Seizure patterns that change

[Bernard]

Stacy's seizure patterns have changed quite a bit over the years. I've read in various forums where others have also experienced changes to long established seizure patterns.

I was wondering if people who always had auras ever started having seizures without them. Anyone have firsthand experience or secondhand information on this?

[lindy]

I have never had a grand mal without an aura first but my seizures sure have changed over the years. Started out with partials when I was 11 - nocturnal grand mals at 21 - the nocturnal grand mals started showing up at any time of the day or night when I was 40. Plus the frequency of the seizures increased over time.

[Dianne]

My sons history is absence seizure'x since age 12, tonic-clonic since age 18. He had three tonic-clonics, one per year, then no further tonic-clonics for five years. Stupidly I thought, that might be it, although the absence continued. All of these tonic-clonics were preceeded by an aura of around 4 hours which consisted of multiple absence seizures which would go status followed by the tonic-clonic

Now it has changed, and some, to the extent that I am walking on eggshells

Five weeks ago my son had a tonic-clonic with no aura, followed by five hours of absence-status and another tonic-clonic. Thursday night exactly the same thing happened again, but this time there was a worsened state of confusion after the first seizure

He is treated with sodium valproate and lamotrogine. Due to the fact that I am running out of egg-shells to walk on, I am considering looking at diet and vitamin therapy, maybe also alternative therapies to reduce stress-levels

I need to buy more egg shells too

Dianne

[lindy]

I never had any success with controlling my seizures until I gave up on the conventional approach and stopped taking all of the drugs. I am now as seizure free as I have been since this whole thing began and it has been almost 15 months since my last seizure. I started to take B complex, magnesium, taurine, CoQ10 and flaxseed oil five years ago and it has all been a Godsend. I have now added 5-HTP to the mix to help with panic/anxiety attacks and wish that I had started to take that sooner. I think that doctors are beginning to accept that, with some people, there may be a nutritional problem which is causing the seizures. At Dartmouth-Hitchcock, their standard approach now for a first time seizure patient is to tell that person to take a multi-vitamin daily and to rest, instead of automatically giving that person a prescription.

[Bernard]

Five weeks ago my son had a tonic-clonic with no aura, followed by five hours of absence-status and another tonic-clonic. Thursday night exactly the same thing happened again, but this time there was a worsened state of confusion after the first seizure.

I'm so sorry to hear this Dianne. If it makes you feel any better, Stacy's seizure patterns went from:

• tonic-clonics once every two years, absense, jerks, etc. fequently (while taking meds)
• 4 years completely seizure free (no meds)
• tonic-clonics, jerks, atonic/drops infrequently (I don't have an exact periodicity for this timeframe) no meds
• tonic-clonics once a week to once every two weeks (while taking meds)

Just a few months ago, the situation was pretty bad. Stacy was confused all the time and having problems with her memory recall.

But, now she seems to be responding really well to Dilantin (for the tonic-clonics) and the LENS neurofeedback. Her cognitive functions are improving - she's not so confused anymore and is finding it easier and easier to remember things again. She hasn't had a tonic clonic since March 14 - seven weeks ago! It's probably been at least two years since she went this long without one.

The point is, even if things get scary bad, there is a light at the end of the tunnel (you just have to find the right tunnel!).

[Dianne]

I'm so sorry to hear this Dianne. If it makes you feel any better, Stacy's seizure patterns went from:

• tonic-clonics once every two years, absense, jerks, etc. fequently (while taking meds)
• 4 years completely seizure free (no meds)
• tonic-clonics, jerks, atonic/drops infrequently (I don't have an exact periodicity for this timeframe) no meds
• tonic-clonics once a week to once every two weeks (while taking meds)

Thank you for your kind thoughts Bernard

I'm no epilepsy expert but there seems to be a pattern here, your wife appears to be much better when not taking meds, or maybe the meds werent suited to her needs, possibly the way she was metabolising them or something along those lines

You're right though, I am pretty much pulling my hair out at the moment. To the extent that I am beginning to look at alternative therapies as unbelievably, I dont believe that main-line drug therapies are always the answer - sometimes a combination of main-line and alternative therapies are far more therapeutic. We just have to search

