New guy here but not convinced I have Epilepsy

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Eric M.

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I was diagnosed about a year and a half ago with epilepsy after I started having what my wife and I called "episodes". I would start feeling weird than I would be motionless and unable to talk for about an hour (sometimes up to 2 hours). I am conscious during these "episodes" and can see and hear but I was getting about 5 of these a day. I went to a neurologist and after a MRI and EEG's he said I had epilepsy. I was prescribed Keppra. My sister did research on Keppra and wanted me to try THC and CPD oil. My "episodes" nearly stopped. But after a few months I started getting my "episodes" again so I upped the THC. I than moved from SoCal to North Idaho and started seeing a neurologist here. After another MRI, EEG and C/T scan he said he is confident that I have epilepsy.The tests show a abnormality in the left frontal lobe. He prescribed me Lamotrigine (150 mg 2 times a day). After building up to the 150 mg's a day I started having episodes again. My prescription was upped to 200 mg 2 times a day.I am still getting my absent episodes so my Dr just prescribed me Zonisamide to take with the Lamotrigine. Last night was the first time I took the Zonisamide and I have already had an episode this morning and still in a fog.

I guess what I want to know is, if there is anyone that is getting these same type of seizures? I was told I could of got this because of the many concussions I have had playing football. Any help I can get is very appreciated. I am really tired of these episodes.

Sorry for the long story.
Eric
 
! ! ! WELCOME TO CWE Eric ! ! !

Eric,
I can say Welcome from all of the members of CWE! There are many people on this site that may be able to help you with your problem!
The first thing that you did wrong when you used Cannabis was that you were keeping an eye on the wrong chemical that exists in Cannabis. The THC that exists in Cannabis is NOT what is used to help people with Epilepsy(E). The CBD in Cannabis is the useful part of it! This means that you did yourself absolutely no good by raising the amount of THC you were getting from the Cannabis. The THC is the part of Cannabis that makes a person feel HIGH. It does no good as far as calming someone's brain activity down!
It sounds to me that you are experiencing a severe case of DENIAL. You don't want yourself to have E so you tell others that you don't have it!
Until you allow yourself to accept E as a new part of your life you will continue to feel negatively about having E. You will see yourself become much calmer and less stressed out if you accept this as a fact and NOT try to fight it. This would be a battle that you would not be able to win by yourself! You will need help and assistance and until you are willing to ask for this aid you will feel as though you are on an island all by yourself! :ponder:
I have lived w/E for over 50 years and have led a life that I feel was something that many other people would have wished they had for themselves! This means that E does NOT have to make a person's life more difficult for them unless they allow their E to do this! :agree:

acshuman
 
Hi, Eric, and welcome to CWE;

Your denial of epilepsy is very understandable, and I think everyone here who was told they have epilepsy can relate to this in the first stage of their diagnosis as well. Having said that, however, if you have doubts about your diagnosis then by all means seek a third opinion, but if you do I would encourage you to see an epileptologist if one of the neurologists you have seen is not of this specialty. Also, it may help to obtain a really clear explanation from this second neurologist as to why he is interpreting the results as epilepsy - this may help you understand things a little better.

Does your neurologist know you are taking the THC and CBD oil? It is important to have your neurologist involved, first of all because as acshuman mentioned, THC typically worsens seizures and it is the CBD that CAN help with epilepsy (but it is important to be aware that scientific evidence of the benefit of CBD in adults is scarce due to the lack of controlled studies).

Lastly, it is important to be aware that there are many anti-seizure medications out there and unfortunately it often is a process of trial and error until the most helpful one (or helpful combination) is found for a particular individual.

Keep a symptom journal if you are not already, detailing things such as time of the episode, how you felt before and after an episode, what happened during the episode (a "witness" may help you with this), how long it lasted, anything significant that may have triggered it (excess caffeine, alcohol, insufficient food intake, lack of sleep, etc.)

I hope you get all this sorted out soon!
 
Thank you both for your feedback. I guess my denial is because the research I have done say that the seizures shouldn't last more than 5 minutes. Mine last an average of an hour. My Neurologist who specializes in epilepsy is confidant that I have epilepsy but the length of my episodes have him baffled.
 
Almost Unlimited Types of Epilepsy

Eric,
There seems to be a limited number of seizure types, but the fact is that a person can have as many different variations of Epilepsy as there are connections between cells in the brain. :ponder:
Seizures seem to be placed in a certain categories, but there are a huge number of variations of each and every category.
If your doctor is really stumped he/she should be reaching out to the many other doctors who have possibly dealt with more variations of E than he/she has!
As masterjen said, the best kind of doctor to see is an 'epileptologist' because this is a neurologist that specializes in Epilepsy! :clap:

acshuman
 
Hi Eric,

Welcome to CWE! Acshuman and masterjen gave you some good advice. There have been times when I will be unable to speak and I'm conscious during a seizure then that will lead into a absence or complex partial seizure. My Epileptologist calls the ones where I'm not able to speak aura (simple partial) seizures.
Just like you I use CBD to help control my seizures, I have been using it for almost a yr. now and this past yr. I've had the least amount of seizures in 45 yrs.
A few yrs. back I had a concussion and it caused me to have a lot more seizures my Epileptologist told me that the swelling of my brain along with the bruse caused me to have so many seizures after the concussion. After the swelling went down the seizures decreased.
As crazy as this may sound try using vitamin B12 1000 mcg. once a day B12 helps calm the nerves another thing I do every day is put coconut oil on my skin and that in turn builds up ketones in my body which helps reduce the seizures. Take note what time of day/night you're having any seizures and also take note if there's a low pressure in the weather. Sometimes people can have seizures when there's a low pressure because the air is heavier and that in turn effects the hormones which can lead to triggering seizures for some people. I wish you only the best of luck and May God Bless You!

