13 months off and its getting worse

[[Si...]]

Lo peeps, 

I'm 13months off and viewed over months it is defiantly getting worse. During the winter I had heart problems and now the neurological side of things is worsening by a great deal since may. both worse then they have ever been compared to the years of tapering. 

Surely this isn't a typical benzo w/d trajectory?
I cant convince myself anymore that it is. 25% chance that is still benzo at best. 

I dont get it. its getting harder to bare these symptoms that im dealing with on a daily basis. 
I've withdrawaled from citalopram before in the past and that sure as hell didnt have this kind of behavior. 
Benzo is totally different I've experienced that but this cant be the same thing. 
I'm seeing doctors but phffff....   I need answers and could use a break. 

[[pi...]]

Hello @[Si...],

It is a great thing being off benzos for 13 months! I also celebrated being a year away from the drug. However, as much as I was pleased with this milestone, I was also not yet recovered. I still experienced a plethora or symptoms. Many of mine were physical, nerve and muscle issues that were my longest lasting symptoms.

It sounds like you are seeing doctors to rule out underlying causes, that’s good. I did this as well. I found good healing the second year into my recovery. I still had some massive waves but did recover completely around 15-16 months off.

Of course, each of us will have our own recovery trajectory, based on our unique make up. For me, acceptance and patience saw me through the rough times and distraction was also key. I also kept believing in my healing. 

I don’t believe there is a typical w/d. It varies so much per individual. I wish I could give you definitive answers, but know that others have taken this long or longer to heal, it is possible. 

[[Ma...]]

Can you try to explain what your neurological symptoms are?

And I agree with @[pi...] that at 16 months there is a real trend of rapid healing ❤️‍🩹 

[[Si...]]

Thanks for that insight, that does reassure me a bit.

"Many of mine were physical, nerve and muscle issues that were my longest lasting symptoms".

Can say that again.

Currently I'm suffering from;
- burning headache at the back of my head, another burning pain at my lower back at the right of my spine only this one comes and goes and is more sharp.
- issues with walking coordination, like my body has a hard time compensating well when walking on uneven grounds. like if the ground is elevated with the next step or if its a ground decline or something like that.
- muscle tension issues then too weak muscle tone like hypotonia and sometimes too much. then I can barely stand on my feet or some muscle parts feel constantly contracted and wont relax naturally specially the jaw and palate like a sort of spasticity. 
- Like sudden very brief short sensation that you are about to collapse.
- Pin and needles usually short and random, a month ago did have pins and needles at my tongue which was like 12 hours constant for about a week, a couple of weeks ago it came back shortly. 
- ear infection.

For some reason I have these complains more as I startup in the morning and gradually they become better overday. for some reason whenever I sleep with CPAP it becomes worse the next day. 
Im currently going to sleep more often without CPAP, only that will overtime result in more demand on my heart. that isn't exactly the trade off I want to be in.
I just woke up without CPAP and its a lot better then yesterday with CPAP.
I could theorize as to why but I don't get it.

Did my morning stretch exercises, right now going to take some breakfast ^^> 

[[Si...]]

I'd want to try Bipap instead of CPAP but im not sure if the specialist will let me. maybe I could buy a machine because this is all taking too long. (EDIT: nevermind, it doesnt seem to be possible to buy a Bipap machine without prescription).

Edited June 21 by [Si...]

[[Ma...]]

Have you tried a device that simply keeps your tongue in place as you sleep? Some who find CPAP’s unmanageable find these helpful.

[[Si...]]

Well the thing is I have non allergic rhinitis, a lot of sleep apnea therapies that require you to breath through your nose only isn't for me. If im not mistaken that tongue device blocks airflow through the mouth. 

pff I had such a bad time falling asleep with pins and needles, shooting sensations like I would lose consciousness, muscle tension and anxiety as well now. it feels like when I got brain trauma back off the metoclopramide incident. 

I have a screening of the diaphragm coming up this tuesday, while I had a x-ray picture taken earlier in June, and a heart CT scan in April.

I don't know what to do. I feel committed to go for all the reasons, yet if my body is doing this it feels like its not the right time. but I wont get another chance from my doctor. the best option may be to postpone the appointment. this indecision is stressing me out as well. I want to get it over with as with postponing will just delay the stress but my body might get more time to recover from previous and current issues.
if I do go tuesday I will likely still have some anxiety about the radiation from that screening the next couple of days or weeks. 

[[Si...]]

@[pi...] can you make sense out of the neurological symptoms that im dealing with? what where the nerve and muscle issues you where suffering from?

Edited June 22 by [Si...]