Scared feeling

[Lisa]

My neurologist asked me if I was afraid of having a seizure, and I said no. I never know when I am going to have one, so unless I hurt myself they dont bother me. As time goes by i know how i feel before, and after one. What I am afraid of is how people react. Since I work w/ different customers all week, I dont tell strangers about my epilepsy. A couple weeks ago I had a seizure at work nothing serious, but I had some trouble coming completly back. I have noticed business has dropped alot, and the customers that do come in look at me strange. My co-worker is always asking me if im ok, or this is how you acted when you had your seizure. I do get this funny feeling in my stomach, its like the feeling of riding a roller coaster. my neurologist said this was a simple seizure. So when this happens I have been getting nervous that something will happen. I know its silly, but I have been all balled up for the last couple weeks. Does this make sense?

[whwept]

I'm scared of that feeling, and it never leaves. I'm never never happy because of it.

[skillefer]

I can't relate. I have grand mals (tonic clonics) ....you know, the kinds where EVERYBODY knows you're having a seizure. And mine come without warning. So I can't really do much advice giving....except, that by being nervous, you're putting your body under stress. Do you know what might have triggered your seizure at work? You know, lack of sleep in the last 2 weeks, too much caffeine, stress, etc...?

[Bernard]

Anxiety is extremely difficult to control.

For many people, having auras/simple partial seizures is a blessing - they can use the warnings to mitigate (or even prevent) larger seizures. Silver linings...

[morgan381]

Lisa, I know what you mean about the roller coaster feeling...I have that too, before a seizure. Bernard is right, about them being a warning. The last time I had an aura (simple partial seizure), I was able to prevent it from progressing. I usually have an aura, a series of complex partials then a t/c...in the past, they have given me about 20 minutes warning before 'the big one' hits. Enough time to find a soft landing place...

[alivenwell]

I live with the philosophy that one cannot fall from the floor. I also get an aura which gives enough time to go to a safe place.

The anxiety can lead to another seizure since epilepsy can be aggravated by stress. Stress management can do wonders. Meditation, exercise, and various other relaxation techniques can do wonders to do stress management. I have an active dog who needs a brisk walk every day. That is such a relief to get fresh air and a fresh perspective.

[Meetz1064]

if I can say that I'm scared of mine; I do know that I am totally ANNOYED by mine. They do soooo much damage to me, physically, it's not funny. But, I don't have any warning, so I can't feel that "impending doom" if that's what you want to call it.

No auras for me.......

[haird18]

You know I think we don't all express it but I think we all have a fear of having a seizure at work! Because back when I was able to work . I was training to be a general manager for a Pizza Hut.While I was training I had a worked very late nights for 7 days a week and it finally must of got to me and I had a bad seizure at work and ever since I have been more aware of having seizures in public all the time!
David

[Lisa]

I really shoundnt care what others think, and as time goes by it will fade. The only thing good about a poor memory is you dont remember thebad things as well as the good. I'm a regular person, and I have tried telling people that, and just because I have epilepsy I dont need special treatment, or to be supervised, or baby sat. People are well meaning, but Im a little claustrophobic.

[jesusisonthefountain]

OK, this was a great post. simple seizures is what I have been having. I only have that...well except for one time when I had a period of time where to my understanding I was talking and walking etc... and I don't remember. I am not on meds, and when it happened, I was under a doctors care in physical therapy....they just let me leave after and the staff never knew what happened. Years later I had someone ask me "how I was" no kidding after "what happened"... I thought I dreamed it. This person asking after my well being was in the physical therapy room when I had my incident they recorgnized I was in trouble or was having a seizure or what ever but the staff members who were careing for me....did not. I can live with the feelings and I only have that "OH CRAP" Feeling about 6 plus times a week for about 1 hour each so things are so much better. NO KIDDING I HAVE ALWAYS BEEN THIS WAY...I thought everyone felt like I did...
I have told doctors for years about this feeling the rising from my tummy etc... they just... blew me off. I flunked EEG's twice they have said and done nothing...so I guess I am ok.

[whwept]

I'll sound stupid for this xD, but could someone tell me what they mean by "having an aura", or what it is please. Thanks ^_^

[RobinN]

Remember there is no stupid question...

Experience AURA or AURAS?

ask away...

[RobinN]

I really am interested in the mental side of this disorder and believe that it can be reversed. I have been in contact with Andrew Hall Cutler, PhD, PE , author of Amalgam Illness - diagnosis and treatment - What you can do to get better - How your doctor can help. He also has a Yahoo group titled Frequent-dose-chelation where there is some very interesting discussion on how heavy metal toxins can cause disruption in the mental state. Andy is a chemist and a chemical engineer, so keep that in mind when reading this info. In a way, it is a bit like asking your pharmacist questions.

Here are some explanations that Andy gives for ways to improve mood:

There are several kinds of depression, and also anxiety and fear and apprehension which often come along with them.

The only one size fits all remedy is omega 3 oils. Good for all of it, takes several weeks to help.

Anxiety, fear, apprehension = low GABA problems.

Obsessive, compulsive, thinking about bad things, can't let things go, dream of being run over on the freeway and things like that, think of hurting yourself, lots of psychic distress and suffering = low serotonin problems.

Hopeless helpless crying depression = problems in the limbic system.

No motivation, no energy, don't enjoy anything, sit around like a bump on a log, unaroused, unaware, but mood OK (you don't feel DEPRESSED, you just don't feel much at all) = low histamine depression.

Poor mood, attention deficit, emotionally flat, not much drive or focus =catecholamine depression.

