Something horrible is happening to me

[[JX...]]

 

Hi. I've been off Benzodiazepines for about 6-7 years now. The reason why I stopped taking them in the first place was because withdrawal symptoms started to emerge even after taking my regular dose which was 1.25mg of Clonazepam. I know that sounds odd, but after being on them for several years I was having severe depression, never ending anxiety, brain fog, cognitive impairments, and muscle spasms to name a few symptoms. Kind of thought it was benzo related because I remember the times when I would wake up 1-2 hours late and end up in interdose withdrawal from Klonopin because I took it at 10 AM instead of my usual 8 AM time. I actually reached a certain point where I had to take my Klonopin at the EXACT same time every day because even taking my meds 1 hour late would result in awful withdrawal symptoms lasting about 2-3 days till I adjusted again. The next few weeks or months I continued to have worse symptoms.

I was having tons of problems with my memory and cognitive function coming off benzodiazepines. Heck, even before I got the never ending anxiety I remember waking up in the middle of the night and coming to the realization that my brain wasn't working as well as it used to, that my memory was lost. Around this time I decided to see a psychiatrist for my anxiety problems and he put me on a medication called Gabapentin. I only took it for a few days and then ultimately stopped because it wasn't very helpful. About a week later is when benzos finally destroyed me, and I can honestly say that I haven't felt the same since. A lot of my memory and cognitive function did return after being off them for some time but I still struggle with anxiety and never ending tinnitus that I didn't have till I stopped the benzos.

After so many years I kind of just accepted that the drugs most likely permanently damaged my brain and continued on with my life. It's been years since I've visited BB for support because I adapted and learned ways to cope with my symptoms. However, these past 3-4 weeks I've noticed that my symptoms have gotten worse. First I had a really bad upset stomach and chest pain for about a week straight. It did get better but then I had this strange feeling that something got stuck in my throat and that lasted days. Over the next week these symptoms did slowly go away (for the most part) but now I have some new symptoms that are the most horrifying yet. muscle weakness, aching, burning, tingling, pins and needles, as if my circulation got cut off in my hands. A little over a week ago I woke up in the middle of the night and both of my hands were totally asleep. I tried shaking them for about an hour to wake them but they would not wake fully wake up and started to hurt really bad. A few days after that I still had the pain and cut off circulation feeling / pins and needles in my fingertips.

I decided to admit myself to the ER last week because the pain has gotten so bad that just typing on the computer is painful. It is a burning, aching feeling in my forearm and knuckles with occasional stabbing needles going to the fingertips. What's worse is that it's a constant pain which means I never get any relief from it although it does seem to vary in intensity throughout the day with it being the most painful at night. I wake up about 9-10 times every night due this burning/aching pain.

The ER performed a chest x-ray, CT scan, and did blood work. The CT scan did show some sort of small mass on my brain less than 2cm in length. They said it's benign tumor called meningioma and acted like it's not a big deal to have that. The neurologist in the hospital tested my reflexes with a hammer as well as my ability to feel pain and said that there's nothing wrong with me. I think he assumed that everything was just in my head because he wanted to start me on 0.5mg of Clonazepam which I rejected of course.

Another few days later... this same pain spread to my legs, face, nose, neck, back, it would pretty much appear wherever it wanted to. I noticed that if I even touched my leg gently with my finger it would feel like the first 3 layers of skin were frayed off or like someone was touching me with a sunburn. Even the AC from the car was causing a great amount of discomfort/pain while it was blowing on me. It felt like my skin was on fire.. My face was burning hot to the touch, my heart rate was locked at 100 bpm due to anxiety, I was shaking uncontrollably like a heroin addict. It was pure hell. I literally thought I was dying.

And so I went to the ER again after not sleeping for 48 hours and this time they did every test in the book. Tons of bloodwork, CT scan, brain MRI with contrast, neck MRI, etc. The doctor was worried that my tumor could've been something serious like bleeding in the brain so she had me admitted to the ICU. Every 2 hours the doctors and nurses would check up on me and they all said that the mass on my brain would not cause any of these symptoms due to the location of it. They had no idea what was happening to me. Anyway, after waiting like an entire day for the neurosurgeon he finally said that there's nothing life-threatening or serious wrong with me. In fact, he said I have a perfect spine that he is jealous of and the tumor on my brain has probably been there since birth.

So yeah, all tests came back negative. Blood was normal, MRI was normal, CT scan was normal, chest x-ray was normal, etc. But I am still having this awful aching and burning pain in both my hands. Sometimes it's burning, sometimes just achey, sometimes my legs are burning, sometimes my neck and back is weak and sore... tons of weird symptoms that is ruining my ability to function. They already ruled out the serious things like MS so what could be happening? It's almost as if some of the doctors just think it's all in my head but what I'm feeling is very real and frightening.

I've been fighting so hard not to reinstate meds and rejected the Effexor and Gabapentin they wanted to put me on. I am starting to wonder if I should just take it because i dont know how much more of this I can take.

 

Edited October 8, 2023 by [JX...]

[[Ho...]]

Hi @[JX...],

Wow, what a conundrum! First, it's good news that they could not find anything. Something is definitely wrong, but it's not the standard stuff, so all systems are a go—except that they're not. 

The Effexor doesn't make any sense to me. They must think you are overly panicky, but you're not. You don't have an anxiety issue, you have some kind of nerve issue, and they don't know what it is.

