Benzodiazepine Withdrawal — SEVERE Hyperacusis

[BenzoMom]

I am in the midst of a severe benzodiazepine withdrawal storm (hell on earth) with many symptoms, some nerve symptoms. I noticed my ears becoming sensitive to noises a couple of months ago, while I was on a much lower dose of clonazepam than previously (long story, bad story). Tinnitus came on about 6 weeks ago. I started resuming my taper of the medication (with a likely 1-2 years remaining) a month ago; however, this past week, my noise sensitivity has gone through the roof. Every day, it is getting worse. Yesterday, normal voices were hurting my ears and had me in tears. This morning, the flushing toilet is hurting. The past 3-4 days, my eardrums are burning and it feels like hot knives stabbing at my ears.

Previous to last week, the noise sensitivity would come and go but just this last week, it's becoming more and more unbearable. And I mean UNBEARABLE - I can even hear sounds a lot with wax earplugs in or noise cancelling headphones. I assume that it's mostly due to the medication withdrawal but I don't know if there's more to it and I don't know what to do. I guess I need to get into see my ENT sooner rather than later. For about a week or two prior to this, I had been putting a little bit of olive oil in my ears because my ears felt dry/itchy. But I quit doing this once I noticed even more sensitivity. I'm guessing that olive oil couldn't cause damage, unless it just stripped all of the wax from my ears and that's contributing. I've been assuming that it's likely the medication w/d for the most part but maybe something else could be contributing too? Earplugs hurt my ears even more and of course, with the tinnitus, it's all the worse to wear earplugs.

What are some of the other causes of hyperacusis? What else can I do to help this right now? I do listen to a white noise machine next to my bed at night and perhaps it's been a little too loud, though I do and always have worn earplugs at night. I just don't know.

I just quit my job. I have 7, yes 7, kids at home with me at all times. I'm going to lose it as every morning, I am now waking up with this getting WORSE every day. HELP!! What do I do here? What tests do I ask for to ensure this isn't just w/d from the medication. I'm sensitive to all medications now, and supplements, and am limited with what I can take because of the clonazepam interaction.

Sorry about my desperation but I am just that - feeling desperate. Had NO idea that even "normal", not loud sounds, could cause such pain - I've been crying buckets the past 3 days as this is getting intensely worse.


Update: I just posted this and got an appt with my ENTs office and the audiologist. What should I ask for/request? I know this is at least in part due to the WD. I'm afraid of undergoing any sort of loud sound testing......normal voices are intensely loud right now.......this has gone south rather quickly.....a week ago, I was giving my kids haircuts and vacuuming.

 

[Marc22]

Wow, I am really sorry to hear about what you are going through. Your desperation is acute and I really feel for you.

I have had moderate hyperacusis almost 24 years now. In that 24 years I have usually used clonazepam when I have severe hyperacusis (after a setback ) which, luckily, is rare. It actually REDUCES the hyperacusis for a few hours (not anaesthesises like alcohol). I have never had any withdrawal symptoms from clonazepam, even if I used it every day for, let us say, 2 months. Yet in your case, it really does seem to have the opposite effect making you so much worse. I have no idea why. But then maybe the clonazepam is not the cause of your worsening. But then, what is?

I know that even those who do not have hyperacusis can have pretty severe withdrawal from benzos. But again, me: nothing. I am also using it now for pretty severe anxiety every few nights, because I am having a hard time finding a new place to live. I never thought of checking with a possible ototoxic list of meds before starting clonazepam, which is a bad practice, but I did not know any better then.

Lastly, and most importantly: what can be done for you? My personal experience, and those of others with hyperacusis, is that, most of the time, it will naturally get better, if you do not reinjure yourself. But it may take a while. You MUST keep away from ANY loud sounds, like loud street noises, inside buses, planes overhead, lawnmowers etc... Ordinary sounds you cannot avoid, but, however unbearable they are (like a human voice, toilet flushing etc...), it is highly unlikely those sounds will make you even worse.

Others have recovered from cases as bad as you. Keep in mind the TRT treatment! I know it is hard, I just do not know what else to say. Good luck.

Marco

 

[BenzoMom]

Using clonazepam on occasion is not a problem but I would caution against regular use. I was never intended to be on it this long. It was from anxiety and depression and I reduced the dose and held at this lower dose too long. The medication itself doesn't cause it usually - it's the tolerance to the medication and the withdrawal that can do it. BE CAREFUL. I would not use it like you are using it. That's how I got sucked into it. Thank you for your kind words. The problem is that my house is VERY loud with 7 children. They slam the doors, we have a dog barking, all kinds of noisy toys (which I already got rid of).

