Hi! I am not sure where else to turn.

Mystic

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Hi everyone. I am Misty. April 25th I woke up in a really drunk like state (I seriously thought I slept drank or something). Anyways, I stumbled to the bathroom and made it to the couch. All of a sudden I lost hearing, my eye sight went poof. The last thing I remember and felt was that my body was tingling and my hand started to curl. I don't know how long I was there for but this is what my parents and friend told me:

I wasn't making an since. I thought I talked to my parents about what happened (I live at home) and apparently I was talking to thin air. I even called my best friend an hour before she picked me up to go to the hospital. I have no memory what so ever. So I gotta go by what my parents and best friend told me XD

Here it is May 6th, I start remembering some things, and I have been in the hostiapl all this time. I had a couple of EEG ran on me, but the machine kept messing up and the dr in the ICU kept moving the machine and unplugging it.
They did see something abnormal, but couldn't tell.

Also, I couldn't feel or move my right foot, my right hand couldn't move and was just curled up. I couldn't even talk or feel my face. (What the dr. told me and my mom)

I was diagnosed with Tonic seizures with a possibility of a stroke. I regain feeling in my leg/foot. My hand isn't doing well, and my right eye my vision hasn't came back. I went and seen 2 eye drs. They both are sure I had a stroke. However, the 2nd one thinks my eye has a blood cloth on the optic nerve as well.

I was suppose to see the neurologist on the 26th of May, but it was Memorial's day. We even confirmed 3x with his office that they was gonna be there (and they said yes everytime). Nope... no one was there. So they resch. it for June 12th.

I don't have an official diagnoses. But can tonic sezuires cause me (well my muscels) to lock up and move in toward my head? Apparently, I punched my nose so hard I blooded it. and my legs were shaking and moving off the bed.

Is it tonic seizures or something else? They put me of 2000mg Keppra (1000 x2 a day) and it's helped. Well, been seizure free as far as I can remember.

How my dad put it: I get bad headaches, my blood pressure sigh rockets, and boom the seizures come. I become unresponsive, my whole body tightens up and my arms and hands curl up and automatically goes to my head. Than my legs start to kick. I was given Ativan after this happens. He told me that the longest one I had was 10-12 mins.

I have no clue what is happening. I never had high blood pressure before. The only thing I've had is 3 major surgeries on my leg (It needs to be replaced).

Hopefully someone can help me. Thank ya so much in advance. Sorry this is so long. Also, if this is messed up. It's hard typing with one hand. I am right handed go figure.

:hugs:
 

masterjen

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Hi, Misty and welcome to CWE
There are lots of great people here who can offer input and opinions to questions you have.
The muscle "freezing" or "locking" you describe can happen with tonic seizures, and often the hands to move toward the head. I'm glad the keppra has helped; that's great!
As for whether you have tonic seizures or something else, only a doctor can determine that for certain. Keep pushing to get answers. Perhaps the neurologist you see on the 12th will clarify some things for you such as was the EEG abnormal or not, do you have a blood clot behind your eye or not, do you need other testing (example an MRI or video EEG) to help determine exactly what happened initially, what is happening now during an EEG, and how this possible stroke and seizures are related.
Keep us posted on the outcome of your appointment!
 

Ms.Irene

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Hi Misty,
All I can say it sounds like a whole lot of opinions are being tossed around which has to cause great stress on you. A neurologist should be able to diagnose your condition if not find another Doctor who can. A lot of what you are experiencing I would guess is the fear of not knowing. Maybe you can find a way to see a specialist sooner. Thinking of you. I would like to know the outcome.
 

Cint

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Hi Misty,

From what you've posted, some of it does sound like you had a stroke, since you're having vision problems and you're not doing well with your right hand. It could have been on the left side of your brain, since you're having trouble with your right hand. And people can/do have seizures after they've experienced strokes.

http://www.stroke.org/site/PageServer?pagename=SYMP

Stroke symptoms include:
SUDDEN numbness or weakness of face, arm or leg - especially on one side of the body.
SUDDEN confusion, trouble speaking or understanding.
SUDDEN trouble seeing in one or both eyes.
SUDDEN trouble walking, dizziness, loss of balance or coordination.
SUDDEN severe headache with no known cause.
I do hope your doctors get it sorted out soon. Good luck with Keppra.
 

Mystic

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Thanks so much guys for all the information! It really means a lot that people do care.

What happens if I just had multi strokes with no seizures? Is keppra bad if I actually don't have seizures? (It's helping me.. so maybe I do?)

It just keeps coming.. no news is good news eh?

Went and saw my eye dr. again. He is sure I had a stroke with seizures that could have followed it. I got to go see another specialist on Friday. My first eye dr. was sure it was a stroke. My 2nd one is sure of that now with possible damage to my optic nerve. Lets see what this other doctor thinks. Still waiting to see my neurologist.

