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Giving up hope

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Old 09-30-2007, 07:35 PM   #1
Join Date: Sep 2007
Location: Maryland
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JulJul22 HB User
Giving up hope

I have been suffering from weird episodes since I was 12 years old. Almost 11 years now. I remember my first episode like it was yesterday. I was sitting on the couch watching TV when an emergency broadcast system test came across the bottom of the screen. I don't really know what happened, but I got a horrible feeling through out my entire body. I felt this horrible feeling in my stomache and a weird taste in my mouth. I was conscious but terrified and tried not to move. I felt as if I had left my body or something. De ja vu.

This episode lasted for about 30 seconds. The next thing that I knew I threw up in front of the chair (after eating hot fries!!) and felt extremely tired and passed out. My episodes have changed a little since time has passed. I do not throw up after but I still get crazy tired. When I was a child, I would have up to 5 a day but didn't throw up every time. I only have about 3 episodes a month now. I avoid things that trigger them such as different noises and going through the tunnel.

I have had a ambulatory EEG (normal) MRI (normal) ENG (normal) I had to see a ears nose and throat doctor because I get vertigo when I come off of elevators. I am under weight (80 pounds!) and unable to put on weight and have stomach issues. I'm thinking that I should go see another neurologist because I truly think that I am suffering from a form of epilepsy. I can use any information that you may be able to give me. They happen when I'm driving!

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Old 10-01-2007, 01:09 AM   #2
Join Date: Oct 2006
Location: Porterville, CA, USA
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Re: Giving up hope


Do not give up hope. What you had before you had a seizure was an aura. An aura is a feeling that you are going to have a seizure. I have epilepsy.

Just because the tests come out normal, means you just did not have a seizure during the test. That happens to me all of the time. Even though the docs know I have epilepsy. When you have an aura, do not eat anything. You will get sick everytime.

You need to see a specialist about losing weight and being so thin. Talk to your doc about it and he/she will help you.

Do not give up hope.

Love Ruth

Old 10-02-2007, 08:11 PM   #3
Join Date: Sep 2007
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mezzedup HB User
Re: Giving up hope

I agree with Ruth (porterville). I will only add a detail. You mentioned avoiding 'things that trigger them such as different noises and going through the tunnel'. Have you noticed if some food were triggers themselves?

The 'tunnel - lift (elevator)' could be a trigger but could also be a psicologic issue (they are for me) that is why I am wondering if you are suffering of epilepsy alone or a double problem : neurologic and psicologic.

I'd discuss this with your Neurologist and ask him directly to enlight you about this issue. Should it be the case he will assist you with this issue or will suggest you to seek psicologic assistence should it be the case but do not remain in the dark (the not knowing state) as it only aliment your worrying and stressed out.

I wish you the best and let us know the outcome once you have cleared this up with your Neuro. Your answer could help others that will come across similar issues in the future.

Take care of yourself JulJul

Old 10-02-2007, 09:05 PM   #4
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Re: Giving up hope

JulJul22 I had seizures for 20 years and my first one started the same way b watching tv and an aura. I never throw up after any spells or b4, but remember that ur nerves lose control during and an attack and it seems that they alter ur stomach during these spells. I agree w the ladies in avoiding those things that causes an aura (de ja vu) feelings, and foods that upset ur stomach especialy during those times. Its not easy especialy putting up w those auras which i had everytime, but not impossible. It does sound like a type of seizure, but only ur neuro w more studies and research can help u define it. I wish u the best of luck and please keep us updated, we r here for u

Old 10-02-2007, 11:45 PM   #5
Travis from MN
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Re: Giving up hope

I was trying to think deeper on your post. When the EBS interupt comes on television, the tone they use tends to be a 1kHz tone usually. In other cases they use a "sqwak" tonal alert that is a poly frequency (very annoying) around 750Hz with a 2.5k overlay it sounds like (from memory).

It could be that sudden changes, such as a car alarm going off behind you in the parking lot, or stobe lights activating in the hallway make your system "jump" a little bit due to the suprise (for possible "triggers"). It is the nerves reacting that cause the seizures.

I'm suprised they have been unable to recreate the symptoms in the tests you have taken. Best of luck.


Old 10-03-2007, 10:07 AM   #6
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neurowreck HB User
Re: Giving up hope

Don't give up.

I've had seizures for 20+ years, and have been on many meds. Some years are better than others - going through some rough times now, but for 19 years I worked in management positions, and had a pretty normal life- the thought is I'll be able to do that again.

There are good doctors around. You're near Johns Hopkins- any chance of getting in to see them? They are world renowned for so many things- and if they can't figure things out, they know who can. And they computer-connect with health care centers around the world. Even if your insurance doesn't cover all of their charges, see if they have any charity coverage- some places will cover a portion, and help you out, or set up a payment plan. Or just go, and pay the collection agency; they essentially have to take what you send them each month- it's not like you went to Tiffany's and bought out the place ! You deserve answers- and some help. Keep looking

Old 10-03-2007, 11:52 AM   #7
Join Date: Sep 2007
Location: Maryland
Posts: 400
JulJul22 HB User
Re: Giving up hope

Thank you all so much for responding to my post!!! It makes me feel so much better just to be able to talk about my episodes since I usally hide them. I feel so special!
Travis, my episodes happen when ever they like. As a matter a fact, two nights ago I had one in my sleep. The noise that a computer makes when it is starting up and the sound of a fax going through will cause a episode. Images dont trigger my episodes. I even have them sometimes when I yawn. lol
I have watched things on the computer that could cause seizures but they didn't make me have one. I noticed that if I am tired, I have them more. When I had my EEG they were going to have me watch a light or something but it was broken at the time so I didn't get to do that part of the test. As for eating, when I was young is when I would get sick afterwards. I would feel perfect before I started to get the feeling but after the episode was done, I would get sick. Now I just feel out of it and tired. Its rare if I get sick now as I am so used to having these.
As for the elevators, I only get vertigo when I get off and it feels like the ground is moving. That started about 3 years ago after I got off an airplane. I fell like a dumie on the ground. Thats when my doc sent me to a ENT and had my ears checked. I had a good balance of fluid in both ears. I have alot of health problems and I'm passed the point where I think its just me being crazy because I'm 80 pounds and have a child to raise!!!
My sister just told me about something that she watched on Mystery Diagnosis. A little boy had MANY of the problems that I suffer from and he had CELIAC DISEASE! I looked it up last night and was suprised that my doc didn't check me for this yet. I will go back and have blood work done for CD but I am going to a different neuro. I didn't like my last because the tests came back okay and he said that I must be having head achs. Didn't seem to professional to me. He also found a CALCIUM DEPOSIT on my brain and didn't think that that was a big deal.The neuro that was at the other hospital when I was being connected to the ambulatory EEG said that she was 99.9% sure that I was having partial seizures.
Sorry guys.......I needed to vent! Lol

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