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#1 zuzus7petals

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Posted 23 December 2010 - 11:37 AM

Hello,

I don't see a support group in Dallas, TX.

I have narcolepsy and epilepsy. I have not been unable to find a neurologist that takes both disorders. In the past several months, I have started having my Narcolepsy symptoms return in full force. I haven't had another cataplexy attack, but have had the hypnogogic hallucinations. The last MSLT was in 2005. This showed I fell into REM 4 out 5 times within 15 minutes of the 20 minute period. My onslaught of Narcolepsy was a cataplexy event where I was driving at 70 mph, drove the length a football field, graced the median while breaking my side mirror off which woke me (even though I thought I was awake driving). I had no reflexes. Even on Provigil, I have had events which after reading your article "What is Narcolepsy" has proven that I am still being plagued with blackouts and EDS.

I have sleep apnea, asthma, which was diagnosed prior to the cataplexy event.

I was 58 in December 2009 when I had back to back seizures. The neurologist that took care of me only had the EMT's evaluation. Knowing that I have Narcolepsy, he asked that I be tested in March 2009 to verify whether or not I truly have Epilepsy. It took 4 days of testing, but through the photo testing it was proven that I have Epilepsy also. My entire brain lit up which has given them a new case study. I have not been well since December 2009. I was also diagnosed as being bi-polar stage 2. My psychiatrist took me off Provigil in July 2010. I have since quit the medicine from the psychiatrist. Stress has been a major factor, but not all. I also lost 2 inches in height from Dec 2009 to April 2009;

I have just been able to be around people again, but I am afraid to apply for employment. I cannnot trust my mind to stay alert. What can I do, and do you have a list of doctors that do both neurological disorders?

Thanks,
zuzus7petals

#2 Jackie

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Posted 26 December 2010 - 01:08 PM

Hello,

I don't see a support group in Dallas, TX.

I have narcolepsy and epilepsy. I have not been unable to find a neurologist that takes both disorders. In the past several months, I have started having my Narcolepsy symptoms return in full force. I haven't had another cataplexy attack, but have had the hypnogogic hallucinations. The last MSLT was in 2005. This showed I fell into REM 4 out 5 times within 15 minutes of the 20 minute period. My onslaught of Narcolepsy was a cataplexy event where I was driving at 70 mph, drove the length a football field, graced the median while breaking my side mirror off which woke me (even though I thought I was awake driving). I had no reflexes. Even on Provigil, I have had events which after reading your article "What is Narcolepsy" has proven that I am still being plagued with blackouts and EDS.

I have sleep apnea, asthma, which was diagnosed prior to the cataplexy event.

I was 58 in December 2009 when I had back to back seizures. The neurologist that took care of me only had the EMT's evaluation. Knowing that I have Narcolepsy, he asked that I be tested in March 2009 to verify whether or not I truly have Epilepsy. It took 4 days of testing, but through the photo testing it was proven that I have Epilepsy also. My entire brain lit up which has given them a new case study. I have not been well since December 2009. I was also diagnosed as being bi-polar stage 2. My psychiatrist took me off Provigil in July 2010. I have since quit the medicine from the psychiatrist. Stress has been a major factor, but not all. I also lost 2 inches in height from Dec 2009 to April 2009;

I have just been able to be around people again, but I am afraid to apply for employment. I cannnot trust my mind to stay alert. What can I do, and do you have a list of doctors that do both neurological disorders?

Thanks,
zuzus7petals



#3 Jackie

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Posted 26 December 2010 - 01:42 PM

