Hello,
I'm 49 and have been suffering from depression for decades. I was able to go a long time without antidepressants, but in the summer of '21, I realized that I could no longer do without them, so I was prescribed some. With time, I stabilized and was able to stop them last October. During this period, I've had increasing problems with fatigue, concentration, and, for several months now, memory problems, certainly due to my sleep apnea, which was diagnosed in May 2010. I forget words in sentences or letters in words, and a few years ago I changed letters in words. I could also point out that I've been suffering from POIS for over 30 years, diagnosed at the time in 2019 at Tenon. This had led me to undergo various tests with a neurologist last summer, including a brain MRI, until the lumbar puncture at the end of October. I had my appointment on 06/02 for the diagnosis; there is a very strong suspicion of prodromal Lewy body disease. As I'm totally overwhelmed and can't get my head around it, finding anything and everything on the Internet, I wanted to find out more about the subject in this group. I can't imagine losing control of my life one day; I don't feel that bad, and I'm not old enough yet to be punished like that by life. What's next for you? Are there any tips, support groups, or discussions on how to deal with this situation? What I'd still like to say is that I'm not hallucinating, I'm not walking safely, and I'm not falling either, but how can I find out and be sure there's no mistake? It seems that there are no clear tests or that the disease is very difficult to diagnose, isn't it? There are a lot of unanswered questions at the moment, and I'd be very happy if someone contacted me with similar issues or symptoms in themselves or someone close to them. Thank you in advance for your patience in reading my text. I hope to have piqued their interest.
Merci beaucoup et bonne journee.
PY
Hello everyone,
I wanted to get in touch with you briefly after 35 years of struggle.
Year after year, no matter what products, doctors, vitamins, tests, diagnosis, etc etc I have done, I have steadily got worse. I can now report something positive tonight.
After I was diagnosed with Lewy body dementia in prodromal form as a possible additional disease at the beginning of February in Strasbourg by a very renowned professor in France, in addition to sleep apnoea, dysautonomia, various and long-standing depressions, I went down even further. After this diagnosis, I thought I would die in the summer of 2024. I dragged myself to work for the first few weeks until I couldn't do anything after Easter. I was so devastated, I couldn't sleep properly but I wasn't able to do anything at all for the first 4 months. I was completely robbed of my zest for life and my POIS symptoms, which had been chronic for several years, were only exacerbated.
In the beginning, I resisted the possible diagnosis and didn't want to take anything other than escitalopram antidepressants and bilastin antihistamines. Why should I? Nothing ever really helped and now this darn dementia in the preliminary stages.
It remains to be seen whether this decision was a chance one, but the first positive results have been noticeable for 2 to 3 weeks now. What had happened: out of sheer fear of dying and despair, I had started taking donepezil 5mg in mid-April, which I had been given immediately after the diagnosis at the beginning of February, without really believing that it could help me. As the months went by and I felt no improvement, I continued to look for solutions to POIS because it had been with me virtually all my life, I came across xolair in the POIS forum in the USA. To keep it short in the first step, I was unfortunately refused the prescription this week, I have to go to a pneumologist in the hospital environment because the drug is very special, expensive and therefore not covered by health insurance. An appointment will follow on 10 October in Saverne, further information on this part will follow in October at the earliest, as the 75 mg injections are administered 6 to 8 weeks apart.
In the meantime, since the end of August, I can report an almost unbelievable development in my condition. My life now makes sense again, I am able to talk, think, memorise and pronounce several words or sentences.
Now, what is it? My guess, which I will find out from the professeur in Strasbourg on 15 October, is the donepezil 5mg. I have been taking it for almost 5 months now, my condition has improved so much that I can no longer remember such a cognitive performance, thinking and speaking ability. I can now speak fluently again, write long, extensive texts again, and the great thing is that my courage to face life is almost completely back.
I am once again planning topics/projects that I no longer thought possible, have been working again since the beginning of the week, 2 hours a day, but could already be doing much more.
I'm still a bit tired from time to time during the day but not at all, so really no comparison to the last few years and especially months since the beginning of the year.
I'm not saying that I've finally beaten POIS, nor that I don't have or won't have dementia, but the signs are pointing to a great personal feeling, coupled with an increased, not completely back, but already at a very good level of self-confidence, which leads me to be able/want to inform you.
I will of course stay on the ball, the dates in October will be very exciting and hopefully the good results will be underpinned by successful tests, I will be happy to keep you informed and up to date via this platform.
If you have any questions, please feel free to contact me, write something here or contact me directly via PM.
Thank you very much for your time, patience and mutual support. My credo for more than 35 years... 😊
PY
