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Old 09-19-2010, 11:49 AM   #1
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I feel like I'm dying and doctors don't care

Leaving me to write a full explanation of my problems here.. scan if you like, I'll correct any assumptions or missed information, I know there's way too much to read:

For some years now, my mental health has been getting worse and worse, I don't know much about health and doctors dont seem to care for my problem, but I fear the possibility of a frontal lobe brain tumour due to Ice Pick Headaches mostly in the left but occasionally the right frontal lobe too. (Please don't move the post, it's here for experts in this field of health to discern whether or not it is relevant as I am not qualified to decide that)
I also get strange pains a few inches behind and lower than there too that seem to last a little longer (4 years ago (at 18) I also had a couple of days where I kept getting random really strong pains in my brain there, physical pain nothing like a headache which lasted hours at a time and had me in agony), the right side of my neck being incredibly stiff, I keep finding myself not knowing what I'm doing or where I am for a few seconds, even for half a second sometimes I'll forget who I am and wonder what the hell all these man made objects around me are, and I've had a LOT of hard hits over the head, e.g. running full speed running into a monkey bar, being hit in the temple with knuckle dusters and forgetting where I live for an hour, having a full pint of pedigree slammed base first over the back of my head causing shell-shock and a wound that wont heal after 4 years, being smashed over the head with a skateboard so hard it put two of my teeth through my own lip and caused my GP to think I have a fractured skull in the top left of my left eye socket.

I had perfect grammar and spelling at the age of 10, but now am worse than average, constantly making mistakes and forgetting words.
At 10 had an IQ of 169, at 16 it was 130, right now its probably about 115, but some days below 80, and there is no doubt it's constantly changing yet averagely getting worse.
The scariest thing is my ability to make memories and interpret how I see things I'm making memories of: It seems my brain does these tasks incorrectly.
Many times, a group of people tell me something happened differently to how it was, or a word is suddenly spelt differently to how I remember it, or something was always a different colour to what I remember.
Conversations I have don't make sense sometimes.. like there are things that are obvious to me and un-debatable yet people still argue and look at me like there's something seriously wrong with me.
I believe I'm hearing one conversation while in reality am having another, speaking different words to what I think I am. I know every connection to the world is through my brain and I accept that it can be wrong. I do not believe my own eyes.
I have also even played with the thought that perhaps my brother has always been a figment of my imagination due to the way my parents act with us. Only a recent suspicion, but a lot of things make a lot more sense if that's reality.



I had a run in with what I thought was Schizophrenia when I was 16 from drinking a bottle of vodka nearly every day for a year.. I started to have blackouts (when drinking) and be told I'd done stuff that I wouldn't do. Not like "oh you got drunk and did that i cant believe you did it!", I'm certainly accustomed to those kind of wake ups, but I mean like I had an entire personality change, suddenly seemed sober when it happened, and did undeniably bad things to people I love for no reason and far out of the scope of the dodgy sense of humour Aspergers gives me. Like someone took over and was TRYING to screw my life up.

Had a few instances of this less and less frequently over the years since I realised I had to stop the vodka back then but drinking never really stopped until a few years ago. Beer was always fine, though mixing random drinks has caused it a few times. It's happened sober a few times too, and I've had some messed up thing happen twice a few years ago where I've woken up and scary things keep happening. I'm not actually scared of anything really, not like that.. these two occurrences of feeling absolute horror were far from normal. I have nightmares but I have never felt anything near even 1% of the intensity of those times. One morning after heavy drinking, the first time I woke I was hallucinating a spider hanging in front of my face as I woke up, couldn't move, then passed out a few seconds later. Woke up again maybe half an hour later but I was on my back, the walls were covered in spiders but I couldn't move. I realised I must be hallucinating, pretty obvious, but it was the knowledge that I couldn't move and more importantly that something was wrong with my head that was filling me full of horror, although the feeling seemed like it must have been magnified a hundred times too. The next time I woke up there were no hallucinations but my body rolled over out of my control and seemed to try to shout something but it just came out as a sharp breath and I couldn't understand it.. a minute later I began to regain control of my body.
Each time, I felt perfectly concious, was thinking clearly, and have a perfect memory of it.
I'm over this and it's never happened again.. it was about 3 years ago, although I had similar feelings of anxiety but nowhere near the magnitude in my sleep one time last year when a friend (who had lost a child) managed to convince me to take valium with him while drunk.

