How do I know?

[uplate]

Hi everyone.

I came across this forum looking up some meds, I hope it's ok for me to post.

Very long story short, I have coeliac disease, I've had a stack of health problems related to the late diagnosis (18yrs from onset of symptoms). I had physical and anxiety type symptoms for most of that time and I'm still finding out how much damage it's done.

I'm currently on Epilim 500mg 2x a day. I haven't been tested for epilepsy. How do I find out if I have seizures if I'm already on an anti-seizure med? And I don't want to stop taking it because it's worked so well for me. My doc tried to take me off it and switch me to Lamictal at one point and I got really crook.

Could some of the symptoms I've had be caused by a seizure or are they something else? Since on the Epilim I no longer get really bad dizzy spells, my legs don't collapse without warning, (no tripping or sense of weakness just straight down on the floor jelly legs) although I haven't had anything like the classic "seizure". I don't get "anxiety" as much. I used to get it under fluros, like something really bad was about to happen, the air would go dark and thick, I could feel all the blood run out of my face and I'd lose co-ordination. People around me suddenly got loud and scary, my perception of distance was affected, felt like something was going to give, I thought I was going mad. Then a few minutes later, just about back to normal except I'm really tired and need a lay down. My migraines and "super charged" thoughts have stopped happening too.

I still get problems with fluro lights and the new energy saving light globes, nausea, lose my depth of field, sense of colour and I feel like I can't "see" if that makes any sense, I sometimes walk into things because of it. Still have restless legs and jerking awake bad enough to disrupt my sleep, don't know if that has anything to do with anything.

Do I even need to know what it is or is it enough to just keep taking the meds since they are working. I want to scuba dive again, I had an "anxiety attack" at 30 metres but seem to be ok above 18m. Should I be worried about the meds? It's going to effect my dive medical isn't it?

 

[RobinN]

Curious if you are healing your GI system?

Coeliac/celiac disease can cause the symptoms that you write about. You also might have additional food sensitivities too. Dairy, soy, corn are all allergenic. Have you had further testing?

 

[uplate]

Hi RobinN, thanks for the reply.

I'm on a gluten free diet, have been for over 2 years now. I had extensive dietary testing for allergies. A psychologist sent me off for screening after she suspected I had adult ADHD, they picked up the coeliac there. I was getting terrible anxiety and having trouble concentrating and with memory. It improved after I went gluten free. I've been on mega doses of vitamins to get my levels back to normal, my vitamin D is back up, hormones stable, kidney function has improved and I've stopped losing bone mass since GF.

The neuro symptoms though improved at first but new ones started after I went gluten free. I'd not had the dizziness or collapsed before. Some symptoms persisted even though I was gluten free. The Eplilm seems to have helped. I'm still very fatigued.

 

[Crystal11]

Maybe you should ask for an EEG. That test could possible show any Epileptiform or seizure activity if you're worried about having a seizure disorder of some sort. Usually an adult doesn't start having seizures out of no where- without a cause, like an injury or illness. But testing like MRI and CT and EEG could help with a diagnosis or possible find other medical conditions too.

What was the Epilim prescribed for? Celiac's, Migraine or another condition?

Take care,
Crystal

 

[Meetz1064]

I, too

am a celiac, with 4 types of E. I'm not on Epilim, but 4 different types of meds--Carbatrol, Lamictal, Topamax and Klonopin.

Your story sounds much like mine, although mine is much more recent than yours--at least the severity of mine is much more recent.

My vitamin levels are also atrocious--and two of the things that I've HAD to add are magnesium and taurine. They've definitely helped with the jerking and cramping/restlessness and even headaches, too. Vitamin B Complex is helping too.

Being a celiac is a pain in the neck, I think, sometimes.....

 

[uplate]

Will tests like an EEG show anything if I'm on an anti seizure med? I've had a lot of health problems, just about all of them can be traced back to the coeliac. I was given Epilim to counter side effects of another med they had me on (which I don't take anymore), but they kept me on the Epilim because it worked so well for me.

Ah, magnesuim, someone else mentioned that as well, I'm meant to be taking it but ran out and keep forgetting, I'm on vit D, silica and a multi. From memory it didn't do much for the restlesness but did help with the cramping.

Yeah the coeliac is a pain, nothing like waking up everyday wondering if the organ crew are going to have a mutiny this morning. The wheat substitutes are awful too, especially in the frankfurts, my cat won't even eat them, 3x the price too. I've totally changed my diet to an Asian/indian style diet with rice, cornflower and spices instead of using the substitutes.

 

[Billyboyboo]

My EEG's are so vague sometimes.

Everyone of those symptoms you described, I have had at one point or another.

:twocents:

-Billy.

 

[Meetz1064]

Well, for

what it's worth, my EEGs were TOTALLY CLEAN for 40+ years...and then activity finaly started showing up about 4 years ago....and trust me, I've been having documented seizure activity since I was a year old, and even prior to that.

 

[uplate]

I have another question, has anyone had trouble with the new energy saving light globes? I'm getting nausea, an unreality 2D sensation and walking into things with them. They make me feel sick, like agitated and I'm going to pass out at the same time and now they're starting to take the incandecant bulbs (which I don't have that problem with) off the market. Also I paint (which is how I earn money) and am finding I can't do it at night because I can't destingush colours properly under them.

 

[epileric]

Are you talking about the fluorescent light bulbs? I know someone whose seizures are triggered by them. She uses yellow tinted glasses so that they don't bother her.

I don't know if that would also help your nausea but you might want to research it a bit. Of course even if it does help your nausea I'm sure they won't help you distinguish colours properly.

