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-   -   in a bad position regading ssdi (https://www.neurotalk.org/traumatic-brain-injury-and-post-concussion-syndrome/191631-bad-position-regading-ssdi.html)

anon1028 07-18-2013 01:58 PM

in a bad position regading ssdi
 
I am on ssdi for depression and that is coming up for review soon. my depression and anxiety is bad but the worst disability is waking up confused and taking a couple of hours in the morning to shake off some horrifying symptoms, then dealing with the other symptoms during the day.

I worked my whole life and now I cannot, but my mri of the head is negative so doctor says no brain problems. why would I make up such a nightmare? I took a vision test that showed nystagmus and suggested damage to brain stem and cerebellum, but it is not a completely accepted medical test yet. and here I am rotting away in my house feeling helpless and scared it is too much sometimes.

mrsmith 07-18-2013 02:24 PM

I have very limited medical knowledge in general but I know exactly what you are feeling. I used to play 5 or 6 hours of soccer every day in the summers and now I do nothing, I used to play hours of chess which I cannot do anymore, this all makes me feel depressed and anxious like you. What's worse is the doctors tell me I am simply a hypochondriac (spelling sorry), and there is nothing wrong with me. This makes me so mad I can't describe it, im very sorry for what you are going through, and I assure you things will improve.

anon1028 07-18-2013 02:49 PM

Quote:

Originally Posted by mrsmith (Post 1001032)
I have very limited medical knowledge in general but I know exactly what you are feeling. I used to play 5 or 6 hours of soccer every day in the summers and now I do nothing, I used to play hours of chess which I cannot do anymore, this all makes me feel depressed and anxious like you. What's worse is the doctors tell me I am simply a hypochondriac (spelling sorry), and there is nothing wrong with me. This makes me so mad I can't describe it, im very sorry for what you are going through, and I assure you things will improve.

it's comforting to know i'm not alone in this nightmare but I wish you weren't going through it. I didn't even know a human being could feel the things I feel and they are so scary. waking up to confusion and spasms and burning and nightmares is the worst part. just trying to take it day by day.

mrsmith 07-18-2013 05:07 PM

No one should have to endure a brain injury. Out of curiosity, do you have any recurrent aspect of your nightmares? I had similiar problems except in all my nightmares I would hit my head, then I would wake up shivering and freaking out.

Having a minimum of an hour of quiet rest (no electronics or cognitive work) and being in a comfortable position seemed to help me.

dagma1 07-18-2013 09:31 PM

Not everthing is going to show up on the mri's, I just feel Dr's should know this, ugh..

Depression is a nightmare, completely takes over your whole life, many people do not understand, "Just pick yourself up..." well, if someone could, they would! they need help and understanding.

This may help, I was waking up ever single night in such terror, shaking, a huge wave of panic went through my body, it also happened when I was nodding off...a friend of mine suggested Rescue Remedy, I put 5 drops in water in the evening and I swear I don't wake up in terror, a miracle...it just stopped, maybe it's a coincidence but it stopped the night I started taking the RR.

Yesterday, I saw my 2 PT's and an OT who said my eyes are "abnormal, more than we thought"....sat and cried right in front of her, I swear they feel as though they are bouncing around, I cannot stand it, severe headaches...ugh...I am uber emotional now, have to lie down in the dark for 2 hours because of these headaches....I told the OT something is terribly wrong..my brain....

I asked her..."Can I work out yet?"...No, "Can I start hiking up hill in rough terrain?"...nope..( I knew what that answer was going to be, but thought I'd try!!) I feel like a completely different person going day by day getting nothing done.

