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RuthMH 
It's been more than a month since I have written in my journal and I know it is long over due. Thank you to my friends who have nudged me along and sent encouragments my way. I am sorry I haven't been in touch.
In my last journal I explained the problems I had been having with seizures (and panic attacks) nearly everyday, and many of those days the seizures came in bunches or clusters. I had also been looking forward to my appointment with my neurologist then, to get it all straightened out once and for all.....so I thought.
I have always thought that getting this E under control really was just a matter of finding the right medication for ME. I still think that. I have had Epilepsy for 34 or 35 years now and I have gone through periods of time where things seemed to be in control. Then something would happen...don't know what, and I would be starting all over again just as I am now. It did seem to go on for longer this time but I just thought I am older now, things change, that's just the way it is....right?
So I saw the neurologist and just expected to get put on a new med. My hopes were so high, I felt excited to be there (crazy I know) but after all, this time may be the time to get the med that was right for me.
He looks at my blood results, doesn't even turn to look me in the face and says There's nothing else he can do for me, he's going to send me to someone else. !!!!!!! Shock!!!!!!!! That was how I felt and I didn't hear much else of what he may or may not have said after that. All that kept echoing in my mind was there was nothing else he could do!
So this is mostly why I have been inactive most of this time.....trying to figure this all out. He did say he was going to send me to a specialist....I said to him...I thought that was what you were! Anyway, he set up an appointment with a neurologist that specializes in Epilepsy. They will also be doing a "sleep deprived double length EEG".
When I left his office that day I felt like I had been punched in the stomach. He wrote out another med and said, here, try this....and I left. I kind of felt like a zombie. Got out by the elevator and burst into tears. Again, my hubby Doug seems to have some psychic ability (ha ha ha)my cell phone rings and it's him....."everything OK?" he says...."I'll be right there".
Nellie if you read this journal, I want to say thank you to you for caring enough to phone me. You understood exactly how I felt and why I felt that way.
So since that visit to the doc I got gradually inched up to the full dosage of the new med. I haven't had any seizures since I have been on it. I still get the panic attacks and I have just started getting some side effects. I guess that was to be expected since the full dosage started about a week ago now.
Over-all I am feeling better with no seizures right now....I could do without the side effects but we'll just have to see if they last or go away after my body gets used to it. Here's hoping.
Sorry this is so long. :(
I am still kind of pissed at that doc! And I will do this Special kind of EEG and see this specialist but after 35 years if they think I am just now going to do a bunch of the other special tests I know some people have done.....they can forget it!!! Many tests and conditions I didnt even know existed until I joined this site in Jan 2008. How come the neurologists never tryed any of these special things before? Too late now. Not for me. If I was just starting out with this E in my first 5 years or so I would but not now.
So that's it for now...at least the summary. Thanks again to Nellie especially and thank you Darrell for looking in on me from time to time. There are alot of others too that have taken the time to send a kind word...thanks to all of you.
I hope all my friends are keeping well....I have been looking in on everyone from time to time but I was just not ready to participate while I was going through all the seizures and everything else.
If you have made it down to the bottom of this page, bless your heart!!
Thank my friends
Ruth
xoxox
Comments
You have definitely had your hands full. Its no wonder you haven't posted anything. I feel your disappointment and frustration with the neurologist. Oh, its such an empty feeling when the rug gets jerked out from under you. I've done the same thing - get outside and the tears flowed. No one can understand that unless they have been through it.
Why didn't this sorry sap-sucker send you to a specialist to begin with. I don't blame you about not going through all those fancy tests. If the tests could show how to treat your condition, that's different. But if all they do is confirm what you already know - she's got "E" - then no way. I've been there too.
Here's a big hug to my Canadian buddy. Hang in there and remember, you have friends that are thinking about ya!
DarrellB
I am so sorry this doctor you saw was such a jerk. Just because they have medical degrees doesn't give them good bedside manners! I am glad however that this new med has stopped the seizures, at least temporarily. May you be in better spirits as you read this. I will keep you in my prayers. ((hugs))marcia
bizemomm
Hi Ruth
Really glad to see you back. Your doc sounds like a wally at least this latest med has had some positive impact.Thinking about you
Paul
PAULT32
Hi Ruth,
So happy that the new med is giving you a bit of relief. I've been there, as you know it, with neurologists with poor bed side manners. When you're the mother of a child with epilepsy, the claws come out. After dealing with these doctors for almost 4 years now,they have me more confused than ever. Sometimes his neuro is very compassionate and seems to really care and another time you know they are just trying to get rid of you. I believe if the epilspsy is not responsive to medications then they get frustrated and somehow try to shift the blame to the patient as if anyone with epilepsy is enjoying themselves. When my son has his next appointment, I'm going to be ready with a list of questions and I am going to say i expect some kind of an answer to them, even if it is I am not sure. I feel your frustration since I was there a few months ago. Stay strong and I'll be talking to you Love, nellie
Mabou
Good to see you are back. You have had a very trying time my friend. I can understand about theese tests they are annoying & invasive at times. As far as the dr. goes he gives my the feeling that you were nothing more than a lab rat to him. That is the kinds of things that dr.s are theese days & it isn't right at all. Glad you are seizure free at the moment. lets just hope that it stays that way.
Jason
thunder38