Partial results from 3 day ambulatory EEG..

[cgarff]

Hello all. I am sitting here sleepless at 3 am after a night filled with seizing (15 times) with thoughts of some of the results I received last night. I have mixed emotions about it really. It was just short and sweet, but I appreciate my Neuro sending me an email to let me know that she finally had a chance to read through the report. Initial feelings, excited to see an email from her. Then I read it, and re-read it to make sure I read it right in the first place. I have feelings of did-belief, numbness, sadness, frustration and relief I guess I would say. This is the reply I received.

I finally got to read your 3 day ambulatory EEG, and it was a good thing we got it. It does show some epileptiform activity at sleep and with some of your movements, but not every time. I think it is much more of a problem than we have previously thought. The medication I am taking has helped me with some of the problems, but not all. She is going to put me on a new medication on Tuesday for adult onset epilepsy.

I can't believe, but am relieved that something actually showed up on my fun nights of seizing that the EEG. My last night, my body truly gave her a show, and I am hoping I can get at least a copy of the 2 hours of video that show the fun that I go through. Pretty much everything went crazy except for talking which I couldn't do, and walking because I was trying to sleep. But movements from Head to Toe literally lit up the screen. Thank goodness. That way she could truly see what I go through when things are bad.

Numbness.. not sure what to think.. Its not all in my head. I have been through several neurologists during the last 8 and a half years, and finally one listens to me, and doesn't chalk it all up to FND. She does care. She isn't just a Neuro robot. She is willing to look out of the stupid FND box and search for more answers. About freakin time!

Sadness.. why do we have to go through all of this crap. What is the purpose of it all? I guess in the end there is a reason, something to learn from etc.. but I for one am done with it. I don't want to play this learning game any more. Sorry lack of sleep, getting emotional.

relief.. finally some type of answer, and something that might actually help with part of it. YAY!

frustration- I received a call on Wednesday after my therapy, from NIH, the National Institute of Health in Bethesda MD. To those of you out of Country, this is a government funded research facility that looks for people who are dealing with disorders of all kinds, and has them come and participate in studies so that they can learn from them. of course this is mixed in with healthy patients as well to cross examine. Last June, they published a paper on finding an abnormality in the brain in the TPJ The temporal Parietal Junction that was different in some of the FND patients vs normal patients through an fMRI. Which prompted me into asking if I can do that as well to see if there is something different. Haven't had a chance to do it yet, but still pushing.

Anyways, I was called to do a 3rd part of a study. I participated in the first 2, in hopes that their research would be able to help us out. Anything to find answers to this. I called them back, and I was able to answer all the questions as no, and thankfully I qualified to participate again. Because I live on the other end of the US, they fly me out there with my husband, pay for the flight, the hotel, and some food, and even pay me for doing the testing. Not too bad really. It has actually made for some fun trips for my family as we never would have had the chance to go back there financially. but one by one I have been able to take them all through the various trips back. So Cool. Anyways I was excited to go again in June once kids were out of school. I just had made my flight reservations yesterday about noon. Then I got the email around 7:30 pm.. and now I don't think that I will qualify to go because of the epilepsy diagnosis, and the medication for it. That I believe will kick me out, and I won't be able to participate. Sooooo bummed! Not that I miss out on a trip, that is a bonus.. but that I won't be able to help find answers. grrrr.

I am going to send the nurse an email and hope and pray that I can still be part of it. cross your fingers for me please! I want to help with understanding of this stupid disorder so badly.

I guess If I can't, maybe I can ask if they have something that involves FND with epileptic and Non-epileptic seizures. Just praying that I can still help in some way.

Well I think I am finally getting a little tired now that I have been up for several hours. It is only 3:45 am.. maybe I can still get some sleep.

Good night/morning all. Wishing you all a good symptom free day. It may not happen, but I still wish it. Take care

Cheryl

[Hidden]

Hi Cheryl, you are an inspiration to all of us. I'm not sure if I could be brave enough to go through the testing, but that testing helps us all.

I'm sorry you got an epilepsy diagnosis but at least it can be treated and hopefully offer you some normality back into your life. I know someone who got adult onset epilepsy and 30 years on has never had another seizure after beginning medication, and worked right up to retirement.

It's a shame you are not getting that fMRI as iv seen other comments that it can show FND. Maybe the nurse will be nice and get you back for that last one especially since you have helped them out with being available for testing for us all.

Sleep well xxx

[cgarff in reply to Hidden]

The test really wasn't all that bad. The nurse actually came to my house. hooked me up with 25 electrodes and wires stuck to different parts of my head and two EKG wires as well. She then attached them all to a box that sat in a pouch much like a purse. I was able to put it over my head and shoulder and go about my day and night. It monitored any activity throughout the day and night which was nice because it is so unpredictable. I took it off over my head at night, and stuck it under my pillow to sleep with. I also had 24/7 video monitoring, but I didn't have to stay in front of it all the time, which was nice. It had night vision so it could record me while sleeping when I seem to have the most problems with it. Thank goodness they were able to catch it.

I hope that the meds will help. Now if I could just get the rest of the movements along with my voice back, I'd be doing great! ha ha.. some day I hope.

OH wow, I don't know what I just hit, I'm sitting in the dark typing, it made it look cool... oh well.

My problem with the fMRI is trying to find one in my State. I found a possible one online that is only about 40 minutes away from me driving. I asked my Neuro to check into it. I think I just need to remind her. Hopefully they have it there. Otherwise I may have to see if insurance will allow me to go out of state to do it.

Crossing my fingers the nurse will let me stay in. She is a sweetheart. I love working with her. She keeps me posted when there is something new. I just want to do my part so badly in helping to find answers as I am sure we all do. Here's to hope right?

Hugs and best wishes to all. Thanks Amalia for your response!

Cheryl

[englishmumof2 in reply to cgarff]

Wow Cheryl, hugs. I often wish they'd find something so I can say "ah ha there it is", but alas several Ct and MRI later nothing shows. At least if they can Medicate you can sleep as sleep is so so important! Fingers crossed you'll still be able to do the study x. It's sunny here today and blue skies sending you hugs xxx

[Hidden in reply to cgarff]

Hugs 🤗 to success

[Hidden]

Cheryl.

So proud of you. You have kept after it all these years and sleep deprived nights. I appreciate what you have done as it gives us all hope. This may be only one piece of the puzzle for you so I pray they accept you in for the third stage of the study. Imagine, the chance to have some amount of life without abnormal movements. Thank you for sharing all of the thoughts and emotions.

Sleep as best you can for now.

Dan / Seattle