And now this

[[er...]]

I spoke too soon, the tinnitus came roaring back. And now it gets worse. I went to one of the larger medical centers in the state, had some tests done and found out that I have Charcot Marie Tooth disease. Those are the names of three doctors. Nothing to do with the teeth. I went looking for Charcot Marie Tooth disease online support forums but the only replies to threads were over two years old. It's a disease that only gets worse for everyone that has it. There is no cure. The treatment is pain medication and leg braces for when it gets that far. It can attack the audio nerves of the ears. I was wondering why my tinnitus would go away for a day or two only to come back even worse. I wouldn't be posting this here but I have no place else to go. The tinnitus form pushes benzos as a treatment for severe tinnitus. I've come down from 6MGs of Klonpoin down to .5MGs daily. Everyone says that it will get better but for me it won't. I sent an email to my oldest daughter telling her what was going on and she never replied. I'm so despondent. 

This stuff should be posted on another another forum but as I mentioned I checked several and either there are no replies of two year old threads. I have no where else to go.

[[Tw...]]

Did you have bad tinnitus pre benzos? How did they decide you have this disease?

[[pn...]]

Just wondered if other relatives have the syndrome? It seems to be an inherited disease. Did you have genetic testing done?

 

The reason I ask is that tinnitus coming and going seems to be the most common symptom of withdrawal. I don't think anyone here has escaped it. There are so many symptoms associated with benzo withdrawal, that doctors often misdiagnose it. My own doctor tells me I have COPD, heart failure, depression and numerous other things. I think that everything I have stems from z drug use and tolerance withdrawal.

 

Prayers for you, my friend.

 

[[er...]]

They gave me two tests at the neuro-diagnostics center at the UMSS Memorial Medical Center in Worcester MA. One test they inserted a needle with a sensor at the end of it in-between my muscles to test the nerve impulses. Then they gave me series of shocks to also test the nerve reactions. I have always had high arches in my feet with hammer toes. I didn't know that was because of Charcot Marie Tooth disease. I just thought I had f**ked up looking feet. LOL. The tinnitus started over a year ago and just keeps getting worse. On top of the numbness in my feet and legs spreading I started having a tingling in the back of the neck up into my scalp accompanied by a feeling like my skins crawling. If the feeling is worse on one side that's where the tinnitus will be worse and vice versa. Most of the time it feels like it's coming from the middle of my brain.

The tinnitus has gotten worse as the numbness and tingling/skin crawling thing has progressed. 

[[er...]]

Just wondered if other relatives have the syndrome? It seems to be an inherited disease. Did you have genetic testing done?

 

 

I was adopted so no help there... I didn't have a genetic test done. It is an inherited disease. I didn't start walking as soon as I should have as a child.

[[no...]]

I spoke too soon, the tinnitus came roaring back. And now it gets worse. I went to one of the larger medical centers in the state, had some tests done and found out that I have Charcot Marie Tooth disease. Those are the names of three doctors. Nothing to do with the teeth. I went looking for Charcot Marie Tooth disease online support forums but the only replies to threads were over two years old. It's a disease that only gets worse for everyone that has it. There is no cure. The treatment is pain medication and leg braces for when it gets that far. It can attack the audio nerves of the ears. I was wondering why my tinnitus would go away for a day or two only to come back even worse. I wouldn't be posting this here but I have no place else to go. The tinnitus form pushes benzos as a treatment for severe tinnitus. I've come down from 6MGs of Klonpoin down to .5MGs daily. Everyone says that it will get better but for me it won't. I sent an email to my oldest daughter telling her what was going on and she never replied. I'm so despondent. 

This stuff should be posted on another another forum but as I mentioned I checked several and either there are no replies of two year old threads. I have no where else to go.

Hi Ernie    I'm sorry you've been given this diagnosis, but here is the thing I've been misdiagnosed for year's with some bad ''illnesses' and it turns out EVERYTHING is Benzo withdrawal  related, not the diseases I believed I had for year's. 

 

Thanks to the medical fraternity being WRONG and would kill me and keep me confined to bed for however long I had left. And I had already spent year's in that position, they also diagnosed a family member with MS, and its not its withdrawal, Benzo withdrawal mimics lots of different illnesses perfectly.

