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CZZ

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Hi, Im new to the site. I have recently had 4 seizures. I have had myloconic jerks for some time but atributed them to the disease I have which is full body RSD. I was treated in a clinical trial in Germany by being put in a coma. Things did not go well- it was to be for 5 days but I developed pnemonia and almost died. I was intubated for 35 days.
I belivie I have been conscious through most of the seizures I have had. they are accompained by terrifying "dreams" of being hurt. But its like my head is in a vice and my upper body is shuddering. I am waiting for it to pass but am aware but cant move or stop it, That one felt like 5 minutes but could have been 30-45 seconds. The next one involved a fall and was in the morning- same type. I was out for about a half hour I belivie- I hit my head on the bathroom floor aNd didnt knwo where i was... My sister found me.
The next one was why I was waking up- very violent and scary felt like i was fighting for my life- like demons were trying to keep me from waking up. I realize this all sounds weird but this is what has been going on. Im terrified. I didnt mention the constant headachs 24/7. Very intense and vertigo. I have had a cat scan last monday- it was negative. Now I am scheduled for a mri and an eeg? Just trying to find out what in the world is going on? If you have any thoughts Id be interested in hearing them. I am on many meds for my RSD including some seizure medicne by coincidence- but it is not stopping them. thanks for any thoughts sincerely, CZ
 
Hi CZ!

Welcome to the group! Sorry to hear about your spells and everything going on. I wasn't familiar with RSD to be honest. I looked it up. I have had chronic pain/muscle weakness for yrs. also. I am sure that must be very hard for you. This group is wonderful and has been very helpful to me. It has helped me with information and support as well. I have complex partial seizures in the left temporal lobe. It took me a number of yrs. to be diagnosed. I have nocturnal seizures for the most part..but mine are really weird as well. (not that there is a normal or typical I guess) Mine are more like I am crossing over to the other side of death and it isn't the wonderful white light feeling for me. I feel very shallow and my breathing is barely there. I can't seem to shake out of it or fully wake up and become alert. I get other things along with it..blinking,dizzy,cold, sometimes a little jerky etc. Sometimes the eeg's may not capture seizure activity initially. My mri was normal..and my first eeg showed some wave and spike activity and the next one showed seizure activity. Hopefully, you will find answers soon. I know you will find alot of support and help here. Take care!!

Michelle : ) P.S. I am always aware of my seizures as well..
 
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Hi CZ - Welcome to CWE
Glad you joined us, yet sorry you have to be going through this experience.
Waiting for results is sometimes one of the hardest parts of dealing with medical issues. Also, learning that those results are not set in stone. Occasionally they mean ....nothing.
They are just a guideline for your medical team to begin to put the puzzle together.

There are some interesting alternatives listed in the Library. This is how I made sense of my daughters situation. Using intuition, listening to my gut, putting ALL symptoms into the "game" and seeing which ones matched up.

Luckily my hard work and patience has paid off as my daughter is seeing far better control than when she was hand fed pharmaceuticals. Her over all health is improved too.

I wish you luck in finding some answers.
 
Thank you both, so do mine sound like seizures to you?

Michele and Robin, thank you so much, it is nice to meet you both. Michele your situation sounds very similar to mine. so I guess mine to sound like seizures- you just kind of know the minute you have it it is a seizure is the way I felt. Your description of the dark side is exactly like mine and it bothers me as I am a very postivie person- they are scary. Im sorry to hear you have those too but Im glad Im not the only one.
Robin, I will go to the alternative site- I too belivie in following your intuition in figuring these things out.I hope my puzzle turns out alright? Do my episodes sound like seizures to you? Thank you again for saying hello. Sincerely CZ
 
Welcome CZ to CWE. I hope you enjoy it here. As you can see everyone here is cool and friendly. We try to help one another. It's almost like having a big happy family. Again welcome.
 
Welcome CZZ to CWE! I hope you enjoy it here as much as I do. You will meet alot of friendly and wonderful people on here. So make yourself at home. Take care.
 
