Finally finally diagnosed!!

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Abynorml

Abynorml

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Last weeks EEG finally proves I'm not crazy! I'm a certified epileptic!
I don't if I should be so happy but it's like a huge stigma has been lifted!
I had one Neurologist tell me it was all in imagination, that there was no way I could of had a seizure, I knew he was wrong, god this is a HUGE relief.
 
I don't mean to insult anyone suffering from this disorder, but god after fighting for 4 years for proof, this is just the hugest relief, and no one I know understands. I had one neurologist pretty much say I was nuts or making it up, because he didn't like the way I described it. My current doc says I just need to up my primidone a little and I should be fine as long as I take care of myself. This took years! I feel so vindicated! Huge huge huge relief, and thanks to everyone here through the last several years for all the knowledge and support!
 
I am happy that you finally have a diagnosis to go with your symptoms! Enjoy the weekend!
 
Abynormal,

I can understand why you are happy that you have epilepsy because it would be such a huge relief knowing what is finally wrong.
Sometimes it can take a little time to get the drs to believe us or understand. In the end we are the ones who know our bodys the best so we should know when something is wrong.

For a few years I thought I was having auras or partial seizures in my sleep because sometimes I would wake up & find that things were in places they hadn't been when I went to bed. I would also sometimes wake up with things on that I hadn't had on the night before (eg- once woke up with a pair of socks on which I knew I didn't have on the night before lol).
Because I live on my own there was no one to witness what was happening in my sleep & I had no one to blame for moving my things about while I slept :roflmao:.
When I mentioned to my local neuro what was happening & I thought it was seizures in my sleep he told me it was just sleepwalking & nothing to worry about. I refused to believe that because I was sure it was more than sleep walking. When I had these 'night time episodes' I would sometimes wake up in the morning with a bad headache (sign that I've had a seizure) which gave me another reason to believe it was more then sleep walking.
When my local neuro had no luck in getting my partials under control I was referred to an epitiologist. When I met the epitiologist I asked him about these night time episodes I would have. He said he was 90% sure I was having seizures in my sleep. When the epitiologist confirmed what I thought that it was more likely that these night time episodes were seizures I thanked him because I was happy that I was right in thinking it was more then just sleep walking lol.
 
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Hello Abynorml,
Thank goodness they have finally put a diagnose on the ‘why’and now you can start working on decreasing your seizures. I am so, so sorry that you were left in a position that you were made to feel crazy, because a diagnose of E sure is not a diagnose of mental illness.

If you have any chance, get a referral to an eptoligist instead of a neurologist, because the eptoligist specializes in E and the overall well being will be addressed much better with an eptoligist.
 
it just took forever to get to this point, I had one doc years ago who told me my EEG was abnormal, and that I had mild myoclonus, I had to switch doctors and the second doctor said the first doctor was wrong, eventually I ended up having a conscious T/C in bed alone but the doc at the time said there was no way I could be conscious during a seizure, or have a seizure because at the time I was on Primidone and Topamax for my Essential Tremors, he said he didnt know what I had experienced and suggested a shrink, I had a few EEGs switched doctors, and everything kept coming back negative, but finally I got proof, working on getting a MRI next. My current Neurologist seems ok, he has experience with both movement disorders and epilepsy, so I think I'll stick to him, I still kick myself in the ass for switching from the first neurologist he was great, but his office sucked(I waited 2 hours once to be seen only to be told the doctor had left for the day an hour earlier), and I switched because I was looking for a movement disorder specialist for my essential tremors, the second doc was an ass he put me on topamax which kinda helped the shakes, but also made me lose a lot of weight and had cognitive and sexual side effects, I had to argue with him to get off of it. As long as the primidone seems to do the job I'll stick with the current doc.

Ive been lurking here off and on for a few years I comment once in a while, this site has really helped me know what Im up against, and Im so grateful for the support of the folks here who told me I wasnt just crazy, I was so scared to be labeled a faker or a hypochondriac.
 
HA HA! You'll have to ask Nakamova what the secret handshake is! Maybe it's just your hand shaking!
You'll have to teach it to me too when I get my official written in stone diagnosis.
I am glad you have finally been validated and gotten some answers!
It's no longer some dirty little secret or something. It's something you can offer up as an explanation. Oh, don't worry about that...I just have epilepsy, that's all!
It's funny that it took you four years (well, NOT funny) but it took me four years too until they decided to treat my "episodes" as seizures too.
Even though I still have to deal with them often at least now I know that the medical world can perhaps offer some help after all.
I hope you can get the help you need!
 
Congrats Abynorml, I'm glad you've got some answers, hope it leads to some relief.

Re: The Secret Handshake: You should receive your illustrated informational packet in the mail in a few days, along with your uniform and decoder ring. And remember: with great power comes great responsibility.
 
