[Sitke]

Hello,

I just don't know what is happening and I am frustrated, upset and actually a little scared.

Quick story, had a severe concussion over a year ago, lot's of cognitive problems and even now having problems, thinking is still slow at times, short term memory gone...but late last year I had what the ER doctor thought was 2 seizures, one right in the ER waiting room when I suddenly could not think properly, write my name...my hand went weak...then my left arm started shaking and I started shouting the same thing over and over, felt like a robot, knew it was me but couldn't stop, electric feeling in my arms, felt like a dream but could hear muffled voice, only last about 2 mins.

My Dr was awful, would say referrals are being sent to a neurologist but to this day I still do not have an appt, referrals not being sent, wrongly written, on and on...

I have never experienced what happened late last year, but still losing time, electric feelings in arms sometimes and I feel just "weird" in my head, it passes after a minute or so.

I can be walking in to a store and feel like I'm disorientated and like I'm in some kind of dream, it's scary as I just feel so out of it, something's wrong.

I notice the lights in Walmart bother me, looked up at them the other day and my head felt weird and again I felt disorientated.

I am worried, frustrated and don't know how on earth to get to a neurologist, I have changed Dr's but...the referral she sent through has yet again been sent to the wrong place, they are telling me they cannot accept me as a patient because the Dr is not writing my symptoms down clearly enough.

Honestly I don't think I can explain it any more simply to the Dr but she just looks at me and I feel like I'm trying to tell her what to do....it's a circle.

Does this sound like some kind of seizure going on even though the 2 I had last year (1 at home, 1 in ER) have never happened that badly since then?

Sorry to go on so long but I am frustrated and dread calling the Dr tomorrow.

Thank you for any advice/help. PS I am now on Medicaid, lost job and now don't work.

[Porkette]

Hi Sitke,

Welcome to the forum! I understand exactly how you feel these weird feeling that you get when you feel like you are in a dream are called jamius vu which is all part of having epilepsy. It's when theres so much electrical activity going on in the brain that it is triggering a simple partial sz. where one area of a persons brain is firing up neurons and this in turn can give a person this daydream feeling, say one or two words over and over again and get the tingling in the body. The next time this happens tighten up all the muscles in your body and make your hands into tight fists if you do this fast enough it will stop the weird feeling or get a cold washcloth and put it on your face and the back of your neck by doing this it calms the neurons down in the brain and stops the possible sz. If I may ask do you ever feel tired, confused or have a headache before or after this happens? If you do you could be having seizures (sz.) A few yrs. ago I was in a accident and ended up with a concussion this in turn triggered more sz. for me because the brain was swollen and bruised it took about 1 yr. to get over along with a lot of help from pain management therapy also. Try taking vitamin B12 1000 mcg once a day and also each time you have any signs of a possible sz. write down what time it happened along with a description on a calendar that way when you see a neurologist they may see a pattern in your sz.
My best advice to you is for you to see an Epileptologist at an Epilepsy Center which are at large hospitals or university hospitals. Tell your primary Dr. to refer you to see a Epileptologist with the correct medical info. or you will report them to the Medical Conduct Board in your state and take my word the Dr. will get moving.
In regards to the bright lights at walmart this tells me you are photosensitive which means certain color lights and the brightness of some lights can trigger sz. for some people. I had a e.e.g. done where the Dr. flashed different color strobe lights one at a time and they found that florescent green, amber and bright white like when the sun shines on the snow were the 3 main colors that triggered sz. for me. Since that time I've had 2 brain surgeries to help reduce my sz. What you can do is cut back on the carbs and starch foods, stay away from anything with nutra sweet in it because that causes more electrical activity in the brain which can lead to sz. and cut back on caffeine.
It could very well be the concussion that has started the sz. I want you to take note of the weather also and if you notice a low pressure in the weather coming your way take note if you have any sz. sometimes a low pressure with bother some people because the air gets heavier and in turn the heavier the air then it will mess around with a person hormones and hormones changing can often start sz. up. Sorry for carrying on so long. Here's wishing you the best of luck and May God Bless You!

Sue

[Sitke]

Hi Porkette!

