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Old 02-07-2013, 05:32 PM #1
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Brain patch Brain patch is offline
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Brain patch Brain patch is offline
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I don't know how to work this too well yet so bear with me. I hope this reply shows up. Thank you so much for all the encouragement. I suffered from migraines and hypoglycemia since I was about 17. I have had the REM sleep disorder since I was very young but we did not know that was a problem until my dad was dx with Parkinson's with dementia poss shy-dragers. I passed out many times and hit my head straight back on concrete. Dr. Said due to hypoglycemia. I still pass out at times. I was hit on the freeway from behind in 2006. I was knocked out. Since that time I started having trouble dressing myself, was getting lost trying to get home from work, had slurred speech at times, was not remembering names/faces, forgot how to cook, was not acting appropriately etc. I started on a new med called nerontin and it made me much worse. I could not remember if I took my pills. I have had chronic pain since the MVA in my neck, back, head and down my left leg. I could not remember if I paid car payment, bills etc. i was taking extra strength excederin and lortab all day for pain so I could work. I accidentally overdosed because I could not remember if I took them, kept waking in night in pain thinking it had been hours and taking more. I ended up in hospital with liver and kidney failure. I still have problems from both. This happened in 2009. I have been seeing a pain specialist every 30 to 60 days since that time. He put me on ms contin, phenergan and ambian. I applied for disability in 2009 because I am was bed ridden and still am some days. The other days are minimal functioning. More like couch ridden with a short walk outside or short trip to library etc. My pain Dr. supported my claim. Disability says I have not seen enough doctors or specialists and threw out my dr opinion completely. Accused me of drug seeking. I was able to get into my dads neurologist because I had the same REM sleep disorder and this is considered a precursor to Parkinson's. The neurologist says I don't have enough signs of Parkinson's for the study but diagnosed me with post concussive syndrome manifested by cognitive impairment, chronic pain/fatigue, REM sleep behavior disorder, nocturnal frontal lobe epilepsy, chronic migraine and episodes of syncope. The neurologist said a neuropsychological testing would be helpful to document disability. I am applying for Ssdi and ssi. I am trying to figure out how I can do that. I have a hard time figuring out how to get myself help. Disability says I also show a lack of willingness to try different treatments. That is true because I cannot take muscle relaxers or anti-depressants as it aggravates these sleeping disorders. I took soma and woke up in the psych ward. I took nerontin and woke up in intensive care trauma unit for liver and kidney failure so yeah, I am hesitant to take any medicine that I do not know helps and I can tolerate. Unfortunately, those meds happen to be benzodiazepines and narcotic pain medication. So I am a drug addict in the eyes of social security. I was recently put on clonazepam for the sleep problem. Neurologist says this is only med that helps for that and they need to control it as it is brain damaging me ever time it happens. Not to mention seizures hurt. I think that about covers it. If anyone wants to know anything else or has any words of wisdom or just comfort I am in need. I am a fairly young lady. I am so alone all the time. I have family but they are just beginning to understand about illness with my dad having Parkinson's with dementia. I help with his care more than anyone really cause I understand what it is like to loose memory and cognitive abilities. I have to stop them from yelling at him because they get so frustrated. I had nobody to stop others from treating me bad. Shame on people who see others struggling and act so mean. I am proud to say I never mistreated anyone with illness. I worked for BlueCross and helped many. Thanks again for making me feel welcome and comfortable enough to talk. Sometimes it just means so much if somebody brings you a glass of water. Anyone know what I mean? Love to you all.
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(Broken Wings) (02-10-2013), loretta (02-07-2013)
Old 02-07-2013, 07:30 PM #2
loretta loretta is offline
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loretta loretta is offline
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Originally Posted by Brain patch View Post
