[Bobomb92]

Hi I am a 19 year old male who has suffered SO much for way to long. When i was around 13 all I remember was that I was having severe headaches to the point where it felt like i had a tumor in my head. I think more so with excersice. I wouldn't be able to see playing basketball and was acting retarded. I remember also fluid rushing around my head and maybe even draining out of my ears. I aslo comlained of my scalp being so tender i couldn't lay on my pillow.My thinking...changed to where my brain felt sedated and i felt like i didn't have any thought anymore and couldn't keep up or talk to my friends. I literally described it as i had to strain to think. Like there was pressure on my brain or something. My friends stopped hanging out with me and everyone thought i was retarded and on drugs. I had been a straight A student before. My mental state changed also. For some reason i couldn't feel any emotion. NONE at all. I would try and try to enjoy stuff and play videogames with friends but did not "react" to anything like i was a zombie. My eyes also got droopy and have been that way since. I also remember i couldn't keep my head up and was very weak and it felt like there was no fluid in my brain so i didn't like to exercise. The OCD and depersonalization strated to develop. My state of consciousness completey changed. I couldn't beliebve my friends were actually my friends and was so anxious and self aware. I couldn't remember anything i used to say to my friends or how i was before.

Something happened...i just don't remember, and then I wasn't the same anymore. I think i had at least two concussions around that time but shook them off. One was from a fight where i was punched in the head a couple times and the other from lacrosse. I was very active and played alot of sports. I was also very extroverted and kind of a prankster. I had a head injury when i was a kid at 6 years old where i hit the back of my head on the side of the pool when someone swinged me in. I had to get stitches but am unsure if i blacked out. My mom says she didn't notice anything different after. Also i did have a lot of tics when i was a kid. And had mono and strep throat at an early age.

Anyway I tried to get afresh start by going into freshman year in HS but only lasted 3 months as i couldn't take it. I don't remember but my OCD was so bad that it manifested where i couldn't be around my own sister. I could not touch what she touched. I couldn't be in the same room with her or breath the same air as her. If i touched anything she touched i would wash my hands immediately. I would put towels under the doors and couldn't ride in the same car as her. Also other Ocd things. I don't know if i actually believed or thought she was "killing my braincells" as i would say but i was so fixated on her and contamination and fear of stupidity. (probably because i felt stupid) So of course my parents took me to countless pyches where they diagnosed me wwith everyone in the book. Moslty with "Major Deppression" and prescribed countless drugs. I was an impatient at Johns hopkins for six months in the pych ward where they tried tons of meds and labeled me "treatment resistant." they thought the pain i was having was delusional as my Mri's and eeg's came back fine. At the end they did 22 ECT treatments on me and sent me home. One thing they did find though was that my blood pressure was crazy all over the place. I also gained a ton of weight in the hospital. They diagnsoed me with Postrual Orthastatic Tachychardia syndrome and sent me to a doctor. I think he was puzzled and i was monosymballic at the time and incoherable. I know that after the ect i really felt like i had brain damage. My anyxiety was SO high and over nothing. I was so depersonalized and couldn't read a sentence in a book without straining my head. And then couldn't remember it. I gave up then and just laid in bed like a zombie with weird pain and other pychsical symptoms.

Anyway to get to where i am now basically i went to the hospital two more times and put on more meds. I have been on almost every med in every class of drugs including clozaril. They thought my thinking disorder was mental and i was delusional to think the pills were gonna take it all away. The thing is we have gotten tons of pychsical tests too. I have gotten MRI's of the brain Ct scans. MRA/MRV of the brain. TCD which said i had McA stenosis but Mra ruled that out i guess? TONS of blood work. I even got an FDG PEt scan of the brain (which showed increase basil ganglion activity) AND a SPECT at the beggining (docotrs disregard this as quackery).