Hi CZZ, welcome to the forum. :hello:

CZZ said:
...I belivie I have been conscious through most of the seizures I have had. they are accompained by terrifying "dreams" of being hurt. But its like my head is in a vice and my upper body is shuddering. I am waiting for it to pass but am aware but cant move or stop it ...
Click to expand...

Sounds a lot like sleep paralysis.

CZZ said:
I didnt mention the constant headachs 24/7.
Click to expand...

See this thread about headaches - there are several suggestions in there.

One possible commonality for sleep paralysis and persistent headaches is poor quality sleep. Have you ever been tested for sleep apnea?
 
Hi Again Cz,

I will be anxious to hear how all of your tests come out. Bernard, they actually really thought mine was sleep paralysis for quite a while too. It is tough, because alot of these things really mimic the other.. it was so frustrating for me because in my heart I just knew there was more to it. Nocturnal ones are tricky for sure!

Michelle
 
Welcome CZZ

:cheers:

Fear is VERY common and understandable for those new to epilepsy. Please don't feel bad about being scared. I have had E for 27 years and it still scares the @#$$%%^^ out of me.

Stop in and see us often. This is a great place to learn and to relax.

:cheers:
 
Hi CZZ, welcome to CWE. It's a great place to find info and just get support from people who know what you're going through.

I'm not a professional, but the scary thoughts, fear, etc sound like the sensations of fear that may accompany temporal lobe E.:twocents: I experience intense fear and dread before the start of complex partial seizures and they leave me with a monster of a headache...I'd be interested to know if the docs think you have E and if so, if they find a focal point.

I hope things go well for you at the doc appts. Again, welcome.

Morgan
 
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Hi CZZ! Welcome to CWE. :) As Robinn suggested, check out the alternative treatments info in the library. I myself use vitamin supplements along with my seizure meds. I've gone 2 months now without a seizure, and that was the only thing that I changed...so check it out. :) Feel free to ask any questions, chime in, or just vent whenever you need to. :)
 
Thank you , I will. I have my mri and eeg wednesday so i should have more direction and answers. My seizures have stopped at 4 all this months, so I am relieved. Just small little ones now. thank you again. CZ
~~~
Morgan, sorry I didnt respond earlier. I will let you know as yours sound exactly like mine- they are awful arent they- I have the monster headaches too. Non stop - thank you I will let you know how things go.CZ
~~~
Thank you Buckeye, Im glad I am not alone. It is terrifying- Ill feel better when I have some answers. Thanks again, CZ
~~~
Hi I havent been tested for sleep apena- I am going to go to the site and read about both- thanks so much. !CZ
 
Hi Cz!

Forgot to mention..I also have sleep apnea. They figured that out first..but my "spells" continued after a while and that is when I eventually was diagnosed with E. I will message you later..can't wait to talk about all of our connections!! Amazing!!

Michelle : )
 
Hi CZZ

Welcome to this wonderful website CWE, I hope you get as much from it as I have, I just had my second brain surgery, so the people here were extremely supportive and kind, I hope you get the answers you are looking for. My epilepsy was very different to yours, I talk of it in the past tense, as I haven't had any real problems since my right Hippocampus was removed three weeks ago in London, but I still have the terrifying auras that sometimes preceeded my mainly Complex Partial Seizures before the operation.

I'm sure that if you keep in touch with CWE, you will come across someone who has experienced the same as you have. The MRI scan will show up any structural problems that there may be, the interventional MRI scans are amazing, they can actually watch the brain working, fascinating stuff, the EEG will show up if you are photosensitive, affected by flasing lights, or vibrant geometrical patterns, believe it or not,it only affects 3-5% of people with epilepsy, I even read recently about a woman who had epileptic activity, every time she cleaned her teeth!!

I hope everything goes well for you, keep in touch and let us know how things go?

God Bless & Best Wishes

Elaine x
 
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Thank you Elaine for your kind welcome and sharing of information. I am so glad your two surgeries were successful- i hope now they will be able to help you with the auras.. After two surgeries, i hope so . Thank you again so much, I will post how the tests go, i am sure I will need help as to how to interperet them. this site does have wonderful warm members. So thank ful to have found you all. Sincerely, cZ
 
No Probs CZ, just let us know how it all goes, and all the best to you!

Cheers
Elaine x
 
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