Much worse at nearly 10 months, anyone know why?

[[WU...]]

I CT'd valium 5mg in Spring this year. Had been taking it on and off for many years and more in the previous 3 - 5 years with on going neck spasms and very bad pain making life difficult.  I am 64, and was first given a prescription when I was about 40.  GP just kept writing more prescriptions with no real solutions.  A few years ago I complained of severe ear pain and worsening tinnitus, both checked by ENT but found nothing.  I also took shed loads of ibuprofen which I now know to be ototoxic plus generally bad all round. Started feeling really strange in 2022 ( I had experienced some devastating losses of friends and my pets since 2019) so the GP suggested I take every day not just "as required". That's when things got really bad indeed and I suddenly made the connection and just stopped cold turkey. It has been hell since day 11 but since month 8 things have become worse. I can't believe I could feel like this and still be alive! I am agoraphobic because the symptoms are so bad.

Symptoms:

Head squeezing incredibly hard and in various places on the right side. Jaw, behind the nose, sinuses, cheeks, roof of the mouth, top of the head, back of the head and right inside the head, with searing pain. Impossible to do anything much at all, though I force myself to clean the house and then collapse afterwards.

Internal tremor which feels like my whole nervous system is vibrating from top to bottom with a sensation of being pushed and shoved

Nauseous feeling and no appetite

Palpitations

Burning mouth and strange taste

Horrible tinnitus, a low droning sound ( the worst) and also various higher pitches, all of it constant and very loud in both ears

Blocked right ear with pain but whole head feels blocked and crushed like being in a slowly rotating cement mixer

Woosy feeling, the boaty sensation that others have, getting worse not better

Hands trembling and sometimes whole body shaking

And that agoraphobia which I realise started while I was still taking valium

The question is why would I be feeling so much worse after all this time?  The time of year, Christmas etc has never been good for me which could be contributing.  Can anyone offer any other explanation ? Is this a normal trajectory?

 

 

[[Pa...]]

This is the unfortunate aspect of benzodiazepine recovery, our non-linear healing creates stress and fear which makes our symptoms even worse, it’s a frustrating and painful.  What you’re feeling is perfectly normal and while we often can’t know why we’re feeling this way, sometimes we can find the culprit by asking some questions. 

Are you dealing with any new stress in your life, other than this nightmare, any new medications or supplements, no alcohol, right? 

[[WU...]]

Thanks for reply @[Pa...].  Well it didn't help that a month after I quit cold turkey a wonderful couple I had a strong bond with for many years and who I communicated with practically every other day both died within a week of each other.  And prior to quitting my beautiful cat had to be put to sleep. This has bound to have had an adverse effect on top of the absence of valium. I suppose I can work most of this out for myself but it is useful to have another person's input. One does wonder if without these terrible events we all might be getting better a lot quicker.

No alcohol and nothing else has changed and I don't take any meds or supplements.

[[Ed...]]

3 hours ago, [[W...] said:

• Head squeezing incredibly hard and in various places on the right side. Jaw, behind the nose, sinuses, cheeks, roof of the mouth, top of the head, back of the head and right inside the head, with searing pain. Impossible to do anything much at all, though I force myself to clean the house and then collapse afterwards.
• Internal tremor which feels like my whole nervous system is vibrating from top to bottom with a sensation of being pushed and shoved
• Nauseous feeling and no appetite
• Palpitations
• Burning mouth and strange taste
• Horrible tinnitus, a low droning sound ( the worst) and also various higher pitches, all of it constant and very loud in both ears
• Blocked right ear with pain but whole head feels blocked and crushed like being in a slowly rotating cement mixer
• Woosy feeling, the boaty sensation that others have, getting worse not better
• Hands trembling and sometimes whole body shaking
• And that agoraphobia which I realise started while I was still taking valium

@[WU...] It's like you've written my own list of symptoms out for me! I have suffered EVERY ONE of these symptoms many times during my taper down from 8mg xanax in 2019 right up to the present. @[Pa...]'s post sums it up so very well; this healing is non-linear, and relapses can discourage and scare us - and she very wisely asked about new stresses in your life.

