Official Epilepsy Diagnosis

[SassySarah]

Well I was officially diagnosed with epilepsy today. Began symptoms of an undiagnosed seizure disorder exactly one year ago today. I spent six weeks in the hospital and left with we have no idea so it must be psychosomatic. I have gotten more opinions than i can count- both psychological and physical. Today its finally been said. Until this began my biggest medical fear was seizures - now I feel like and old pro.

I feel like bursting into tears scared to death, and jumping for joy for an answer- somehow all at once. Two tc seizures and two ativan injections has me also confused and high as a kite.

He added 500 mg keppro xp 2x a day for a week then up to 1000mg keppro xp 2x a day in addition to 400 mg tegretol 2x a day along with klonoping and robaxin.

In addition it looks like I have a femoral hernia probably due to the violent nature of the seizures. I have a scar tissue issue above that that needs surgery. Thanks to the unusual nature of some past situations there is a ban on all surgical procedures not life threatening. Please pray we can work it bc of the pain.

What an overwhelming day.....

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[Nakamova]

Congrats! (Sort of). Now you can join the rest of us "old pros", and we'll teach you the secret handshake (or shaky hands).

I hope the med and dosage increases help.

 

[Dolores]

Glad to hear you have a definite (even though not so pleasant) answer. At least now you know what you are dealing with. Best of luck with the meds and be sure to keep us updated with what's going on - you're officially one of the family :flowers:

 

[SassySarah]

I am so thankful. This means so much for me. So much fear and possible massive changes for my family. I am not able to do my career anymore. I used to train in remote areas on techical machines. I have been on desk work since - computer is causing seizures. I have been out of work 3 yrs. The medical bills minimum payments on all little each one is more than my monthly salary. I am a federal employee and thus not eligible for disability even. The dr said today no working..... i can't figure out how all the pieces come together. Dr is scared to retire me at 36. The fear I can damage my body - new hernia needs surgery. Warned I will likely break bones, have other damage fr severity of seizures. I feel lost and scared but so glad for this group.....thank you all!

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[AngelwithDentedHalo]

At least now you know. Sometimes the not knowing is more terrifying than knowing and now that you do know, they can treat you right. Based on my own knowledge & remembering certain things, maybe I can give my doctor some more information and maybe we can find out Why I had a seizure and possible partial seizures, then again maybe not. Often the unknown is worse than knowing

 

[SassySarah]

I was scared of not knowing until I found out today. I know 2 - 1 hour seizures before noon stopped with 1 mg of ativan each- plus 8 hrs in the car, news of needing surgery etc. It becomes emotional and my whole body hurts. Tomorrow I will see the blessing of knowing.

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[CQ:)]

Congrats on getting the official diagnosis.
I hope the meds help control your seizures & you don't have to many side effects.

Now you can join the rest of us "old pros", and we'll teach you the secret handshake (or shaky hands).

 

[JLogefeil]

That good you finally got a diagnosis.

 

[SassySarah]

I feel like I have been through an emotional roller coaster. How come I have had it for a year- in every way and now I am terrified. Absolutely terrified maybe heartbroken, embarrassed by the diagnosis? Did anyone else feel this way? Having my symptoms return so strong the last week out of nowhere after belief meds were working has be discouraged and unsure what the future holds for me.

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[Chaz1]

we are all unsure what the future holds.

But - who knows, the meds may control the E and seziures well and your future be bright...for that we wish for u...

 

[Nakamova]

It's normal for an epilepsy diagnosis (even one that's one year overdue) to feel stressful. It's normal to be upset, scared, sad, embarrassed, and just plain exhausted. Give yourself time to grieve a little about it, and then move on. Please don't be embarrassed for long, though -- epilepsy affects nearly 3 million Americans and 50 million people worldwide, so you are not "different", and certainly not alone.

It's also normal for the meds to need tweaking. The trial-and-error stuff is no fun, and side effects are a drag, but the vast majority of folks manage to get their seizures under control.

I hope you can focus on taking charge of your epilepsy -- and NOT letting it take charge of you. Be proactive -- http://www.coping-with-epilepsy.com/forums/f22/proactive-prescription-epilepsy-1254/ -- and know that you've got lots of support here at CWE as you move forward.