My story. Advice appreciated.

[Ccsf00]

Hello all!

Below is my epilepsy story, some other conditions I have that may be related or not, and some test results.

I developed Juvenile Myoclonic Epilepsy at age 18, I am now 25. I have not been diagnosed, but my symptoms seem to fit: If I am woken up and have not received enough sleep, my body has small random jerks. I will feel "out of it" as these jerks occur. I sometimes fall down and occasionally I end up having a tonic-clonic seizure. The tests I took when it first started all came back normal. I was put on Zonegran and now take it's generic, Zonisamide; it has almost completely controlled my epilepsy for the past 7 years. I am still taking this medication. I eat healthy, work out and get at least 7 hours of sleep every night.

-The past few months I have not been taking my medication daily as I feel I am able to be without it for a few days at a time until it starts leaving my system. This is probably not a good idea... I have continued to not have the physical symptoms of my epilepsy, but I will feel an "out of it" jolt once in a while. ... I just decided I will start taking it everyday from now on


I don't know if I have side effects from my medication, but two major things I suffer from are depression and daily fatigue. I recall being depressed prior to my first epileptic episode, but not fatigued.

-The depression gets pretty bad. Suicidal thoughts without any good reason. Typically it's a daily thing, but at times, there will be days where I feel ok. I have found anti-depressants do not typically help, however I am currently taking a very small dosage of Abilify every few days.

-My fatigue occurs daily. I wake up feeling normal and maybe 45 minutes later, I start to crash. My eyes feel heavy and my energy level is very low for the rest of the day... I feel scatter brained and almost feel like I cannot see straight. I recently started taking sips of those 5 hour energy shots and have found they help me a little. I have also started taking Adderall to help me focus and I feel it helps! Coffee, tea and other energy drinks do not have an affect on me.


I took a "NeuroAdrenal Expanded" test about a year ago with these results:

Adrenal Hormones

Cortisol

My result:
Morning: 4.7
Midday: 4.3
Evening: 5.7
Night: 2.2

Optimal range:
Morning: 7-10
Midday: 3-6
Evening: 2-4
Night:<1.5

DHEA

My result: 891.6

Optimal range: 200-400


Neurotransmitters

Epinephrine

My result: 19.3
Optimal range: 8-11

Norepinephrine

My result: 104.4
Optimal range: 35-45

Dopamine

My result: 326.7
Optimal range: 125-175

DOPAC

My result:4,686.2
Optimal range: 900-1250

Serotonin

My result: 203.6
Optimal range: 125-175

5-HIAA

My result: 2,745.9
Optimal range: 2.500-5,000

Glycine

My result: 1,002.6
Optimal range: 375-1,250

Taurine

My result: 3,199.0
Optimal range: 150-550

GABA

My result: 7.7
Optimal range: 1.5-4.0

Glutamate

My result: 38.9
Optimal range:15-35

PEA

My result: 158.9
Optimal range: 30-70

Histamine

My result: 31.0
Optimal range: 10-20

Creatinine

My result: 182.1
Optimal range: --

-The test recommended I take Calm-PRT, Kavinace, EndoTrex, and NorLox. I did start taking them, but cannot seem to remember if it helped... at the time, my depression was my main concern and I know it didn't help that. My fatigue, I'm not sure.


Some other odd tidbits about me: I have no sense of smell and it is congenital as far as I know. I'm very sensitive to certain sounds. My right pupil is often larger than my left (I think this started a few years ago). When I stand up, I often visually black out and/or feel dizzy for a few seconds. My thinking is often clouded/unfocused and it's been getting very hard lately to put my thoughts into words... I feel like I lose my vocabulary. My feet turn purplish in color regardless of temperature and my entire nose gets very red a few times each day, and I can feel when it is happening as my nose feels tight and tingly (this started few months ago).


*If what I've said rings a bell about something at all, please do let me know. Any comments are highly appreciated. Nice to meet you!


C

 

[kostareyna]

Well i think the fatigue you experience now and din't experienced it before probebly because the fact you stop you meds every couple of days,you'r body can't get adjusted to the medication.If you seizure free try taking it in smaller doze but regularly.

As far as JME goes,im afraid to tell you this but usually its for life,even if you feel the seizures had been gone im sure you will get suprised once you drink booze or will be sleep deprived.I know what you feel about the fatigue,i changed from generic to brand at the same dosage and felt horrible like after car accident every morning,lowered my dosage and now im getting better.You should try if your seizures are at controll and not that bad lowering your dosage by the smallest ammount possible and see how you feel.

As for suicidal thoughts and depression i had those as well and still do,usually it will happen because of the fatigue and the fact you feel tired and helpless.The most important thing ,Don't stop exercising...It makes your brain to make more serotonin which gives you good feeling and overall energy,excatly what you need and the opposite of deppresion!!

The drug i take is keppra and i got the same side effects like fatigue and depression but it gets milder eventually.

alot of your test results seems abnormal,consult with your doctor.
as far as energy drinks goes the more you drink the worse it will get in the long run since your body will get used to the caffeine and won't help much also decreasing your tresh hold for seizures + its alot of sugar!

Try siberian ginseng drops: 10-15 drops in the morning when you feel fatigued,might help but since its stimulating might bring seizures as well.Since you din't get seizures from 5 energy shots i guess you can try the siberian ginseng with no worries.

Hope i helped

 

[Cint]

I don't know if I have side effects from my medication, but two major things I suffer from are depression and daily fatigue. I recall being depressed prior to my first epileptic episode, but not fatigued.