So ok, drug history, lets get over that. I've tried speed twice 3 years ago (but I have ADHD and took Ritalin from aged 9 to 12), as above, valium once, smoked weed (in resin form from aged 16 to 18), and drank a lot of booze for years, but have barely done so, maybe twice a month at most in the last year with random 2 month gaps after 5 months of a steady cut down.. compared to before 2 years ago (when I moved from the UK to Australia), I can say I don't even smoke or drink, so please don't throw me away like a junkie like Westmead Butchers just did. Keep in mind they also left me screaming in pain on the concrete floor for 15 minutes, and left me remove their needles and stuff myself when they kicked me out (well they had to clean up the blood). This hospital is under budgeted, understaffed, and notoriously cruel/unethical. It is, after all, situated next to Parramatta, so 70% of their patients are overdosing drug abusers, and I was treated like one as was a friend of mine with meningitis and my friend's 6 year old daughter (RIP) with a brain tumour who they disconnected from the machines while she was still recovering from surgery. Simply put, I don't trust them to get it right, especially when the other 30% of patients have been stabbed or shot.



I have taken over 200 punches to the face including some incredibly hard hits from steel poles, skateboards, knuckle dusters, and it was once feared I had a fractured skull.. (my mom sneaked off to the "toilet" before the results came back then the doctor came back at the same time looking like a ghost and told me im fine. That was 3 years ago. No doubt she'd keep such a secret from me if there was a problem).
I also had a habit of pressing my face to the microwave for 5 minutes a day from the ages of 15 to 19 while drunk.. before anyone told me the radiation can get through the case.

I've sometimes held my breath for long times.. around 8 I did for one minute. Years after I practiced and managed to for up to 3 minutes. At 12 I did for 6 minutes. Since then, maybe 30 to 40 times have done for around 5 minutes.

Recently have an ear infection and blockage, and had a "drug induced schizophrenia attack" according to the hospital, where I couldn't hear myself talking or even shouting while I could hear other sounds perfectly, my ability to communicate language kept escaping me (not my ability to understand it), my body locked up and I was on the floor of the emergency room screaming and kept having spasms feeling like I was being tazered non stop.
My high pain tolerance and inability to communicate properly having Aspergers plus my calmness in drastic situations caused them to not take me seriously and kick me out like a drug addict. I barely even smoke or drink any more though and have had many recent mental disturbances unrelated to my chosen state of mind.


My mentality for if it's relevant:
I have always been manically depressed since as long as I can remember. As a 5 year old I would cry in bed for hours literally praying for death. I've never really had any long lasting relationships, never kept any friends for more than a few years, only a few that were ever close, and my parents have always been overprotective of me but more in the way you would about a prised possession, maybe a pet, but far from the way you would be about someone you care for of have an ounce of respect for.
That said, everyone likes to treat me like a little kid for some reason, perhaps the stereotype of the under-bite (needing protection), being short, and having ADHD is what causes this behavioural reaction of others, however it greatly contributes to my stress and depression. I have never fit in due to my mental disabilities until the age of 16 where I found getting drunk and high every day helped greatly, although it cannot be factored down to that as I started getting money then. The anxiety and depression multiplied as I went through puberty. The social situation reversed when I moved to Australia and stopped getting money.

At 19 I learned about the connection between the concious and subconscious minds.. brainwashing, hypnotherapy, meditation, whatever you want to call it, it's a pretty simple thing when you know how, and very useful.
I used it to get over an undiagnosed eating disorder (I couldn't eat mixed foods without puking), also as an alarm clock (very exhausting), but more importantly to change my personality and interpretations of things, however I set myself unbreakable fail-safes every way I could for if anything went wrong.. (that's easier than it sounds if you don't think with words when you do it). Some of my fail-safes were such as to make myself revert to how I was before a change, and if necessary prevent me from remembering it aswel as stopping me from making that change again. Just an example, there was far more in depth thoughts and I don't remember it all, but I don't think it caused me any problems.. however when I do it I do feel sharp pains in my brain like old connections snapping and new ones being made. So perhaps physically it did.. I casually started to avoid doing this over the last year though.

