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Board: Epilepsy 02-18-2016, 08:54 AM
Replies: 4
Views: 1,286
Posted By Travis from MN
Re: Newbie

Welcome to the board Ebby! I have had seizures since 1981. Been to 5 different clinics over that time. I learned after a bad experience at one facility to find an epilepsy clinic, or a doctor they...
Board: Epilepsy 01-02-2016, 11:37 AM
Replies: 2
Views: 1,245
Posted By Travis from MN
Re: When to See a Neurologist?

It wouldn't hurt to see an epileptologist or neurologist and see what they say. It could exclude epilepsy.

A dose of 600mg/day of Neurontin is *way* below the dosage they would use for epilepsy. ...
Board: Epilepsy 11-11-2015, 08:24 AM
Replies: 1
Views: 1,288
Posted By Travis from MN
Re: Can anyone help decipher/explain EEG results, DESPERATE for answers!

WARNING: NO MEDICAL TRAINING..

As a patient who had epilepsy starting 1981 I've had my go with medications over the years.

Sounds like the seizure activity is on your left side. There was...
Board: Epilepsy 10-29-2015, 08:14 AM
Replies: 3
Views: 1,852
Posted By Travis from MN
Re: Im scared of seizures . No family History . i Never had one . im 18

Only a very small percentage of epilepsy is inherited. So that would have to be your mother or father for any risk of you "inheriting" it.

Not sure what else to say..

--Travis
Board: Epilepsy 07-14-2015, 08:47 AM
Replies: 1
Views: 891
Posted By Travis from MN
Re: Any new meds

I was put on it not that long after it came out along with 2 other drugs I was already on. No problems for me on the medication.
Onfi is a newer drug, came out a little after Vimpat.
Fycompa is a...
Board: Epilepsy 06-22-2015, 11:36 AM
Replies: 3
Views: 2,089
Posted By Travis from MN
Re: Any advice on getting my 3 year old to take Ethosuximide

My mind thinks adding it to some "treat". Jello or something. Is there anything incompatible with it? Such as citrus or dairy? Make sure to check before trying.

--Travis
Board: Epilepsy 05-18-2015, 10:23 AM
Replies: 5
Views: 1,792
Posted By Travis from MN
Re: EEG Help

Keppra for the most part works good. It's a common starting medication for seizures/epilepsy today. I guess first question that comes to mind is the neuro just a general neurologist or does it seem...
Board: Epilepsy 05-18-2015, 10:12 AM
Replies: 4
Views: 1,119
Posted By Travis from MN
Re: Going off Tegretol Advice

No anxiety or emotional difference for me. I have said the following in multiple posts in the past, but I described the symptoms after getting off Teg as "a cloud being lifted". I never realized...
Board: Epilepsy 05-11-2015, 04:31 PM
Replies: 1
Views: 1,153
Posted By Travis from MN
Re: Epilepsy ward testing

Sounds sort of how I felt when I said yes to surgery over 3 years ago. Options had pretty much been used up at that point.

Are they looking at other medicine options, or possibly surgery/implant?...
Board: Epilepsy 03-16-2015, 08:33 AM
Replies: 2
Views: 1,041
Posted By Travis from MN
Re: In hospital don't want to go

Do you have any other options? RNS/DBS/VNS? I know what it can feel like. I've been on 12 or 13 meds over the years, as bad as 4 at the same time. I ended up having surgery little over 3 years...
Board: Epilepsy 03-16-2015, 08:29 AM
Replies: 4
Views: 1,119
Posted By Travis from MN
Re: Going off Tegretol Advice

Ok, so you are at 200mg/BID. That is a VERY LOW dose. I was between 1400-2200/day when I was on it.

Teg takes 14-21 days to level out in our systems if I recall. Usually this is looked at when...
Board: Epilepsy 11-13-2014, 10:38 AM
Replies: 2
Views: 1,300
Posted By Travis from MN
Re: Lamictal Blood levels, what is OK, as long as med is working?

Patients can have labs above range and still function. It really depends if the patient is having and side effects. If no symptoms then make note but often nothing is changed.