Yup.. not sure if I am gonna get sight back in my right eye. Joy..
 

daviscy60

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I've had a problem with seizures since I was 19 - 20. About 1 1/2 years ago I was in a store. At the time 52 yrs old had a seizure. I vaguely remember the paramedic asking me to squeeze his hand which I did ok with my rt hand then he asked if I could squeeze with the other hand and again vaguely remember thinking to myself that I could not feel his hand. I kept drifting in and out of consciousness. My daughter finally arrives and I don't recall him saying anything to her but she mention later that I could not use my left hand or leg said I needed to go to ER for CT scan for them to determine if all I had was a seizure or if it was a stroke. Turned out it was from the seizure. Something they call Todds paralysis. But of course only a dr would be able to make this call. After I got home looked up information on it and it did state how much the Todd's paralysis mimicked a stroke. I was fortunate that this was what it was.
 

Penny

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I had a stroke July 2012. I was 48 at the time. I awoke in the night, tried to roll over and couldn't because my whole left side of my body was paralyzed. I worked hard at physical therapy and have been lucky to regain all feeling just have some weakness on left side and foot drops a little while walking at times. I go on daily walks to help this. Within a couple weeks after my stroke the seizures started. I didn't understand what was happening at first and attributed it to something freaky happening with my bipolar (I was having simple partial seizures, several daily). Then within a couple months the complex partials too followed by generalized along with in a couple more months.
My nueroligist gave me a paper on signs to watch for on strokes and tips and such I can do to help avoid another. He said seizures after strokes are not uncommon. Talk very straight and forward when you go to your appt.. You are there for answers so don't let them sided track you.

Let us know how it goes. I will be looking for your post after. Take care. :)
 

Mystic

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Sorry for not a fast reply. This other doctor wants me to go to St. Louis to do an indepth vein/nerve study of my eye and brain. He wants me to see my neurologist (June 12th) first.

This is what the 3rd doctor said: It's something to do with my eye sight lobal of my brain. He is pretty sure I had a stroke and seizures that continued after it. My optic nerve tested positive for damage. So we are just wanting for the 12th. I was also told that my right eye was gonna be permanently blind. He doesn't think it will come back.

I thought I would keep ya guys updated. Thanks so much for all ya guys concern and thoughts. It truly means a lot!

:hugs:
 
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Schaps

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Misty-you provide no information about age and risk factors. It is interesting and totally unacceptable that your physicians cannot provide you with a clear diagnosis by now. The should have immediately referred you to a tertiary care center if they were unable to diagnose the condition. You should have had immediate MRI, CT, EEG and ultrasound studies to determine stroke vs intracranial pathology such as tumour masses vs seizures. If I were you I would have ( and would even now ) transferred myself to an academic center of expertise immediately. When I first experienced symptoms I was referred to an emergency room in New York ( not my state of residence ) but discharged myself against medical advice due to the incompetence of the ER staff and physicians. I knew that I had to get to a tertiary care facility - which is where I received a diagnosis and efficient care immediately !


Sent from my iPhone using Tapatalk
 

Mystic

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I thought I posted my age and everything, I reckon I didn't. I appolgize about that.

I am 25 years old. The only help problems I have is Asthmatic Chronic Bronchitis and I have had 3 knee/leg surgeries. I need a new knee.

I asked my parents of all the tests they did this is what I was told: I had an MRI, but they were too worried about a "supposed" brain infection. I had my spine tapped. It showed blood. They could not tell them what kind of infection I had. I had meningitis.. but what form they couldn't tell them. I was treated for that. Than they stopped it. I had 3 EEG. However, the first time the machine kept going down. The 2nd time, I was in the ICU, the nurses kept moving the machine around and pulling out my leads. The 3rd one, the ICU doctor kept unplugging the machine. They did see something of the first EEG, but it kept messing up, they couldn't get a definite answer.

While I was in the ICU, apparently I didn't get cleaned or anything. Also, my dad was with me when I had a bad seizure and the RN grabbed my arms and restrained me. He fractured my arm. It wasn't bad enough for a cast though. I got a bad case of pneumonia and a bad lung infection from the ICU as well.

My parents asked and asked them over what was going on. They did not give an answer. They discharged me 2 weeks later still without knowing that the heck was going on.

My mom said that one of my seizures lasted almost 15 minutes, and that the nurses or doctors just watched me and didn't get my anything to help. That is when they think the stoke happened again.

This is the small answer I got when I asked before I was released (from the doctor) I had a stroke, which lead to seizures. However, we are not sure if it was a stroke or not. We could not get a clear reading with the EEG as the machine wasn't working properly. However, right before I had a seizure my blood pressure sky rocketed. (Which I would apparently tell them I had a super bad headache and than boom seizure) That was it...

When I talked to my main PC dr. he said I was treated for a load of infections. Ranging from some "poop" infection which tested negative to a bad brain infection that the spine tap tested positive, but they couldn't tell us what kind of infection. It seemed all they cared about was the spine tap. Instead of the main reason why I came in there. I was given ativan to help with the seizures while I was there along with IV Keppra. They put me on zoloft because Keppra is makes ya aggressive.

