Gampy wrote:Wow, Vlad01, that concerns me that some may feel I am trivializing their situations ... That pains me, that is not my intent, in fact I would enjoy hearing others stories, heck I ain't greedy, most people just don't like to talk about their own health issues, well heck, who knows more about yourself then yourself!
All I really did this for is people have been picking up on my snide remarks about my EOL situation and wanted to know more, I didn't want to keep having to repeat it and thought this would be the best way to cover many at once ...
Heck if folks want to open up with their own issues, I AM ALL EARS!
I know I am not the only one that has health issues.
My stuff is mostly self inflicted and I deserve what I get by life's choices, definitely the emphysema is, and it's the root cause of my current situation. Some are due to other issues like crashes or results of Military Service.
Open up, I'd love to hear yours ...
-Enjoy
When I was in my late teens, 19 iirc. I got really sick, wasted away very quickly to high 40kg, basically bones and resembled a corps. They couldn't find a cause or anything wrong that was obvious. It may have been an extreme atypical stress reaction as I do recall having a bit of a crisis on what to do with my life at the end of school and facing pressure to work a job I didn't see a future in nor particularly liked. Or perhaps it was exposure to some toxin or something but I don't recall having handled anything at the time. I can't recall if they tested for toxins but do recall tons of blood tests for all kinds of stuff including various rare diseases, all negative.
They did find that I was not producing a few key hormones from my pituitary gland in my brain but there was no physical or neurological cause that could see, it just happened suddenly and abruptly.
I was put on a few years of HRT (hormone replacement therapy), and randomly it just started working normal again, just as abruptly it seemed. No one knows why it happened and why it even recovered as the prognosis was unknown and unlikely to resolve.
I had lingering muscular issues and fatigue for years after due to how severe the wastage was, but I was reasonable ok, very fit and active. I landed a very demanding high hours job with ridiculous amount of travel while still in this lingering recovery state.
This was not sustainable at all but I didn't know how to deal with it or the expectation as a man to work my ass off at my own detriment. Of course, I got unwell again but not the original illness. More like a complete physical and nervous breakdown. Again, symptoms weren't anything typical but a mix or various types of illnesses mixed together.
I had be diagnosed anything from depression to fibromyalgia and chronic fatigue syndrome, but nothing really quite fit the symptoms exactly.
Nothing helped, I was getting worse as my workload was not letting up. I voiced my concern but work didn't give a f**k.
"Specialists" thought it was depression and that my symptoms would get better with antidepressant treatment, this was a massive life altering mistake.
I quickly found out that these sorts of drugs I could not tolerate at all, it made me very ill, physically and psychologically. But the doctors kept trying different drugs, assuring me there will be one that worked. Each one made me sicker and sicker. Fast forward a few years, I tried one that didn't instantly make me lose my mind and body, but unaware it was adding to the fatigue gradually the longer I was on it, to the point I was depressed as hell, so weak and fatigued that I couldn't work. I lost my job, Illegally I might add. My employer sacked me based on the health issues which is highly illegal in Aus. But I was done at that point.
After several months off work, a psych gave me another drug on top of the one I was on. I was very reluctant and voiced my history of extreme intolerable. She persuaded me that it was safe and no to little side effects. So I tried it. After a few weeks I actually felt better and started getting on with life.
Got back to work, started to change my life around. But there was a dark side to this drug that was not disclosed to me. Firstly, it is extremely dangerous and has a cumulative neurotoxic property. Treatment should be a short as possible with careful tapering at the end. The psych basically tried to keep me on it indefinitely.
As neuro-adadaptation set in, weird side effects crept in that my regular doc nor the psych recognized, I went to various docs and it was actually a therapist who pinpointed my weird physical symptoms to the drug I was on, more so both but the dangerous one was primary the cause.
I decided enough was enough and consulted my regular doc and the psych about tapering off the main one first. I was not prepared nor was there any info on how to taper off this type of drug. (papers and methods became available after the fact, after it was too late).
I slowly reduced over 8 weeks. Recommendations was over 2-4 weeks. So I thought I was safe.
The withdrawals were bad! I have quit maybe 10-12 different drugs prior with 0 issues. This was hell! extreme agitation, dizziness, pain (burning like sensation, in my groin area), just feeling like I couldn't be around people for a few weeks.
This cleared up by 6 weeks, seemed like it was over and dr google said withdrawals typically last a max of 6 weeks. So I was good to go! I felt heaps better and clear and sharp for the first time in like 10 years.
But this burning pain kept coming and going. Finally it went after 8 weeks when suddenly it came back to bad I had to go to my doc. I got a few tests done and the pain was not casuses by anything obvious, surprise surprise!
Then a week later, my lower right leg and foot started feeling hot and uncomfortable, like a pinched nerve. I thought, oh that annoying but it should go away.
Another 24h later, my groin went numb pain got way! worse. WTF is going on!. Few hours more I am losing my mind, what's happening to me. My whole back starts hurting like crazy and my whole lower body went totally numb!
The next morning I went to my doc and he did a few tests but couldn't see anything obvious but suspected maybe something with my spinal cord. I was sent straight to ER. They did some tests but didn't conclude on anything, found nothing life threatening so sent me home with a possible sciatica.
Over the next few days my hands and lower face followed the same pain and numbness. I started having issues going to the toilet and being able to breath and swallow.
Then on the way to ER again, I had a "episode" of ??? Something I can't even describe. Like a panic attack but with the most extreme and agonizing electrical nerve pain and twitching you could imagine. I was screaming in pain and it felt like my hands and lower face were being electrocuted with 400V + of mains power for like 10 min straight, my partner pulled over and called the ambulance.
Straight to ER lol. It settled down by the time I got there but i was having very painful surges of electrical nerve pain every 5- 10 min in a 10 sec bursts and twitching included.
I could write for hours. I was in ER at least 5 times since 2021 to 2022 with all kinds of neurological extreme physical symptoms. Some included hallucinations and Parkinsons like symptoms.
I was tested for everything imaginable and everything came back perfect. What the issue was, is a delayed and extreme withdrawal from the drug that has causes long lasting at the cellular and probably genetic level of neurological alterations that led to very high drug dependency.
It's been over 2 years in recovery and re-instating the drug to re-taper to ludicrously low does to be able to get off it without dying. I finally got off the drug 4 months ago at 130th of the starting dose and still experienced extreme withdrawals which are persisting now but just manageable, I still struggle most days with burning nerve like pain and other symptoms.
I am still trying to get off the first drug in this cocktail with great difficulty. I believe it is the primary cause of the pain and tingling amongst others and is very hard to taper, a slight % in change can give me seizure activity in my brain.
I am not afraid to talk about this, I think everyone should be made aware on how damaging and toxic antidepressants and other classes of psych drugs can and often are. So many people have died or been made disabled from these drugs. It often can be worse than heroin or other street drugs, yet docs hand them out like candy.
well done!