I have had high...
Board: Epilepsy 10-28-2014, 08:45 AM
Replies: 3
Views: 1,608
Posted By Travis from MN
Re: what does it mean when your records read :partial epilepsy"

I'm thinking it might mean focal seizures...but you'd have to clarify that with the doctor.

--Travis
Board: Epilepsy 10-20-2014, 09:53 AM
Replies: 12
Views: 4,501
Posted By Travis from MN
Re: new to epilepsy, daughter just diagnosed

I had some issues with Trileptal because of my dose. They had me on MAX dose (whatever that is, 2400/day) originally 2x/day. I had issues with that and consulted my doctor and he approved of me...
Board: Epilepsy 09-08-2014, 07:30 AM
Replies: 4
Views: 3,288
Posted By Travis from MN
Re: Need answers...

What type of doc do you see for your epilepsy? Some of us see epileptologists (Neurologist with focus training in epilepsy). They tend to know what they are doing when compared to general...
Board: Epilepsy 08-07-2014, 07:22 AM
Replies: 1
Views: 2,546
Posted By Travis from MN
Re: had a question

The description is on the vague side. I would **GUESS** it is along the lines of a SP or aura based on what you posted. It is possible to have seizures without loosing consciousness or physical...
Board: Epilepsy 06-17-2014, 08:37 AM
Replies: 12
Views: 4,501
Posted By Travis from MN
Re: new to epilepsy, daughter just diagnosed

Let me try my best. I've had seizures since I was 5 (1981).

do EEG readings vary?
YES they vary. Often times a patient with seizures will go in and they won't capture any abnormal readings on...
Board: Epilepsy 06-13-2014, 08:06 AM
Replies: 1
Views: 1,051
Posted By Travis from MN
Re: Help! Lamictal

There are some of us who have a rash caused by lamictal if I remember correctly. If this sounds like your symptoms give your doctor a ring and see what they say.

In my case I was on 800/day of...
Board: Epilepsy 06-06-2014, 03:53 PM
Replies: 9
Views: 1,723
Posted By Travis from MN
Re: Will drivers license get pulled?

She SHOULD tell her doctor. When I was in high school I had my license pulled 3x. At the time you had to be seizure free for 6 months in MN to drive. If she doesn't have control it is not worth...
Board: Epilepsy 05-27-2014, 10:11 AM
Replies: 5
Views: 2,361
Posted By Travis from MN
Re: Partial Seizures with Clean MRI/EEG

Can you think of any possible triggers? Stress, caffeine lack of sleep? Trying to think if there is anything they can do in clinic to cause one. If you husband sees one happening again I'd say...
Board: Neurofibromatosis 05-11-2014, 06:31 AM
Replies: 1
Views: 5,539
Posted By Travis from MN
Re: Tumors seem to be getting worse.

Sorry I have not checked this thread in a while Robert. The thought I remember reading that it is adolescence and for women who have it pregnancy can also trigger (reactivate?) it IN MY OPINION...
Board: Epilepsy 04-14-2014, 07:41 AM
Replies: 2
Views: 1,085
Posted By Travis from MN
Re: Seizures/talking

With my seizures originating from the left hemisphere I would have problems with speech. Even if the seizure had ended and I was in post-ictal stage I could comprehend what was being said/asked but...
Board: Epilepsy 03-29-2014, 08:01 AM
Replies: 8
Views: 9,940
Posted By Travis from MN
Re: Keppra (Levetiracetam), Weight & Mood

Keppra levels out pretty quick, within 24 hours the serum is normalized in our bodies. Half life is 6-8 hours if I remember correctly.

I'm on 4000/day of Keppra (down from 5000). Increases of...
Board: Epilepsy 03-18-2014, 08:27 PM
Replies: 2
Views: 1,178
Posted By Travis from MN
Re: Could Epilepsy Explain... ?

Let me try to address this to the best of my abilities point by point.

intermittent severe fatigue:
Feeling exhausted can be understood AFTER a GM. Not off/an during the day. I've experienced...
Board: Epilepsy 02-24-2014, 04:54 PM
Replies: 5
Views: 1,064
Posted By Travis from MN
Re: sun induced seizures?

