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Reaching out for some help and advice

Sun, 02/18/2018 - 09:13
Hi all, I'm new here and this is my story. Please do come back to me with your thoughts and suggestions here, i'm going to spill it all out with authenticity here so bare with me. Ok so I'm 35 male, living in the UK. Now the symptoms i have felt have dogged me daily for at least 15 years...memory gets fuzzy before this. So in my teens i developed a really intense anxiety disorder which ive contended with throughout my life to date. I've had all different periods of medication for ths over the years SSRI's etc, ive also found alcohol to be phenomenal as an acute treatment to get me through particular situations over the years - dates, social events etc. I haven't developed any alcohol dependency but yes i've certainly drank a fair bit over my years and i know this is not a healthy choice. Now what ive found is that any kind of visits to GP's to discuss any other symptom is generally written off as me being a hypochondriac with anxiety or broadly dismissed as being stress related etc. Ok this is fine but it doesn't factor in that, even now as i type this i am experiencing quite intense symptoms which i'll go into, emotionally I'm calm, i have a lovely life, my stress levels are low etc so this symptom i am very reluctant to just dismiss as stress/anxiety....its too frequent and specific to be this i'm almost certain... Anyways so what symptom am i blabbering on about. Well its difficult to pinpoint describe but the best thing i can suggest to experience it is if you stare at an object and let your eyes almost glaze over, with little focus and then intensely stare...its like this. When i say daydream i don't mean that my minds all full of tropical islands and sports achievements, my mind is pretty blank and i feel quite a strong need to stop my focus and just stare vacantly. This can be on and off almost all day, sometimes with only fleeting periods where i feel 100% 'normal' and able to just focus and think clearly etc. I don't lose consciousness and its not so powerful that i don't have any control, so for example i am able to type now as i feel the sensation but to stop myself going into the quasi-trance like period i have to put in quite a lot of effort - its like I'm constantly staving this off. My visions fine and i function pretty well, holding down a complex job etc but imagine having this sensation when people are talking to you or you're required to talk and interact! It gets difficult to fend this off, sometimes i'll just slip into the vacant stare....i don't even like writing about this because it sounds so bizarre and really makes me feel upset. Its got to a stage years ago - perhaps 10 where i went to see a neurologist, had an mri and ...i want to say CT scan? The one where they put all the electrodes on your head...this all came back fine but i was also feeling lucid clear and focussed doing the testing - sods law! The neurologist said if i persisted then they would give me a negative diagnosis which i think is where i'd get diagnosed with something in the absence of any testing evidence. I then looked at epilepsy medications and side effects etc and kind of concluded that as i can function still so well i might be better off to just avoid medical intervention and just manage things myself. I find that a ketogenic diet helps, gives me a much clearer head, no where near as much of the 'brainfog' haziness or compulsion to stare but it doesn't completely eradicate the sensation. I also find that if i don't eat all morning i can feel quite clear headed but once i eat at lunch the symptoms become particularly intense - so perhaps related to blood sugars or something? Its the fact that i can continue to function that has helped me get through the days without needing to try and escalate my enquiries again but its a real difficult burden to bare everyday. Please let me know your thoughts, does this sound like some form of absence seizure? I don't lose consciousness and am still fully aware of my surroundings and can force myself to do tasks in spite of the draw towards the vacant stares. Ok I'm repeating myself now. Please come back to me with any ideas thanks.

Comments

I can relate! Thanks for

Submitted by Daylee on Sun, 2018-02-18 - 10:57
I can relate! Thanks for sharing. I am a super new patient though.  I got diagnosed 32 days ago and have been on Dilantin and then keppra since then. Both gave me the same feeling you described. I would get so tired that my eyes could not focus or I could get double vision. It was just like when you get tired and "bleary eyed" but constant. And my brain would be out of focus too. I stopped dilantin for side effects and this effect dissapeared completely. I am now stopping keppra and am down to a half dose and it has improved so much. I am just starting lamictal and I hope I feel better than the first 2. I hope we both get some relief and clarity.

In my early twenties, I found

Submitted by Tadzio on Sun, 2018-02-18 - 19:50
In my early twenties, I found a ketogenic diet helped minimize my partial seizures, but when I lost enough weight, I stopped the diet because it was so expensive to eat mainly meats.  There were also problems with hypoglycemia, necessitating frequent carbohydrate-free snacks to avoid too low blood sugar levels (old-school reactive hypoglycemia can cause epileptic-like seizures too).  In my youth, partial seizures leading to secondarily tonic clonics were rare, but, in my early to mid-thirties, clusters of partial seizures started to lead to secondarily tonic clonics about once a month.  Keppra at the first part of a cluster now prevents the tonic clonics, but nothing has stopped the partials and all the other vast range of phenomena fairly common with temporal lobe epilepsy involving the Limbic System. There's a theory that newer AEDs (like Keppra) are also neuroprotective, and will stop partial seizures from the longterm kindling that leads to frequent secondarily tonic clonics with years, to decades, of aging with partial seizures;  but, I missed the boat on trying to stop the longterm kindling   of my epileptic brain.  Some parts of the better book on kindling are available with a google search for "kindling 6" by Corcoran & Moshe on Google Books (I was lucky to get the whole print book for $14).

Thanks Joe, this is really

Submitted by GingerRocks82 on Tue, 2018-02-20 - 14:15
Thanks Joe, this is really detailed and given me lots of foof for thought. really appreciated.

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