I'm wondering now if when I went to Mass over a week ago, the organ playing could have done it. But now, even my sound machine, which I have used too loudly maybe is loud. Everything is loud. Do you feel that I should wear hearing protection until this "wave" or bout heals up? It could be a long go because my whole nervous system is destabilized. I fully expected some hyperacusis but it was "mild" compared to this hell that I'm feeling now. I'm also concerned now because I scheduled an audiology and ENT appointment for tomorrow and now I'm reading that some of the tests can worsen things. But I do want to make sure I don't have anything else going on in my ears - this just seems prudent.

 

[Marc22]

BenzoMom:

Thanks for your reply. I take your warnings about clonazepam seriously, even though 20 years on and off of it OCCASIONALLY has never hurt me. I take on the average 30 .5 mg pills every two weeks. Now more for anxiety-depression like you, due to great worry about homelessness and just a general hypersensitivity to all the sufferring and superficiality in the world, which also leads to a lot of loneliness and confusion. It is hard for me to be in a noisy city, to read newspapers, and sometimes to read about tales like yours, because I start to tremble and get panicky, which never happened before. Of course, that is not your fault. But I must limit my exposure to sad tales because it affects me too much. But I will keep up with you at least, if you so wish. One person is no great emotional burden. I get even more panicky on bad hyperacusis days of course, but I have more good days than not.

I understand that with all those kids and dogs, that is a burden. But you either have to put up with it or have some of your children live somewhere else for a while. It may be easy for me to say, because I have never experienced so many people around me, but I still think that the kids will not make you worse even though it is very bothersome. You could give yourself a break by wearing ear protection even at home. But, you may have heard, if one overprotects the ears, that can make you worse. I know that such a statement may exasperate you, but that over protection jazz is really true from my experience. You have to experiment with the ear muffs, on and off for different whiles.

Of course it is VERY possible that the organ playing did you in. I mean, even someone with mild hyperacusis should not go to any Church service (or some similar non-religious event), even without an organ. Just all the people talking together, the echo in the church, the priest speaking over a sound system... all these things are destructive. I realise Church may be important to you, but do not ever go again! Maybe visit your priest for some spiritual counselling in his quiet work area. As far as any questionable test by audiologists or ENTs, they all should know about hyperacusis and they probably would not consider administering anything noisy. But if they should press you for some noisy test, REFUSE. Do NOT let their so called expertise sway you. The only well known test that could be administered to any of us, is something, I think, called the Loudness Level test (?) before one does TRT. They will administer very low sounds to determine what a hyperacusis person can tolerate and what one cannot for only the purpose of possible improvenent of your condition by the TRT method, and only in that circumstance.

The general conclusion to all this is simple: KEEP AWAY FROM ALL LOUD SOUNDS (busy streets, lawnmowers, etc...). Give your ears a break from household sounds by wearing ear protection for various times. Your ears will PROBABLY then recover very slowly, PROBABLY to a tolerable level. It could take months. Look into the TRT treatment. Get references to any local practitioner from this site or The Hyperacusis Network site. Some worse than you have recovered to a tolerable level. I know that in the meantime it is tough. But there is nothing I or anyone else can do to magically fix this right away.

I will keep on checking with you over the next while, if you wish. Good luck.

Marco

 

[BenzoMom]

Thank you, Marco. I don't know about never going to Mass again but I will definitely be more careful in the future, if that even requires wearing earplugs plus earmuffs. I did and will continue to sit in the back where it does not impact me. I had no idea that it could get like this bad. I had assumed that because this related to benzodiazepine w/d that it's all there was......clearly not. Today, I have been taking the earplugs/ear muffs on and off. My children will be going away in about 10 days for 2-8 weeks and that will be depending on my ears.

I'm sorry for your suffering. And I'm sorry about scaring you regarding the clonazepam but please do take this as a warning and look into it. I also had been using it off and on for years prior to using it for several months.....then I weaned down from 1.5 mg per day to .5 mg per day and I held the smaller dose for 6 months because of some GI issues. That's when I started getting a lot of the tolerance withdrawal symptoms, including the hyperacusis (which has worsened), many other nervous system related issues, hair loss, tremors, jelly legs, muscle fisculations, the tinnitus, and many more symptoms. I just don't want to see anyone else go down this path....I am, they say, an extreme case however.