And indeed, you have suffered major losses and grieving (which can hurt so very long) at this vulnerable stage in your recovery. (This kind of loss is what unfortunately caused too many to start using benzos!) I'm sure most everyone here would agree that all this heartbreak can seriously hinder one's progress in healing from benzos - but we are here to support each other, give each other strength to forge ahead with our healing, no matter what ill fate life puts us through.

Edrek

Edited December 23, 2023 by [Ed...]

[[De...]]

Its hard to suggest stuff, as we are diffrent and results are pretty impredictable, idk about ototoxicity of the following, but neuroinflammation and the nkcc2 cotransporter hás a role in the ears, so, maybe stuff for neuroinflammation could help, for example pioglitazone,  r-alfa lipoic acid, acetyl l carnitine, nimodipine (or pioglitazone or nimodipine) or edaravone, i mix pioglitazone and edaravone without issues, also the others..  i didnt tried nimodipine yet, nor i think that It mix with edaravone, both are for SAH and cérebral vasospasm, ALL these are antioxidants and antiinflamatories, please do search about interactions, use caution, pioglitazone is fine imo, specially in low doses.. nimodipine is cérebral vasodilator, and potent antiinflamatory, an anti hypertensive calcium antagonist If im nog mistaken, doesnt seem to have withdrawals (almost sure) none of the others also, First hand experiênce

 

This is a crime that keep on giving, bet that in this very day several are still being prescribed this sort of drug as If It was nothing

Edited December 23, 2023 by [De...]

[[WU...]]

13 minutes ago, [[D...] said:

pioglitazone,  r-alfa lipoic acid, acetyl l carnitine, nimodipine (or pioglitazone or nimodipine) or edaravone, i mix pioglitazone and edaravone

@[De...] this looks like some kind of Klingon language! Joking.  Thanks for suggestion but I have a feeling my subconscious mind, never mind my conscious mind will physically stop me from ever taking any form of so called medication ever again!

I agree it is a crime that GP's keep prescribing this poison but all the information is out there and I didn't stop to check either in all those years, so silly me too.

[[WU...]]

Thanks @[Ed...] same symptoms eh.  Poor you too.

yes isn't life marvellous the way it all gangs up on us at once. Shaking my fists at the sky and telling those pesky demons they can all F Off ! 

[[Te...]]

I have all those symptoms you have mentioned. I'm about 10 months out also ct. Its a nightmare. 

[[De...]]

I understand that, but taking off possible issues, often these mentioned are pretty safe, doesnt usually cause issues, might have side effects, they are drugs and not advised to mix, but... pain is pain, and they protect nerves, blood vessels and brain cells, these might help, and i would consider, i had several spots of pressure in the brain, but not that Head pressure as some are affected, i had pressure spots in the brain, and had these sort of stuff since when i was First assaulted with several of this kind of substances against my will, olanzapine and haloperidol the former one, 15 years ago, which instantly severly debilitated and almost killed me, was 100% healthy and never had a single symptom of anxiety and depression that i could call that way, maybe some insecurity with silly stuff as i was 17 y old,

 

If you try, at first check your electrolites, blood pressure and glicemic levels, dont mix stuff like i do..  pioglitazone in low doses is safe, nimodipine is deemed safe specially in low doses, edaravone aswell, but they are drugs.. If you search each one and autoimune encephalitis, multiple sclerosis and neuroinflammation you will find information on-line 

 

One thing that might also help is theobromine, present in cocoa, 80% cocoa for example, but you find It pure as on swiss herbs.eu, its an stimulant of sorts, personally i dont have issues with It, idk about the effects on the ears, but is a a vasodilator and anti-inflamatory, that said, always be carefull and low dose always.. 

Edited December 23, 2023 by [De...]

[[WU...]]

@[De...] now cocoa interests me as it is something I recognise at least! I am a fan of 85% chocolate, just two squares a day, nothing excessive.

