Thread Rating:
  • 0 Vote(s) - 0 Average
  • 1
  • 2
  • 3
  • 4
  • 5
Ever Had a Seizure? Please Share Your Experience.
#31
(07-13-2018, 08:21 AM)I-carus8045 Wrote: My seizures.

Awhile back now I had an experience with seizures due to withdrawals, this is one of the few times I have shared this apart from with close family and doctors who helped me, so sorry for its long windedness but its how I express Smile.

My background that led to it:
When i was very very young (11) I was diagnosed with adhd and aspergers disorder, due to behavioural issues in school and difficulty communicating with people. This led to me prescribed a stupidly high dose of ritalin and later concerta, along with a nighttime dose of catapres(clonidine). As I was prescribed these from such a young age I never developed the sleep hygiene habits that most people do, And I still struggle with my sleeping.

After spending my whole childhood and young adulthood dealing with my sleeping problems unsuccessfully I went to a doctor around 5 years ago for help. He diagnosed me with severe chronic insomnia and Restless Leg Syndrome.

From this I was prescribed diazepam, but wasnt informed about its addictive nature, and i didnt have much experience with benzos and the troubles that come from them.

After a year of being prescribed this I had developed a physical and mental addiction and was taking huge doses and repeated doses frequently, I realised what had happened and decided to quit. Beinh very ignorant I went cold turkey. I moved back into my mother's house as she is a highly trained nurse and said she would keep an eye on me.

After a week I started experiencing extreme rebound insomnia, and after about 4 nights and days without sleeping I started to have severe paranoia and started to experience a form of delirium, which for me were extremely realistic hallucinations that I was unable to see for what they were at the time.

The night I started having the delirium my muscles and body were feeling extremely tight and tense, and I was having intense headaches and couldnt calm myself down at all.

When I had the first seizure I had no idea what was happening, and luckily my mother did, she had the foresight of expecting this might happen, and had retrieved the diazepam I had thrown away without telling me. She gave me a few 5s sublingual and within 10minutes my body had started to calm down.

I was stubborn and insisted on continuing the cold turkey, but after the second seizure a day and a half later I gave in and went to the doctor and began a tapering regime.

Nowadays I have been through so many different meds to combat The insomnia, and have made incredible progress in changing my sleep hygiene.

I have made an effort to become highly educated on benzos, sedatives, tranquilisers, pharmacology metabolites, pharmacodynamics etc etc. And although I am prescribed benzos again, i make sure to only take very short acting ones, with no active metabolites to prevent build up, and I only take them when absolutely necessary to make sure I dont become dependant, and I only have them when I have reached my second or third night of sleeplessness, mainly because the side effects of lack of sleep scare the crappers out of me. Such as: disembodied whispering and voices, shadow people, random bursts of smoke with a hissing sound etc.

So thats my story, I was uneducated and ignorant. I went through hell. But the silver lining was ending up dedicated to understanding everything about the nature of addiction, insomnia, sleep hygiene and all things related.

Wow thank you for sharing your story. Even though the meds may be different,  insomnia meds have created a similar effect when stopping and the buzzing body and whispers and all the rest you have stated, rings home for sure. I am glad you have found a balance and are educated on the pharmacology of all these different types of medication. GABA inhibitors seem to be the only thing that helps with this problem as far as I know and magnesium and calcium channels are other parts of the brain to focus on for this problem as well. Thanks again for sharing!
" The Intuitive Mind Is a Sacred Gift and the Rational Mind Is a Faithful Servant " AE
Reply
#32
I have found magnesium to be a godsend in that area! Its incredible, especially in formulations that contain inactive ingredients that still boost metabolism.

I was happy to share, I had to start somewhere with talking about it. This seemed like the perfect place. Now ive expressed it in writing I think ill find it easier to discuss with people IRL
Code:
"Never regret thy fall,
O Icarus of the fearless flight
For the greatest tragedy of them all
Is never to feel the burning light."
Reply
#33
I've had some horrific seizures there no joke and terrifying, my last one I woke up in hospital strapped to the bed and was told by the dr I was lucky that my friend was there to call the ambulance. Now I have an idea of when one is coming up, you get this weird feeling all over your body coming over.