I have used this technique to cure my depression, however am completely emotionless most of the time. However I have random spurts of anger and incredibly intense feelings of anxiety, regret, and self hate for the smallest of things that I randomly remember, and often it makes me shout out. This is why I fear the possibilities of TS and bi-polar. These events are becoming more and more frequent.
Oh yeah, and my memory is getting so bad it's not even funny. I don't know what I had for breakfast half the time, and after meeting anyone 6 or 7 times can barely remember them (though this may be due to once having an over-active social life and meeting too many people?)




Other problems I have are as follows:

Diagnosed: Aspergers, ADHD, mild Asthma, Tinnitus, Scoliosis, irrepairable but not dangerous slipped disk in lower back, heart murmur when I was born.

Suspected: OCD, Bi Polar, ruptured ear drums.

Possible:
Some form of Schizophrenia, Tourettes, and worried about the possibilities of major problems with my lungs, liver, and kidneys aswel as having the worsening symptoms of a frontal lobe brain tumour for over a year.

Sometimes the blood in my neck seems to clot, it becomes incredibly painful. Sometimes I've had to start running to get my blood going and felt it suddenly rush through. This has happened about 70-100 times in the last year for a guess.



The main reason I am posting this is due to the scare of an incident the other day, but also the massive build up of worsening symptoms, so please don't just say ah that's all it was even if it was, because regardless, it's far from the only problem.
Yes, I smoked weed. Two bongs. That's nothing, and blaming that is ridiculous. Someone (I'm not even sure they were a doctor) said it caused drug induced Schizophrenia and that I'm lucky I got out of it because it can be permanent. I'd accept that if I hadn't already tested my limits with weed long ago and actually smoked more than breadcrumbs now, but like I said, regardless, it doesn't cover even half of my symptoms, most of which could not be related to the drugs I've taken. (Believe me before you go saying "nah u did ilegal drug its that so go away", I know a lot of people who take much worse drugs than I do and 5 times what I do of the ones we share (alcohol, weed, and tobacco) and don't have these problems. I don't even take Asprin.. or anything with Codeine in it for that matter. I try to live as naturally as I can.)

Basically what happened is I suddenly couldn't hear myself talking.. like maybe a tiny bit, but it was inaudible for interpretation. Except.. I could hear everything else just fine (excluding causes of a current blockage in my right ear).
Several people confirmed for me that I was talking at a normal volume. I even tried shouting, screaming, couldn't hear it, but I could still hear my own footsteps as I ran around panicking, and everyone else could hear me. Then I started to feel dizzy and and like I was being electrocuted, stuff I was looking at stopped making sense sometimes, just knew I needed help. Something told me that was it, that I'd ignored the problems too long and now I'm about to die. I told my parents to take me to the hospital and its an emergency but they seemed to think getting changed and washing their hands were a priority over this.. I screamed at them non stop while they did these things "Get in the car! get in the car! Oh my god help me!! What the hell is wrong with you!? I'm ******* dying!!!" and they looked at me with blank looks like I'm some sort of idiot asking how to tie their shoe laces.. on the way they were ****** off at me for shouting at them while I was lying down on the back seat panting with a cold sweat. I know my parent's love me and knowing them as I do I think there's a high (but not definite) chance that this event did not occur as I remember it, but that's what I lived. When I got to the hospital, the electrocution was worse, it felt like someone had a fully charged taser held to my spine.
I was fully concious but was told my speech was slurry. Sometimes when I was talking no matter how hard I tried people couldn't understand it, however not being able to hear my own voice I didn't know how it sounded.. until today, in mid conversation it happened. My words and their letters were completely mixed up, I kept getting more frustrated by it and trying even more and it just made it worse.

Something similar happened before, the same feelings in my head, but nothing as extreme as mentioned above, and was after smoking weed in the morning (though not much) The blood at the back right of my left knee clotted like my neck always does, except I couldn't get it going again. I got pins and needles in my leg, my arms went weak, I felt like I was going to die then too, voiced my concerns to friends, they thought it was funny. I woke up with a headache after that. Speaking of waking up with headaches, that happened non stop for a month several months ago.

The only way I can think weed would have triggered anything like the pain and disorientation I felt the other day is that it makes my brain expand, which I think would possibly affect a tumour, but then drinking water does that too. (This also allows me to breathe through my ruptured ear drums, which I have been able to do for 5 years now. They do not heal, and I also have had Tinnitus as long).