I don't know how to work this too well yet so bear with me. I hope this reply shows up. Thank you so much for all the encouragement. I suffered from migraines and hypoglycemia since I was about 17. I have had the REM sleep disorder since I was very young but we did not know that was a problem until my dad was dx with Parkinson's with dementia poss shy-dragers. I passed out many times and hit my head straight back on concrete. Dr. Said due to hypoglycemia. I still pass out at times. I was hit on the freeway from behind in 2006. I was knocked out. Since that time I started having trouble dressing myself, was getting lost trying to get home from work, had slurred speech at times, was not remembering names/faces, forgot how to cook, was not acting appropriately etc. I started on a new med called nerontin and it made me much worse. I could not remember if I took my pills. I have had chronic pain since the MVA in my neck, back, head and down my left leg. I could not remember if I paid car payment, bills etc. i was taking extra strength excederin and lortab all day for pain so I could work. I accidentally overdosed because I could not remember if I took them, kept waking in night in pain thinking it had been hours and taking more. I ended up in hospital with liver and kidney failure. I still have problems from both. This happened in 2009. I have been seeing a pain specialist every 30 to 60 days since that time. He put me on ms contin, phenergan and ambian. I applied for disability in 2009 because I am was bed ridden and still am some days. The other days are minimal functioning. More like couch ridden with a short walk outside or short trip to library etc. My pain Dr. supported my claim. Disability says I have not seen enough doctors or specialists and threw out my dr opinion completely. Accused me of drug seeking. I was able to get into my dads neurologist because I had the same REM sleep disorder and this is considered a precursor to Parkinson's. The neurologist says I don't have enough signs of Parkinson's for the study but diagnosed me with post concussive syndrome manifested by cognitive impairment, chronic pain/fatigue, REM sleep behavior disorder, nocturnal frontal lobe epilepsy, chronic migraine and episodes of syncope. The neurologist said a neuropsychological testing would be helpful to document disability. I am applying for Ssdi and ssi. I am trying to figure out how I can do that. I have a hard time figuring out how to get myself help. Disability says I also show a lack of willingness to try different treatments. That is true because I cannot take muscle relaxers or anti-depressants as it aggravates these sleeping disorders. I took soma and woke up in the psych ward. I took nerontin and woke up in intensive care trauma unit for liver and kidney failure so yeah, I am hesitant to take any medicine that I do not know helps and I can tolerate. Unfortunately, those meds happen to be benzodiazepines and narcotic pain medication. So I am a drug addict in the eyes of social security. I was recently put on clonazepam for the sleep problem. Neurologist says this is only med that helps for that and they need to control it as it is brain damaging me ever time it happens. Not to mention seizures hurt. I think that about covers it. If anyone wants to know anything else or has any words of wisdom or just comfort I am in need. I am a fairly young lady. I am so alone all the time. I have family but they are just beginning to understand about illness with my dad having Parkinson's with dementia. I help with his care more than anyone really cause I understand what it is like to loose memory and cognitive abilities. I have to stop them from yelling at him because they get so frustrated. I had nobody to stop others from treating me bad. Shame on people who see others struggling and act so mean. I am proud to say I never mistreated anyone with illness. I worked for BlueCross and helped many. Thanks again for making me feel welcome and comfortable enough to talk. Sometimes it just means so much if somebody brings you a glass of water. Anyone know what I mean? Love to you all.
Hi Brain Patch and Welcome! Thank you for sharing your 'medical history' and what brought you here to NT. I'm sure you will find so much support, comfort, and personal experience of others that will help you, as well as you sound like a truly compassionate person that has much to offers others.
Hang in there with the SS stuff. Sounds like this neurologist will be a good thing for your re applying. I don't have any experience with SS. (I'm waiting till May when I turn 65 and will get medicare.) I don't have any healthy insurance so 'hear' you when it comes to paying those medical bills.
Besides the new neurologist report for your new application, could you get reports of your hospitals stays from the neurotin and and soma reactions. that will show you trying different meds. Also, a letter stating you can't take the various meds that you react to.
I have always heard they go on documentation, and sounds like you need hospital records and more Doctor documentation. DO NOT GIVE UP
You are dealing with so much and deserve assistance that you have paid into.
Again, welcome. I just happened to see the post, am usually on the RSD forum-another site filled with wonderful compassionate people. loretta
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(Broken Wings) (02-10-2013), Brain patch (02-07-2013)
Old 02-08-2013, 02:57 AM #3
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Darlene Darlene is offline
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Darlene Darlene is offline
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Brain patch,