Sue
 
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Thanks Sue. I will have to have my wife start keeping a log of when they start and how long they are. I am taking B12 every morning. Im not sure of the dosage, but I will check it out.
 
Eric M. said:
I was diagnosed about a year and a half ago with epilepsy after I started having what my wife and I called "episodes". I would start feeling weird than I would be motionless and unable to talk for about an hour (sometimes up to 2 hours). I am conscious during these "episodes" and can see and hear but I was getting about 5 of these a day. I went to a neurologist and after a MRI and EEG's he said I had epilepsy. I was prescribed Keppra. My sister did research on Keppra and wanted me to try THC and CPD oil. My "episodes" nearly stopped. But after a few months I started getting my "episodes" again so I upped the THC. I than moved from SoCal to North Idaho and started seeing a neurologist here. After another MRI, EEG and C/T scan he said he is confident that I have epilepsy.The tests show a abnormality in the left frontal lobe. He prescribed me Lamotrigine (150 mg 2 times a day). After building up to the 150 mg's a day I started having episodes again. My prescription was upped to 200 mg 2 times a day.I am still getting my absent episodes so my Dr just prescribed me Zonisamide to take with the Lamotrigine. Last night was the first time I took the Zonisamide and I have already had an episode this morning and still in a fog.

I guess what I want to know is, if there is anyone that is getting these same type of seizures? I was told I could of got this because of the many concussions I have had playing football. Any help I can get is very appreciated. I am really tired of these episodes.

Sorry for the long story.
Eric
Click to expand...

Welcome to the site!

I hope this site provides you with the support it has given me. I too was diagnosed late in life (25 so I guess not that late but late enough to have a jaw drop experience when I was diagnosed) and my seizures also did not start out by what people expect when they hear the word seizure. So I know how hard it is to accept the diagnosis, especially when at first it seems so life changing.
Its important to remember that the name, the diagnosis does nothing, changes nothing, apart from your understanding of what is going on. It doesnt make it more real or suddenly life changing, it just puts a name to your symptoms.

Now as far as your symptoms go, I have yet to find anyone who has epilepsy like I do. Sure, the Grand Mal seizures, the absence seizures, the tonic or clonic seizures can resemble anothers but when it boils down to it, every persons epilepsy is different. If your episodes are lasting an hour or more, either your seizures desperately need to be under control (ones lasting 5+ minutes are considered an emergency from my understanding) or it is a part of your "post ictal" stage which is also different from person to person. And once you get into Auras and partials, it's no wonder epilepsy can be hard to diagnose and sometimes take years (took 20 years for me to be officially diagnosed).

I come on here frequently hoping someone can relate but to my specific episodes they cant, but to having epilepsy and the affect it has on your life, the feelings that come from it, they can and do relate and it's a wonderful place of support, especially if you dont have it in your every day life.

I too got mine from a concussion when I was 5, it's only progressed from there and the struggle to find a working medication that continues to work and you can still function while on it, is real for many of us. A lot of people have to take more than one type. I've been on my current only 6 months and am already having "breakthrough seizures"

Having a good support system and trying to live fully between the episodes instead of worrying about them when they arent happening are the best things you can really do.

And of course finding a good medicine concoction.

All the best. Post away when you need to.
 
Thanks girlwithadog. I understand what you are saying about being able to live normally with it, but I did lose a very good job because I couldn't pass the DOT physical. I was told I have to be seizure free and off med's for 10 years. So that was a hard pill to swallow. I do have a job I really like (but it is about half the pay of the other job). My boss knows about my epilepsy but I never talk to them about it or tell them when I had a seizure. Luckily I haven't had one at work.

I do have a great support system, my wife, mom and sister are all great. I guess I am still in denial. I really hate having this but I am really trying to do my best to understand what it is and how I can best control it. It sounds like I need to start taking CBD oil again. Does anyone have any recommendations on what kind is the best?

Thanks again for all your help.
 
Hey Eric -- you might want to keep an eye on this recent thread, which may bring some responses about CBD:
http://www.coping-with-epilepsy.com/forums/f32/question-anyone-using-marijuana-treatment-27095/

Keep in mind that CBD is a "medicine", even though it isn't regulated or manufactured under the same strictures. For this reason it's important to treat it as you would any other powerful brain medication: Start with a small dose and ramp up very slowly, paying attention to how you feel at each increment in terms of efficacy and side effects. Take it in a consistent fashion at the same time every day. And don't stop abruptly, since that can also have consequences for the brain.
 
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