-The depression gets pretty bad. Suicidal thoughts without any good reason. Typically it's a daily thing, but at times, there will be days where I feel ok. I have found anti-depressants do not typically help, however I am currently taking a very small dosage of Abilify every few days.

-My fatigue occurs daily. I wake up feeling normal and maybe 45 minutes later, I start to crash. My eyes feel heavy and my energy level is very low for the rest of the day... I feel scatter brained and almost feel like I cannot see straight. I recently started taking sips of those 5 hour energy shots and have found they help me a little. I have also started taking Adderall to help me focus and I feel it helps! Coffee, tea and other energy drinks do not have an affect on me.

Some other odd tidbits about me: I have no sense of smell and it is congenital as far as I know. I'm very sensitive to certain sounds. My right pupil is often larger than my left (I think this started a few years ago). When I stand up, I often visually black out and/or feel dizzy for a few seconds. My thinking is often clouded/unfocused and it's been getting very hard lately to put my thoughts into words... I feel like I lose my vocabulary. My feet turn purplish in color regardless of temperature and my entire nose gets very red a few times each day, and I can feel when it is happening as my nose feels tight and tingly (this started few months ago).

C

Hi Ccsf00,

I've had CP seizures along with depression and tried many meds for them as well. If you are having suicidal thoughts, call the dr. ASAP and tell him/her about it as the Zonisimide (as well as other AEDs) can cause this as well as fatigue.

From http://www.drugs.com/zonegran.html

Important information about Zonegran

Do not use Zonegran if you are allergic to zonisamide, or to other sulfa drugs such as sulfamethoxazole (Gantanol), sulfisoxazole (Gantrisin), or sulfamethoxazole-trimethoprim (Bactrim, Septra, Cotrim, and others). A sulfa drug allergic reaction can be fatal.

You may have thoughts about suicide while taking Zonegran. Your doctor will need to check you at regular visits. Do not miss any scheduled appointments.

Call your doctor at once if you have any new or worsening symptoms such as: mood or behavior changes, depression, anxiety, or if you feel agitated, hyperactive (mentally or physically), or have thoughts about suicide or hurting yourself.

Zonegran can cause side effects that may impair your thinking or reactions. Be careful if you drive or do anything that requires you to be awake and alert. Do not stop taking Zonegran without first talking to your doctor, even if you feel fine. Stopping Zonegran suddenly may cause you to have seizures. You may need to use less and less before you stop the medication completely.

And about Abilify:

Important information about Abilify

Abilify is not for use in psychotic conditions that are related to dementia. Abilify may cause heart failure, sudden death, or pneumonia in older adults with dementia-related conditions. Stop using Abilify and call your doctor at once if you have the following symptoms: fever with stiff muscles and rapid heart rate; uncontrolled muscle movements; symptoms that come on suddenly such as numbness or weakness, severe headache, and problems with vision, speech, or balance. Abilify can cause side effects that may impair your thinking or reactions. Be careful if you drive or do anything that requires you to be awake and alert. Avoid drinking alcohol, which can increase some of the side effects of Abilify.

Before you take aripiprazole, tell your doctor if you regularly use other medicines that make you sleepy (such as cold or allergy medicine, narcotic pain medicine, sleeping pills, muscle relaxers, and medicine for seizures, depression, or anxiety). They can add to sleepiness caused by Abilify.

Avoid becoming overheated or dehydrated. Drink plenty of fluids, especially in hot weather and during exercise. It is easier to become dangerously overheated and dehydrated while you are taking Abilify.

Also, just a precaution about these type of drugs. Some can/do cause diabetes, so BEWARE, or if you have a family history of diabetes, be careful.

 

[epileric]

Welcome Ccsf00

I am personally don't believe those tests to be accurate.

First of all, the test does NOT measure the amounts of the neurotransmitters. It measures the amounts of their metabolites, and then ASSUMES to convert that arithmetically to where those metabolites came from. Come on, give me a break. It aint that simple. No one has ever been able to accurately do that, and metabolic activity patterns will vary a lot from one person to another.

Ok let's assume there is a test that measures directly the neurotransmitters. Well, unless you had the sample taken from your brain or your spinal column through a brain biopsy, which I seriously doubt anyone is going to do, then you are instead measuring what is in the blood or urine...NOT what is in the nervous system. To assume they are the same is folly. Again, we wish it were so simple.

http://www.dr-bob.org/babble/20091217/msgs/930367.html

 

[Nakamova]

Hi Ccsf00, welcome!

I was on Zonisamide for about 6 months. It made me fatigued and depressed primarily because of its effects on my appetite and blood sugar. Since you have been on it successfully for 7 years, those may not be issues for you, but just in case: Make sure you are eating a balanced diet throughout the day, and getting proper hydration as well. Zonisamide can have a dehydrating effect and is processed through the kidneys, so getting enough water and electrolytes is very important.

The past few months I have not been taking my medication daily as I feel I am able to be without it for a few days at a time until it starts leaving my system. This is probably not a good idea... I have continued to not have the physical symptoms of my epilepsy, but I will feel an "out of it" jolt once in a while. ... I just decided I will start taking it everyday from now on.

-- Good call! Allowing an AED dose to fluctuate is hard on the brain since it must constantly try and adjust to each level of med. In some folks this can CAUSE seizures.

 

[Ccsf00]

Thanks for the warnings!