At any one time talking to a doctor I haven't been able to list even half the symptoms I have by sitting down and writing it up for a few hours here. I expect I'll still be adding stuff to the list for a few days as I remember though.. anything relevant I can think of at-least.
On that note, my upper spine has a lot of pain sometimes.. an aching pain sometimes, others a sharp pain either side of it. Sometimes I have an incredibly sharp pain in either collarbone or scapula, like nerves being pinched. Also, I have a family history of disk problems. My uncle being the worst I know of, has an inwards growing disk in his neck that has crushed the nerves and limited movement of his whole body. I do sometimes find that when under stress cannot use the full potential of my strength or speed, like those dreams where you can't run except it's reality.


So basically, this document contains all health information I can possibly think to give about myself relevant to figure out what's wrong with my head.. I'm pretty sure it's a brain tumour but remember it could be multiple problems.. basically I'm really worried about whatever it is that's killing me. I don't know how long it will be before I'm incapable of communicating the problems.

And no, I can't just get an MRI.. I'm an immigrant on Medicare so I have to get a doctors refferal. I've been trying for a while now and did finally manage to get one from a neurosurgeon the other week but turned out he just wanted to confirm the slipped disk I already knew I had in my lower back and says not to worry about the rest.. however like I said, my memory as it is, when asked by a doctor I can never think of even half my symptoms, and also I he was more concerned about spinal problems.



Summary
Possible Causes:
Lots of physical head trauma (mostly prior to two years), microwave radiation, heavy alcohol/cannabis consumption prior to two years (now light consumption only), holding my breath for up to 5 minutes at a time, a lot of deliberate remapping of my neural network for several years (stopped last year), incredible amounts of stress and anger my whole life.

Symptoms:
Ice Pick headaches, over pains, electric shocks, disorentation, spasms, emotional outbursts, memory and language problems, stiff neck one side, uncertainty of what is real, forgetting to breathe, umm might have missed a few from above..


God, sorry for writing so damn much.. if anyone did take the time to read it then I am eternally grateful.
Any opinion is welcome and I will not be offended if you missed something, I know I wrote a lot and it's probably easier if I correct you than have you read every word I wrote. What do you think is wrong with me, and what should I do about it? I can't get an MRI, privately is more than I can afford on $80 a month and I'm worried I'll get locked up if I take this to the doctor.. the hospital threatened to. I don't wanna die alone like this.

Thank you so much,
Tony


P.S. How do I log in? I've made 3 accounts now, it auto logs me in from registry, but if I refresh I have to sign in again and the password says it's wrong no matter what, with the most simple password or even with a reset password and copy/pasting it from the email.

 
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Old 09-27-2010, 10:43 AM   #2
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sue46 HB User
Re: I feel like I'm dying and doctors don't care

Oh dear you sound like you have been having a real time of it I can't help you personally but I wish you well in your quest to find some peace of mind.

 
Old 09-27-2010, 12:01 PM   #3
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mylighthouse HB User
Re: I feel like I'm dying and doctors don't care

Hi Tony,
I read your story.
I really feel for you.
Some of the things that have happened to you, remind me of things that have gone on with my son, who is 19. He has been diagnosed schizophrenic, and I think it's a correct diagnosis. The thing is with him, he does not want help or meds or anything. He just continues to go through life miserable.

I'm just going to talk about him here for a second, I hope you don't mind. Maybe it's to help me "talk" about it. But please don't think I am ignoring your story.

He has had a few head injuries, from skateboarding, minor injuries. He was attacked and hit in the head with beer bottles and a crowbar about 2 years ago, they beat him on the head and face. Before the attack, he had already been to a mental hospital and diagnosed bipolar, so he was already having problems with depression, anger, mania, hearing voices, an eating disorder, and plus he abused drugs a lot.
I did not know this until recently, but he told me that he smoked pot almost everyday for 3 years. I don't know how that affected him, but I have heard that if you are schizophrenic, it can aggravate behavior.

As far as my son goes, he hasn't used drugs of any kind including alcohol for 6 months. But he continues to hear voices, have anger outbursts, lots of sleeping and mixed depressed/manic states.
I am really worried about him and want him to get help, but he doesn't want it.

