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Old 11-14-2002, 05:33 AM   #1
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Lisa T HB User
Unhappy Where to turn?? Its bad this time!

Hello everyone! Please pardon my typing, my shaking is awedful today so bare with me.

Many of ypou have read my posts before so I won't bore e you with my life. I went to a psychiatrsyt and she told me she felt it was not puesdoseizures but something medical. So know I can prove this isn't in my heasd! Maybe some doctor might give a darn now.

Anyways, this is where I'm at now. Sunday i had a seizure on the stairs. My husband found me about two hours laterrr. He figures I went backwards down them. Since then I have had atleast 20 seizures and these awful shakinggg spellsss. they are almost like seizuresss but i'm fullllly functional duri ng them. i can talk, not complete sentenceeeees, but i can communicate. what should i do? i'm not eating because i chokedd on ffood yesterday because my seizure took me by surprise. i'm scared to death. i'm supposed to go to work tomorrow, but that is absolutely out of the question. where do i turn? I have no doctor. i'm on no meds. is the er the best place to go? i do have an appointment with a neurosurgeon on the 20th of december. (my neck)

i'm so weak. i blackout just going to the bathroom. i know i should go to the hospital, but are they going to help this time. if eel so alone

sorry, my shhhakess are getting worse
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Old 11-14-2002, 06:00 AM   #2
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Hi - yes please go to the hospital. You will have to be patient but I'm sure you already are. Give the Doctors the worse case scenario of what has been happening and how you are feeling about it.......if possible, take you husband with you to advocate.......good luck.......Paula
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Old 11-14-2002, 06:09 AM   #3
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Lisa,

I would find a neurologist as soon as possible. The hospital will help you too, but only temporarily. When my boyfriend used to go to the hospital all they would do for him is shoot him up with Diazepam and let him sit there for two hours and then let him go. They would give him a prescription also, but only enough to last him a couple of days. You're best bet is getting a doctor to help you. And you're definatley going to have to get tests done, like an EEG and get some meds.

I'll be thinking of you and take care.
Bridgette

------------------
Grieving over my boyfriend, Ray, who passed away from epilepsy on January 31, 2002 at the age of 23.

Ray suffered from myoclonic and grand mal seizures.

Loving father to our seven year old daughter.
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Grieving over my boyfriend, Ray, who passed away from epilepsy on January 31, 2002 at the age of 23.

Ray suffered from myoclonic and grand mal seizures.

Loving father to our daughter, Colleen Rae.

 
Old 11-14-2002, 06:33 AM   #4
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I have been through this whole "They're psuedosiezures, not epileptic seizures" thing with various doctors and hospitals in relation to my husband, who had encephalitus and was very very poorly for a while and wasn't able to take care of himself for the first year. It took grit determination on my part to get his seizures investigated thoroughly. To get my husband the right treatment I took him to A&E (ER) and refused to take him home until he was admitted and moved on to the right hospital. I made sure his parents were not around and told the A&E doctors and nurses that I would be leaving the hospital and that I would not be home for the next 6 months, so they might as well deal with my husband now. There was a lot of angry people talking to me that day, but I stuck to my guns, and after a 24 hour fight, and threatening to leave, eventually they did admit him, and with more work from myself, I managed to get him into a specialist neuropsychiatry unit, which is were his epilepsy was diagnosed 18 months after the seizures had started. His original neurologist told us that he did not have epilepsy and was suffering from psuedoseizures. This was not because she was a crap doctor, but because she did not have the specialist knowledge to diagnose him properly.

The moral of my story is, go to the hospital, and don't be intimidated or fobbed off. Make sure you see a neurologist initially, and that you are referred to an epitologist asap. Even the most specialist doctors are not always able to tell if a seizure is epileptic in origin or psychological just by talking to you or seeing you have a seizure. They more often than not, need specialist equipment to be able to test seizures and tell whether they are epileptic or not. So don't let your GP or ER doctor or any other Consultant tell you this is not epilepsy, unless they are an epitologist and they have witnessed your seizures whilst you are attached to an eeg machine. Only then can they tell.

You are going to have to be strong, I just wanted to give you some info to fight with. I hope this helps. If you have any other questions, I'd be happy to reply.

Call a cab, get your coat, and get down that hospital now!

Good luck
Candida.

 
Old 11-14-2002, 07:11 AM   #5
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Lisa I see you are in Ohio ...how close are you to Kettering? I know of a wonder Epileptolist there..... hes just great...

 
Old 11-14-2002, 07:43 AM   #6
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Lisa - What is wrong with your neck that you are going to see a neurosurgeon about? What part of your neck? What happened - falling during a seizure? Have you tried a chiropractor? Please know that I am praying for you and hopefully others will too. Please keep us posted on how you are doing, but sounds like you need some immediate help right now.

 
Old 11-14-2002, 10:49 AM   #7
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Lisa,
Please go to the hospital now,you really need to see someone straight away.please go!
I feel for you.
garry

 
Old 11-15-2002, 08:32 PM   #8
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Unhappy

Thanks for all your support, I really needed it.

I went to the er last night and sat. They did an ct scan of my head, x-rays of my neck (still tender from my fall) and blood work. All were normal. So they were going to discharge me, well did. As I was walking with my husband past the doctor to the door I got dizzy and down i went. At that point they decided maybe they should keep me over night. All had witnessed my seizures, my shakes, and now my dizzy spells. They did nothing in the er for me. They took me upstairs to my room. They gave me an iv and that was it. They let me contnue to have the shakes and my seizures. My husband got someone everytime they happened so it would atleast be put in my chart. My doc finally came in at noon today and said he had no idea what to do for me, that next time my husband should take me to one of the big hospitals in the state. I could/can barely walk and they discharged me from the hospital, with my discharge papers saying if problems persist find another hospital. Shouldn't they of atleast transported me somewhere else? They did no consults with any neurologists or anyone. I could of stayed home and atleast been comfortable with my surroundings. Why go? They did give me a prescripition for Xanax. Anyone heard of this? It completely knocks me out. My legs begin feeling heavy, then my movement are akward, and then I'm out. They said to only take till Sunday (three times a day) because it can be very addicting. This drug scares me a little because I'm so completely unaware when I'm on it. But yet While its in my system I don't have any of my problems, but isn't that only because I'm so drugged up? When it wears off I'm right back to all the fun stuff.

