Hello everyone! I am a 23 year old male from Germany and I'll tell you my story now:
2013:
August:
Due to martial arts (MMA), I suffered from a inguinal hernia.
December:
Surgery to fix the inguinal hernia. 2 weeks later, I had a peptic peptic ulcer from
diclofenac which I had to take post-surgery. Due to nerve damage from the surgery and
pain from the peptic ulcer (worst pain in my life, like a knife stabbing me), I was put
on tilidine. Tilidine is an opioid well-known in Germany.
2014:
January:
Right shoulder started to hurt. Tilidine was continued until May.
May:
Shoulder MRI showed a broken acromion that didn't heal. I was prescribed
Targine (Oxycodone CR + Naloxone) 20mg twice a day. The doctor didn't want to
do a surgery yet because he said conservative therapy might help.
July:
I was heavily depressed because I had pain in my SI joint, nerve pain due to the
hernia surgery and a broken shoulder that didn't heal. So I started smoking weed on
a regular basis.
October:
I ran out of weed. I decided to order herbal blends (synthetic cannabinoids). I smoked
them regulary until January 2015.
November:
I opened my own business and made a lot of money. I was highly stressed because I didn't
know I would get so much customers over night and got over-excited because I literally went
from poor (unable to work due to my physical problems) to wealthy. I made my dream come
true buying a mustang car. This is the only thing that's left in my life that's making me happy
because I always dreamed of it. Sure, it's nothing too luxury, but I was growing up with an
American step-father and always loved this car.
December:
I felt the pain got worse eventhough I was taking 40-60mg targine a day
(opioid-induced hyperalgesia?). So I decided to take buprenorphine which I
got from a junky friend. I took a 8mg pill at once and I felt like I was flying
two hours later. Possibly strongly overdosed, but one of the greatest highs
ever. Unbelievable... Since then I was regulary sniffing 0,2-0,4mg buprenorphine
on and off. When I ran out of it, I switched back to targine or hydromorphone
(which was prescriped to me at that time because targine stopped working).
Hydromorphone didn't help much either. At this time, I also began suffering from
tinnitus and neck pain.
2015:
January:
I smoked a salvia extract for the first time in my life which resulted in a horrible
experience. I had a whole body cramp, my vision turned black and my heart-rate
got up to 200 beats a minute. My brain felt like being in tornado.
The horror trip only lasted 2 minutes, but since then I nearly stopped all drug
use. I stopped smoking herbal blends after that panic attack and only did weed
ocassionally (which triggered panic attacks as well, but I always took 0,5mg
xanax when it happened).
February:
I was heavily abusing opioids. Some days I took crushed targin pills, some days I sniffed hydromorphone
and sometimes I sniffed buprenorphine.
!!! At this time I developed Depersonalization and Derealization !!!
March:
Because I still had nerve pain in my groin, the doctor detected another hernia on the
other site, so I got surgery the same month. After surgery, I was heavily fatigued
and my Derealization was stronger than ever.
April:
I decided to get surgery for my shoulder, too. After surgery, I was unable to sleep for
3 days in a row due to the heavy pain when laying down. I took huge amounts of targin
and the days later buprenorphine. At the same time, I heavily smoked weed, trying to get some sleep.
After 3 days, I finally was able to sleep. But when I woke up, everything changed. I woke
up feeling very drunk. My vision was jittery, I had geometric shapes in my vision and
very strong visual static. I also had the feeling that I would faint with some sort of
"electrical buzz" in my forehead occuring every 30s. I paniced and always took a deep breath
because I thought I was going to die. After hours of anxiety, visual distortions, a weird
brain feeling and feeling faint, I was put to the emergency room. They did an EEG and a blood
test to rule out a buprenorphine overdose. Everything came back normal. They wanted me to stay
but I decided to go home. Once I was at home, I still had this weird "electrical/vibrating" feeling
in my forehead that only lasted for 1-2 seconds but occured frequently. It's the same feeling
like when you are very tired and falling into microsleep. Did this happen because I wasn't taking a
break between targin and buprenorphine? Did the buprenorphine cause a sudden withdrawal and
deplete my brain's dopamine?
Since that day, I am suffering from several neurological and psychological problems:
- visual snow
- derealization and depersonalization
- panic attacks
- anxiety
- brain fog
- depression
- dysphoria
- overstimulation from lights and sounds
- sound sensitivity
- light sensitivity
- vibrating/jittery vision
- some texture patterns vibrate
- halos
- trails
- no 3D perception anymore
- no perspectivity in life anymore
- absolutely no joy
- everything sounds different than before (a little bit muffled)
- I don't smell things like I used to do (for example the summer flower air outside, it's just air now...)