Sounds like a photo-epileptic seizure. When they did the EEG on you did they ever activate the strobe light to see if that would trigger activity?

From what others have shared, it can even be as...
Board: Epilepsy 02-14-2014, 01:39 PM
Replies: 5
Views: 1,287
Posted By Travis from MN
Board: Epilepsy 02-12-2014, 12:44 PM
Replies: 5
Views: 1,311
Posted By Travis from MN
Re: daughter has had 2 seizures

1) are there conclusive tests for epilepsy. It is my understanding that unless someone is regularly having seizure activity then EEG may just be normal.

Well, there are tests than may indicate...
Board: Neurofibromatosis 02-12-2014, 12:34 PM
Replies: 3
Views: 9,859
Posted By Travis from MN
Re: pain

It depends. Neuro-oncology is a good "general" doctor to see for this. They may refer you to a certain doctor at the facility. Some facilities have NF experts. I go I see a NF expert once a year....
Board: Epilepsy 12-02-2013, 08:31 PM
Replies: 3
Views: 1,514
Posted By Travis from MN
Re: sudden seizures at 27

If you are on the trileptal now the caution I'd advise is make sure they keep an eye on your sodium levels. That was the problem for me when they had me on 2400mg/day of it (along with other meds). ...
Board: Epilepsy 11-26-2013, 10:00 AM
Replies: 3
Views: 1,421
Posted By Travis from MN
Re: Left temporal lobectomy

they did a left anterior temporal lobectomy for me roughly 21 months ago.

The complication I ran into was the fluid (CSF) was not integrating back into the body and building up in the skull. I...
Board: Epilepsy 11-11-2013, 01:50 PM
Replies: 4
Views: 1,511
Posted By Travis from MN
Re: Seizure prob need help

I wouldn't stress on 500mg/day of Keppra. I'm taking 5000mg!! 3000 is considered max (but there really isn't a maximum). I think the doc wants to make sure you will not have seizures before...
Board: Epilepsy 11-11-2013, 01:38 PM
Replies: 3
Views: 1,722
Posted By Travis from MN
Re: Side Effects from Trileptal -- Need advice!

They had me on a pretty heavy dose of the Trileptal. I was at 2400mg/day along with two other drugs. I felt toxic often after taking the dose, that would fade away after a couple hours. What...
Board: Epilepsy 05-21-2013, 07:10 AM
Replies: 1
Views: 857
Posted By Travis from MN
Re: Withdrawl from tegretol

Did the doctors stop the med or did you do that on your own?

Teg has a half-life of about 8-10 hours if I recall. When I was taken off of it, it was done in hospital for safety, and only in a few...
Board: Epilepsy 04-16-2013, 05:24 PM
Replies: 4
Views: 1,185
Posted By Travis from MN
Re: Does anyone know?

You do NOT want high dilantin levels in your system! The range the doctors look for is between 10-20 for Dilantin.

When a new (to me) medication was tried, it caused rpid weight loss and I never...
Board: Epilepsy 03-28-2013, 08:03 AM
Replies: 5
Views: 1,105
Posted By Travis from MN
Re: need some help

If Dilantin has been controlling his seizures why do you want to rock the boat? Usually if the first medication is working you don't want to mess with it. The chance rate for control continually...
Board: Epilepsy 03-26-2013, 07:45 AM
Replies: 9
Views: 1,639
Posted By Travis from MN
Re: Would you ever consider going off of your AED's?

When they removed me from Tegretol what a difference !! I described it as "a cloud being lifted". My response was much improved, I didn't feel as dampened as I had been before.

It has been over...
Board: Epilepsy 03-21-2013, 10:19 AM
Replies: 2
Views: 1,118
Posted By Travis from MN
Re: What the best drug for epilepsy

I have to agree with Nicole. There is no "best drug".

I've been on quite a range from the oldies such as Dilantin and Phenobarbital to later drugs like Depakote and Tegretol, to ones that just...
Board: Epilepsy 03-14-2013, 10:32 PM
Replies: 5
Views: 1,162
Posted By Travis from MN
Re: Anti-Seizure Medcine causing sleepiness?

