Hello everyone, this is my plight

[MrFun]

hey Eve!

thanks for the support. I'm soooo happy that Keppra is working for you. btw your avatar is inspiring!

I'd like to give Keppra a proper shot, so I do plan on taking it for 6-8 weeks. That way later on I can't say I didn't try it properly. Next month I'm in hospital anyway, so I hope they'll find something that works. If Keppra at 1000mg doesn't do anything at all, I'm uncertain that 1500mg will do much.

Going to the dentist in 8 hours, and in an hour I'm at the GPs. I plan on telling her about everything.


I'll surely keep posting. I'm telling myself that even though it's hard, it *can* be done! At the end of this thread I want to see "I made it! I found the cause and the cure. I don't have seizures anymore and never will again". That's my goal. Right now I'm at 1%. But I will reach 100% one day and hope to inspire people as much as I've been inspired.

 

[Nakamova]

Alex --

Good luck with the dental stuff tomorrow. Let's hope it does the trick.

Sorry that the Keppra doesn't seem to be working though -- maybe with your wisdom teeth removed it will be more effective. Have you tried Lamictal yet? I ask because that often works on other facial neuralgias (whereas Keppra does not). Also any corticosteroids, or injections? (Sorry if you've already gone over this. I have memory issues, or at least that's my excuse

Best,
Nakamova

 

[Eve]

Alex, thank glad you like my avatar. I actually did some yoga today and it really helped, wasn't able to do all the poses but the ones I did helped. I had a seizure last night in my sleep and I awoke feeling like I had been electrocuted on one side of my body and my chest and left leg hurt real bad. So i was in shock for an hour and I had to take a muscle relaxer to go back to bed and then today when I awoke I was tired. So a little while ago after I did the yoga the pain in my left leg went away.

Anyway I called the dr so I have an appt tomorrow, I don't know what they are going to do , whether they will change the dosage of the Keppra or change the sez med, we'll see.

Good luck with your dental problem and get it fixed. Stuff like that can sometimes make you feel off.

 

[MrFun]

Ok. Teeth are out. They were HUGE and each one took over 45 minutes to get out. The doctor realy had to work for his money

I'm healing right now, but I do look like a hamster. Good news is that the stiffness that I used to have is exactly where the pain is now.

Bad news is, I had another seizure last night, which is two days early, considering my timetable. However, this time it felt a little different. It could be that the teeth are out, it could be the ibuprofen, or it could be the keppra finally working (1000mg). The seizure felt shorter than before (maybe because only 5 days have passed since the last one, that's not unusual) or because of all the meds I'm taking.

I'll definitely have to wait til all the swelling has gone before I make any assessments, but I am hoping that the teeth were at least a small trigger.

Weird thing is, my heart was racing before the seizure. Many the combination of all the meds or the aura. Interesting.

My pulse was at 73 bpm (last year my resting pulse rate was 56!), bloodpressure at 114/79.

Anyway, off the dentists in a bit. Yesterday everything was fine....

All the best,
Alex

@eve
It could be the muscle relaxer that made you feel tired the next day, so I'd say that's normal. Please keep us informed if you had to change meds and how you're doing! Maybe Keppra isn't the right thing for either of us?

@nakamova
Nope, never tried Lamictal or have had any injections as such. I hope once the swelling has gone down, we'll have to see how it goes.

The plan is:

- once swelling goes down and everything dental-wise is fine I can rule out my old wisdom teeth
- I do think my brain is in the habit of seizing. If the cause was the third molars, my brain might still be in the habit of seizing, so we'll still have to break those chains
- Going off keppra ASAP once I go to hospital (epileptologists), going to ask for something else
- Continuing noting down anything that comes to mind, food, computer use, TV, coca-cola, etc.

The situation might be depressing, but it ain't hopeless.

Thank you all for you support!! It really does give me a lot of energy to fight this!

