Hello my friends!
Im new in this group and i suffer from debilitating symptomes. And im searching for advices and support.
My first symptomes started during my late pregnancy in year 2019. It started with sharp pain in my bladder and a feeling that a needed to pee but i could not pee. I also had a very intense pressure towards my chest, it felt like i had lactic acid in that region. When i laid on my back or sat down i felt like i was going to pass out.
I also had an accident with my lower back in a chair at the gynecologist, because the footrest/leg support on the chair broke so that my back turned like a U backwards very quickly. On top of everything i got constipated several times throughout the pregnancy.
One time it was a very very bad constipation that needed treatment with an enema in the emergency room.
My symptomes with the bladder got worse with the C-cection and the spinal tap/spinal anesthesia. The maternity clinic/womans clinic send me home within only 2 days after my C-section even though i still was in pain and had numbness on sertain areas of my lower body. I went numb in the cauda equina region and i could not feel my bladder filling with urine. I had to set the alarm clock to know when i needed to get to the bathroom. I also got numbness in my genital area, i also could not feel when having my period. Previous to this i always had great pain with my periods, so it definitely was a big differens.
I also had trouble with number 2, bowels problems. I needed a medication to be able to empty my bowels and when i stopped the medication i had no muscle power and i could not feel that I needed to go.
As i could not get help or answeres anywhere for my somatic problemes i got depressed and cried very much. I went to the psyciatric clinic 3 times in a row asking for help, and the third time they locked me in and would not let me out. They gave me antidepressants and forced me to undergo 4 treatments of ECT (electroconvulsive therapy).
After going through these treatments i got very bad pain in my jaw and i could bearly open it or close it. I also felt like i was in another reality and my “recent memory” dissapeard. I didnt know where i was. Of course these treatments did not help me as i had psysical, somatic problems.
My bladder started to feel wierd, as the numbness slowly faded away and i could finally feel my bladder fill up again but i had sensory disorders. With time my bladder started to hurt again and also the urethera. It felt like fire and acid being poured into my bladder while it filled up with urine, just like it did during my late pregnancy. So i thought it was urine infection but all tests where negative and the cystoscopy did not show anything wrong. I got botox in my bladder but it made the pain worse
Different doctors gave me a lot of medications to camouflage my pain but nothing really worked. I was given 21 different kinds of meds, it was anticonvulsants, antidepressive, lyrica, amitriptylin, tegretol, benzos, opiates, morphine in tablets and in vein, mexitiline, lidocain in vain that numbed my toung for a few seconds, ketamine in vain and some other medications. I did not get any help from the somatic health care,
My nerve symptomes went away in spring 2021, just a few weeks later i suddenly got slight tinnitus after a party with loud music. And i also got hyperacusis (sensitivity to sounds) the tinnitus got worse and i got pain around my ears and some numbness. The pain kept getting worse and then the pain radiated to the back /bottom of my toung, on right side.it felt like someone put a screwdriver in the back of my toung. Right side. Then i had burning pain in my head, it felt like my brain was on fire. After some time i started to get burning pain in my mouth and my tinnitus kept getting worse. Then i have had som better periods with the pain, and when pain was better on almost non existent,the tinnitus stayed almost the same level and somtimes lowered a bit. With covid my symptomes got much worse, i was on a dose of steroids at the time and my whole face and hands swelled up like a balloon and i got was red in face and hands.
After this my pain got worse again, also the tinnitus. I was in great pain for a long time but then the pain started to fade a bit and last time i was pain free was a couple of weeks or more this spring, 2023. Then i got worse again and got an infektion i was coughing a lot and got fever. With the infektion i got much worse symptomes, worse tinnitus and worse.
My symptomes gets triggered by talking and whispering, swallowing and from my jaw i belive. I have great issues with my jaw, its popping very badly. And i belive its out of position. Ive been talking a lot lately because i was forced to in meetings and by phone. This has made my pain and tinnitus CATASTROPHIC.
A couple of months ago, in october 2023 i started to get pain in my neck and base of the scull, and side of my head, around my right eye and in my nose worse on right side. Its absolutely debilitating. Its the worst pain ive ever felt. Im suffering so bad!
I recently got a CT scan without contrast and i could measure styolids to 3,6 and 3,4 cm. Bilateral. They also looked pretty thick. I could also see an enlonged bone called hamulus.
Im desperate for relief NOW. Its extremely urgent as im suffering so bad. Im bound to my bed and shaking from pain.
I will book a zoom call with a doctor in another country very soon, i also send him some pictures.
Can someone please help me???