Regarding TRT, I am having hyperacusis WITH pain - burning pain. It was not previously with pain but since it's gotten more severe, it is now. I was just reading this article about TRT therapy not being very effective for hyperacusis WITH pain.

https://web.archive.org/web/2015090...rd-in-Understanding-Hyperacusis-with-Pain.htm

It sounds like, at least for a while, I really do need to take great care in protecting my ears. They are not going to heal completely until I'm off the clonazepam, and my GABA receptors reuptake, which is going to take a long time.....I have been tapering again for over a month and I'm having to slow down my taper, in large part, because of the increase in severity of the hyperacusis/tinnitus. Again, I assumed it's because of the medication withdrawal and it definitely is, in part. I would be satisfied if they would just get back to the previous level after experiencing this for several days.

 

[Marc22]

I hope you are feeling a bit better today. Today I started off with a slightly bad case, but as the day wore on I have been better, which is usually the case when I have a setback.

Marco

 

[BenzoMom]

Hi. Yes, I did. I'm in despair - it's horrendous today. Every noise has been extremely loud and it hits my nervous system like a ton of bricks or a knife. My ears are burning/sizzling. I just called audiologist specialist and I am not sure there's anything they can do for me but they told me not to wear ear plugs or ear protectants too much and to have low level white/pink/brown noise all throughout the house. If I lived alone, things might be easier. My heart is broken for my children. I can't stand any of their voices/noises.

 

[Contrast]

Hi. Yes, I did. I'm in despair - it's horrendous today. Every noise has been extremely loud and it hits my nervous system like a ton of bricks or a knife. My ears are burning/sizzling.

Ask your ENT about this possibility.
https://www.mayoclinic.org/diseases-conditions/peripheral-neuropathy/symptoms-causes/syc-20352061

 

[Contrast]

Do you have a history of over-exposure to loud noise? It's silly to believe benzos alone are responsible.

 

[Marc22]

Hi Benzomom:

Sorry to hear about how you are feeling. I did not expect any improvement only after the few days we have been in contact.

There were some things that I would like to mention to you in private, so I tried to send you a private message but do not know if it got to you because I am not familiar enough with this site and all its facets. Can you on the other hand private message me, so that I can in turn write to you in private?

As far as Contrast`s suggestion that you may have peripheral neuropathy, I doubt it. I did have this disorder for a few months a few years ago, probably due to my drinking. But it can happen for other reasons. I did all the tests and my neurologist said that OFFICIALLY, according to their tests, I did NOT have this disorder. The neurologiist did not dispute that I had certain symptoms, but they did not register on this battery of neuro tests, and one for the cerebellum. Certainly all my symptoms and their time sequence fit what I read in a book for the layman about the condition. Luckily it all went away. But unfortunately all this stress still leads me to clonazepam and alcohol regularly, but not in large quantities (about 2mg clonazepam every 2 days, and one daily 750 ml beer at 7% alcohol content). Even though one knows about the possible medical consequences, I regularly get to the point where I do not care. I want relief now and that is it! It would be nice to have people to talk to because my anxiety and depression would go way down. But try finding a friend in this sick world, someone who will really listen! Just last night a former female friend accused me of never doing anything for her: a person perpetually broke to whom I gave my affection and compassion, and thousands of dollars to tide her over. And what happens: "You did nothing for me", she barks and slams the phone down, without my being able to defend myself of course. The world is full of ungrateful sickos like this. I have had to put up with this, plus a 94 year old mom in a nursing home, hyperacusis, depression, financial hemorrhaging, now only a temporary place to stay, difficulty finding a new place with hyperacusis in a big noisy city. So we all have our crosses to bear! But yours seems to be way worse, thus you are in my thoughts regularly since we met here.

Take care.

Marco

 

[BenzoMom]

Contrast, I wouldn't say overexposure. I went to my son's yoyo contest several months ago and the music was loud there so it's possible that may have set some of it off. Then of course, just random small exposures, like an unexpected firework at the neighbors on the 4th or my daughter's scream. Not like regular concerts or anything like that which I have stayed away from. I did go to Mass where there was an organ playing and I felt like it was loud but I set in the lobby and when I went in, I did wear earplugs. I have mostly been housebound but my house itself is just loud, unfortunately. I have 7 children, 5 of which are boys, we have hardwood floors and high ceilings.

Hypersensitivity to sound is a benzo w/d symptom that is common. But this is a whole new level so I do believe that there could be something else at play here as well. What I was experiencing prior to these last 10 days is more of what one should expect. This is a whole new level.

I have nerve issues throughout my body and it's because of the benzo tolerance w/d and tapering. Skin burns at time, spine burns, nerves/muscles through my body fisculate and jerk, etc. I was having a really dry and sore throat previously as well but that went away. Incidentally, since this started, it is back and I don't know why except that maybe I'm crying and there's a lot more drainage.

Does anyone know if acid reflux could be part of the issue for some?