Sooo I don't have an exact diagnosis yet but the doc definitely thinks I have Epilepsy, most likely Juvenile Myoclonic Epilepsy, but I have had some possible simple partials, and maybe two atonic falls, waiting on an MRI, so far doc wasn't to concerned, felt that upping the primidone would be enough, and hasn't reported me to the DMV.
 
I need to ask him if I was reactive to the lights, I work in the concert industry, we have a lot of blinky lights, once and a while they make me jump, or have a hard time thinking.
 
I am happy for you that you finally have an answer. You are on the path to getting the proper treatment. I have had a similar problem with doctors not believing me. My CT was fine, and my EEG was fine and every blood test that I had was fine. Two different neurologists said that I was having anxiety attacks and not seizures. Then my doctor jumped on board with them and agreed that I was just stressed out. I was told to go off the dilantin by all 3 of them and each time I tried to go off, the seizures would start again. They said it only worked because I wanted it to (all in my mind). I got fed up with them all and I started all over with a new doctor last month who ordered an MRI. It shows that I have mesial temporal sclerosis and I am now waiting to see a new neurologist (4 month wait). I am not happy with what has been found, but I am happy to have the proof that I am not crazy. I'm relieved that I am hopefully on my way to more answers. Hoping for a better experience with the next neurologist. All the best to you in your journey.
 
Abynorml said:
I don't mean to insult anyone suffering from this disorder, but god after fighting for 4 years for proof, this is just the hugest relief, and no one I know understands. I had one neurologist pretty much say I was nuts or making it up, because he didn't like the way I described it. My current doc says I just need to up my primidone a little and I should be fine as long as I take care of myself. This took years! I feel so vindicated! Huge huge huge relief, and thanks to everyone here through the last several years for all the knowledge and support!
Click to expand...

I spent half of elementary school going from docotor to doctor. The pediaticion said it was a physcological problem, the physcologist said it was a physicall problem. ( I was always like falling over and my legs not workingish, so we went to get an MRI p.s. MRI's + my kind of epilepsy = ouch) When I got my MRI back, they said we had to go to a cyropractor to fix minor things in my back. I went to all these places and I don't remember it. I don't remember the vast majority of my childhood. It's good to know that I'm not insane. Knowing is always better.
 
Well now I'm pissed because upping the dose on the primidone didnt work, pretty damn sure I had a simple partial on the plane on Tuesday I'm kinda thinking I'm gonna lose the right to drive.
 
I'm sorry the primidone isn't working for you. Is there any way you could arrange for people to drive you around without having to find a different job? Maybe get some special photosensitive sunglasses to help with the flashing lights?
I hope there is a way your life doesn't have to change too much to cope with your seizures.
It does sound like it's only a matter of time before they take your license. My GP really felt bad and didn't report me to the ministry of transport but hospitals have no qualms doing it at all. I've been reported twice. WHich was funny because my license was already gone for 6 months and they report me again just to make sure I'm going to wait a full yr for sure from this point on.
I have some serious payback to do for people when I can drive again. Maybe. One day.
 
I've had 3 years of just trying to prove I have seizures, and now I wish I had just been crazy. It's an awful feeling not having any friends or family that can understand. This is one of those things that really can change your life dramatically and I don't like change.
I'm grateful to be able to talk to people here, but god I need a hug right now. I know that when not if, I tell the doc about the experience last year when driving and the seizure on the plane I'll probably lose my license, I think I'll call today, at least most of may ill be on tour and won't need to drive, do that one out of 3 months, and hey at least Nevada it's only 3 months, and I'll feel better not putting anyone else at risk. I'm trying to be optimistic, it does no good worrying about the future, which I already do to much of.
 
Just wanted to be sure to thank everyone here for the support and knowledge, throughout the last couple years, it's not so scary knowing others have been in my shoes.
 
Getting a second MRI on Monday had one 3 years ago, but it didn't really show anything. Waiting for the doc office to open to call and see if I can up the meds or get a new appointment.
 
Lots of virtual hugs! Hang in there. Change does suck...but maybe think of it as adapting? I'm glad you're getting a second MRI! Maybe it will show something this time! If not, thats ok too. Thank goodness MRI results aren't the be all end all to every neurologist.
 
Yay for the diagnosis!! Sounds rude and odd but you know what I mean! After a 15year childhood history of t/c's and positive EEGs, my epilepsy ramped up again a few years ago and I got the jack*ss Neurologist who said I was just imagining it "You Psych students just think too much, I see it all the time!" A-hole. The second one was lovely and diagnosed me with partial seizures. Meds worked beautifully for 5 months then failed me again. He's now referred me to an Epileptologist who is also wonderful. Latest EEG showed abnormal activity in my left temporal lobe which correlates with my symptoms! She said it's only minor but at least I have PROOF i'm not faking it! I totally understand how you feel!

I haven't driven for over 12 months and yes, it sucks but you do find ways around it. Good luck getting your medication sorted, I'm sure they'll fix you up =)
 
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