The only one I can recall a lot is probably my first ever one. I believe this was bought on by lack of sleep, stress, and missing my dose of valium. It was scary, I thought I had a stroke at the time.

I was working from home at the time, and been up all night. Suddenly I felt this buzzing sound in my ears, and all I can recall was seeing everything go cloudy white with lots of dots.
Then I have no recollection other than waking up on the floor to my friend trying to talk to me and I couldn't respond for about a minute and couldn't understand what he was saying It was like I had my short term memory wiped for a moment its hard to explain. He had to remind me what I was doing before, it was strange. But he told me what he witnessed, that one side of my face dropped with eyes rolling back almost like I was in pain and stiff but I didn't remember any of that. I took myself to hospital the same evening and any stroke was ruled out
Success!
To laugh often and much, to win the respect of intelligent people and the affection of children, to earn the appreciation of honest critics and endure the betrayal of false friends, to appreciate beauty, to find the best in others, to leave the world a bit better, to know even one life has breathed easier because you have lived.
Reply
#34
I experienced a seizure when i was very young due to illness. For close to a year I've been on various (short & long-acting) benzos, mixed with the occasional opiate. I've started reducing my doses but I often get rebound anxiety, and I hope my medical history wont affect my resistance against seizures.

Honestly, this situation scares me. My thoughts have become increasingly sluggish (hopefully its psychosomatic).

If i could quit cold turkey i would, but i fear for my safety thanks to the seizures. Any advice on how to properly taper/ deal with withdrawal?
Reply
#35
I suffered three seizures in a row after withdrawing from heavy doses of midazolam as well as triazolam, clonazepam, alprazolam all over a course of about 8 yrs. I never took these meds together, rather rotated. I tried to stop the benzos and even with a taper suffered 3 massive seizures in which I broke my scapula. I am now back on benzos and was also prescribed depakote by my psychiatrist.
Reply
#36
I have epilepsy and have had them afer an automobile accident where I had an intracerbral bleed in my frontal lobe. My neurolgist studied seizures specifically after going to Vandy. He is so nice and awesome. I have tonic seizures. It feels like youre either dying or having the worst panic attack on the planet. My legs go out, I usually have them in three's. However I never go to the hospital if possible. They take your liscense for 6 months seizure free. It is awful. taxi's and uber add up but I haven't had a seizure in 2 months he didn't report it so I am on the honor system. Vimpat is the best meds for me. Keppra sux and interferes with other meds poorly. Dilatin I took for a week side affects. The worst part is the isolation of a chronic illness. I go to an epilepsy support group and get to gripe and they all know whats its like so......it can't hurt.
Reply
#37
I am sorry to hear this. i had seizures and a stroke. bitching. have not experienced those symptoms in quite a few yrs.

Disability doctors chose two types of specialists to send me to: My diagnoses have been MS, Lupus, and reason unknown, well, its cuz most doctors still do not know autoimmines illnesses any better than a hole in the ground, i got sent to a doctor to see if i have pain. almost for seizures and i saw my driving, as minute as it is now, would be over. and for ptsd. because life can be very very difficult and certainly not what i had planned.

and the brain trauma is why i write so strangely. i lost a huge portion of brain at base of rite ganglia.

i can see and hear during episodes, but i am not processing information till way later.


I am glad ur support group helps you. But there are quite a few whom visit here and other forums whom are totally homebound.

Treasure being able to get out while u can. My houseshare just was given an old walker with brakes and a seat and a basket. If people with my illnesses need support, we use shopping carts. baby strollers. so cool cuz i may make two days of a music festival with this new walking device. Its the festival where one very legally protests for a certain medicine in my state.

I am glad I got to know u better pickles. Hoping you are getting some friendship with ur group. May u have peace tonite.