 

[Daniel Lion]

Contrast, I wouldn't say overexposure. I went to my son's yoyo contest several months ago and the music was loud there so it's possible that may have set some of it off. Then of course, just random small exposures, like an unexpected firework at the neighbors on the 4th or my daughter's scream. Not like regular concerts or anything like that which I have stayed away from. I did go to Mass where there was an organ playing and I felt like it was loud but I set in the lobby and when I went in, I did wear earplugs. I have mostly been housebound but my house itself is just loud, unfortunately. I have 7 children, 5 of which are boys, we have hardwood floors and high ceilings.

Hypersensitivity to sound is a benzo w/d symptom that is common. But this is a whole new level so I do believe that there could be something else at play here as well. What I was experiencing prior to these last 10 days is more of what one should expect. This is a whole new level.

I have nerve issues throughout my body and it's because of the benzo tolerance w/d and tapering. Skin burns at time, spine burns, nerves/muscles through my body fisculate and jerk, etc. I was having a really dry and sore throat previously as well but that went away. Incidentally, since this started, it is back and I don't know why except that maybe I'm crying and there's a lot more drainage.

Does anyone know if acid reflux could be part of the issue for some?

Hey there,

So sorry to hear you're suffering.

Withdrawal will take time.

Tell your kids about your condition, and plead with them to be sensitive to your needs for quiet. Where earplugs around your kids when necessary, I do often...

Hang in there and take care, let your family know so they can help you.

 

[linearb]

Do you have a history of over-exposure to loud noise? It's silly to believe benzos alone are responsible.

Not silly at all; spontaneous tinnitus among people who didn't already have it is a very common benzo withdrawal manifestation. The fact that it often resolves completely some period of time following the end of a taper off the drugs is pretty good evidence that at least in some cases benzos are wholly responsible.

@BenzoMom this sounds like a very difficult situation and I'm sorry; if you're tolerating a taper this poorly, I don't know about dragging it out another two years -- have you considered switching to diazepam? That's how I tapered off Clonzepam, and even though I take it again, it's how I would go about tapering off it again in the future...

 

[Lane]

Here's a few links that were at the end of THIS ARTICLE...

For those of you interested in more information or virtual help, visit these sites:

Don Killian has a personal fascinating story. He tells it, and offers encouraging help for those in [benzodiazapine] withdrawal through his videos. He has taken the time to record over 160 videos, all free to watch.

Benzo Buddies: An online community forum to help you get through (and celebrate) being free of benzodiazepines. This is the link to the page on "withdrawal support" however there are many threads.
http://www.benzobuddies.org/

Benzodiazepine Information Coalition: This website has information and supportive articles and videos to help you understand the dangers of benzodiazepines. They are a non-profit organization that raises awareness of the risks of benzodiazepines, particularly tolerance and severe and protracted withdrawal which really appears to be withdrawal triggered illness, sometimes it is termed PAWS. https://www.benzoinfo.com/

Dr. Heather Ashton: This is "the manual" that helps many people withdraw properly, written by a professor from the United Kingdom. https://www.benzo.org.uk/manual/​

 

[Mathieulh]

Contrast, I wouldn't say overexposure. I went to my son's yoyo contest several months ago and the music was loud there so it's possible that may have set some of it off. Then of course, just random small exposures, like an unexpected firework at the neighbors on the 4th or my daughter's scream. Not like regular concerts or anything like that which I have stayed away from. I did go to Mass where there was an organ playing and I felt like it was loud but I set in the lobby and when I went in, I did wear earplugs. I have mostly been housebound but my house itself is just loud, unfortunately. I have 7 children, 5 of which are boys, we have hardwood floors and high ceilings.

Hypersensitivity to sound is a benzo w/d symptom that is common. But this is a whole new level so I do believe that there could be something else at play here as well. What I was experiencing prior to these last 10 days is more of what one should expect. This is a whole new level.

I have nerve issues throughout my body and it's because of the benzo tolerance w/d and tapering. Skin burns at time, spine burns, nerves/muscles through my body fisculate and jerk, etc. I was having a really dry and sore throat previously as well but that went away. Incidentally, since this started, it is back and I don't know why except that maybe I'm crying and there's a lot more drainage.

Does anyone know if acid reflux could be part of the issue for some?

Benzodiazepines withdrawal can (and often do) induce tinnitus and hyperacusis, the good news is that it usually resolves on its own in most (over 90%) cases, the bad news is Benzodiazepine withdrawal symptoms are long lasting and typically last months AFTER stopping the intake, that is not mentioning the years it can take to taper off the medication, on average it takes 2 years to taper off from chronic use. Benzodiazepines are VERY dangerous and should only be considered last resort drugs.

