Hello, just introducing myself..

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Steven Conroy

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I was 22 years old when my seizures started. It was 1984 and at that time I had been in the U.S. Navy for a little over 3 years and stationed onboard the U.S.S. Kalamazoo. I didn't know what to think of the deja vu experiences I was having. I soon started to smell a strange scent the closest I can describe it to would be citronella. One night while sleeping in my rack I had a grand mal seizure. I went to sick call in the morning and told the ships doctor what everyone was telling me happened. The ships doctor was a real clown and laughed it off and said you didn't have a seizure and to go back to work.
The following night I woke up on the deck near my rack and the ships doctor was looking down at me. I asked him if he believed me now? He said I never said I didn't believe you. This was the beginning of the end of my Navy days.

I was sent to Bethesda Naval Hospital and underwent EEG, MRI, Spinal tap, Blood tests its been so long I've almost forgotten Bethesda Naval Hospital. Once they witnessed a tonic clonic that was it. I was discharged from the U.S. Navy and sent home to Massachusetts.

I've been seen by the Veterans Administration here in Massachusetts since 1984. I've tried the majority of FDA approved anti convulsants. Because I'm seen at the V.A. they only prescribe generic meds. They never could get my seizures under control using just meds.

In 1999 I was sent to the V.A. in Madison Wisconsin and doctors from the University of Wisconsin preformed a right temporal lobectomy. This surgery made a bad situation worse by only taking away my aura. The seizures remained at the same rate and intensity but I no longer had a warning.

in 2001 I was sent to the V.A. in Durham North Carolina and surgeons from Duke University preformed the 2nd temporal lobectomy. I've been seizure free since this surgery with the exception of the time we tried to wean gabapentin when I reached 2 years seizure free. I had a tonic clonic and we upped the dosage back to original dose and my seizures remain controlled as long as I remain on meds.

My status now is my seizures are under control. I still take a lot of medication but now it works.
 
Hi Steven welcome to CWE! Make yourself at home.

And a shout-out from a fellow Mass. resident.

Cheers,
Nakamova
 
hello Nakamova and thank you very much as well. I've lived in mass my entire life except for time spent in the military. I've bounced around from one V.A. to another and have been seen at 3 of the major V.A.s in mass since discharge. Brockton, W.Roxbury, and Jamaica Plain.
 
Hi Rich: Thank you for the welcome and warning. I no longer take keppra so I can take a little zing here and there without blowing up. ;-) I'm pretty easy going and can take some ribbing. I know what its like to say the wrong thing at the wrong time. I'd like to think I'd have understanding when or if someone did it to me. Once again thank you.
Steve
 
Hi Steven,
I want to thank you for serving our country! I always wanted to go into the service but the epilepsy stopped me so I got into ham radio and work M.A.R.S. (military amateur radio service) Just like you I have jamis vu seizures that lead into a absence or complex partial seizure. I also had a right temporal lobectomy which helped reduce my seizures. I found taking vitamin B12 a great big help reducing my seizures. I was also taking Neurontin at one time and that drug causes me to have status seizures. It was later that I saw on NBC Dateline where a employee of the company that makes Neurontin turned them in because the co. was doing off market labeling with the drug and they found out it was triggering seizures for many people who never had epilepsy. The last I had heard the co. had a class action lawsuit for over $200 million from many people. I wish you the best of luck and May God Bless You!

Sue
 
Porkette said:
Hi Steven,
I was also taking Neurontin at one time and that drug causes me to have status seizures. It was later that I saw on NBC Dateline where a employee of the company that makes Neurontin turned them in because the co. was doing off market labeling with the drug and they found out it was triggering seizures for many people who never had epilepsy. The last I had heard the co. had a class action lawsuit for over $200 million from many people. I wish you the best of luck and May God Bless You!

Sue
Click to expand...


http://nationalpainreport.com/neurontin-snake-oil-lawsuit-upheld-8822627.html
 
Hi Sue: Thank you very much for the warm welcome. I'd also like to thank you for volunteering as a MARS radio operator. I remember while in the Navy being in the middle of nowhere and they'd come on the 1mc "loud speaker" and say, For the information of all hands, The MARS station is now open with a patch through to New York" or wherever the MARS operator was from. I used this feature a couple times and it was nice being able to talk to my parents from the middle of nowhere.
It sounds as though our seizures were very much alike. The exception being that gabapentin helps to control my seizures. I have gone status a few times over the years and I wouldn't wish that upon anyone.
I'm curious do I know you from the epilepsy foundation website under a different name? Once again Sue thank you for the warm welcome.
Steve
 
Speaking of eCommunities!

Steven,
I think I remember you from eCommunities. You used the same name there didn't you? You will find out that there are several of us from eCommunities who are now members of this site.
Most of us have found this site to be very welcoming and friendly. There are many different forums for you to look at. Each of these forums have many threads in them that are about different subjects.
I also wanted to say WELCOME!:clap:

ACsHuman
 
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