You said you are afraid they will lock you up, I can see why you would be. But you also seem to want help. I certainly understand financial difficulties, I am in the same situation. I am bipolar and for years had no coverage for meds or doctor.
So, I guess you cannot get an MRI at this point. It sounds like an MRI would really be helpful, so at least you could see if there is a problem with your brain, whether due to past head trauma, a tumour, or other.

You have really been through a lot. You deserve to get some answers and to live a happy life. You mentioned you have medicare. Do you think that you could find a doctor/pyschiatrist and start there? I am not saying to tell him EVERYTHING. Just perhaps share what you are comfortable with that might actually be bipolar or schizophrenic related without going through ALL the details....those being the things that you think might lead to your being locked away. Because, through my experience, being bipolar, and at one point, they thought I was schizophrenic...I told my doctor some things that I WORRIED would make him lock me away. But he didn't. He listened to me and got me started on some meds. It took 5 years for the meds to help, we went through so many combinations....but that's another story...and I am doing good now.

I don't know if much of that made sense. I have trouble getting my thoughts together sometimes.

I hope you can get the help you want and need. Or at least, find some encouragement from other people here or from others.
I wish you the best!

Shelley

Last edited by mylighthouse; 09-27-2010 at 12:02 PM.

 
Old 10-20-2010, 03:38 AM   #4
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Qizmo HB User
Re: I feel like I'm dying and doctors don't care

Wow .... wow ... and i thought my life was * up ...
...
wow.............yeah.......wow...

Last edited by mentalhealth mod; 10-22-2010 at 06:54 PM.

 
Old 10-20-2010, 04:58 PM   #5
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Toonces1 HB UserToonces1 HB UserToonces1 HB UserToonces1 HB UserToonces1 HB User
Re: I feel like I'm dying and doctors don't care

Hi Tony,

I know you said you are afraid of getting "locked up," but honestly that might help you get the medical attention you need. I got the feeling from your post that you really want help, but you have to be willing to accept the help they want to give you. It feels threatening to hear them say they want to admit you to an inpatient psychiatric unit, but you will get the help of doctors and social workers there and it might really be what you need. It sounds from your message like you are experiencing a lot of distress. Make sure you communicate that to the person who is helping you. If you can get them to understand that you are having a lot of stress about these issues they might be more willing to help you. Keep trying. You should maybe write down these things in a shorter list to give to the doctor you see. That will help you if you forget to tell them some of the things you wrote here. good luck

 
Old 10-21-2010, 04:52 PM   #6
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Re: I feel like I'm dying and doctors don't care

Tony....doesn't sound like a frontal lobe tumor but you probably do have some kind of brain damage from the hits , the alcohol and the drugs...they all affect different areas of the brain.

Your Aussie, right? You have national health care. So follow the rule....find out what is physically wrong before you start treating what is mentally wrong. Try to see a "neuro-psychologist". They are psychologists who test your brain to find out what works right and what doesn't. That would be a good start. From there, you can see a neurologist to see what can be fixed in your brain and what can't. Having had brain damage myself and a stroke, you'd be surprised what can be fixed.

Once you have that assessment, then you can find a psychiatrist and get into some treatment for what is left. But you don't get into treatment first unless you go into the hospital and they do it all at once. Hospital psych wards are nice places(been in 28 times myself) and can help you(they rarely "lock" the doors), doing all that testing at once. Nothing more frustrating that trying to treat something that can't be treated. I remember the days when people with brain tumors frequently ended up in psych wards because they acted strangely and no tests could find anything. Now we have MRI's and CT and Pet scans that can find anything. Thank God! Your brain needs to be assessed. Bet you at the very least have post-concussion syndrome.

If you feel overwhelmed, then go to a hospital ER and let the process begin or ask your primary doc to get you into a neuro-psych for testing and then take it from there. The psychologist will be able to point you in the right direction for help.

You've treated your brain like a punching bag and since you've only got one brain, you better start treating it properly. Brave people get treatment. How brave are you?

Jenny

 
Old 10-25-2010, 01:54 PM   #7
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jcavanagh HB User
Re: I feel like I'm dying and doctors don't care

Tony, have you been able to log in yet? I would like to respond to your e-mail.

Last edited by jcavanagh; 10-25-2010 at 01:54 PM.

 
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