 

[Meetz1064]

Ahhh

you poor soul. I feel for you in the dental category. *eyeroll* I remember having my wisdom teeth out. It sucked a hill o' beans.

I do hope, though, that removing your teeth like this will help you out a lot. And hopefully that stiffness and pain will disappear as you begin to heal. Take it easy, and don't overdo.

Meetz
:rock:

 

[Bernard]

Hi Alex, I'm late to the discussion but I wanted to welcome you to the forum. :hello:

 

[MrFun]

Thank you Bernard!!

I just had another seizure. That's the second night in a row. Very very unusual.

To recap: Massive explosion of pain in left side of face, down left arm. Wisdom teeth were extracted from mouth three days ago. Immense irritation from surgery. Two seizures so far on the same side of the face. Despite Keppra (1000mg). This would be the fourth seizure since starting Keppra three weeks ago.

I'm so seriously hoping it's the teeth. Once the swelling settles down and things normalise (3-4 months) we'll know more.

Positives effects from surgery:

+ no more stiff neck on left side
+ no more ocular headache behind left eye
+ less tension on left temple

Still left

- tension around left side of face
- seizures on left side of face/arm
- general pain from surgery

To have two seizures in a row is very very very uncommon for me. It has literally only happened twice in 8 years.

This might have been a trigger....

 

[Bernard]

- tension around left side of face

Try this: http://www.coping-with-epilepsy.com/forums/f23/headache-relief-two-tennis-balls-sock-518/

 

[MrFun]

Thank you Bernard!

I've been doing something similar to the tennis ball trick for years.

Luckily the tension around the left side of face is there from the tooth surgery and will disappear in a few days or weeks. I'm feeling hopeful that the attacks I'm having are related to the teeth. I know it might sound odd, but I hope I have a seizure tonight. That would mean three seizures in a row, something I've *never* had. That would mean that the surgery did hit the spot, my facial nerves are probably very aggitated right now. Only a few more weeks and we'll know.

I've bookmarked your link, it's a great tip! Thanks again!

 

[MrFun]

I've now been on Keppra for 21 days at 1000mg. Many people have noticed a change in my moodiness and character. I just got off the phone with my parents begging me to get off the tablets. Right now I don't know where up or down is.

I've had 6 seizures in the passed 21 days, that's twice the usual frequency. It could be because I took 10mg of diazapam on Monday (had seizures on Tues thru Thurs), maybe the withdrawal caused them. Today I've noticed auras again. Keppra is just not helping me, but is showing lots of side effects. I can't get hold of my doctor and I'm having very dark thoughts, something I do *not* usually have.

guess this thread is turning into a diary of this condition, to the moderators, feel free to move it to the right forum...

 

[Nakamova]

Good luck with it all -- maybe if you hang in there your system will adjust to both the post-surgery agitation and the Keppra. Sounds like you're keeping a good record of what is happening. Definitely keep trying to reach your doctor. They need to know what's going on.

 

[MrFun]

still can't reach the doctor that prescribed me Keppra. Other doctors refuse to help, since they don't know my case.

Had another seizure yesterday at 6:42 pm, auras today after 15:00. Left work early in a haze. Feeling very low and down, very confused. I don't know how I got home. Hospital in a week and a half. Having auras right now as I type this.

Keppra is not helping at all, but it seems to be agitating my already low mood (see initial posting). Trying to keep my chin up. I'm scared to boost the meds up a notch.

Feels like I'm losing my mind because of anxiety and depression and helplessness. Keep telling myself its the meds.

Tingling/tightness left side of face and left arm. Scared of having another painful seizure

can see why you're not fond of AEDs, Nakamova....feels like it's almost time to take a depression pill, i.e. does nothing but gives me manic depression

 

[Nakamova]

Some drugs are just the wrong match. I hope you get through to your doc -- he will probably either boost your dosage, or put another med on the table -- maybe Lamictal, unless he has reservations about it. A drawback with Lamictal is that the process of tapering onto it is fairly slow, but it is supposed to work differently than some of the other AEDs, so it might do the trick for you.