 

 

I even had a couple of major operations I now know I never needed and the prognosis for my future was bleak according to the medical profession, and I'm not the only one other this has happened to lots of people past and present on here and all along it was Benzo related. I was also rushed into hospital and according to the Consultant all their test showed I was having a big heart attack and I was insisting it wasn't but I had no idea it was Benzos just I wasn't having a heart attack. 

 

They ripped my clothes off while rushing me down a corridor to a crash unit and were preparing me for surgery while I was still protesting they were wrong. They gave me an emergency angiogram in the operating theatre and guess what? MY HEART, ARTERIES WERE ALL PERFECT!!!!!  :tickedoff:

 

Ernie they've misdiagnosed me for year's don't give up hope I bet the bastards are wrong about you as well, and a LOT of the symptoms for Charcot-Marie-Tooth Disease, are the same as Benzo withdrawal symptoms. So how did they come to this conclusion about you? What test's did they do?

 

 

 

Love Nova xxx :smitten:

 

[[er...]]

what test's did they do?

 

 

 

They gave me two tests at the neuro-diagnostics center at the UMSS Memorial Medical Center in Worcester MA. One test they inserted a needle with a sensor at the end of it in-between my muscles to test the nerve impulses. Then they gave me series of shocks to also test the nerve reactions. I have always had high arches in my feet with hammer toes.

[[no...]]

I didn't know that was because of Charcot Marie Tooth disease. I just thought I had f**ked up looking feet. LOL. The tinnitus started over a year ago and just keeps getting worse. On top of the numbness in my feet and legs spreading I started having a tingling in the back of the neck up into my scalp accompanied by a feeling like my skins crawling. If the feeling is worse on one side that's where the tinnitus will be worse and vice versa. Most of the time it feels like it's coming from the middle of my brain.

The tinnitus has gotten worse as the numbness and tingling/skin crawling thing has progressed.

 

Ernie I have ALL the above from Benzo withdrwal plus a myriad of others, and what you said about you feet, my ex one day remarked that ''you got feet like a Troglodyte'' to which I thought he was taking the piss as people have remarked for years how dainty my feet are a considering my height. Until I looked down and there were a pair of feet that looked like they been hit with a sledge hammer and swapped with a hobbit's feet first. 

 

Love Nova xxx  :smitten:

[[er...]]

That's funny

[[Bu...]]

I agree with Nova, the tinnitus is probably all benzo related... You mentioned it only started after you tapered from 6mgs to .5, benzo wd effects, imho. Give it time, doctors are often wrong and love their expensive little testing devices. 

 

 

Wilson

[[er...]]

I think you may be right about the tinnitus being withdrawal related. That gives me more hope. I'm sure I have the CMT though. Too many things make sense now. I had a lot of the symptoms of that condition before I started my taper and I can't attribute everything to doing a taper. At two years old my parents took me to a doctor wondering why I wasn't walking yet. They didn't have benzos WAAAAY back then. I'm 66 now.

[[Bu...]]

 

 

Yep Ernie, it's Benzos... That ringing you here is a wakeup call to get off of the benzos now! 

 

Forget about the CMT, you got enough on your plate right now... Replace thoughts of CMT and Benzo stuff with happy things. Go for a hike, ride a bike, pick up a new hobby (guitar), nature rivals a vacuum, what will replace the benzos? Make it something extraordinary!

 

Wilson 

[[er...]]

I also notice that anything that makes it better it will just make it worse. Anything that I have tried in the past 16 months for my tinnitus has made it better for about two or three days and then it comes roaring back every time. That even includes sound therapy. I always think that I have found the answer. Gabapentin, Valerian Root, Kratom, alcohol, etc. I also think gabapentin delays the healing process. IMHO.

 

One other thing. This is probably going to get me into trouble but I don't mean any disrespect to anyone as everyone has always been very supportive. But I do get confused. Even more than I already am. One time I read that I need to keep tapering until I finish my taper and don't stop. Then I hear that we're supposed to listen to our bodies. I read a lot about tolerance withdrawal. Then I receive a reply that tolerance withdrawal is very rare. Both of my doctors, my primary care doctor and the doctor that prescribes my Klonopin wants me to stay at .5MGs a day. Their reason is because I have been at such a large dose for 20 years. It's like my brain doesn't know weather to shit or go blind. As I said, I appreciate all the support that I receive here, but I am soooo confused.

