Invisible Mystery Illness / Unsure if this is really benzo withdrawal ?

[[st...]]

I have been suffering since last July. I have been seeing a psychiatrist who studied in the UK and actually apparently knew Heather Ashton. I’m a 25 Y old male who was polydrugged last summer with meds and was on benzos for about 3 months last year . Started from an alcohol problem . Been off benzos since September 2023. haven’t had a drink since January , and before that October . 
 

my psychiatrist told me the people he’s seen get injured are only older . And since I have had all kinds of tests done ( , MRI , CT scans , Blood work , Emg) he is now suggesting I might have a form on encephalitis , possibly autoimmune or viral . And wants me to now look into a lumbar puncture. 
 

my benzo coach , told me it still could be the benzos, but still wants me to explore all options . 
 

if my sxs were as half bad as they are now I could put money on that it’s the benzos and I’d have some peace of mind , but things are still so painful . And confusing ; things feel inhuman , ranging from burning pain in skull , cold ice nerve sensations / scalding hot water never sensations, feeling deathly ill, nervous system being pulled apart, feelings like I was poisoned by bleach, strange tastes in mouth , usually bitter . Fatigue , internal vibrations - muscle spasms . Feelings of unreality . I mean it’s just endless . It’s so terrible . 
 

Can anybody offer me any bit of knowledge to cope with this madness. I hope I am coming across sensible here I just want answers thank you 

Edited March 21 by [st...]

[[Bo...]]

Good to rule out everything but ya 6mo off still can be very early in this even if only having been on for 3mo. Did you CT the benzo or taper? If CT even people on for only a few weeks can have issues for months or longer to regulate and get back to homeostasis. It’s good you have youth on your side but many in their 20’s have been harmed by these meds. I have all what you mention and I’m 6 1/2 mo off but my story is very complex. You are good to have only been on for 3mo and I’m sure you know to stay away from booze and any more meds going forward.
it’s a real crapshoot but if everything does come back clean it’s def the benzo and time will heal things. (And again find us in your side being young)
Focus on organic foods, clean, eating moving your body however you’re able to even if it’s just light stretching and know that things will start imp proving sooner rather than later. 

See how things look at 9mo… 3mo intervals are what people use as markers sometimes and well some can be feeling like acute stage lots of time off after feeling better for months, up and down. It’s all very non linear which is maddening and frustrating. 
Keep us posted on the lumbar thing

Edited March 20 by [Bo...]

[[st...]]

Thanks for the reply 

22 minutes ago, [[B...] said:

Good to rule out everything but ya 6mo off still can be very early in this even if only having been on for 3mo. Did you CT the benzo or taper? If CT even people on for only a few weeks can have issues for months or longer to regulate and get back to homeostasis. It’s good you have youth on your side but many in their 20’s have been harmed by these meds. I have all what you mention and I’m 6 1/2 mo off but my story is very complex. You are good to have only been on for 3mo and I’m sure you know to stay away from booze and any more meds going forward.
it’s a real crapshoot but if everything does come back clean it’s def the benzo and time will heal things. (And again find us in your side being young)
Focus on organic foods, clean, eating moving your body however you’re able to even if it’s just light stretching and know that things will start imp proving sooner rather than later. 

See how things look at 9mo… 3mo intervals are what people use as markers sometimes and well some can be feeling like acute stage lots of time off after feeling better for months, up and down. It’s all very non linear which is maddening and frustrating. 
Keep us posted on the lumbar thing

Thanks for the reply boges, as I’m typing now things are flaring up and feels like I have the flu and I’m sweating and my skull feels irritated. Strange tastes in my mouth it’s so uncomfortable and weird. Feels like I’m about to go into a seizure. 
 

anyways… hopefully I survive through this acute wave . Definitely going to be calling my GP tomorrow and getting that spinal thing done as soon as possible . It’s the only thing I haven’t done. 
 

My story is complex aswell , I was in and out of treatment centers for alcohol abuse and every other week I was given tapers ranging from Valium , Ativan , and klonopin . I kept relapsing and retrying benzo tapers until September when I was sick of feeling like shit . Finally got the strength to completely stop, but yes it’s been unforgiving to say the least . 
 

sorry you’re going through it too and I will make an update about the procedure 

[[ns...]]

starmansuperBB

hey, sounds like your having a tough time, I'm so sorry. 

I think it's good to get tests done, reassurance is always good.

It really sounds like withdrawal symptoms at least to me, but if you feel you need another opinion, go for that! I know I've had many tests done over the yrs. I couldn't rest until I did. 

I'm going ask my neurologist to have a lumbar puncture also.

I've had several mri for MS, not enough white matter to confirm but always, a probably no, but you should have a puncture. I refused and now wish I'd had done it. 

I was twice bitten by a spider! Had a red streak going to my heart, possible encephalitis, so took nasty antibiotics for that.

So the lumbar can confirm or deny these.

Its not a pleasant test, so I've heard, but I'm sure you'll do fine. It'll be good to rule out encephalitis.

I hope it's negative!

Please keep us posted ok

Be thinking of you and prayers for you!

Take care 

Ns

 

 

 

 

[[st...]]

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

starmansuperBB

hey, sounds like your having a tough time, I'm so sorry. 

I think it's good to get tests done, reassurance is always good.

It really sounds like withdrawal symptoms at least to me, but if you feel you need another opinion, go for that! I know I've had many tests done over the yrs. I couldn't rest until I did. 

I'm going ask my neurologist to have a lumbar puncture also.

I've had several mri for MS, not enough white matter to confirm but always, a probably no, but you should have a puncture. I refused and now wish I'd had done it. 