Thank you so very much for your reply. You have been through a lot, hope you are feeling okay now.

Yes, I always feel confused and sometimes get a headache right after or before these strange things happen, the confusion scares me, it's like I can't think of anything, no words, nothing, total confusion. My head sometimes feels heavy.

I do have a herniated disc at C7-T1 pressing on the C7 nerve in my neck, a lot of pain, wondering if that has anything to do with this.

Right after the 2 episodes late last year I felt so tired, now I'll suddenly get very tired and my brain gets that "off" feeling, it actually feels like waves in my head, very hard to describe, then it will pass.

I'll tell my husband it's happening again, I don't speak during it, just feel dreamy.

After my car accident (did hit head but cannot remember it) my brain felt so swollen, severe head pressure got worse and worse, Er doctor gave me a brain MRI but saw nothing, he said severe concussion.

There is only one place in my town where Medicaid patients can go, it is a large community medical place, I know because I'm on Medicaid I hold back in saying some things for fear they will get angry and then I'll have no where to go, I know I shouldn't feel that way but I do.

My previous Dr actually came quite close to my face and got so irritated when I said this has been going on for a while and I feel I need to get to the neurologist but the referrals are not being written correctly.

I immediately changed to another Dr but here we go again.

It's just so frustrating. I do take vitamin B12, sublingual, which my PT actually suggested.

Thank you again for your kind reply.

[Darlene]

Sitke,

It is great to have you come and be with us. You will fine a great number of dear friends to listen when you are in need of ears. Please let us know how we can help you out. You will find out we are supportive and relaxing place.

Nice to see you have come to be with us in this forum. Sue has given you some great assistance. And saw you have went into the TBI forum there two you will find some assistance.

Please keep us up to date on her condition. Again welcome, looking forward to seeing you around. My thoughts and prayers are with you.

Darlene

[Porkette]

Hi Sitke,

I'm no Dr. but it sounds like you may be having some sz. especially since you feel confused and have a headache. Don't be afraid to be open with your Dr. they can't turn you away and if they do and you need extra help call the Epilepsy Foundation of America at 1-800-332-1000 and they can direct you to a Dr. you can see along with help you out financially if you need it.
Just like you I had neck injuries also but after physical therapy I'm fine. I had the surgeries over 20 yrs. ago so I'm okay today and my sz. have reduced greatly.
You may be having sz. also do to hormones changing every month this was a hard time for me I would have sz. 7-10 before and then again after my monthly cycle later on I started taking Diamox and that reduced my sz. along with eating nuts because the nuts have progesterone in them which help calm the nerves. Here's wishing you well and May God Bless You!
Sue

[Raigne]

Sitke, it's just terrible the way you are getting the run around for what is OBVIOUSLY a medical problem that should have had immediate investigations.

I'm not familiar with Medicaid, but I'm on MediCARE and I know that you can call them and ask for an advocate to help you out as the problem is getting worse, you aren't getting the help you need and you need more dr. options if that only place in town isn't helping you.

My only other suggestion is to see if you can go to another emergency room - not the one where they didn't treat you well. When I had pancreatitis I went to this ER here and was told I had GERD. Even though my liver enzymes and bilirubin levels (they still don't know why the bilirubin levels were so high) were through the roof. They sent me home with Nexium. The next night the pain was so bad I went back and same crap, different dr but same ER.

Finally I called the dr I was seeing at the time and was told to go to a different Emergency Room. I was so thankful I did that. Within 20 minutes of walking in the door, they'd taken me back, run bloodwork and had pain meds in me.

You OBVIOUSLY have a serious situation going on - try to go to another ER. "The squeaky wheel get's oiled." You need treatment fast and by better, more caring dr's. We will pray that you get help faster than you have been.

[Sitke]

Hi Raigne and thank you very much for your reply.

I wrote an email to the Medicaid office here explaining what's been going on so maybe they can come up with something.

This morning I woke up feeling so extremely tired, felt disorientated and when I was driving to an appt stopped at Green lights as I swear I thought I was looking at Red ones...very weird.

I had some kind of dream last night but cannot remember it, all night before bed I had a severe headache.

It's so frustrating, and I do feel scared as something is happening in my brain.