Bluebird- I have heard of Kettering. What is different about an epotmologist?? I'm open to anything!!!! Please let me know more.

lazoo- My neck is really out of whack of an old injury in elementary school. I was going to a wonderful chiro, but after he would work on me, within 15 minutes I would go into a seizure or staring episode. Once we figured that out (that he could produce them) he has talked us into seeing a neurosurgeon because he feels the problem is in my neck. Which we do too. How can it not be if he can bring them on????? I don't go anymore because it would be to easy to do more damage. Thats why we are looking into a surgeon. Can't hurt to get his opinion. I just wish my chiro was a neurlogist or neurosurgeon, because he is wonderful. He even has called to check on me. He is a wonderful and caring man, I only wish more doctors had his bedside manner!!!!

Candida- I feel for your husband, glad you were so stubborn. Unfortuanely the blow off is exactly what we got. I'm pretty sure my doc (hes my family doctor) still believes its in my head, even though he did witness my "spells". I told him I followed thru with the psychriatrist, that they believe its medical and not psychological and he just shook his head. He even saw how bad of a time I had walking to the bathroom, I was shakey and dizzy- but he didn't seem to be fazed at all. I'm going to discharge you. Hes done, out of my picture, Can't believe I ever felt loyal to him. Trusted is a better word I guess. I always checked with him when I had a new appointment, to get his opinion. I'm on my own now, well I still have my family.

MissingRay- I have been reading all your posts! What exactly is diazepam? They wouldn't give me anything for my seizures. Mine are considered mild, but they still take a toll on me (especially after five days of them). What I would do for a Hot steamy bath!!!(that is absolutely out of the question)(I posted about that a long time ago if you are curious). Neurologists have been of no help to me so far. The one was even nice enough to put in his notes that it IS pseudoseizures, so when my husband took me to the er at cleveland clinic the neuro on duty refused to look at me because of that doctors notes in the system. I haven't been back ther since I went to the psychiatrist, but I can now prove them wrong. The ball is officially back into the medical field. Alot of good that has done me this week though.

To all of you I apologize for my moodiness. I'm usually pretty good at finding the humor to everything, but right now I feel so defeated. I'm starting to get a little sluggish from this pill I took (anyone of you know anything about it? Xanax) Thanks for everything, its really nice to know I can turn here when my family just can't understand how defeated I feel. Thanks! I hope you all are having a quiet and peaceful day!!!!!

Lisa
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Old 11-17-2002, 04:41 AM   #9
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hi lisa,
hope you're well.Zanax is a sedative,and is prescribed for anxiety,depression,panic disorders and insomnia.It is a member of the benzodiazepines group of medication,but what surprises me about them giving you xanax is it can exacerbate grand mal siezures.
garry

 
Old 11-17-2002, 02:14 PM   #10
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Lisa - May I ask what vertebra in your neck seems to be injured. My child has had continuous problems with her neck, very top vertebra. Shooting pains on that side of the head, hard to turn head all the way to that side, etc. When she was out of gymnastics this summer went seizure free. I'm trying to figure out how much this has to do with her illness. Thanks.

 
Old 11-17-2002, 07:13 PM   #11
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Unhappy

I'm back! What an awful week. But I finally found some light at the end of my tunnel.

couldbeworsaspose- I have no clue why they would prescribe this. But I took it having faith that he knew what he was doing. I was wrong. I ended up back in the hospital Thursday night after having fourteen seizures in a row. The shaking spells were out of control, I was just a mess! They now have me on dilatin(sp). I seem to be responding to this so far. I just got home today, so.....we will see. The er doc said he would take a stab in the dark and say it could be Jacksonion seizures (I'm not sure if that is the correct spelling or wording, I was pretty doped up and my hubby was a wreck) I'm to see a neuro tomorrow, so cross your fingers for me.......... Any info you know about this? And thanks for thinking of me.

lazoo- Long story half way short....When I was a kid I would hang upside down on the monkeybars, I fell straight down on my head one time and never had it checked out. Least that is when we think this happened. Anyways it is my first 7 verts.(C1 - C7) They are twisted in all different directions. But ALL the neuros I have seen says its not possible for a neck injury to cause seizures. I don't know! Seems funny my chiro can bring one on, but what do I know I just have them!!?? Has your daughter seen a chiro?


Are there any bad side affects with dilantin??
Hope everyone is having a quiet and peaceful night!

Lisa
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Old 11-17-2002, 07:53 PM   #12
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Lisa,

I hope things start looking better for you soon.. I'll keep you in my prayers...

God bless
Koko
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Old 11-18-2002, 05:43 AM   #13
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Thanks Koko! You have always been there for me! How are you?
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Old 11-18-2002, 09:39 AM   #14
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Lisa - My daughter is seeing a chiro, can't say if its helping or hurting. It doesn't bring one on.

 
Old 11-19-2002, 11:18 PM   #15
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Lisa,

Do me a favor and type in Seizure alert dog in your search engine and read on this a little.. Also I hope you have been feeling a little better If you don't like dogs don't do it

Hugs
Koko

[This message has been edited by Kokopelli (edited 11-20-2002).]
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