I wasn't able to go to stores anymore because sounds, lights and all the people caused a feeling of
fainting. It's like I was overwhelmed by every stimulation. The only way I was able to go out was
taking valium or xanax. I also felt like I was always hyperventilating chronically (yawning and sighing
often, the feeling not being able to catch my breath when in public situations).
Because I was always worried about what was going on, I read that too much glutamate and too little GABA
can be the cause of being overwhelmed by sounds, lights and movement of people. I also have chronic neck
tightness which makes the symptoms even worse because sometimes when my muscles in the neck cramp
it feels like I am being choked and not enough blood is reaching my brain.
May 2015:
Since May, I am using benzos everyday and stopped opioids until December 2015.
I started with xanax and valium.
September 2015:
I was put on clonazepam, which I take until today. First, I was taking 0,5mg.
I reached 4mg a day at my peak and now I am down at 0,75mg - 1,5mg, depending
on the day. When I know I have to go out where a lot people are, I take more before
leaving the house because the last time I didn't do it the overstimulation made me feel
dizzy and fainting again.
October 2015:
My girlfriend just vanished from one day to another because she couldn't handle me
anymore. I was tired all the time, had no emotions and wasn't able to go out with her
due heavy fatigue from the medications and anxiety. This caused a great shock because
I thought she understood my illness.
December 2015:
My 13 year old dog who suffered from a heart disease and epileptic seizures had to be
put asleep because his body was filled with water more and more and medications didn't
work anymore. This was the saddest day in my life and another loss...
2016:
As stated above, I still take clonazepam and sometimes a small amount of valium (for muscle spasm in
my neck). I also tried pregabalin but this has caused horrible feelings. I had much worse depersonalization
and felt very fatigued and depressed. Due to my neck spasm, I have received a special splint for my
jaw because I was diagnosed with a heavy TMJ disorder.
4 weeks ago, a neurotransmitter and stress hormone test was done using urine and saliva. I know
many people say this tests are useless, but the doctor who made it has helped alot of people
here in Germany with all kinds of diseases (CFS, depression, fibromyalgia, etc.). I've read there is a
relationship between the neurotransmitters in the urine and the central nervous system, correct me if I
am wrong.
My test results:
Adrenaline: 2,5 (4-10 normal) DEFICIENT
Noradrenaline: 10 (32-58 normal) DEFICIENT
Dopamine: 25 (90-220 normal) BIGGEST DEFICIENCY!
Serotonine: 105 (148-230 normal) DEFICIENT
GABA: 3,99 (1,5-6,8 normal) NORMAL - I take Benzos, it's possible that without them I would lack GABA, too.
Glutamate: 34 (8-25 normal) TOO MUCH
Cortisol morning: 2,4 (2,5-10,8 normal) DEFICIENT
Cortisol afternoon: 0,57 (0,7-3,5 normal) DEFICIENT
Cortisol evening: 0,21 (0,1-1,0 normal) NORMAL
At the time the test was done, I was taking 1mg clonazepam and 150mg pregabalin. Without those
medications, my glutamate would be even higher and my GABA would be deficient, too, my doc said.
The doctor said it's very unlikely to see such low dopamine levels.
To me, the test is valid because of the way I feel:
- Low adrenaline, noradrenaline and cortisol: bad stress handling, avoidance of stressful situations
- Low dopamine: jittery vision, dysphoria, slightly jittery hands and head
- Low serotonine: not feeling well, depressed, problems sleeping without medication
- High glutamate: overstimulation, running thoughts 24/7, nerve pain, feeling faint in crowded places
- When not taking benzos (low GABA): feeling anxious and worried, muscle spasm, nervousity, panic attacks
Supplements I am taking and which I stopped (recommended by my doctor):
- N-Acetyl-L-Tyrosine for dopamine, noradrenaline and adrenaline
- N-Acetyl-L-Cystein for neuroprotection from too much glutamate and detox
- OPC for detox
- Vitamine C for several benefits
- folic acid
- 5 HTP: STOPPED. Headache, depression, negative thoughts. Almost same side-effects like SSRIs for me
- Vitamine B6
- Taurine and Magnesium for mild NMDA-antagonism
I am not feeling better yet. 5-HTP made me feel worse and I also have a problem with NAC. It seems
to make me feel kinda spaced out, especially when I take high doses (2,4g over the day). I have read
that it could be due to the detox and the toxins entering the blood stream.
I also tried Huperzine A for NMDA-antagonism but it doesn't make me feel good.