Please know that you are not alone.
I hope you had a very Merry Christmas.
I too have narcolepsy and was diagnosed over 10 years ago. I've had a history of absence seizures as well and I'm bipolar and have sleep apnea. For years I took Depakote for my absence seizers. I had two grand mal seizures as a teenager and never had them again. I was eventually taken off Depakote since my EEG's no longer showed any seizure activity. I didn't know that going off the Depakote would throw me into a manic tailspin since I hadn't been diagnosed as bipolar yet. I lost jobs because I couldn't stay awake to get there on time and once I was at work my performance suffered as a result of my narcolepsy symptoms. It's a long complicated story but I was finally diagnosed as bipolar about 5 years ago. I am happily controlled under medication. I tried Xyrem for a while and it controlled my cataplexy. It's weird but I haven't had an instance of cataplexy since even though I no longer take it. I tried Provigil and it didn't work for me. I tried Adderall and I made my heart beat too fast and finally my psychiatrist put me on Ritalin and I've been happy ever since. I don't know a neurologist that I could recommend to you. When I was first diagnosed I was seeing a sleep specialist in De Soto and didn't like him at all. My psychiatrist is great, his name is Dr. Minirth and he's in Richardson. I'm very happy with him and he's treating my narcolepsy as well with the Ritalin . I live in Dallas near Northpark Mall. I don't drive but maybe we could meet sometime, my husband could take me to meet you sometime. Where in Dallas do you live? Have you been to a NN seminar yet? I went about 6 years ago and haven't been able to go since. It was great knowing that I'm not the first person with these problems and symptoms. I hope you can go if you haven't yet.
I hope you reply to this mssg. It's good to know that we're not alone. I hope you have a blessed new year!
Jackie

#4 zuzus7petals

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Posted 27 December 2010 - 03:46 PM

Please know that you are not alone.
I hope you had a very Merry Christmas.
I too have narcolepsy and was diagnosed over 10 years ago. I've had a history of absence seizures as well and I'm bipolar and have sleep apnea. For years I took Depakote for my absence seizers. I had two grand mal seizures as a teenager and never had them again. I was eventually taken off Depakote since my EEG's no longer showed any seizure activity. I didn't know that going off the Depakote would throw me into a manic tailspin since I hadn't been diagnosed as bipolar yet. I lost jobs because I couldn't stay awake to get there on time and once I was at work my performance suffered as a result of my narcolepsy symptoms. It's a long complicated story but I was finally diagnosed as bipolar about 5 years ago. I am happily controlled under medication. I tried Xyrem for a while and it controlled my cataplexy. It's weird but I haven't had an instance of cataplexy since even though I no longer take it. I tried Provigil and it didn't work for me. I tried Adderall and I made my heart beat too fast and finally my psychiatrist put me on Ritalin and I've been happy ever since. I don't know a neurologist that I could recommend to you. When I was first diagnosed I was seeing a sleep specialist in De Soto and didn't like him at all. My psychiatrist is great, his name is Dr. Minirth and he's in Richardson. I'm very happy with him and he's treating my narcolepsy as well with the Ritalin . I live in Dallas near Northpark Mall. I don't drive but maybe we could meet sometime, my husband could take me to meet you sometime. Where in Dallas do you live? Have you been to a NN seminar yet? I went about 6 years ago and haven't been able to go since. It was great knowing that I'm not the first person with these problems and symptoms. I hope you can go if you haven't yet.
I hope you reply to this mssg. It's good to know that we're not alone. I hope you have a blessed new year!
Jackie



#5 zuzus7petals

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Posted 27 December 2010 - 03:59 PM

Jackie,

It is wonderful to know that I am not alone in this battle. Yes, I did have a wonderful Christmas, and pray that you did too.

I live in Oak Cliff now, but I am from Garland and worked in Addison. I am afraid to go back to work as my brain doesn't seem to want to comply. I believe that I will have to have another EEG and MSLT done to show Social Security that I am unable to work. I had episodes on Provigil. I let my Narcolepsy doctor know, but he didn't do anything different. With my new doctor, I am trying to get on the correct medication combo for the Narcolepsy and Epilepsy episodes. Do you think it would be better to go through a psychiatrist?

I am not taking anything for my Narcolepsy or Bi-polar condition. I am taking Keppra XR for Epilepsy.

My number is 214-467-0506

I would love to talk with you and possibly meet you.

zuzus7petals (Karen)

#6 zuzus7petals

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Posted 02 January 2011 - 07:03 PM

Jackie,

It is wonderful to know that I am not alone in this battle. Yes, I did have a wonderful Christmas, and pray that you did too.