Take a deep breath. You're not helpless you're doing all the right things -- keep calling the doctors. Insist on getting someone to call you back ASAP.

 

[MrFun]

Have you tried Lamictal yet? I ask because that often works on other facial neuralgias (whereas Keppra does not).

You're brilliant! I did some research on that, and I would like to try it, and get off the Keppra, which hasn't helped at all and has given me some nasty side effects.

On the 8th I'm in hospital, and I'll see if they suggest Lamictal. If they don't, I might suggest it if I have the impression I'm not influencing their decision making processes.

Excellent!

All the best,
Alex

 

[MrFun]

*sigh*

I just got back from hospital today. Here's the lowdown:

- was weaned off Keppra (1000mg), now not taking any AEDs
- tried lyrica for 4 days and had weird reactions to that, heavy/numb thighs and itchy skin (no rash). Taken off that as well
- Had one nervous breakdown
- Had one one hour EEG with numerous vitamin b12 injections to provoke a seizure. No seizures, no changes to EEG
- Had one 2.5 hour EEG and hyperventilation test.
- No 24 hour monitoring, no "EEG monitor 'til seizure"
- Epilepsy was ruled out completely based upon my description of symptoms and video I took myself.

*sigh*. Doctors believe this is definitely not a case of E, but of psychogenic seizures of non-epileptic origin.

...to be continued

 

[Eve]

Awwwwwwwwwwww Mr Fun sorry to hear about your problems.:sad:

Were you weaned off the Keppra slowly? Maybe they weaned you off of it too quickly?

I know when I stopped taking Cabatrol (tegretol) I felt for a while that I was going to have a nervous breakdown. I think they took me off of it too fast.

I have heard other people say that sometimes seizures don't show up on the EEG. Mine never showed up on the regular EEG but when I had the EEG where I had to stay awake for 24 hours it showed some seizure activity I have the partial nocturnal seizures that almost always occur on the left side of my body at night. And I always feel it in my foot or leg and sometimes pain in my chest. And sometimes I get tingling or numbness in my hands too. My seizures always occur while I am sleeping.

Maybe you should see a different neuro? Have you had more than one opinion? I have found that in the past I have had to see several neros before I got my correct diagnosis. Hang in there we share your pain.

 

[Nakamova]

Oy! The saga continues indeed. Hard to believe your seizures are psychogenic. Regardless, do the docs have any treatment suggestions? Are you still in pain?

 

[MrFun]

Thanks!

The neurologist I visited was actually a hospital that specialises in epilepsy and it actually one of the best institutions in Europe, apparently at least. Highly specialised docs treated me and consulted professors to judge my illness, apparently.

There's a number of reasons why they believe it's not epilepsy. During a seizure, for example, I can actually make a fist with my hand. This apparently is a major deviation from the core definition of epilepsy. During yesterday's seizure, I retained full control of my entire arm, even though I did have asymmetrical uncontrolled movements.

Two EEGs were performed, including a provoked EEG with a vitamin b12 solution in a high dose. This usually induces a seizure in many people with E. Nothing. Another EEG was performed with monitor during an aura, on the day. Nothing.

No medication seemed to work. So there are no treatment suggestions, except I could continue taking lyrica if I feel like it.

They did notice however that I fainted three times during the tests because of anxiety and had an emotional breakdown last Thursday. No bad for a 34 year old guy, huh?

According to the assistant medical director there was theta activity in the temporal lobe on the left hand side, spreading to the bi-frontal lobes during one test (hyperventilation), during the test I was very tired and anxious, according to one doc these patterns are not abnormal. Her conclusion, independent of the others, was also dis-associative non-epi seizures.

MRT showed no abnormalities. The ex juvantibus with Keppra for 4 weeks showed no differences in seizure activity.