I know we are all different and with different approaches to our recovery. I don't want to use drugs to fight the effects of another drug and would rather just let the body and mind recover on its own but thanks for your suggestions

[[WU...]]

sorry @[Te...] you are also in the same place in the same time period.  What can we do eh?  Just bloody awful. I try to pretend I feel normal just to see if I can do things but it doesn't work and I am soon back on the sofa.

[[Te...]]

37 minutes ago, [[W...] said:

sorry @[Te...] you are also in the same place in the same time period.  What can we do eh?  Just bloody awful. I try to pretend I feel normal just to see if I can do things but it doesn't work and I am soon back on the sofa.

i hear ya. I got home from work and now i am watching football. I have full body vibration,  tightness, head pressure, muscle spasms, etc. It always feels like like like my brain is moving around in my skull.

[[Ed...]]

@[WU...] - Yeah, I try pretending to be normal at least once a day, and sometimes make it to a whole hour...and then I'm back on the sofa or in bed watching YouTube on my phone for hours.

@[Te...] - Wow, I know that full body vibration all too well. I look at where I feel strong vibration and fully expect to see a trembling movement in my tissues, but it's just a horrible sensation. The head pressure is a bad one too, like my brain is swelling up inside my skull and trying to push my eyes out or push out through my ears. Helluva lot of fun! Not.

[[An...]]

5 hours ago, [[T...] said:

I have all those symptoms you have mentioned. I'm about 10 months out also ct. Its a nightmare. 

I agree. The not knowing if or when it will end or get better is the most discouraging part of the whole thing. If you knew it was going to take exactly 3 years, for example, you could endure things a lot better knowing there was a finite end to this nightmare.

[[An...]]

56 minutes ago, [[E...] said:

@[WU...] - Yeah, I try pretending to be normal at least once a day, and sometimes make it to a whole hour...and then I'm back on the sofa or in bed watching YouTube on my phone for hours.

@[Te...] - Wow, I know that full body vibration all too well. I look at where I feel strong vibration and fully expect to see a trembling movement in my tissues, but it's just a horrible sensation. The head pressure is a bad one too, like my brain is swelling up inside my skull and trying to push my eyes out or push out through my ears. Helluva lot of fun! Not.

I hear you Edrek. I hate that feeling of pressure inside. It feels as tho you might explode at times. Most of mine seems to be concentrated in my torso (chest and stomach). I have some of the head pressure and fullness but it is not nearly as bad as what I feel in my chest and stomach, Ugh--

[[Ed...]]

Thanks for the commiseration, AB. 🙏🏻 It was a lot more distressing when there was no one to share with. But it would sure be the best if we all were over this. Yes, having some time limit on these afflictions would make it more bearable.

I actually woke up just now with uncomfortable fullness in my stomach, too! Before I read your post! And now my hands are itching... The fun's just beginning.

[[WU...]]

@[Te...] I award you the top prize for going to work through all of this, Maximum points. 

[[Te...]]

I've been working ever since ct. Let me tell you...its been something else.

[[Te...]]

It's ether that or staving and homeless. 

[[sh...]]

18 hours ago, [[E...] said:

Thanks for the commiseration, AB. 🙏🏻 It was a lot more distressing when there was no one to share with. But it would sure be the best if we all were over this. Yes, having some time limit on these afflictions would make it more bearable.

I actually woke up just now with uncomfortable fullness in my stomach, too! Before I read your post! And now my hands are itching... The fun's just beginning.

My hands are also itching like never before!?? must be the healing process… 🍀

[[Wi...]]

On 24/12/2023 at 03:21, [[A...] said:

I hear you Edrek. I hate that feeling of pressure inside. It feels as tho you might explode at times. Most of mine seems to be concentrated in my torso (chest and stomach). I have some of the head pressure and fullness but it is not nearly as bad as what I feel in my chest and stomach, Ugh--

I also have vibrations and pressure but my pressure is either at the back of my head and neck or in my biceps for some reason. When the pressure is high vibrations come on. Haaaaate this!