Gabapentin is one of the rare medicines that doesn't get metabolized via the liver, so it's a bit safer than many others. It's a good med for nerve issues. It didn't help you before because you were going through benzo injury/withdrawal/healing and that's a wild hairy beast that nothing but time tames. You might consider trying gabapentin at this point. If you take it and it works, you've found something that helps. If it doesn't, you're no worse off.

Clearly something is wrong. I just watched a video from Dr. Josef Witt-Doering, who is one of the rare psychiatrists who treat benzo injuries. Accord to him, when symptoms come back 5-10 years later, he suspects they are not from the benzo injuries but a new issue. I know you were hospitalized but sometimes the best doctors are not found in the ICU. You might need to find more gifted MDs, since the ones who've looked so far can't find anything. 

Just as all doctors are not equal, not all MRI's are equal. Some are lower quality and may show enough for run-of-the-mill issues, but not enough for rarer issues. I know this because a family member works at Rush in that department (Rush is one of the finer hospitals in IL) and explained this to me. So there are a number of reasons why you may have something as yet undiagnosed.

In short, you may have something that is yet to be discovered. if I were you, I'd look for the best doctors you can access and keep looking for answers, and I'd try Gabapentin. 

Just my two cents!

Warmly,

HCHC

[[JX...]]

Hi, HCHC

Thank you for replying. I honestly didn’t suspect that my newest symptoms could be benzo related unless opioid drugs can send us back into withdrawal? I only took codeine one time though and it was prescribed to me. The weird thing is immediately after I took that I went from having 0 symptoms to waking up in the middle of the night with both arms sleeping and hurting. Probably just a coincidence. As far as the panicking thing goes, I wish that were true. I’ve been waking up every hour and feeling so nervous that I just want to get up and walk around. I feel so uncomfortable. I wonder if I should just take some Valium leftover from 2017 just to feel some temporary relief and start drinking or something.  I feel like I have nothing to lose at this point. My life seems like it’s ruined. And it’s no fair because I fought like hell to get off benzos and didn’t take anything else or drink except codeine 2 or 3 times in the past 6 years which were prescribed to me for pain and now I’m worse than ever. 

Edited October 9, 2023 by [JX...]
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[[Je...]]

@[JX...] I am so sorry you are going through this! Very frightening and frustrating, I am sure. I wanted to tell you, first, though, that I, too, have a meningioma. Mine is on my spine at T2 (thoracic vertebrae). They ARE benign and only pose a risk when they are pressing on something else, like a nerve root, or taking up too much space where they should not be. My tumor is being monitored at this point, and if it grows or starts to press on the root nerve in my spine, we'll probably have to remove it. Otherwise, it just hangs out. I named it, "Izzy". 

Your symptoms sound like peripheral neuropathy, to me. I am on chemotherapy and that is one of the side effects that I experience. But there can be lots of other causes, too. Some are even genetic. I, too, wake up with similar pain - and often can't go to sleep at all because of it. I have a palliative care physician who recommended Gabapentin. I refused for now because I am still tapering off of benzos and don't want to complicate the issue, but if you've been off benzos for 6 - 7 years, you may have no problem at all with taking it, and it may help. 

I have anxiety, too (which is why I have been taking the benzo), and I've found that daily meditation and deep breathing really, really helps. I can actually stop a panic attack with breathing. I wasn't able to do that before, but I had some biofeedback counseling that was amazing.

I don't know, honestly, if a drink or codeine would send you back into withdrawal. I think it is probably a coincidence, but everyone is different. Even though I'm tapering and in chemo, I still have an occasional diluted beer (yeah, half beer and half fizzy water - it's not bad) and I take pain medication for my back, and I don't think it has set me back. At least I don't notice any amped up withdrawal. 

Maybe you can see a specialist? A neurologist? ER docs are great generalists, but if there is a neurological reason you are experiencing this, you probably need someone with deeper knowledge than you can get at the ER. And just because something isn't "life threatening" doesn't mean that it doesn't hurt!! 

I really hope that you can get some relief! 

Jess

[[bw...]]

I dare say your in a setback. And yes they can be stress induced aswell.

Refer to Dr jenn leigh. Her posts are on here.

 

I am 6years off. I took pepcid and was throwm into severe acute. Previously 85% healed. I also have been taking opoids daily for 12 years. I still am on oxycodone daily. I healed previously to 85% while on opiates. Im unsure if the codiene set you back but I do doubt it.

 

Please refer to this from the ashton manual. This is not uncommon.

Like you, my symptoms are severe I just got bloodwork done and a brain MRI. - normal. Its my setback causing such severe symptoms in me.

[[De...]]

@[JX...] Imo dont use benzodiazepines again ever..

 

I think you have other stuff that could be of help for blood circulation, idk how It would affect your anxiety levels..

 

You should check If you're deficient on something, vitamin b6 or b12, iron, electrolites in general, hormones, just in case because of that found in your brain, and your thing going on with nerves and pins and needles, check your prolactin levels, as prolactin might be involved, prolactin induces issues, which dopaminergics great, bromantane might do It, probably phenyl piracetam and or amordafanil as dopaminergics also, i guess the bromantane and phenyl piracetam would bê more usefull, and idk how you would react to phenyl piracetam, probably not too bad If anything aside then positive 

 

Things for Inflammation,  as Theobromine, pioglitazone, bromantane and so on... Maybe the Active form of b6 and so on, intransal insulin helps with anxiety and you can use in cycles and low doses, i think that doctors always gaslit patients of their health concerns, they arent of much help most of the time 

 

From what im aware of opioids, they cause sensitization for some, as pro inflamatóry trough some celular Pathways 

Edited December 15, 2023 by [De...]