So in your despair you should count yourself lucky that your situation is temporary, albeit long lasting, but at least you aren't in a case of a noise or infection induced hyperacusis/tinnitus with which you can potentially be stuck for life.

Also, no matter what happens, do not cold turkey on Benzodiazepines as that can literally kill you.

I wish I had better news for you, but only time can heal GABA dysregulation (which is what's causing your symptoms).

 

[linearb]

@BenzoMom for what it's worth -- I was on benzos for a half decade. Withdrew. I do remember having worse tinnitus during and after the taper (I've had very minor tinnitus since I was 19). After a year or so it was back to normal and I never thought about it.

In 2010 I damaged my hearing with noise, and the tinnitus got a lot worse. I went back on benzos for a year, then off. The second taper was harder, but, all of the really weird unpleasant stuff had gone away by about ~18 months post taper, and I was just left with the tinnitus (which, in my case, is noise induced).

So, I am back on benzos now for a variety of reasons, but that's sort of beside the point -- bottom line is, you're feeling absolutely insane because your nervous system is going through something insane, but if you can get off and stay off benzos and alcohol for some period of time, a lot of this stuff will get better. Actually doing that is going to be very hard, and the long-term prognosis for any particular symptom like tinnitus is a crapshoot; some people are stuck with tinnitus long-term after benzos... but even in those cases, people generally see radical improvement over the first 2-3 years off.

Getting through those months/years... tricky. Meditation, yoga, loving kindness, acupuncture, massage therapy, hot baths, saunas, use every trick in the book you can afford.

 

[Marc22]

HI BENZOMOM, and all others!

Wow, all these horror stories about benzos. If I would have known I might not have started on them about 20 years ago. But the fact is that I never have had any problems with withdrawal. You see, up until last October, I only used them when I was in a bad hyperacusis setback, and they actually relieved my hyperacusis for a few hours (2mg dose). And I would sometimes do this pretty well every day for months on end in a setback. Then, as my hyperacusis would get better, I would taper off, but not because I was worried about withdrawal (did not even know about this potential problem), but because my hyperacusis was getting better. Sometimes I would stop cold turkey after a shorter setback and nothing happened. At the time, the doctor was giving me up to 60 pills of .5 mg a month, sometimes more, but they cut it down now to 28, which is what I now consume because of anxiety usually, not the ears, because they have been pretty good.

I am not encouraging anyone to follow my example. How weird that for persons like me, clonazepam would help temporarily with hyperacusis, putting me from severe hyperacusis to tolerable hyperacusis for a few hours. Yet many of you are reporting that withdrawal (not the use also sometimes?) may cause hyperacusis and tinnitus, or worsen these conditions. That scares me. But I am going to continue because I never have had any withdrawal problems.

I would like to add that I just have moved to a new place (6 MOVES IN THE LAST YEAR at 64 years of age!). It just so happens that they are going to repave the road on which I live this week. Of course, just as I move in, and, of course, the only road being paved in the district, just where probably the only person with hyperacusis, lives! So I am worried. Might have to get up early and leave the apartment all day for a few days. I am sure many others have such bad luck, it is part of living with this. And , oh of course, there are loads of planes flying over this place. And... I did live with this roommate before; and living with this person and his emotional instability and the planes, and worry over some other construction, flipped me out, and sent me to the psych ward last October. Yet I am back because the price is right, and the guy likes my company, and I could not find another suitable place to live due depression, a tight market, and living in a noisy city with few quiet neighborhoods with affordable housing. This roommate is also considerate and decent, but something just weirds me out about this place, even though it is in a relatively quiet area. I just never feel comfortable. I lived elsewhere for a year after the psych ward, and I was comfortable at these places, but I can no longer afford them.

It is strange how so many people are not bothered psychically by noise in a Big City. If I were normal, all the noise would still constantly annoy me. Yet a former friend, for example, lives near a busy intersection and always has her windows open during the summer, and with fans everywhere, and she is completely oblivious to the traffic noise.

Bye for now.

Marco

 

[Marc22]

BenzoMom: How are you feeling today?

BTW, to anyone who knows about benzos: I understand that even if you taper off, you may get withdrawal symptoms. If you do get these symptoms, how many days after you stop do they kick in generally?

Marco

 

[BenzoMom]

Thank you all for your support. I am feeling like I'm in hell. This is one of the worst symptoms I could have imagined. I am not planning to drag the taper out for another 2 years, I'm hoping not but I don't know how fast to go because this is just agony. If I had continued my tapering instead of holding, I would not be dealing with this, I am certain of it. I am now being jerked out of a dead sleep about 100 times per night and all of my nerves are oversensitive. This is not normal - even for people in benzo w/d.