I do have a problem with my actual medication:
The clonazepam helps me with all the anxiety problems. I still suffer from depersonalization, visual snow,
muscle spasm and sometimes overstimulation, but not to the extend of feeling passing out. With clonazepam,
I have more control over my breathing patterns and I think that my chronic hyperventilation has contributed
to my actual situation. My CO2 and O2 test done by a cardiologist turned out bad and I also had a negative
T-wave, eventhough my heart is healthy. I have been told it's due to chronic hyperventilation (CO2 lowers,
blood vessels constrict, less oxygen reaches brain and organs). I also had strong sternum pain until I noticed
that I am a chest breather (mainly due to the fact that I was wearing a shoulder-arm sling for 8 weeks that was
very tight around my belly, forcing me to breath through my chest). I got rid of that breathing 3 weeks ago.
The clonazepam makes me feel horribly empty and depressed, though. I am also very fatigued all the time and
even with small dosages I feel like taking a nap almost everyday. I also lack any motivation. I feel like an empty shell.
Since last december, I ocasionally use opioids again (only tilidine or targine). They have a mixed feeling for me.
I feel energy, motivation, sometimes even joy in life again. But it also makes the overstimulation worse. One month
ago I was visiting a convention with my girlfriend and that morning I only took a very small dosage of valium (2mg)
and 10mg targine. When we reached the place with all the people, I felt like everything around me was moving too
fast and I couldn't filter the sounds and movements around me. Before I suffered from all this problems, I have never
been bothered by other people talking or moving, I could just "filter" it out. But now I am overwhelmed in situations like
this because I can hear everyone talking. It seems my brain's filter system is damaged. At that day, it was also incredibly
sunny and the light sensitivity made it even worse. After popping a 0,5mg clonazepam (I wouldn't advice anyone to mix
opioids with benzos if you don't have a tolerance!), I felt better after half an hour. Is targine indirectly lowering GABA
by increasing dopamine? Lower GABA means higher glutamate, or am I wrong?
I do not know what to do to get me out of this situation. I am already trying to get off the benzos (which I will manage if
I continue tappering like this). But I am afraid that my glutamate will be sky-high when I do not longer take it.
I have lost the ability to work. I went from zero to hero and to zero again. This is the worst side-effect of my illness. I worked
so hard for my business and since my girlfriend left me in October 2015, I couldn't work anymore. The fatigue was too
strong and I had to close my shop. I was on the way of leading a wealthy life - something I could have never dreamed of
because I didn't grow up in a wealthy family. And due to this neurological problems, I have lost everything I have put up.
I am even in debt (tax) and they are about to take away my car. So I do not only have health worries but also existential fears
that in turn make my psychological problems even worse. It's a circulus vitiosus I can't escape. I can't sleep well anymore
as well because I think about how to solve my financial and health issues all night. I am completly desperate.
The only days I feel happy and less worried are the days where I take opioids, especially targine. It makes me feel motivated
and alive again, eventhough it makes me feel spaced out a bit which worsens my depersonalization which also increases anxiety.
In dimmed rooms, my visual disturbances are stronger as well because everything looks a bit like a gloom effect and when
coming from outside (when it is sunny) into my dark apartment, I can barely see because my eyes take so long to adjust to
the darkness.
I have read that the main metabolite of tilidine, nortilidine, is a NMDA-antagonist and dopamine-agonist. Shouldn't this be helpful
managing my low dopamine and high glutamate levels? Or will it worsen brain chemistry long-term? Some opioids overactivate
NMDA-receptors when used for a prolonged time as far as I know (which can result in opioid-induced hyperalgesia). But it seems
tilidine is different than other opioids in that term.
Following tests have been done to rule out diseases:
- MRI of the neck, brain and heart
- Blood test (a little bit low vitamine D)
- Lyme LTT test (slightly positive, but nothing to worry about my doctor said)
- Organ check
- Eye exams
- Thyroid check
All tests came back fine, except a slight vitamine D deficiency and a positive LTT Lyme test (anti-genes are only a little bit elevated).
The symptoms that bother me the most when I am not anxious due to clonazepam:
- visual snow & tinnitus
- neck tightness
- depersonalization/derealization
- dysphoria
Now, to all experts on this forum and the people who may have suffered from similar symptoms and recovered:
- What supplements/medications should I try?
- What do you think is wrong with my brain chemistry?
- What's the possible cause of my symptoms?
- Is there anything I have missed to get checked out by a doctor?
To those of you who have read this - thank you for your patience. And excuse my English if some sentences are grammatically wrong. It's not my mother language.