If you have GABA and serotonin problems you have adrenal problems causing both of them. In this case you START with adrenal support, like adrenal cortex extract, licorice, etc. Often DHEA, 7 keto DHEA and pregnenolone may help - these should NEVER EVER EVER EVER UNDER ANY CIRCUMSTANCES be used in children or adolescents. Sometimes hydrocortisone itself may be needed, this must be used with care and sensibly. THEN when that is working worry about the rest.

Magnesium and taurine often help with spacey almost disoriented anxiety and distress. These usually go along with a high heart rate and not sweating much. Take them several times a day for best effect, magnesium in forms OTHER than oxide or carbonate or hydroxide, if you use too much it is laxative. Most people tolerate somewhere between 100-200 mg per serving of magnesium. 500-1000 mg of Taurine at a time is about right.

Serotoninergic depression = use Inositol, 1-3 tsp a day as needed. If that isn't enough, add tryptophan or 5 HTP. If that still doesn't do it, consider asking doctor for an SSRI if you are not chemically sensitive. If you are chemically sensitive or if you can't take codeine you are very unlikely to be able to tolerate SSRI's. In this case add adrenal support whether or not you think you need it.

For GABA problems, try GABA (duh - it doesn't work for everyone though and has to be taken several times a day), theanine, eating protein at every meal, adrenalsupport and if that isn't enough ask your doctor about anxiolytics. If the doc is reasonable they'll offer you BuSpar and a valium like drug (a benzodiazepine) for a month or two until the BuSpar starts working. BuSpar does not always work, you have to see if it is good for you or not. Ativan and Xanax seem to be fairly well tolerated. If you need round the clock coverage then Klonopin is a good choice - also this is good if you have MS or mood instability. Some over the counter anxiolytics are Kava Kava and chamomile. Do note that all anxiolytics are also sedatives.

For limbic problems make sure you have enough thyroid and sex hormones, try B-12 and folic acid in large amounts ONLY if you are not prone to agitation, the nutritional supplement forskolin 10-30 mg 1-3 times a day, maybe try dl-phenylalanine 500 mg 3-4 times a day (if you have a lot of pain or malaise this is good), l-tyrosine 1-3 grams, or the prescription drug selegiline 5-10 mg a day. All the stimulant medications work excellently for this but mostly it is not lawful to prescribe them for this purpose.

If you have low histamine depression, IF YOU ARE NOT ALLERGIC AND HAVE NO INFLAMMATORY PROBLEM, try l-histidine 1-3 grams a day. If you are allergicthis will make your allergies dramatically worse and you must NOT do it. In that case, take a lot of nonsedating antihistamines and other allergy medications, for example Allegra (fexofenadine) and Singulair or Accolate and Nasalchrom as this may let your body tolerate more histamine. AVOID all medications that have antihistaminic side effects and all antihistamines that get into the brain (which is all the over the counter ones).

For catecholamine depression try l-tyrosine 500-3000 mg a day, and forskolin 10-30 mg 1-3 times a day.

If you have a lot of fear or apprehension sometimes beta blockers or the alpha agonists clonidine or guanfacine will releive that. These also lower blood pressure.If your blood pressure is already low you have adrenal problems and need to take more adrenal support before considering these.

If your mood is bouncing all over the place, you may have mood instability and need something for mood stabilization. Most doctors do not know that a lot of these medications work well at lower than normal doses but with much less side effects - the first thing to do if you may need them and aren't in such bad shape you need a lot right away to keep yourself out of trouble is to try 1/4 or 1/2 of the usual amount and see how you do. Most of the choices are Rx, GABA being the most notable OTC choice. GABA has to be taken several times a day. the Atkins diet also helps with this.

If your mood is bouncing and the period is days or longer, it can be you are reacting to dietary issues you haven't figured out yet, or you are chemically sensitive. In these cases all of the above won't help much until you avoid the offending foods or chemicals, then you may not need much help.
As a rule, if you really hate the mood stabilizers and don't want to take them because of how "flat" they make you feel, you truly do need them and it is crucial to take them.

If you find yourself changing your program around a lot because of what is happening to you and are never sure what is going on, try adrenal support, anxiolytics, identifying food and chemical sensitivities, and if those don't resolve it, then try mood stabilizers.

Most MD doctors just hand out SSRI's for everyone no matter what kind of depression they have. This is not useful. Find one who will at least try some different stuff. If one or two SSRI's didn't work, don't bother trying any more. Try different kinds of agents. If the doctor doesn't want to do that, go find a real doctor instead.

Andy

[renee97]

Auras:
After you have read the official descriptions, which are 100% accurate, I would like to offer that within a few nights (maybe a week) of having auras in March 2006, I figured out a way to control them. Right, yea, sure. I was told at least twice that "you can't control an aura," or "you can't predict a seizure or prevent an aura or seizure."
"OK, you're right, I just made that up to see if you were listening," would be my response.
But if an aura woke me during the night (which was almost every single night during the period from late August through November 2007 at any time between 12 and 5 AM) I would get up and go into my living room and start exercising. The kind of stuff we did in High School PE class exercises. For anywhere from 25 minutes (if I was lucky) to 60 minutes or more in order to completely exhaust myself. Then I could go back to bed and pass out and sleep until I had the strength to get up. Of course I would have to nap during the day to catch up on sleep which screwed things up again for the next night-----!
Finally I pissed off (can I say that?) a third Neurologist at the University of MN and he told me they would transfer my records to Hennepin County Medical Center and "you can get treatment there". When I started with the Neurologist at HCMC in December we quickly established a timeline for me to get off of (in order) Dilantin, then Keppra, and then Lamictal and replace all three with Depakote. Not only am I much better now, I rarely have auras.