I was twice bitten by a spider! Had a red streak going to my heart, possible encephalitis, so took nasty antibiotics for that.

So the lumbar can confirm or deny these.

Its not a pleasant test, so I've heard, but I'm sure you'll do fine. It'll be good to rule out encephalitis.

I hope it's negative!

Please keep us posted ok

Be thinking of you and prayers for you!

Take care 

Ns

I will let you know what happens, I aim to start a journal on this website about my recovery. Hoping atleast in a year I can be the one to share a success story. But im definitely in the thick of it now. The ice cold nerve sensations are now going to other parts of my body. usually its all in the legs but now it's my hands and near my spine. Either this damn drug is playing awful tricks on me or something more sinister is going on... I suppose only time can tell, but I'll be sure to share my story when the time comes and when i'm healed again. 

I started my first NAD+ infusion today, I have heard differing opinions, but I have the blessing to be able to afford it and go through a month of treatment so I will also get back here about that. 

[[ns...]]

1 hour ago, [[s...] said:

I will let you know what happens, I aim to start a journal on this website about my recovery. Hoping atleast in a year I can be the one to share a success story. But im definitely in the thick of it now. The ice cold nerve sensations are now going to other parts of my body. usually its all in the legs but now it's my hands and near my spine. Either this damn drug is playing awful tricks on me or something more sinister is going on... I suppose only time can tell, but I'll be sure to share my story when the time comes and when i'm healed again. 

I started my first NAD+ infusion today, I have heard differing opinions, but I have the blessing to be able to afford it and go through a month of treatment so I will also get back here about that. 

starmansuperBB, hey sounds painful for sure.

I think you're describing withdrawal symptoms but as I said, no harm in getting tests done. 

Have you ever taken antibiotics?

If so, which ones?

Doing a little survey for my own research. 

I'm looking forward to hearing how your test turns out, at least you'll have an answer for that.

Nerve pain, cortisol, adrenaline all feels similar. I have lots of it.

Also, foods I eat cause me a lot of unwanted symptoms as well and seem to affect my nerves. Our cns is lit up like a candle stick and our brain is trying heal itself. So I wouldnt be surprised if your suffering from this but we will see soon enough. 

It's a great idea to write your story, I think I will to. You can have here on bb for others to read and those stories give us hope, we compare our symptoms, things like that.  Overall I think it's good to have them.

So, one day we'll all have one right!

Ok, I'm pretty miserable right now. I've got a msg so I better go.

Take care ok, I'll talk to you soon 🙂 

Ns

 

[[st...]]

13 hours ago, [[n...] said:

starmansuperBB, hey sounds painful for sure.

I think you're describing withdrawal symptoms but as I said, no harm in getting tests done. 

Have you ever taken antibiotics?

If so, which ones?

Doing a little survey for my own research. 

I'm looking forward to hearing how your test turns out, at least you'll have an answer for that.

Nerve pain, cortisol, adrenaline all feels similar. I have lots of it.

Also, foods I eat cause me a lot of unwanted symptoms as well and seem to affect my nerves. Our cns is lit up like a candle stick and our brain is trying heal itself. So I wouldnt be surprised if your suffering from this but we will see soon enough. 

It's a great idea to write your story, I think I will to. You can have here on bb for others to read and those stories give us hope, we compare our symptoms, things like that.  Overall I think it's good to have them.

So, one day we'll all have one right!

Ok, I'm pretty miserable right now. I've got a msg so I better go.

Take care ok, I'll talk to you soon 🙂 

Ns

I have not taken any antibiotics , atleast none in the past 4 years . One specialist is suggesting I try Low dose naltrexone, I’m willing to give it a shot.

seeing my neurologist tomorrow at 11 AM, but doctors tend to dismiss my symptoms as something psychological and idiopathic, so I’m probably going to have to fight tomorrow to get my point across. 

still praying this is something I’m going to heal from and nothing malicious , I suppose the chances of me getting some auto immune or viral In my CSF is too much of a coincidence after going through a year or two of drug abuse ,

but it just seems no matter where I look in the real world I can’t find anyone’s who’s perpetually been in this much pain and have had confusing symptoms like me, after 7 months you know . Only really this website. so I have to keep fighting and looking for answers. 
doing my best . I’m not perfect. Just want to wake up and look around in my home and feel like everything feels ok . Cuz usually every morning I instantly start feeling really off like my brain is slowly dying. Ugh . 
 

Edited March 21 by [st...]

[[ns...]]

StarmansuperBB, I'll keep you in my prayers fir your appointment tomorrow. 

Hope it goes well.

be sure to spell every out from beginning to the present!

my appointment is on Tuesday!

ive already excepted my symptoms are from benzos withdrawal and anxiety. But i do know i had many symptoms prior to benzo. Its difficult to know what were experiencing if we don't find answers!

I know that reassurance helps me very much, but like you, so many times I go to er or doctor and come away with nothing but a bill!

Try to write your symptoms down, go back to when everything started for you and write that down. It will help u when you talk to the doctor. 

I literally wrote an outline of 30 yrs of symptoms, appointments and my opinion as to where my Syndrome began.

I also made a list of specialists I wanted to see, in the order I felt best to see them.

We must be our own advocate!

Only we can express how we feel.

So I hope you'll have time to a small outline but you can always do it over time. 

This will also help u to see your progress as well as validate your concerns. It could also help you see that withdrawal, anxiety or something completely different is causing your symptoms. 

So, good luck tomorrow, 

Hope you'll let us know how things go. Take time to digest your visit before you respond ok

Take care

Ns