Another epileptic compadre

[CaesarSalad]

Hi everyone.

Don't really know how to start this off. I'm at a weird point in my life, I guess; epilepsy has been giving me hell for the last 8 years. My a/s/l: I just turned 25, was diagnosed with juvenile myoclonic epilepsy 8 years ago and currently have not slept in 5 days (going for the gold guys, going 2 seize it :clap. I'm currently tapering off of clonazepam, I was at 2 mg a day and I'm down to .25 mg. My neurologist and psych think I can just 'hop off' now, but literally every time I come down 1/8th of a mg, I have a cluster of seizures and terrible insomnia. The best one yet was the one in the bathtub. Not even kidding, the water cushioned everything, I didn't get banged up and, I didn't drown. forget taking ur toaster in the bath, take me with u!

I am also coping with anorexia (caused by the zonisamide), and treatment resistant depression. I've been on nearly every anticonvulsant and they either didn't work, or I have weird, dangerous allergic reactions to them. I still have breakthroughs on zonegran, but it works the best, paired with high cbd, low thc medicinal cannabis.. Depkote, after not feeling well on it for 1 month while having multiple seizures, I ended up in the hospital. They gave me Depakote in the IV and within a couple of minutes I seized and blacked out. They did blood work and my liver had been producing ammonia, causing it and my kidneys to begin to fail. Tegretol produced hives and seizures.. the others either didn't work, or made things worse..

I was healthy until I was 17. After my first seizure, it was like my reality changed. The depression, the social anxiety, the fear. No antidepressants work. I've never felt what a benzodiazepine "feels" like - they've never made me sleepy or taken away my anxiety at any dose, as insane as that sounds.

Doctors have done a lot of experimental work on me as far as depression is concerned, because medicine hasn't worked & I was told my options were having my focal point in my left temporal lobe removed, or even my hemispheres separated, to which I refuse. I underwent ketamine therapy for 6 months last year, where I basically hallucinated for an hour a week in my doctors office. It honestly did have a lasting effect, but after a week I would crash and my anxiety would come flooding back.

My neurologist and psychiatrist are now trying opioid therapy on me, as I was making plans to go to the Dignatas Clinic for euthanasia. I'm on 10 mg of oxy in the morning, and 10 at night, and now life is just one big party.

I apologize for the amount of salt in this post, I normally dont open myself like this, but I figure if there's anyone who'd understand my pain, hurt and frustrations, it's you guys. I've had a lot happen as a result of this disease, as I'm sure you guys have as well. This changed my life forever. I'm sorry we have to experience what we do.

 

[Porkette]

Hi CaeserSalad,

Take my word I can relate to the seizures I had myoclonic seizures until I went on vimpat then the drug stopped them. In regards to having a seizure in hot water I found out that hot water can trigger seizures for me because it was firing up the neurons in the brain so my Epileptologist told me to cut back on the hot water and that made a big difference.

Just like you I had anorexia a few yrs. ago but it was from the drug Depakene I lost 70 lbs.in 4 months and my Dr. had to take me off the drug.

You may want to ask your neuro to do a sleep study on you along with a e.e.g. and e.k.g. at the same time. I had this done and I found out I was having seizures in my sleep but the vimpat stopped all of that. I also have found taking vitamin B12 1000 mcg. once a day and as crazy as it sounds putting coconut oil on my skin once a day has helped reduce my seizures a lot the coconut oil builds up ketones in my body which in turn helps reduce my seizures. I wish you only the best of luck and May God Bless You!

Sue

 

[Nakamova]

Hey CS, welcome to CWE!

I had a tough time with Zonisamide too -- not anorexia, but stomach pain and problems related to low blood sugar. I was all set to ask my neuro if I could try something else when I had a big ol' seizure and the decision was made for me. I've had success since w. Lamotrigine, but that's probably one you've tried already or may be allergic to.

Clonazepam tapering is very tricky, and it might be worth asking your docs if you can stay at the low dose for a while before trying any further withdrawal. In my experience, even so-called "sub-therapeutic" doses of the brain meds can affect our brains and bodies, even if the docs insist otherwise.

Good luck on the opioids, I hope that helps with your anxiety and general well-being. And get some sleep!! As you well know, sleeplessness and fatigue can make everything worse.

 

[valeriedl]

I had my first seizure and was diagnosed with epilepsy 13 years ago when I was 27. The drs have no idea what caused the seizure. For 4 years my neuro tried a ton of different meds. Most of them didn't work, caused more seizures or I couldn't handle the side effects. I was on one med, I'm sorry but I don't remember what it was, that caused me to have anorexia. My mom pretty much had to force me to eat because I wasn't. I lost a ton of weight, at least 50bls, in about 3 weeks. When I called my neuro and told him what was going on he took me off the med right away. I've also been on other meds that caused me to eat like crazy, I gained a ton of weight on those in a very short period of time..

