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beachlife

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Hi, just looking for some morale support. I went for a second opinion and the neuro said she couldn't rule out epilepsy from the first consultant's mri and eeg tests (who said they are psychogenic) and she would like to do more tests. The gp tried to arrange these tests at a separate hospital. I just found out the gp assumed i'd had these tests because my new consultant has sent my gp a letter out of the blue saying they are psychogenic. I haven't had any further tests or seen her since my first appointment so i don't know what's going on. I thought the whole point of a second opinion was to have an independent opinion with new tests but i've only had one appointment with her, and around that time i'd been well for a few weeks. I'm a bit upset and just don't know where to take it from here. I've accepted they are psychogenic but i feel let down and i don't know what the treatment is, what would a psychologist do, can I get my licence back, do I have to tick the box for mental illness on job applications in the future, will I ever fully overcome my retrograde amnesia? I realise this is an epilepsy forum but any advice would be appreciated. I'd love to hear from anyone in the same boat... Thanks in advance :) ps i have attacks of right sided pain in my head, face and arm leaving me with temporary right side facial drooping and right side weakness. I also have what they used to call generalised seizures before they called them psychogenic. It was the latter that caused my amnesia. I was having a few of those a day but they stopped for a few weeks (when i went for second opinion) but a few weeks later they came back this time just once or twice a month always in my sleep and there's a pattern with my monthly cycle. The new neuro doesn't know this but i don't expect she's interested because she's discharged me from clinic. i would love to hear from anyone ...
 
Sounds to me

as if you really need to go for a THIRD opinion.

No, you don't have to tick the box for mental illness, and when you get your license back is dependent upon when (and if) you meet your local criteria for doing so....that may mean staying seizure free for 6 months, a years or even more.

Some sort of therapist could help you with the retrograde amnesia. Another couple of things to consider are: keeping a journal, diet, and neurofeedback.

Keeping a journal, though a pain in the arse, will help you to try to pinpoint the triggers. If this is tied to around your monthly cycle, that is called CATAMENIAL EPILEPSY. It happens because of shifts in your hormones...and various ups and downs in those hormones can trigger them. Estrogen lowers your seizure threshold, progesterone increases it.

Diet--wow, this is a subject that you can find plenty of reading matter about here on the forum. There are a number of diets available, and quite often they do help. I, myself, was on the GARD diet to help control my seizures, and it did well, until I was actually diagnosed as a celiac patient. Now, I'm on a much more strict diet.

Food, light, sound--they can all be triggers, so keep that in mind. So can stress and lack of sleep.

Neurofeedback is a way of training your brain to avoid the kindling that occurs, where it has learned to seize again and again. RobinN knows quite a lot about that, as well as the nutrition aspect. You might want to PM her, and talk.

Take care, and good luck.

Meetz
:rock:
 
Gotta agree with Meetz. Unfortunately, with epilepsy, we often end up having to help the docs by giving them info they never even think to ask for....so look for a third opinion, and while you wait for your new tests (and you'll probably need to straight out ask for them) try keeping a journal. In it write:

1. food and drink (when, what, and how much)
2. sleep (when, how much)
3. stress (what and what you're doing to deal with it)
4. OTC meds your taking (flu/cold/allergy etc, when and how much)
5. herbal and vitamin supplements (what, how much, and when)
6. odd feelings (odd taste/smell/noise/feeling/sights, and any migraines you may have...when and how long they last)
7. Your odd spells (what happens, how long they last, what you were doing prior, and where you were when it happened)

You and your doc will use this info to see if you can spot a pattern. To see if you can see what might be triggering your brain into seizing. Hope this helps. Also, feel free to ask questions, check out the library here, chime in, or just vent in the padded room as needed. You aren't alone.
 
Thanks Skilly....I spaced listing what to write in the journal. You are great!

One thing I DID forget to say: when you go for that third opinion, (and Skilly pointed this out, too) make sure to ask for the tests, but INSIST ON AT LEAST a 24 hour EEG. It is next to impossible for the doctors to find anything on a 20 minute, or even an hour long EEG. You have to remember that EEGs ONLY capture a seizure while it's going on during the hookup, so it's a mini-window in time, sort of like a photo.

Again, good luck.

Meetz
:rock:
 
Meetz and skillefer, thank you so much for the prompt and thorough response I really appreciate. I haven't heard of the GARD diet, or neurofeedback or catamenial epilepsy so that will keep me busy on google tomorrow! Thank you :) I never thought to include all that information in my diary- i only logged the dates so i'll be paying more attention from now on! The gp is referring me back to the second neuro but I can't see her changing her mind. I don't know where to go for a third opinion and i'm not confident that they'll start from scratch- even the private clinics asked for copies of previous investigations but i just don't want everything to be based on the views of the first consultant. I've only had one forty min video eeg and would welcome a longer one if only they would get that far! I read in another post about the zagreb centre - do you think that's worth a try? Do you know anyone who's been there or could you recommend anywhere else in the uk or europe? I'm willing to travel! I could understand the shaking being regarded as psychogenic and perhaps they could write off amnesia as suppressing memories but i can't see how one sided facial drooping could be? My gp also questioned the diagnosis of stress based on the fact i'm asleep when they happen. How long after your journals did you get the right diagnosis? I am sorry about lack of paragraphs i'm using my mobile but i'll log in from my pc in the morning and fix it!
 