I live in Oak Cliff now, but I am from Garland and worked in Addison. I am afraid to go back to work as my brain doesn't seem to want to comply. I believe that I will have to have another EEG and MSLT done to show Social Security that I am unable to work. I had episodes on Provigil. I let my Narcolepsy doctor know, but he didn't do anything different. With my new doctor, I am trying to get on the correct medication combo for the Narcolepsy and Epilepsy episodes. Do you think it would be better to go through a psychiatrist?

I am not taking anything for my Narcolepsy or Bi-polar condition. I am taking Keppra XR for Epilepsy.

My number is 214-467-0506

I would love to talk with you and possibly meet you.

zuzus7petals (Karen)


I lost your phone call. Please try me again. I didn't get your phone number.

Thanks

#7 sleepless sleeper

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Posted 02 January 2011 - 07:12 PM

are y'all sure that you have bipolar? many pwn get misdx'd with bipolar. i am not saying that a pwn cannot have it, but it is not uncommon for a lot of us to get that misdx.

i recently learned that epilepsy episodes can also be brought on by stress. or at least that is what someone told me. is that right? if so, if you have epilepsy and cataplexy, have you learned to control them at all? i have learned to reduce my cataplexy attacks. can u do that with epilepsy is what i'm getting at.

#8 zuzus7petals

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Posted 04 January 2011 - 11:03 PM

Sleepless,

I quit going to my psychiatrist because the medicines were making me not sleep at all, and she took me off my Narcolepsy medicine. Since I was under an extreme amount of stress, doctors haven't been able to diagnosis whether or not it caused the Epilepsy to show up. All I can say is that the Narcolepsy medicine wasn't working anymore. Two stages of Narcolepsy were becoming prevalent in my every day life. Since my entire brain lights up with an Epilepsy seizure, I feel I am standing alone. My doctors state that having both neurological disorders is very rare.

My stressors have changed, but are not completely gone. I haven't had any more cataplexy events since Oct '09. I am trying to find a doctor that can treat narcolepsy and epilepsy. As far as being bi-polar, it is hard to admit that my rage could possibly be from that diagnosis, but I control it (always have). I just seem to be getting more out-of-control the older I become.

I am no expert. All I can give you is what I am experiencing.

Be Blessed!

zuzus7petals

#9 Clare

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Posted 17 November 2012 - 02:14 PM

Hello,

I don't see a support group in Dallas, TX.

I have narcolepsy and epilepsy. I have not been unable to find a neurologist that takes both disorders. In the past several months, I have started having my Narcolepsy symptoms return in full force. I haven't had another cataplexy attack, but have had the hypnogogic hallucinations. The last MSLT was in 2005. This showed I fell into REM 4 out 5 times within 15 minutes of the 20 minute period. My onslaught of Narcolepsy was a cataplexy event where I was driving at 70 mph, drove the length a football field, graced the median while breaking my side mirror off which woke me (even though I thought I was awake driving). I had no reflexes. Even on Provigil, I have had events which after reading your article "What is Narcolepsy" has proven that I am still being plagued with blackouts and EDS.

I have sleep apnea, asthma, which was diagnosed prior to the cataplexy event.

I was 58 in December 2009 when I had back to back seizures. The neurologist that took care of me only had the EMT's evaluation. Knowing that I have Narcolepsy, he asked that I be tested in March 2009 to verify whether or not I truly have Epilepsy. It took 4 days of testing, but through the photo testing it was proven that I have Epilepsy also. My entire brain lit up which has given them a new case study. I have not been well since December 2009. I was also diagnosed as being bi-polar stage 2. My psychiatrist took me off Provigil in July 2010. I have since quit the medicine from the psychiatrist. Stress has been a major factor, but not all. I also lost 2 inches in height from Dec 2009 to April 2009;

I have just been able to be around people again, but I am afraid to apply for employment. I cannnot trust my mind to stay alert. What can I do, and do you have a list of doctors that do both neurological disorders?

Thanks,
zuzus7petals


Hi! I am trying to start a DFW support group for Narcolepsy. If you are still interested please send me your email and I can send you information. In reply to your request of a doctor that treats both, I do not know of one but maybe this support group can help.