The pharmacy recently changed the generic I have for one of my meds. I noticed a couple days after starting on it I **needed** a nap. I don't nap . If I do, usually I'll sleep 6+ hours. Mind you...
Board: Epilepsy 02-26-2013, 09:41 AM
Replies: 3
Views: 942
Posted By Travis from MN
Re: lower dose of tegretol after 18yrs n had a grand mal

What I had done was in hospital reduction of tegretol. They lowered it while having me on observation and EEG. The doctors know how quick they can safely reduce the medication and not cause...
Board: Epilepsy 02-07-2013, 09:43 PM
Replies: 4
Views: 1,002
Posted By Travis from MN
Re: Medication = No More Dreams

I have not had frequent dreams for years now. I might be able to recall a dream once every 2 months if that. Only constant (medication) has been Keppra. So possible it is the medication. I would...
Board: Epilepsy 01-13-2013, 11:35 AM
Replies: 1
Views: 1,106
Posted By Travis from MN
Re: Seeking keppra help

I had a depression that set on when a doc upped me from 3000/day to 4000/day of Keppra. The symptoms set in within a couple days of starting the new dose. The Dr ignored my complaint. I toughed it...
Board: Epilepsy 11-12-2012, 07:43 AM
Replies: 5
Views: 1,749
Posted By Travis from MN
Re: Complex partial seizure... ???

Sounds like a seizure. I don't know whats down by you, but get in to see either a neurologist or epileptologist. See what they suggest. The higher level epilepsy clinics (level 3 or level 4) are...
Board: Epilepsy 10-20-2012, 09:34 AM
Replies: 1
Views: 1,396
Posted By Travis from MN
Re: Do I really need medication ?

I would say follow the doctors orders. If in a few years you have not had any seizures then ask the doc if you can be taken off of the medications.

Also let the doctor know if you are having...
Board: Epilepsy 10-17-2012, 09:46 PM
Replies: 2
Views: 1,275
Posted By Travis from MN
Re: Vitamin D3

My doc also mentioned the less light we have in the winter. I'll be getting more than an hour of extra light this winter when I'm down south compared to up here.

However the primary reason was it...
Board: Epilepsy 10-16-2012, 09:20 PM
Replies: 2
Views: 1,275
Posted By Travis from MN
Vitamin D3

It was suggested by a doc (not my epileptologist) that I take Vitamin D, as in D3, do help prevent bone related issues common in persons with the genetic condition I have.

I have not yet research...
Board: Epilepsy 08-06-2012, 07:33 PM
Replies: 2
Views: 1,431
Posted By Travis from MN
Re: Long term use of Dilantin in children?

Dilantin? I'd say more dental problems than anything else (wrecks teeth).

--Travis
Board: Epilepsy 08-04-2012, 08:54 PM
Replies: 2
Views: 1,051
Posted By Travis from MN
Re: whole story

IF the Doc thinks it's ok to taper off Dilantin, and if you decide to, based on my experience on it, I would say taper off SLOW. By slow I mean 30mg/wk reduction. So you would likely need to get a...
Board: Epilepsy 06-19-2012, 11:09 AM
Replies: 2
Views: 1,245
Posted By Travis from MN
Re: Driving and seizures

I just had my driving license reinstated after 16 years of being suspended due to seizures. The state wants me to take the road test, but that shouldn't be a problem.

When the seizures reared up...
Board: Epilepsy 06-07-2012, 08:42 PM
Replies: 5
Views: 2,901
Posted By Travis from MN
Re: Seizure meds + kidney/liver function

There's also the Liver Function Test they did at times when I was on Tegretol.

Best advice is to ask your Doctor. Let them know your concerns. If they dismiss it let them know your desires.
...
Board: Epilepsy 06-06-2012, 09:36 AM
Replies: 5
Views: 2,901
Posted By Travis from MN
Re: Seizure meds + kidney/liver function

That might need the CBC panel. My doc would run that 2x/year. Some may only run than test once a year.

--Travis
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