Linearb - did you also get H or worse H when you were going through benzo w/d? Again I believe I am an extreme case here as I am getting hit with SO many symptoms. I even have a hard time with ribbed tank tops irritating my skin so it's not just the ears but this is over the top. As far as switching to Diazepam, it's been something we considered but I tried just adding it in, 2.5 mg one day, and got more symptoms. If I had done that at the beginning, likely I would have been fine but I think going through K withdrawals now, while trying to switch over, might really be too painful for me as I'm in such tolerance to the K. I just need to get off........this is SO dire, so extreme. Never imagined this - it's from the freaking twighlight zone.

Marco, you may be fine. Maybe you don't metabolize the medication as rapidly as I do. I tend to metabolize everything fast and have a super sensitive nervous system anyhow and get tons of side effects to everything. Even still, benzos can be very dangerous so just be careful.

 

[Marc22]

BenzoMom: what do you mean by "holding" and then "K withdrawals"

Marco?

 

[BenzoMom]

Meaning I had been on 1-2 mg for several months, weaned down to .5 mg in a 4 month period and then held at .5 mg for about 6 months. This threw me into severe tolerance. Now, I'm in acute tolerance withdrawal while still on the medication, trying to figure out how to slowly, "tolerably" wean the rest without losing my freaking mind.

 

[Marc22]

Thanks for your response, Benzomom.

Strange how we react so differently to these drugs.

Because I am more concerned now about benzos, I did ask my local pharmacy for their info pamphlet about clonazepam, to read once more. They are not as alarmist and concerned about withdrawal as everyone else here. But on the other hand, in an interview with a musician named Courtney Love which I just read, she said getting off Xanax was more difficult for her than getting off heroin.

I have had 2mg once in the last 4 days. Nothing has happened. And the dose was helpful in getting some relief from a bad ear day sunday. There is just a hell of a lot of noise around me these days, even in a library which I frequent every day. They have this machine they use for replacing lights on the ceiling, and when thy activate this machime, it goes BEEP BEEP, and shrieks also. And this will go on for 3 weeks. Now I have to sit in quieter areas of the library away from the computers (from which these posts come) until 3PM every day. I really need to use these computers, so it is an inconvenience. There are worse problems, like yours, for sure. So I am trying to just accept the inevitable, and count my blessings.

Marco

 

[Marc22]

Benzomom:

How are you feeling today, september 1st? Did you see the thread started by Adam007 who made a full recovery? While that is improbable for most people, it is definitely a fact that our damaged nerves (and-or whatever else is damaged) have a certain capacity for recovery, especially with some help like TRT.

Personally, having moved to a new place and unfortunately being exposed to much more noise than usual, I have survived the past week, after much noise bombardment, relatively intact. By that I mean I am still within a tolerable zone of hyperacusis. So the ol' ears are bearing up!But we must always be vigilant. Always.

Good luck. Will be thinking of you.

Marco

 

[BenzoMom]

Thank you Marc. I'm very ill, very ill. My kids went to their aunt and I'm heartbroken over it but my nerves need the rest. The H is still there but up and down. I went to Mass this morning at a church with no music and took hearing protection. It had a fairly bad echo and I could definitely tell about the H. Last night it was also bad but not as bad as it has been. My T is up and down. My oldest, who is at home, is yoyo-ing and the noise is making me want to vomit. I cry for hours each day and I'm not a crier - it's involuntary. I'm getting jerked out of my sleep frequently but sleeping for now, and because I take another med but I'm grateful. I'm down about 17% from 6 weeks ago on the med. You are blessed to be able to stop but truly, once you are off, try not to take more than 1X per week because you don't know that the next time you come off, you will be so lucky. There are people who this has happened to. It's called "kindling". Those with sensitive nervous systems, like me, are the unfortunate ones, I believe, and because I got into tolerance after holding a low dose for so long. It really is a hell like I didn't know could exist.....no joke, no joke. Not everyone reacts the same way and not every time is the same. I am praying for God's mercy, truly, that I can get off and heal from all this but it's going to take some months and is brutal, worse than I could have ever imagined and it can get worse. I'm in acute while still tapering - that's not the normal for most folks. I'm praying it does not get any worse as I slowly descent with a microtaper but that's not been the trend so far.

I hope that your ears can continue to weather the place where you are at. I pray that mine will improve enough over the next 2-8 weeks, so that I can bring my kids home and live with them here while I get off this and heal.

 

[Marc22]

Benzomom: I did not think you probably had improved in just a short time, but I had to ask. I have had hyperacusis for almost 24 years, so I have had setbacks of extreme hyperacusis of varying times, but luckily they have never lasted very long. I know what that hell is like. And I fervently hope you improve.