As I said before, this is all what my parents told me and the last day of being in the hospital is what the dr. told me. I have no memory of being in there. :dontknow:

As of right now I am on 2000mg of Keppra a day (2x) 50mg of Zoloft and 5mg of Blood Pressure med. Since May 7th, I have had 2 other seizures. I don't remember them but the first one I went back in the hospital and they gave me more keppra IV. I just had another one a few days ago. I just took another Keppra pill (Well my dad gave me one.)

So that's my backstory if that helps. Sorry, I thought I gave out this prior. I reckon not.

My right hand is still bad, I can't write or hardly use it. My right eye is pretty much shot, but hey at least my leg/foot came back. XD
 

Mystic

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Oh, I forgot to add this. My parents asked for a transfer, but they kept refusing it saying "There was no need as no other hospital can help as we are doing". There is another hospital like 25 mins away that has a special seizure ward that is more equipped. But they kept refusing..​
 

Janus

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Oh, i am sorry that that is happening to you. It sounds a lot like the medical industry looking to make money before that want to help anyone. I do not know , for sure, if that is what is happening and yet it looks like medical fraud to me. Not releasing you? or your options for care? I wish i could in some way come help you, i am pretty good with these organizations. Best of luck
 

Mystic

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I just went and seen my neurologist today. He added Vimpat to my keppra as well. So now I am on: Keppra, Vimpat, Zoloft, and Amlodipine Besylate.

I didn't really get any answers there. He thinks that I am having tonic seizures. However since I am having 3/4 a month that sending me for a video gram in St. Louis will not work. They won't take me unless I have having multi in one day. HOWEVER when I was in the hospital, I did have several in one day. My parents tried to send me there... but the hostiapl kept refusing.

My blood pressure was up today even though I took my meds. (I am on a strict no caffeine diet since April too). He wanted me to have a higher dose of bp meds.... but Instead of him prescribing me a higher dose of Amlodipine Besylate I have to go to my PC dr. to get it. It makes no since. -__-' He won't even refill my zoloft.

Also, he said it looks like I did have a stroke. He wasn't certain. So the only way I am going to get a good answer or at least something is stop taking my meds. Have a lot of seizures again, and go to St. Louis... It's so frustrating. He wants to see me back in 3 MONTHS! Seriously? I need help, not just "wait and see". I love how I am just flicked around like a piece of sand in the wind.​
 

Janus

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aw, that sucks Is BP related to seizures? I have high PB and meds for that too. (it sort of works) and What is PC dr. ?? I know that strokes, and other injuries to the brain do need care right away for the better recovery. Have you tried going right to an ER.? I have had luck with this by going there and explaining that this is urgent! at least you can see someone.
 

masterjen

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' It's so frustrating. He wants to see me back in 3 MONTHS! Seriously? I need help, not just "wait and see". I love how I am just flicked around like a piece of sand in the wind.​
I completely understand how three months is a long time to wait for testing an answers; I've been through the waiting game also, and so have most others here. We can all relate!
It takes several weeks to a couple of months to determine how well anti-seizure medication is going to work, so this may in part be due to the wait of three months before seeing the neurologist again. But this doesn't mean the neurologist would expect you to ignore issues of concern that come up. Even if your neurologist didn't specifically say anything about calling, still call your neurologist if a change in symptoms concerns you, or like Janus says head to the ER.
 

Mystic

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Well I have another problem now.. that vimpat is 900 bucks looks like I won't be getting that med. =/ I applied for a medical card. Still waiting for it.-sighs- I can't catch a break.

I know about going to the hospital. However.. they don't care and treats my family like crud. If something happens again, we are gonna go to another one. Heck, I wasn't in my mind and was out of it and since I didn't ask to go somewhere else, they refused. HOW THE HECK can I ask to go somewhere else when I thought the president was Regan and that I could not even tell um my name? (Parents told me this) -______-'

Sorry for the rant. -hugs- I know you guys don't deserve it.
 

bighealey

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Mystic,

I greatly sympathize. Don't apologize. This my sound weird but you are helping me tremendously by making me understand others have difficulties that make mine seem like nothing.

I wish the best for you. If you want to rant, please rant, you have well earned the right to holler and vent. Yes you are venting, not ranting.

Peace
 

Janus

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Yes. I have been here a while and love it. just stick around and you will see we all have the same you are not alone. This is an amazing community. And even if one disagrees with someone on here it is safe to be yourself and if you stick around, i found that in the most intricate ways, people understand here.
 
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Mystic, Believe it or not so much of what you are going through now many of us have gone through as well....so there's no need to apologize. Perhaps not the stroke, but the medical system bureaucracy bs is unfortunately common. I'm sorry for what you are going through and you sound like a strong young lady who can get around obstacles. Since the Vimpat isn't an option, call your neurologist and see if he can call in something else. I have Medicaid so my med choices are somewhat limited, as well. My seizures are now under control but last year I was having seizures daily and the medical system was moving at a snail's pace. I felt extremely frustrated and uncared for. Welcome to the forum and I hope things start moving along soon. :)
 
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