Having a very bad day, sorry to go on, this is about you, not me, I know I have to be positive but it's so tough, thank God for this forum, feel better...hugs to all..:grouphug:

anon1028 07-19-2013 12:33 AM

hug accepted and returned and don't ever Ever feel bad about going off on a tangent. you did it. I liked reading what you wrote. not that I want you to suffer but at least I know i'm not going through this nightmare alone. lost a high paying job, most all my friends, and family thinks i'm a junky or a psycho for going on about how terrible this horrible illness is!! I hate it and I wish they would find some kind of cure or better treatment. I appreciate all the comments and I will try some of the suggestions. we all have to hang in there with the help of each other because we matter. we are people just like everyone else except that we are sick and in need of help and comfort.

anon1028 07-19-2013 12:36 AM

Quote:

Originally Posted by mrsmith (Post 1001066)
No one should have to endure a brain injury. Out of curiosity, do you have any recurrent aspect of your nightmares? I had similiar problems except in all my nightmares I would hit my head, then I would wake up shivering and freaking out.

Having a minimum of an hour of quiet rest (no electronics or cognitive work) and being in a comfortable position seemed to help me.

I do have recurring themes, brutal arguments with family member whom I have had some past arguments with in real life. also, floods and tidal wave, very scary. i'm afraid to go to sleep because I know i'll wake up with muscle tremors, my body burning and from a terrible nightmare.

Mark in Idaho 07-19-2013 02:41 AM

mrsmith,

In your marathon days playing soccer, how many times a day on average do you think you headed the ball ?

It may be a contributing factor to your condition.

An electronystagmography (ENG) test should be well accepted.

markneil,

Any doctor who can use a negative MRI to say you have nothing wrong with your brain needs to surrender their medical license. They are ignorant of the science and anatomy of brain injury.

Can you get your doctor to prescribe a rental of a recording Pulse Ox meter ? It may shed some light on your nightmares. The slow mornings suggest a lack of oxygen during the night.

mrsmith 07-19-2013 12:49 PM

Sometimes none, sometimes a ton. I actually had a pretty hefty scholarship, and I loved the sport, though my hatred of my condition is greater than that love, I will never head a soccer ball again.

I really think it could be, I never really had concussion like symptoms, but over all those years that is really a lot of small impacts. I didnt know any better though, especially when I was younger.

Does anyone else get dizzy when they pick something up too quick? I usually try to bend down with my knees slowly and pick whatever up, but sometimes I forget about my condition and pick it up by bending my back pretty quick, and when I come back up I can't even move for a few seconds because I am so dizzy.

Mark in Idaho 07-19-2013 06:34 PM

Research shows that the average soccer player who routinely heads the ball has a 9 point lower IQ than those who do not head the ball. The key issue here is Sub-Concussive Impacts. They accumulate to equal more damage than a single serious concussion. The problem is there is no time out taken. Head the ball then run to follow the play.

I say this to bring up the point that you may also be suffering from Multiple Impact Syndrome. It is very common with football (the brown long one not the round one) and hockey players.

My point is for you to try to accept your current state and learn the many work-arounds and accommodation that can help you lead a full and almost normal life. As you do this, you stress levels due to frustration will lower and you may find yourself improving greatly.

My best to you.

Hopeless 07-19-2013 06:57 PM

The Unseen
 
Quote:

Originally Posted by markneil1212 (Post 1001025)
I am on ssdi for depression and that is coming up for review soon. my depression and anxiety is bad but the worst disability is waking up confused and taking a couple of hours in the morning to shake off some horrifying symptoms, then dealing with the other symptoms during the day.

I worked my whole life and now I cannot, but my mri of the head is negative so doctor says no brain problems. why would I make up such a nightmare? I took a vision test that showed nystagmus and suggested damage to brain stem and cerebellum, but it is not a completely accepted medical test yet. and here I am rotting away in my house feeling helpless and scared it is too much sometimes.

I do not have any info regarding brain injury but I can understand the feelings when people doubt your incapacities when it is not something they can see, including doctors. If you have a broken leg, the doctor sees it on an x-ray and friends and family see you in a cast, but have something that does not show up on some medical test, and no one understands what they do not see. It is VERY depressing to suffer not only the condition we are afflicted with but the disbelief by others.

Seems you have had some great responses. Hope you find some relief.


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