Sorry to hear about what you are having to deal with. As I said earlier in this forum there are a great number of fellow members and friends to help you. Listed below are some forums where you will receive some answers. Just click on the line for each one.

Traumatic Brain Injury and Post Concussion Syndrome:
http://neurotalk.psychcentral.com/forum92.html
Sleep Apnea & Sleep Disorders:
http://neurotalk.psychcentral.com/forum45.html
Epilepsy:
http://neurotalk.psychcentral.com/forum11.html
Headache:
http://neurotalk.psychcentral.com/forum32.html

May you you find some answers for your condition here. My thoughts and prayers are with you.
__________________

.

"Life without God is like an unsharpened pencil -- it has no point.
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Old 02-09-2013, 01:42 PM #4
Ironbutterfly Ironbutterfly is offline
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Quote:
Originally Posted by Brain patch View Post
I don't know how to work this too well yet so bear with me. I hope this reply shows up. Thank you so much for all the encouragement. I suffered from migraines and hypoglycemia since I was about 17. I have had the REM sleep disorder since I was very young but we did not know that was a problem until my dad was dx with Parkinson's with dementia poss shy-dragers. I passed out many times and hit my head straight back on concrete. Dr. Said due to hypoglycemia. I still pass out at times. I was hit on the freeway from behind in 2006. I was knocked out. Since that time I started having trouble dressing myself, was getting lost trying to get home from work, had slurred speech at times, was not remembering names/faces, forgot how to cook, was not acting appropriately etc. I started on a new med called nerontin and it made me much worse. I could not remember if I took my pills. I have had chronic pain since the MVA in my neck, back, head and down my left leg. I could not remember if I paid car payment, bills etc. i was taking extra strength excederin and lortab all day for pain so I could work. I accidentally overdosed because I could not remember if I took them, kept waking in night in pain thinking it had been hours and taking more. I ended up in hospital with liver and kidney failure. I still have problems from both. This happened in 2009. I have been seeing a pain specialist every 30 to 60 days since that time. He put me on ms contin, phenergan and ambian. I applied for disability in 2009 because I am was bed ridden and still am some days. The other days are minimal functioning. More like couch ridden with a short walk outside or short trip to library etc. My pain Dr. supported my claim. Disability says I have not seen enough doctors or specialists and threw out my dr opinion completely. Accused me of drug seeking. I was able to get into my dads neurologist because I had the same REM sleep disorder and this is considered a precursor to Parkinson's. The neurologist says I don't have enough signs of Parkinson's for the study but diagnosed me with post concussive syndrome manifested by cognitive impairment, chronic pain/fatigue, REM sleep behavior disorder, nocturnal frontal lobe epilepsy, chronic migraine and episodes of syncope. The neurologist said a neuropsychological testing would be helpful to document disability. I am applying for Ssdi and ssi. I am trying to figure out how I can do that. I have a hard time figuring out how to get myself help. Disability says I also show a lack of willingness to try different treatments. That is true because I cannot take muscle relaxers or anti-depressants as it aggravates these sleeping disorders. I took soma and woke up in the psych ward. I took nerontin and woke up in intensive care trauma unit for liver and kidney failure so yeah, I am hesitant to take any medicine that I do not know helps and I can tolerate. Unfortunately, those meds happen to be benzodiazepines and narcotic pain medication. So I am a drug addict in the eyes of social security. I was recently put on clonazepam for the sleep problem. Neurologist says this is only med that helps for that and they need to control it as it is brain damaging me ever time it happens. Not to mention seizures hurt. I think that about covers it. If anyone wants to know anything else or has any words of wisdom or just comfort I am in need. I am a fairly young lady. I am so alone all the time. I have family but they are just beginning to understand about illness with my dad having Parkinson's with dementia. I help with his care more than anyone really cause I understand what it is like to loose memory and cognitive abilities. I have to stop them from yelling at him because they get so frustrated. I had nobody to stop others from treating me bad. Shame on people who see others struggling and act so mean. I am proud to say I never mistreated anyone with illness. I worked for BlueCross and helped many. Thanks again for making me feel welcome and comfortable enough to talk. Sometimes it just means so much if somebody brings you a glass of water. Anyone know what I mean? Love to you all.
If you haven't applied yet- go to soc security office and they will help you fill out applications. Just be sure to have med records, names, address, tel numbers of dr's, medications, dosage, etc. Good luck to you.
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