Yeah, living through nine one one did not help either of us did it? Those darn selfie smilers need to understand the terror and the horror and the fear. You unequivocally get it. We are changed forever.
Angel  It is Well with My Soul  Angel
Reply
#38
I have written about this in the benzo withdrawal thread recently too. I started getting full on tonic-clonic seizures when I was about 16. They put me on clonazepam initially to prevent further seizures due to its potent (and lesser well known) anti convulsant effects.

ECG indicates I have a strange electrical pattern emanating from my left parietal lobe. Neurologists don't know what it is as they had never seen that pattern before and it is not a typical epileptiform pattern. They initially thought the electrode was attached wrong but got the same result after a repeat. MRI shows a small subarachnoid cyst- most likely nothing to do with seizures.

In total I have had about 10-15 unprovoked seizures, some while medicated, some while not. I have had 2 seizures directly related to withdrawal from benzos. They peaked around the age of 23 when I was at law school- lack of sleep, overdoing the stimulants, the usual student stuff.

Haven't had one in a couple of years now that I have been relatively stable, working at a flexible and understanding company. They let me take paid breaks to go to the pharmacy, doctors appts etc. Finally getting my licence at the age of 26 was the icing on the cake for me.

Currently on levetiracetam (keppra) 1000mg twice daily and topamax 50mg twice daily. Last year I thought I could just taper off my dose of keppra- didn't tell my doctor or anything. Mostly because anticonvulsant drugs tend to flatten my moods a lot (not bipolar though). Earlier this year came to my senses and decided to go back on it. It was the worst month of my life with the side effects. First time I went on it I was in lala-land from the clonazepam. This time around I was tired, agitated, hot and cold, sweaty, angry, would start crying for no reason. The works. Woke up one day after about 6 weeks and felt completely normal again.

Once I fully accepted this is a condition that requires lifetime management I have lost all shame. I go into all the gory details telling the first aiders at my work where I keep my rectal diazepam injector and how to use it. My work bestie also knows I keep a blanket in my drawer in case of any incontinence.
Reply
#39
(09-13-2018, 11:46 PM)Charon Wrote: I am sorry to hear this.  i had seizures and a stroke. bitching.  have not experienced those symptoms in quite a few yrs.

Disability doctors chose two types of specialists to send me to:  My diagnoses have been MS, Lupus,  and reason unknown, well, its cuz most doctors still do not know autoimmines illnesses any better than a hole in the ground, i got sent to a doctor to see if i have pain.   almost for seizures and i saw my driving, as minute as it is now, would be over.  and for ptsd.  because life can be very very difficult and certainly not what i had planned.

and the brain trauma is why i write so strangely.  i lost a huge portion of brain at base of rite ganglia.

i can see and hear during episodes, but i am not processing information till way later.  


I am glad ur support group helps you.  But there are quite a few whom visit here and other forums whom are totally homebound.

Treasure being able to get out while u can.  My houseshare just was given an old walker with brakes and a seat and a basket.  If people with my illnesses need support, we use shopping carts.  baby strollers.  so cool cuz i may make two days of a music festival with this new walking device.  Its the festival where one very legally protests for a certain medicine in my state.

I am glad I  got to know u better pickles.  Hoping you are getting some friendship with ur group.  May u have peace tonite.

Yeah, living through nine one one did not help either of us did it?  Those darn selfie smilers need to understand the terror and the horror and the fear. You unequivocally get it.  We are changed forever.

Thanks Charon...I am just really shy and it's getting easier to talk about chronic illness after doing a ton of work on myself through DBT Therapy. Seizures are a nightmmare and I appreciate what support I am getting here. I'm just a little shy but I'm getting over it!
Reply
#40
I went through a day of seizures with a relative who made a foolish decision to stop taking a number of powerful drugs cold turkey. He had seizures for about 10 hours in the ER I took him to. Had never seen one before (a seizure not the ER) and it was very scary. They gradually stopped and he was able to eventually leave the ER for a hospital room. The ER gave anti-seizure meds, ativan, and a ton of fluids IV and probably saved his life.
Reply


Forum Jump:


Users browsing this thread: 1 Guest(s)