Yeah, I forgot about echoes in churches. Since I never go them, I did not realise that could be a problem for religious hyperacusis people. Although not a spiritual person, just got a biography of St Francis of Assissi today. I love real saints even though I am an atheist.

Today I am OK, and should be able to bear the new noise environment I am in. It is the planes overhead that I worry about the most. Some days there is one after another every 3 minutes for hours, coming out of the Montreal airport. Then they change the routes and there are no planes for 2-4 days. Work on repaving the street I live on in is now finished! So one less worry. In a while the leafblowers will start, and I will be seen scurrying with my earmuffs on into the toilet, the only refuge. I have spent much time in toilets and closets over 24 years, I can tell you. I have lived most of the time in a suburban area, but during the summer, there is always someone mowing their lawns, or having noisy work performed on their houses, with screeching chainsaws and rotary ones etc... But I should be able to get through it all. My next biggest worry is that I cannot stay where I live now, and have not had any luck in finding a new permanent place in the last 2 years, moving from one temporary place to another, with little help or care from anybody. Such is the way of this sick world. I hope you have some decent loving support around you, that should help.

Good luck.

Marco

 

[Lane]

I am praying for God's mercy, truly, that I can get off and heal from all this but it's going to take some months and is brutal, worse than I could have ever imagined and it can get worse. I'm in acute while still tapering - that's not the normal for most folks. I'm praying it does not get any worse as I slowly descent with a microtaper but that's not been the trend so far.

Hi @BenzoMom

Your story is truly heartbreaking to read, and my heart goes out to you as you struggle mightily through your ordeal. I was on 1-2 mg of clonazepam from about 1999 to about 2006. In 2005, I began about a 15-month taper, and then went through another uncomfortable 1 year+ post taper period. Using an Alpha-Stim microcurrent device about one year post taper finally helped get me over the top, allowing me to finish up that process. Here's a link to a POST I did on another forum back in 2011 about my Alpha-Stim experience.

I rarely thought about my benzodiazapine withdrawal symptoms after 2006, until...... I went to the ER about 18 months ago, and was given a single dose of Promethazine, also known as Phenergen. It sent my system into total chaos, initiating a severe case of tinnitus, and giving me symptoms that resembled extreme benzodiazapine withdrawal. I'm currently trying to figure out the best ways to address that. Things have been difficult, but seem to very slowly improving.

I've found daily mHBOT to be very helpful, which I've written about fairly extensively on this forum. Despite how mHBOT has been able to significantly stabilize my brain and nervous system, I still occasionally take about .25 mg of valium when things get out of hand. Fortunately, I only have to do that about 1-2x a month, and generally think in terms of any given dose being my last one. Never thought I'd be reliving those withdrawal symptoms from years ago, not to mention that they were so much worse for several months right after the Phenergen. Makes me think that people who make it through benzo withdrawal should probably stay away from anticholinergic drugs like Phenergen.

I recently began frequenting the BenzoBuddies forum, and am learning much more about benzodiazapine withdrawal than I did all those years ago. I ran into a post a few days ago that you may find interesting. I think this woman is spot on when she talks about some things that she felt were holding back her healing, and once she addressed them, her healing was much more rapid. Here's a link to her full POST . Below is the part where she talks about being able to speed up her healing process. -- I sincerely hope things can significantly shift for the better for you soon! -- @Star64
........................................

I also believe that we must look at other causes. I believe the drugs were just the last nail in the coffin for me. I had toxic breast implants, metal filling etc. Once I had the implants removed and the metal out of my mouth I began to heal rapidly. However, I do not want anyone to read this and assume all of my issues were from them.

I had the implants and fillings for more than 15 years and my symptoms did NOT occur until the doctors poisoned me. However, I believe the over load on my system having had these things plus the drugs caused a cascade of events. I wish you all the best. If I can recover.. anyone can recover... I remained off ALL drugs and let my brain and nervous system repair itself. The body and brain have an anate ability to heal theirselves. I'm proof,​

« Last Edit: August 21, 2019, 06:05:19 am by Brighterdays »​

 

[Lane]

Regarding my above post: -- For perspective, I found the mHBOT be as much as 2-3x more helpful than the Alpha-Stim. And the Alpha-Stim was very helpful.