I also find it hard to believe that somehow all of these seizures could be coming from "stress" or unaligned emotional feelings. I mean, where do you start to fix that?

They completed ruled out E, and to be honest, I did feel out of place at the clinic, since my symptoms did seem to be too odd.

So what remains is: it looks like E. It feels like E, but isn't. Pain is still there during a seizure and noone really knows how to deal with the symptoms I'm having. Ugh. They suggest I seek out a pain therapy.

So I guess they helped and they did help. One thing though, they are almost 100% certain that this is *not* E. But I'm kinda back at square one again. Feels as if they patted me on the bum and said, "off you go".

*sigh*

 

[Nakamova]

Well, whatever the diagnosis, it might be good to see a counselor or therapist to deal with the stress. And have you considered acupuncture or massage therapy to help as well? No guarantees of course with this stuff, but for some people they can make a difference.

 

[Baileyjane]

Hello everyone,

My name is Alex and I've have a condition that I've been suffering for 7 years with. I'm an otherwise healthy 34 year old man and I don't have any other problems, and no heredity problems of any sorts.

About 7-8 years ago I spent excessive amounts of time in front of the computer, often that's all I did. I'd suffer from headaches pretty much all the time from eye strain or too much concentration. After waking up in the morning, I'd turn on the computer and turn it off just before bed.

One day I when to bed with the usual pressure in the head from all the staring at the screen, but this time I felt there was something about to happen. It's difficult to explain, but it felt like a seizure coming on, a certain feeling of uncertainty or dizziness, malaise. I now just call it an aura.

It somewhat came in waves and just before I fell asleep a MASSIVE pain erupted from behind my left eye, my neck, jaw, face, and left arm simultaneously. My head tilts towards the right hand side and I squint my left eye as the left side of my face and arm cramps. Erratic arm moments.

When it happens I can not lie down and have to jump up. It feels as if I am having a stroke and can barely make it to the door. I scream in pain as my entire left side shakes, cramps and basically just explodes. It felt as if someone had takes a hook and hooka an artery behind my left eye and pulls it out, jerking the nerve right down to my left fingers with it. The pain disappears after 30 seconds.

In the first year it happened once a year. Then the next year 3-4 times. The intervals got smaller and currently I'm almost at two a week, 7 years later.

I get these auras all the time now. My girlfriend left me 12 months ago, because the seizures are controlling, making me really drawn back. The breakup was very bad for me. We lived together in a very small apartment for 6 years, as my health got worse.

Right now I just put on a mask at work, just to make it home again to sit around and worry about my seizures. I never go out anymore, something I should do to get my mind off the breakup. It feels as if I'm trapped with a broken heart and an incurable disease. I get these auras all the time now. Most often they don't lead to seizures, but at least a few times a week they do

Guess my 6 year relationship dissolved because I was avoiding life. Going out to the cinemas or where people gather is risky because I'm frightened of the attack "coming". It's gotten worse in the last 6 months, so I'm rarely going to sport these days, something I dearly miss.

I've been to many doctors, blood checks, neurological exams, head MRI w. contrast agents, angiologists, chiropracters, dentists, had extended EEGs done, ECGs, had my eyes checked etc. Everything is fine and I'm "chronically healthy". *sigh*. I do have third molars, but according to the dentists, it's highly unlikely they're causing anything. Maybe they're causing my jaw pressure, possibly the strain behind my left eye. I'm planning on having the third molars removed.

My big hope is that the wisdom teeth are at least contributing to the seizures. But I do not know.

In the meantime the attacks continue to worsen. I'm at wits' end. I fear there will never be a solution, currently I'm just hoping for a cause.

In ten days I will be admitted to a specialist clinic....I'm so scared that I will never get rid of these seizures and that they'll just get worse and worse.

help (

Sounds like you could be suffering from a migrainal seizure, as your symptoms seem
very migrainal. Worth checking out with your specialist. Good luck.