 

[RobinN]

Perhaps you should consider Adrenal Fatigue:

http://www.coping-with-epilepsy.com/forums/f23/adrenal-fatigue-2748/#post24418

 

[uplate]

Yes the florecent ones, the spirally ones they sell now instead of the old round ones. The old long tube florecents like they had in butcher shop windows and offices are even worse.

 

[Billyboyboo]

Yes the florecent ones, the spirally ones they sell now instead of the old round ones. The old long tube florecents like they had in butcher shop windows and offices are even worse.

The spirally ones are a danger to me, I cannot tolerate them at all! If I'm on allot of Valium, I can, otherwise forget it, it's like a blast to my brain.

I have another EEG next month, I think, I do hope it comes back positive.

Billy. :twocents:

 

[Nakamova]

Hi Uplate --

Both the newer fluorescents and the older ones have a "flicker" that can trigger those who are photosensitive. If you have them at home, you might want to go back to the old incandescents, despite the energy costs. And consider tinted glasses as Epileric suggests above.

The symptoms you describe could be a form of migraine or simple partial seizure, or something else entirely. Since the Epilim seems to control them, then that may be one indication that the symptoms are seizure-based. Rather than focusing on the getting the EEG though, I think it makes sense to look at the triggers of the seizure-like symptoms. For many, GI issues are a cause, and addressing those issues could help. Unless the Epilim is causing intolerable side effects, perhaps you should stay on it.

I'm aware of at least one scuba diver who dives despite his epilepsy. In your case, since your symptoms do not take the form of grand mals, and are controlled, it's possible you would pass your dive medical exam. But I would err on the side of caution -- whether your symptoms are seizure-related or not, they sound like they could put you in real danger on a dive.

Best,
Nakamova

 

[uplate]

My energy bill hasn't gone down noticebaly since switching from incandecants so the energy cost doesn't bother me, I find I need more and stronger of the new lights to get the same sensation of things being lit. The globe shaped new ones seem to be slightly better but still pretty awful. The incandecants are getting harder to find, they're phasing them out here, I stock up when I see them being sold somewhere. I'm considering a different kind of lighting alltogether, I'm renting so down lights are out of the question but I'm looking at what lamps I can use that will take a hallogen or tungsten globe and lighting the living areas of the house that way. I still use the new globes in the stairwell, bathroom and kitchen because I don't spend as much time there but they are now the parts of the house I seem to trip, run into and drop things a lot. I'm considering getting a small workmans light from the hardware for painting by...what a pain...this light thing has made me feel like such an old grandma...

I know pre drug diving used to make me very tired which is making me wonder what it will do to me now. I'm worried if the environment and breathing compressed air will alter the strength and effects of the drug in my system, how the meds will effect me at depth rather than having a seizure since I can't recall having blacked out. Having said that I had a car accident a few years ago where I did blank out, I couldn't explain it at the time and put it down to a micro sleep but looking at it now maybe it wasn't. It gave me a bit of a scare and I haven't owned a car since. Driving at night was difficult for me too, I had trouble judging distance, is the yellow they put on some streetlight covers the same type of yellow as the glasses? I can remember as a kid dad driving onto a stretch of highway at night that had them and I could suddenly "see" better, maybe they were just the brighter hallogen *shrug*. I think I will ask my doc more about it when I go back for my bloods, it's sounding more and more like something I should look into. Don't know what an EEG will show, my sons was negative and he showed huge improvment on anti seizure meds.

 

[Bernard]

Hi uplate, welcome to the forum. :hello:

EEGs can show epileptiform activity in individuals whether they are outwardly exhibiting signs of a seizure or not and whether they are taking AEDs or not. By the same token, EEGs can show normal readings while people are experiencing a seizure. They are not a perfect diagnostic tool, but when they do record epileptiform activity, they can be very useful in diagnosing issues.

 

[occb]

My energy bill hasn't gone down noticebaly since switching from incandecants so the energy cost doesn't bother me, I find I need more and stronger of the new lights to get the same sensation of things being lit. The globe shaped new ones seem to be slightly better but still pretty awful. The incandecants are getting harder to find, they're phasing them out here, I stock up when I see them being sold somewhere. I'm considering a different kind of lighting alltogether, I'm renting so down lights are out of the question but I'm looking at what lamps I can use that will take a hallogen or tungsten globe and lighting the living areas of the house that way. I still use the new globes in the stairwell, bathroom and kitchen because I don't spend as much time there but they are now the parts of the house I seem to trip, run into and drop things a lot. I'm considering getting a small workmans light from the hardware for painting by...what a pain...this light thing has made me feel like such an old grandma...

I can't paint using energy-saver lighs either. I don't have E, but they even make me feel wonky, and the colours are all off when I use them. The workman's light sounds light a great idea. We still have access to incandescents here, but at some point we may not, and I'd really like to know about alternatives before they're made unavailable.

 

[uplate]

I went to the hardware and they said the new hallogen globes were better than the spiral (fluroecent) ones, which I've found too, still not good though.

Researching it looks like there are hallogen tungsten and incandecent tungsten, it's the incandecent I need to get. I don't know yet if the workmans lights have been affected by the new legislation since they fall more under industrial lighting than domestic, here's hoping not.

I also had a look at lighting for film and TV, "redheads" give a really good strong consistant light, there are minature versions, the light can be shaped to be directional or diffused, problem with them is they blow a lot of globes if you knock them and they do get very hot, not really an option for domestic lighting but should be ok for short periods like to work under provided I take the proper precautions, they have a reputation for melting and burning things.