I did something silly back in 2013 and took some 'research chemical' Benzodiazepines, mainly a Diazepam analogue called Diclazepam at stupid doses equivalent to over 700mgs of Diazepam a day, very stupid I know but I stopped against insurmountable odds. I had to taper pretty fast (from March 2016 to September 2016 and stopped/jumped on September 18th 2016). We do not know what was in this stuff and I was refused medical assistance to stop. I am also under an addiction treatment agency for an accidental OTC Codeine addiction for which I am prescribed Subutex. This agency refused to help me stop the research chemical Benzos and pressured me to provide a clean urine sample for Benzos asap or else face losing the Subutex and probable death from overdosing on paracetamol and Ibuprofen also in the Codeine preparations.
I have been off Benzos for five months and three weeks today. This is not considered long in the eyes of most Benzo wise communities, but I am also dealing with the huge unknown of what was in the 'pellets' I was taking that were sold under the guise of 'laboratory reagent only, not for human consumption'. Very stupid I know. I've been beating myself up for months for doing this to myself.
I am experiencing a lot of neurological symptoms which began in earnest since I stopped these Benzos. One of the most disturbing ones is a constant sense of electricity (vibrating like I've swallowed a million phones on vibrate mode). It feels like every single fiber in my body is moving but you cannot see it externally, I don't shake much anymore, sometimes in the mornings but I don't have a tremor or shake visibly. I've had some all round bloods and urine done as a first line to check my overall health, and all those showed was a vitamin D deficiency which I am going back to the doctor about next week. (I am in the UK and as most of you will know, our winters are pretty lacking in sunlight, so this could be why. I am also stuck inside a lot as I am pretty unwell, as you'll find out below.
This may seem like a no brainer to anyone who knows about Benzo withdrawal and it's complexities, but I am really not sure ALL of this is Benzo withdrawal, this is why I wonder:
I have almost NO mental symptoms. These seem to be far more distressing and prevalent to people going through Benzo withdrawal than most of the physical ones. Panic, anxiety, depersonalization, derealization and phobias seem to be the big guns, I only have the anxiety I had before touching Benzos, and none of the other mental symptoms.
There is a close family history of neurological conditions, including a diagnosed case of Neuromyotonia.
I also have these symptoms:
Numbness in my right leg if I move or walk
Lower back pain (right on the L5/S1 spot where my S/O developed Cauda Equina Syndrome)
Muscle 'flutters'/twitches that feel like a butterfly is under my skin, this happens all over my body
Pins and needles randomly all over, but really severe on right side
Vision problems, eye floaters, blurred vision, can't stand bright light, blind to the point of becoming disoriented in the dark, eye test was clear apart from my old issue of astigmatism and needing glasses for close work like computers, but glasses do nothing for these issues.
burning skin, like sunburn or scalding sensations, again all over my body
Burning mouth, like I drank a hot drink too fast
Trigeminal nerve pain, electric sensations in my mouth and teeth
Weird 'itching' sensations in the right side of my head, like an itch inside my skull
A strange sensation in my lower back like someone is clicking their fingers inside my spine, like a thud sensation. Again this feels like it's coming from a nerve rather than a bone or muscle
Eyelid twitches, mainly in right eye, pulls my eyelid closed sometimes
Hyperhidrosis. I sweat so much in warm environments and during any kind of physical activity that I find myself needing to change my clothes up to 4 times a day. I also carry spare clothes if I am going out.
Constant severe fatigue
Very weak muscles, feels like all my muscles are atrophying
Constant unwell/disease feeling. I am pretty lethargic and struggle to move most of the time, and if I do move, it brings these symptoms on to unbearable levels.
Severe 'neuropathic' period pain (more details below)
Thumping/racing heart (normal BP when I saw doctor, even though my heart was racing so badly it felt like it was skipping beats
By far the worst of all this is this internal vibrating, it rules every part of my life, and even though I am certainly not suicidal (I actually enjoy being off meds and able to think clearly and process information again), I often envy dead people for the fact they can't feel these sensations. Even sleep is little relief because it either gets very severe during my sleep and wakes me up, or I wake up in the morning feeling like I have a severe bout of flu. I wake up feeling very unwell every day, I've forgotten what it was like to wake up and feel anything like normal and 'well'.
People in Benzodiazepine withdrawal report 'toxic mornings' which for them consist of yet again, distressing mental symptoms, but for me it is a severe feeling of malaise and general illness, again like flu. I've only had a couple of really bad episodes of flu, both times my fever went up so high I got delirious and started hallucinating, it was nasty, and I kind of use those flu memories to gauge other feelings of illness now.
Another disturbing aspect of it is what it does when I get my period. It's in my entire body most of the time, but when I get my period (which is excruciatingly painful, probably endometriosis but I've got so much going on health wise I've put that on the back burner for now), it moves into my internal pelvic organs, and feels like my entire uterus and ovaries are full of boiling bubbles and electricity. It's absolutely awful, I almost pass out from the pain now. I had severe pain before, but now it's just horrendous. Each month is absolute torture to the point I am actually delirious from the pain, can't move, can't talk, can't even sit up some of the time. It's a mix of level 10 'cramping' and neuropathic type pain in my insides.
What kind of tests should I ask for next?. I've considered every possibility from cancer to Parkinson's disease to benign brain tumor. I know it's very unlikely to be anything like cancer as my bloods came back clear, but I really wonder if my stupid actions ingesting strange substances may have triggered or covered up some other type of neurological condition.
I'm a 31 y/o female.
Thank you for your time.