OK, here goes

First things first, a 40 minute EEG proves nothing, unless you are seizing at the time, and that doesn't usually happen.

If I were you, I'd send a PM (private message) to Crazy Monkey here on the forum. She knows quite a bit about different areas or places to go to in the UK as she lives there, too, and she, as well as Elaine H (send her a PM, too) could probably help you quite a bit. :)

Send me some info on the Zagreb Centre, I've never heard of it, and I will give you my opinion. Since I live in Indiana in the US, I'm a little behind on the UK Epilepsy centers.

Remind that doctor of yours that stress is an all-encompassing emotion, and I can guarantee you that it can get in and pervade your sleep also.

I was born with E, lucky me, and have just simply dealt with it all these years.

Now, you say that your seizures are all nocturnal. So are mine--and I have FOUR types.....tonic clonic, myoclonic, electrographic and focal. Someone would have to videotape what I do during the focal ones in my sleep, as I have no idea. The t/c's are obvious, the myoclonic is a lot like having jerks, or a big falling sensation while your going to sleep, and the electrographic....*sigh* That simply means that ONLY your brain is seizing while you are asleep. And YES, you wake up totally exhausted.

Don't forget to check out the info here about catamenial epilepsy, the GARD, LGIT, Ketogenic and other diets. Dutchmom & Rackelsmom are two great people to talk to about the ketogenic, as they have quite a bit of experience with it.

www.dogtorj.com will give you info about the GARD diet too, as he is the originator of the diet.

Take care!

Meetz
:rock:
 
It doesn't sound like your seizures are psychogenic -- those don't usually occur during sleep. And with all the other symptoms you're experiencing, the neurologist should definitely take a closer look. Maybe another MRi or CT scan, in addition to an EEG, so that you can get a useful diagnosis. Have you been prescribed any medications? Have they made a difference?
 
ps i also forget to say i'm scared that if i push it too much or go back armed with lots of evidence that the consultant will accuse me of trying to have epilepsy or worse take it a step further and say i have that syndrome - you know the one, is it Munchausens? I feel i'm not on a level footing when they suggest i see a psychologist and it's hard to come back from that twice,even my gp warned that although we haven't reached the line yet, we're eventually going to have to draw a line under this :( How do i go about showing the diary to the consultant or get a third opinion without treading on anyone's toes and making it worse for myself? My second neuro is really well respected.
 
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Thank you meetz for all the great advice and contacts i'll pm them. There's so much useful information on this site i'm glad i signed up :) Nakamova thanks for your post. They haven't given me any medication. I asked the gp for something for the right side head pain today that i seem to have on and off daily but he just suggested i take paracetomol. The head pain isn't like a headache and i don't know if it's a coincidence but it's in the same place i suffered a head injury years ago- the mri i had a few months ago was clear so that's good. Paracetomol does not help. They only time i've had anticonvulsants was from age 1 to five, sodium valporate, for febrile convulsions. That hospital wanted to monitor me after five to see if the seizures came back but we moved and i was more or less fine until this year. Meetz it's interesting about your nocturnal seizures, i didn't know about all the different types. I don't know if mine are similar i rely on my bf waking up and telling me what happens- i won't bore everyone with the details now but i might pm you about it. How have you managed all these years and what do you take for it? Thanks for all the great advice :)
 
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*grinning*

I take things one day at a time. *sigh*

There are actually around FORTY types of seizures. More, I think, but I'm getting tired, and don't remember for sure at the moment.

I'm on 4 meds...Lamictal (titrating up), Klonopin, Topamax, and Carbatrol. Since I am a celiac patient as well, I am on a strict diet, and I have a few other issues, so I have to balance things carefully. But, that is the way things are, and there are other people that are worse off than I am. So, I deal.

I mean....there are others who are blind, deaf--or almost like my son, are missing limbs, have cancer, whatever the case may be. I have this annoying thing called E.....and some other annoying issues that may potentially become worse if I don't take care of myself, so I do. That's all there is to it. :)

Frankly, if you had febrile convulsions, I find it hard to believe that you would be having psychogenic seizures. Epileptic would be more appropriate, I think. Go for that THIRD OPINION.
 
I found a psychologist soon after my daughter began having seizures. I love her, and what she has meant to both Rebecca and myself over these difficult 3 years. She has been our advocate when we were told Rebecca's seizures were psychogenic. She told UCLA that she knew that there was more going on than that. She has really fought for us, and our rights, with the HMO we have. I highly recommend finding someone that you are truly in sync with.

The doctors obviously don't know what is going on with you (as they didnt' with my daughter). Keep asking why, and keep digging.
 
thanks for your great posts. Meetz- that sounds really tough i don't know how you manage. Especially with celiacs too. I looked up the GARD diet and I was amazed - partly because many years ago the hospital worked out I am intolerant to all four of those foods plus a few others due to an unrelated condition but i got lazy! Robinn - thanks for your advice. Sounds like you've had a lot of experience with this. Were you nervous about taking her to a psychologist? It's great that you found a good one and that she backed you up :) Did you find her first time around? Was there any one thing that convinced her that there was more to it? How is your daughter now? I'm looking into getting a third opinion but it might cost me! Thanks again for your posts :)
 
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