So 1 year ago after seeing my specialist for POtS, he recommended me to a Neurosurgeon after i got a neck MRI. The neurosurgeon found cranial instabililty, basilar invagination, and basic enchelopatholy. Basically my odontoid bone was pressing on my brainstem. He also got me diagnosed with Ehlor's danlos syndrome and did three surgeries on me. One for a tethered spinal cord, and after that procedure a spinal tap showed i had psuedotumor cerebri, so he put in a shunt in my lumbar region. Both didn't give relief. So i just got a major surgery where he Did an occipital decompression and a cranio-cervical fusion. It has been about a week since then and i am in a neck brace. All i want to find releif from is my THINKING. I can't remember a single evnt from my childhood. I can't talk to people cause there is nothing on my mind. I don't react to anything or feel emotion. I literally have to Strain to think like there is somnething constricing blood flow. I have no idea what to do i cannot live like this and it is a wonder that i didn't commit suicide furing all this. I KNOWthe only way i'm going to start thinking better is if they do something like take out the freaking back of my skull as thats where the pain is and thats where the constriction is.

What i ask of you is how could haved this come about? Why were the MRi's normal? IS there any hope of my brain recovering form 22 ECT's and tons of medication when i was an adolescent? Think outside the box please! Should i see a neuroscientist? Please give your insight it is obviosus it is neuorlogical or pyscholical and to say otherwise would insult me after all the pain i suffered and weird sensations.

symptoms now-Intense stabbing pain in the back of my head all times
-facial flushing/one side
-tinnitus ocassionally
-poor memory
-inability to "think"
-tender scalp
-very dry skin


There is more, ASK questions for more detail cause i worte this in one sitting!!! PLEASE SHED INSIGHT

[Mark in Idaho]

Have you ever had a Neuro-Psychological Assessment?

It can give you an idea of what skills you have and which are dysfunctional.

Your ECT and wide range meds history makes any decent understanding of your condition very difficult.

I would suggest getting started on a mega nutrition regimen. It sounds like the one thing that has not been tried. If you have any chance at brain healing, it will start with good nutrition. Do a search for nutrition or vitamins on this forum. Lots of posts already.

No caffeine or MSG or any processed soy products. They are neurotoxins.

My best to you.

[Bobomb92]

Originally Posted by Mark in Idaho

Have you ever had a Neuro-Psychological Assessment?

It can give you an idea of what skills you have and which are dysfunctional.

Your ECT and wide range meds history makes any decent understanding of your condition very difficult.

I would suggest getting started on a mega nutrition regimen. It sounds like the one thing that has not been tried. If you have any chance at brain healing, it will start with good nutrition. Do a search for nutrition or vitamins on this forum. Lots of posts already.

No caffeine or MSG or any processed soy products. They are neurotoxins.

My best to you.

Thank you for replying! My neurosurgeon wants me to read alot, start an instrument, and learn a new language. I am also trying to go on a gluten free diet. and possibly exercise at least 10 mins a day as my POTS allows it. In the past i had tried a holistic approach where i was on tons of supplements but it was a little sketchy and did not see improvement. Is that what you are talking about? I alrerady take fish oil and vitamin D/ coq10. I am slo going to try to get off my medicine. With the ehlors danlos, and POTS i still think there is something there...structually. ARE there ANY more tests i can do for my brain and neck region? Vascular/not? My neurosurgeon still highly suspects i have another vitamin deficieny or mitochondrial disorder going on. Has hypobaric chambers every helped? As i have always complained of "not getting enough blood and oxygen to my head"

Also i'm very curious as to how this started as i really don't rmeember. Could concussions put these things in motion if i already had a head injury ewhen i was six? Then maybe the ocd exacerbated and my mental state changed? They have actually related the POTS to the brainstem comppression. i wonder what made my thinkng "sedated" though...And the thoguht of all these meds affecting brain development with ECT on top pf that wheni could have had an injury is scary.

[Mark in Idaho]

What vitamins have you tried and in what doses? It takes a few months to start to see a difference with nutritional therapy.

Tons of supplements is awful vague.

Vit D, CoQ10, and fish oil are good but only a very small part of the nutrition equation.

Have you had a blood test for B-12 and folate?

How about hormone tests, Thyroid, testosterone, and all of the other hormones?

How about the Neuro-Psych Assessment?