Newly diagnosed at 53yrs old

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Sandie

Sandie

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Hi Guys,
Well this is the first time I have ever been on a public forum and I am actually a little nervous about 'airing'. I was recently diagnosed with complex partial seizures which are typified by olfactory hallucinations and feelings of panic attacks. These have been getting worse for some time and I have been getting symptoms for the last 8mnths. I do not get bodily seizures although have been told that if I did not receive treatment I could have ended up with tonic clonic seizures so at the moment I am just trying to get medication stabilized. I am just in the process of upgrading from 400mg tegretol per day to 600mg with the possibility of increasing it to 800mg per day. I had a particularly bad day yesterday. Is there anyone out there experiencing the same. Would love to hear from you. Thanks for listening to me. I find all this a little scary. Sandie
 
Welcome to CWE, honestly the people on here are amazing and will help you a lot. Tons of articles to learn just about anything in regards to E. Epilepsy in any way is terrifying, and it takes time to open up. I wish you the best.
 
Hi Sandie, welcome to CWE!

You're in good company here. We all know what it's like to be dealing with the unknowns of epilepsy: Why me, Why now, Will the drugs make this stop, Will the drugs make things worse, when will it all go away... I hope the Tegretol increase does the trick for you. If it doesn't work, there are other meds out there to try.

One basic recommendation: If you don't already, you might want to keep a seizure diary. It can potentially help you identify seizure triggers or patterns, and it can help you evaluate how well the medication is working. Good general tips can be found here: http://www.coping-with-epilepsy.com/forums/f22/proactive-prescription-epilepsy-1254/

Best,
Nakamova
 
Thank you for your welcome. I never thought I would develop this at my age and in such an unusual form (well perhaps not as unusual as I thought) Looking forward to meeting everyone. Good to be amongst friends x
 
Hi Sandie, Welcome to the forum! I also have complex partials and one of my auras is that I hear things (never want to say that to someone who doesn't understand haha) and often have to remind myself that it's not real. Cats meowing, music playing, people talking, doors shutting, etc. It can be startling at first.
I'm glad you found the forum and it's wonderful to meet you! ((HUGS))
 
Oh Brandi, it's wonderful to meet you too. I was quite astonished when I was diagnosed with epilepsy and did not realize until recently that there was more than two types. I certainly understand your dilemma and I have to try and rise above these smells that aren't real. Before I realized I had a problem I had my poor husband searching the house for things that could be responsible for these offending odours until I noticed that I was getting them outside the home. Had a couple of bad days this last couple of days so it is good to hear from someone who also experiences different auras.Hugs back to you x
 
Oh sure, a lot of people get them. When I get them I smell feces and body odor. Isn't that the pits? I mean, just once I would like to have an aura where I can smell vanilla or roses. Haha something pleasant for a change.
You are not alone! But it did take me awhile to figure it out, too. I kept asking my daughter if she farted or when the last time she took a shower. Poor kid!
 
Sandie,
A huge and warm welcome to cwe. You are in the right place for info and support and the folks here are incredible!

Before I understood what the smells and sounds meant they drove me nuts, but now I appreciate the warning they give me. My husband and family are now able to comfortably joke about me saying, "do you smell that?" "hear that?" And they no longer say, "I told you that before, don't you remember?"

Lol, half the time during seizures I don't even know who they are! I ask my husband all the time, "Do I know you?" :dontknow: :eek:
 
Chocolate or freshly brewed coffee would be nice.(Ha ha). Mine is rotting flowers or a sweet sickly chemical smell which can last for hours and overwhelm everything else to the point of being nauseating. I also get a feeling similar to a panic attack and on bad days I feel like I have a hangover but since I have been on meds it has helped a lot. I don't get physical seizures but my neurologist has suggested that it was on the cards if I hadn't got help. It took me months to get help because I felt so stupid. Thought I was going mad (Well more loony than I already am Ha ha). So glad I found this forum. Take Care.
 
BrandiBrat said:
I also have complex partials and one of my auras is that I hear things (never want to say that to someone who doesn't understand haha) and often have to remind myself that it's not real. Cats meowing, music playing, people talking, doors shutting, etc.
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lol to not saying that to someone else!

My husband plays video games and sometimes I'm not sure if I hear his game or if its just seizure activity. :pfft:
 
Hi Eli, Thanks for the welcome. I used to ask my husband if he smelled what I did all the time but I know now what they are. I still get frustrated on bad days though. I have to learn to relax and accept it. I haven't reached a point where I "zone out' and I think it is because I was diagnosed before it reached that stage. My epilepsy is still in it's infancy so I am not sure whether it is going to advance or stay as it is. Good to meet you x
 
When I have a really bad seizure run, (I currently avg 30+ a month) and they bunch up back to back my mouth tastes like metal. It makes it so hard to eat.
 
Hope you don't have too many bad runs Eli. I've had a couple of bad days which have really frustrated me but I am ok now. Just got to get on with it I guess. Take Care
 
Hi Sandie and welcome to the popular kids table! Like you, I have complex partials, but mine are mostly during my sleep. I do have the physical movements, or so I am told. I always feel the worst the next day. This past Saturday was especially difficult. At first finding the right medication or combo of medications will seem daunting, but you will get there. In the mean time, you will have all of us here and waiting to help you!
 
Eli said:
When I have a really bad seizure run, (I currently avg 30+ a month) and they bunch up back to back my mouth tastes like metal. It makes it so hard to eat.
Click to expand...

Eli, I get this too...but I always attributed it to my Topamax. Maybe it's not, though because it's only when I'm on a 3-4 day seizure run. Thanks for the tip! You're right...it makes everything taste like a$$ haha
 
Hi,:hello:

Want to welcome you here at CWE.

I didn't find this forum until July of 2011, I have found more helpful information here than at any Dr. office.

I'm 61 and keep learning each day.
 
Thanks to everyone for your kindness in welcoming me to this forum. You guys are awesome! I'm having a bit better day today. Yesterday I was actually feeling a bit teary and sorry for myself (apologies dear people). Until I joined this forum, I didn't know anyone who had this problem and lack of sleep does not help the situation. I am usually a pretty happy person but every now and then I'll have a meltdown(Ha Ha). Epilepsy is a very new reality for me. I was only diagnosed in Dec 2012 although I have suffered for quite a few months now. I admire you all for your positive attitudes and you have certainly helped me in gaining mine.
 
Sandie, I think it's important for us to allow ourselves the pity party from time to time. I'll tell ya what...next time I have one I'll invite you and bring some gin! ;)

I was only diagnosed in Nov '12 and I seriously grieved my loss. Wept, mourned, moped, got depressed, processed it, and am moving on. It's a process and it's one that takes a day by day, hour by hour and sometimes minute by minute to get through. But the wonderful thing is, if we're lucky and blessed...we do. :)
 
BrandiBrat said:
Sandie, I think it's important for us to allow ourselves the pity party from time to time. I'll tell ya what...next time I have one I'll invite you and bring some gin! ;)

I was only diagnosed in Nov '12 and I seriously grieved my loss. Wept, mourned, moped, got depressed, processed it, and am moving on. It's a process and it's one that takes a day by day, hour by hour and sometimes minute by minute to get through. But the wonderful thing is, if we're lucky and blessed...we do. :)
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I would love to come to your party Brandi, but I am actually talking to you from Australia. However, should you ever be in my part of the world , look me up. Sending you some sunshine x
 
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