So now I'm searching

Dianne

[Bernard]

Dianne, I just mentioned the seizure patterns, I didn't list the treatments and other things that were going on at the time of the major pattern changes (correspondingly):

• diet, supplements, sleep and EEG Neurofeedback
• Delivery of our first child
• Pregnancy with our second child

The medical industry only recognizes, teaches and promotes drugs, a ketogenic diet, surgery and VNS as therapies AFAIK. All the wonderful benefits of neurofeedback, 5 HTP, Gaba, B vitamins, etc. are things you need to discover for yourself unless you have a very progressive doctor.

You are ultimately responsible for your own health. You need to be your own best advocate IMO.

[Dianne]

Bernard, if I have caused offence I apologise

Unfortunately my sons E has gone through 4 stages now

• absence only

tonic clonic with absence - one per year

• no tonic clonics - just absence

frequent tonic-clonics seperated by absence status

During all these stages, there has been nothing in the background to explain it, no alternative therapies etc

Last set of two tonic-clonics was Thursday and I am now having a tough time trying to come to terms with the fact that the E appears to be progressing with vengeance. From my point of view I am scared, running around trying to find answers or solutions. My medical background doesnt make it any easier to deal with either, although I can get information on what is available fairly easily if I look for it

Thats bad enough on its own, but my son is treated 70 miles from my home in a national centre. When he seizes, we have to go to a local hospital that is only able to offer emergency care

I am a silent carer who currently doesnt see the light at the end of the tunnel

Dianne

[Bernard]

Bernard, if I have caused offence I apologise

LOL! No, no offense at all.

Stacy had absence seizures until she went through the EEG Neurofeedback many years ago. After that, she has not had them again - even when the tonic clonic seizures, jerks and atonic/drop seizures returned after the birth of our children.

Dilantin appears to be working well for Stacy in controlling the tonic clonic seizures. Has your son tried it before? I'd suggest talking to his doctor about it (by phone or in person).

I understand that you are scared right now. I was in that place months ago when Stacy was degenerating in condition. Keep searching and don't give up!

[Dianne]

Dilantin appears to be working well for Stacy in controlling the TCs. Has your son tried it before? I'd suggest talking to his doctor about it (by phone or in person).

I understand that you are scared right now. I was in that place months ago when Stacy was degenerating in condition. Keep searching and don't give up!

LOL, where I am now, is not a nice place to be! I had thought that I was becoming so distressed by this place I'm at, that it might be a good idea to give forums a miss for a while

However ...

Kevin's (my son) epileptologist wants to do a drug change to topomax. I live in total dread of a drug change after one that went wrong a few years ago. I will mention Dilantin though, both drugs he hasnt tried before. Unbeleivable! He's been on so many

I havent given up yet. If I give up, my son has nobody to fight his corner, I'm sure you can understand that particular emotion. I'm looking into VNS, which apparantly is available in the UK, and ........... massage. I'm quite into sport, running. Massage both reduces the impact of injury and is a relaxant. I'm going to speak to my massage therapist about massage, to relax, hence reduce stress, using just carrier oils, some oils are real no/no's for epilepsy pt.s

Dianne

[Elisa]

Dianne-
Dilantin is a great drug, and a very old one. I have been on it since I was 12, On a whole it has very few side effects, well at least for me. Biggest side effects are tired, and word finding problems.
Topamax was very hard on my stomach, and is know for making you loss large amounts of weight. Topamax is much harder on the congative skills, many times known as dope-a- max.
Hang in there, something will come along.

[RobinN]

Watching this disorder change over time is scary.
We had many changes while on medication, and when changing meds. I think not enough is known about how these neurological drugs effect the system.

Now that my daughter is med free, it is much easier to assess why her body is reacting in a certain way. I look for nutritional lapses, or body functions that are amiss, before I reach for a med.

It certainly isn't easy to go against the current and choose a med free approach. However, if you find a doctor willing, I highly recommend it. It has made such a positive change in my daughters care. It has made neurofeedback possible, and to see the direct positive response she has had to it.