calling them or emailing them.

 

Teva has caused trouble for themselves and for the people that work for them and for people like us.

 

I was unaware that people were having seizures but then again, if these lower quality clonazepams are being used, they are not the same and are weaker and could cause seizures.

 

I hope you get that brand exception and that it works for you.

 

We all must remember that teva in operationing in Israel and everything we hear from US folks for teva is coming from that board of directors in Israel.

 

I would like to see teva rejuvenate and come back as the power house they once were. Those dissolving tablets are expensive also so I’m not thrilled about that. But I’m using them so I can do nothing else at the moment. The pharmacy was so concerned about the expense that they prepared those, and they also prepared the regular tablet which is accord brand around here. And I also found solco around here at a different pharmacy. I just didn’t want to fool around with any more of this “trying this and trying that.” It’s just too hard to constantly be changing generics like it’s happened with all of us.

 

Please keep me updated as I’ll always answer this thread. It’s been here for a long time as you can see from the long line of people who posted. They’re all still on BB as far as I know.

There are some that the actavis works great for. Some like accord. Solco did work for me but I realize now the irritability must have been early as? When I tried it again and it didn't work I just attributed my we symptoms to the pill "no longer working" not realizing that it would take awhile for it to start working right.

K is an anti seizure med too so I have read about people who took it for seizures having breakthru seizures with the change. But as far as I know no one getting seizures from the change from wd.

I slept okay last night (not as long as I wanted to though) and a lot of my other symptoms are starting to ever So slowly go away.

The worst part now is feeling like I have to constantly pee but not get much out. So it wakes me up a lot. and omg it stinks!!

 

Byrjun,

 

I’m sometimes at a loss to say why one works and another doesn’t.

 

It’s mainly because all generics of Valium don’t work the same, and all generics of alprazolam don’t work the same. In fact, all generics of any drug like a heart med don’t work the same because generic makers in general don’t have access to the original formula and process that the brand drug uses.

 

A patented drug like brand klonopin is made the same no matter what. But actually Roche, owner of Genentech, is off patent, but it’s still being made because there’s a market for it. So they will use the same “recipe” that they’ve always used because some people need that instead of all these generics which give them trouble.

 

And a lot of folks here on BB don’t notice a difference in these generics while others do.

 

I notice the difference and it seems you do also.