I'm unable to have brain surgery so my neuro suggested a VNS, vagus nerve stimulator. It has helped a ton. I got it in 2007 and I've gone from having at least 20 seizures a month to about 5 on average. The seizures I'm having now aren't nearly as bad as the ones I was having either. I am still taking meds along with it though. I think the VNS helps with depression too but I'm not sure how it works dealing with that.

I've never had a problem with depression or social anxiety before or after having epilepsy so I really can't give you any advice or help with that. I love going out and being around people. My husband actually gets mad at times because he'll look over and see me having a conversation with someone I just walked up to. I just figure "If I'm going to have a seizure when I'm out then I'm going to have one" and don't worry about it.

I hope things start to work out for you. Good luck!

 

[Mari]

Hi Caesarsalad: need to change my nick to 'Phtzz'...smile. I know how you feel my friend. Unfortunately most of my seizures are drug related and anti-depressants are often triggers for seizures. Neither oxy.s nor benzos work for me. And, like you, I have a means to an end. Not something I want to do, but it is the only thing I have at the moment. Somehow knowing that I have at least some control over my life, and my body has given me a semblance of relief.
As for the fear...yeah, I know about that...big time. That and withdrawal from society because of seizure activity. But, I am 64 now, still here, and I have managed to help a lot of people with epilepsy, and without. Still terrified of having a witnessed seizure. People always try to stop me from taking off, (post ictal) and believe me when I say, I fight back, I mean it...sort of a case of flying fists and...well, enough said...lol. Ain't life grand. Actually in many ways it is/can be...smile.
I have also had seizures while taking a bath, and no, the water was not hot. Course my neurologist said not to have more than 6" in the tub...did I listen, course not. If I found the poem I wrote about it I will write it here.
Do not give up my friend...life is a rollercoaster especially for us...but that is ok. Shoot, most of us are truly creative. We try everything to alleviate seizure activity: diets, pills, surgery, etc. Most of us know more about epilepsy than our doctors do, after all, we are living the life not just studying it.
Neurofeedback/biofeedback is very effective for focal epilepsy but too expensive for most people. If you can afford Dignatas I am presuming that you have enough money for this treatment. You simply work on changing mental pathways so that the damaged part of your brain is avoided. Brain plasticity...smile.
I suffer from complex-partial, simple partial and Tonic-clonic...neat huh...smile. I am a wealth of disparate pieces...chuckle. Born with epilepsy and no one knew...go figure. One eeg showed seizure activity in the 70's, none after that. Problem was that I was alone most of the time and there were few witnesses through the years. Turns out most of mine happen during periods of relaxation like; sleep, meditation. Medication was not started until I had a seizure waiting at the hospital for an x-ray, complex-partial secondarily generalized when in my 40's. Fun, fun, fun. Fortunately I know many of my triggers, mostly drug related. Prescription meds. by the way. No idea what would happen if I got into illicit drugs...brrrr...scary stuff.
As for the IV? Oh yeah I hear you there. My greatest fear is seizing in front of people and ending up in the hospital. They always give me the wrong meds. Well hopefully I can increase the Lamictal and put a stop to the big ones. Not concerned about the complex partial. I am accustomed to being construed as a witch who speaks in tongues...lol.
See about the neurofeedback Ceasarsalad. How wonderful it would be if it works...how wonderful. You have focal epilepsy, they know where the seizures are coming from, and you may well benefit from the procedure. It would be good to hear you say, "no more pills, no more seizures/depression". Let us know how you are doing Caesar. This site is a good one. Keep up hope my friend. You will make it...you will...smile. The answer is there you simply have not found the right one yet. It is okay. It is okay...smile. This is something many of us go through, and recover from. Many, many of us...and yet here still breathing. My best to you Ceasar...may your answer come soon.

 

[Daroswene]

Hi Caesar,

I know about the slightest change in a particular medication causing a cluster of seizures. For me, it's Phenobarbital. If I miss a dose (or take it later than usual) or if the doctor changes the dose because of labs, I'll have several. It's the only one that affects me like that. I guess because I took it until I was 5 and then from age 16 to now, at 43.

I had one seizure in the shower and fell backwards out of the tub. I was fine, but now my tub is set up like a handicap-accessible hotel bathroom with rails and a stool to sit on since it's difficult for me to get up and down. I saw a comment about hot water- to decrease the temperature- I may give that a try, despite how much I love a hot shower.

I am taking zonisamide too and sometimes have to be reminded to eat. I haven't had weight loss, but if left alone, I probably wouldn't eat unless my stomach started growling at me. My former neurologist wanted to get me into a low cbd trial, but it would have required moving across the country since my state is still against medications with any amount cbd.

A lot of my early medicines caused Stephens-Johnson syndrome. There are newer medicines, like vimpat, that may work, but are still too expensive for me to buy, even with Medicare.


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