 

It's like a catch 22. The lower I go the louder the ringing gets. Then I hold hoping that it will get better but it doesn't. Then I taper again only to have it get worse. Then I hold again and nothing improves.

[[Gr...]]

I also notice that anything that makes it better it will just make it worse. Anything that I have tried in the past 16 months for my tinnitus has made it better for about two or three days and then it comes roaring back every time. That even includes sound therapy. I always think that I have found the answer. Gabapentin, Valerian Root, Kratom, alcohol, etc. I also think gabapentin delays the healing process. IMHO.

 

One other thing. This is probably going to get me into trouble but I don't mean any disrespect to anyone as everyone has always been very supportive. But I do get confused. Even more than I already am. One time I read that I need to keep tapering until I finish my taper and don't stop. Then I hear that we're supposed to listen to our bodies. I read a lot about tolerance withdrawal. Then I receive a reply that tolerance withdrawal is very rare. Both of my doctors, my primary care doctor and the doctor that prescribes my Klonopin wants me to stay at .5MGs a day. Their reason is because I have been at such a large dose for 20 years. It's like my brain doesn't know weather to shit or go blind. As I said, I appreciate all the support that I receive here, but I am soooo confused.

 

It's like a catch 22. The lower I go the louder the ringing gets. Then I hold hoping that it will get better but it doesn't. Then I taper again only to have it get worse. Then I hold again and nothing improves.

I have been doing tinnitus retraining therapy with a sound device, and the person who created the therapy says benzos can hinder the process. Something about them affecting the neuroplasticity of the brain which is what TRT works with to lower the perception of tinnitus. Basically you can't rewire your brain properly with benzos screwing around with it. That was part of my motivation to get off benzos.(Benzos didn't cause my t, I got it from a sudden hearing loss and I was on no meds at the time.)

[[er...]]

I also read in studies studies using TDCS to treat tinnitus people on any benzo were excluded for the same reason. I often wonder if doing a hold just keeps the brain in a state of some sort of benzo limbo...

[[NJ...]]

I also notice that anything that makes it better it will just make it worse. Anything that I have tried in the past 16 months for my tinnitus has made it better for about two or three days and then it comes roaring back every time. That even includes sound therapy. I always think that I have found the answer. Gabapentin, Valerian Root, Kratom, alcohol, etc. I also think gabapentin delays the healing process. IMHO.

 

One other thing. This is probably going to get me into trouble but I don't mean any disrespect to anyone as everyone has always been very supportive. But I do get confused. Even more than I already am. One time I read that I need to keep tapering until I finish my taper and don't stop. Then I hear that we're supposed to listen to our bodies. I read a lot about tolerance withdrawal. Then I receive a reply that tolerance withdrawal is very rare. Both of my doctors, my primary care doctor and the doctor that prescribes my Klonopin wants me to stay at .5MGs a day. Their reason is because I have been at such a large dose for 20 years. It's like my brain doesn't know weather to shit or go blind. As I said, I appreciate all the support that I receive here, but I am soooo confused.

 

It's like a catch 22. The lower I go the louder the ringing gets. Then I hold hoping that it will get better but it doesn't. Then I taper again only to have it get worse. Then I hold again and nothing improves.

 

I think you need to trust whatever your gut is telling you to do. You do not need to taper to zero (or taper at all), if the benzos make your life better then do what you need to do. Staying on a low dose for the rest of your life if it helps you is not failure. Everyone needs to make their own choices. Life is too short to be in pain all the time. You will not get a medal if you are off the drugs but miserable.

 

It's true what some people have said that what you are experiencing is all withdrawal, but it may not be. I would say take a deep breath and some time to process all the information you have and proceed from there. Do you know the CMT-USA foundation is having a conference this spring? Maybe attending or looking at their information would somehow help you. Good luck.

[[so...]]

Hi ernieJ

just wanted to pop in and say I have CMT. I successfully tapered off of 3mg of K that I was on for 25 years. It can be done. The main problem with bzwd and CMT is the risk of falls and the peripheral neuropathy which are both common in bzwd. There are lots of FB groups for CMT< I would highly suggest that you check those out as well as the web page CMTAUSA.ORG

 

While tints can be related to the CMT, I really do feel that yours is probably benzo related. If I can be of any help to you in this let me know