 

[BenzoMom]

@Lane Thank you for reaching out to me. I'm sorry for your setback but it's good to hear that you are improving. Scary thatYes, I am in what feels like hell.....every single day. If I had started out a taper in a better place and done it right and not held, then I would not be in this crisis as much. Maybe feeling like crap, maybe even feeling a bit like I feel now,maybe even in acute, but not near as bad, I am sure of it 100%. The problem came after my long hold and I got thrown into acute after coming off a PPI. It took me a while to figure it out, b/c I thought I was having W/D from the PPI but really, it was the benzo because the PPI was keeping the benzo from being eliminated as quickly. In any case, it took me another 3 months to figure that out and figure out HOW to continue my descent and it's just continued to go downhill so rapidly. I'm absolutely heartbroken over what I have lost, what this has done to my family, my children. I have only decreased the medication by about 17% now and it's getting worse. The hyperacusis is so severe. Even with my younger children gone, it's severe. I'm able to handle it a lot better, it doesn't impact my CNS quite as much but it's still there and painful. My oldest is in the other room yo-yo ing and I want to go in there and rip the yoyo out of his hand right now. The dog licks himself and I want to shove him out the door. I'm getting jerked out of my sleep.

It sounds like you mostly had tinnitus and not so much hyperacusis? Or did you have both? I would say my hyperacusis is definitely my more prominent and bothersome symptom right now but I do tend to get tinnitus also now and it comes and goes. I liken these conditions to nails screeching on a chalkboard - that's what noise, sometimes any noise, does to my nervous system right now. I have probably another 6-10 months of tapering at this rate. I want to go faster because I'm already in acute but I know that's not a good idea. I'm just so miserable right now.

It sounds like you did your taper the correct way, unlike me, though I had not been on the medication as long term as you and so when I tapered it before, I believe that I was on the right track, maybe faster than most but if I had continued, I do believe it would have been best for me...unfortunately the long hold and now, I just pray I can make it through this hell because that's exactly what it feels like. Can you tell me how things were during your taper versus post taper? For all of your symptoms? Did you do a microtaper or cut and hold. I don't think that my tapering method is very good because I'm having to go so slow and I was not able to tolerate the liquid microtapering. So I got the .125 mg ODT tablets that dissolve - I believe they also could be rapidly metabolizing in my system and I believe the medication is likely not evenly distributed. I don't know how bad things were for you. You say uncomfortable, so I'm guessing yours wasn't too terrible. I am just so scared as this just continues to get worse and worse for me as I get sucked further and further into tolerance. Part of me wants to slow down but I don't know that this is going to help me because I'm in such tolerance. Yet, I know that once you are off the drug, it can be more hell as well.

Unfortunately, I'm also on an anti-depressant. Whether it helps or hurts, I have no idea but I can't get rid of it now. I also take Seroquel (only a small dose), which helps me to sleep but even with that, I'm still starting to struggle more. I've been on these meds for years, again unfortunately.

Sorry if I've repeated. I'm tired and quite agitated today and feeling sometimes like I'm not sure if I can do this one more minute. It's easier with my kids gone but I miss them terribly and am afraid. I just want to be a mother and wife again.

Thanks so much. I had to get off benzobuddies because I was like one of the worst ones on there with my dire situation, it seemed, and it was triggering me and consuming me more and more.

Regarding mHBOT, you do this at home and how expensive? What symptoms did it give you relief from? Were you as sensitive to medications, supplements, etc as I am now? I am sensitive to epsom salt baths now, I believe. It's truly crazy! I can have no sugar or anything or I pay big time.

 

[BenzoMom]

@Lane Oh, and as far as the alpha-stim, did you not already kind of feel like you had electricity coursing through your veins during withdrawal? That's sometimes one of my symptoms. It's VERY bizarre. Most people do not get this symptom.

 

[Daniel Lion]

@Lane Oh, and as far as the alpha-stim, did you not already kind of feel like you had electricity coursing through your veins during withdrawal? That's sometimes one of my symptoms. It's VERY bizarre. Most people do not get this symptom.

Geez, you're really suffering bad... my heart really goes out to you. I have read up on Benzos and withdrawal on the benzo forums... it can take years to get back to your new good self. Go slow, lots of healthy food, walks, hot baths and support if you can get it. It's gonna be a long road, but the hyperacusis and raging tinnitus should calm down after your off the drugs. Should, means often for many people. You're on Seroquel which is powerful and two other drugs I believe. Your nervous system is freaking out... nothing to do but hang on for dear life and get some cuddles from your kids. I would avoid church for now and pray at home if I were you. Perhaps your church could have somebody visit you to comfort you and join you in prayer at home.
People who have come off Benzos say it's the worst thing ever, worse than heroine, but many are happy to have completed the journey.

Reach out to your church, family, and accept if you can that it will be a long shitty journey.

You can do it. The slow taper according to the Ashton method can take a couple years in some cases... slow and steady wins the race.

Big hugs to you BenzoMom, you can do it.