Refractory Seizures

[Porkette]

Hi Folks,
How have all of you been doing? I hope everything has been going well for everyone. I just found out from my Epileptologist that I now have "refractory epilepsy' meaning that no drug or surgery will control my sz. at this time.
Most of you know I've had 2 surgeries to reduce my sz. and I had a DNA test to find out I'm drug resistant to all AED's out on the market as of now. A VNS or DBS (Deep Brain Stimulator) won't work either. The sz. have spread
from the RTL to the frontal lobe and Left temporal lobe from so many yrs. of sz. I don't know what to do from here and the sz. just keep increasing. What's scares me is I found out that 50% of people that have refractory epilepsy
end up passing away. One out of seventeen people die. I don't mean to be complaining and I'm sorry if I upset anyone please forgive me. I just needed to vent. Thank you for your time and May God Bless All of You!

Sue

[annie]

Well Sue you gotta remember that a hundred percent of people with epilepsy are going to die.

Sounds like you are more likely to get killed by a drunk driver than a seizure.

I have had refractory seizures since I was born, 73 years now, and they haven't killed me yet. Also they have not spread, still have the same stupid seizures I had as a baby. Actually they have gotten better since I finished menopause.

But it is pretty scary to have doctors give up on you.

A doctor at the USC Medical school told me once that medicine is what is in medical books. If it is not in a book no doctor knows anything about it and there are more things that are not in medical books than there are that are in medical books. Doctors know almost nothing about bodies.

You have been living a good life and doing a great deal of good for other people. This is not going to change. You are still going to be you, just a you with more seizures. It is ok to have seizures. Unpleasant, but ok.

Remember that there are a great many people here who love you and are praying for you.

[Porkette]

HI Annie,
I'm so sorry to hear that you have had to deal with the same type of sz. that I am having. After I went through menopause my sz. increased but I was told that there was a possibility that would happen.
You have been a wonderful person to me and many others here and I greatly appreciate your support and understanding just like everyone else here.
Hopefully a AED will come out that will help the both of us and others who have this type of sz.
Wishing you only the best and May God Bless You!
Sue

[linniec]

I think Annie is generally right, although her seizures, like mine, are different. My seizures became worse after menopause. Annie has chosen not to take medications . Porkette, you and I have taken them. Actually, medications have so many undesirable side effects, many sneaky and permanent, that I sometimes wonder if.....

Linnie

[Porkette]

Hi Linnie,
I've thought about going off all my AED's or at least a few of them but when I was in the hospital for a veeg where they reduced my AED's the sz. got really bad so I know that if I go off the AED's or even cut back on them anymore I'm gone. Even my
Epi has told me this. I agree with you I don't like the side effects of them. One of my friends has told me about an herb called Lobelia that stops his sz. so I might look into that and give it a try. Here's wishing you well and May God Bless You!

Sue

[Tattoo2]

Sue, It is my understanding that intractable and refractory mean the same thing in that no medicine will stop them after a trial. To me, it is the reason we are possible surgery candidates or other options are recommended in the first place. Sue, to me you have always had refractory epilepsy since no med ever stopped your seizures. I am not sure why they are now adding now that since it seems to have been the case. You know what I'd like to see you try, but you didn't want to do that. I know how scary not being able to stop them can be as I was in the same position which made me look elsewhere and seek what I could to get them stopped if at all possible and did it alone too. I found those with new eyes, treatment success history, treatment modalities, philosophies, training, and experience. I am not sure if it is loyalty that keeps you at the same place with the same docs and they are the same team or "household/family", but your loyalty should be to yourself and yourself first and only. Next is family. Docs are not worthy nor deserving of your loyalty as they are there for your benefit and not the other way around. I wish so much that you could find a treatment team and modality that would work for you, but it sometimes has to be sought. You do have people who care about you very close by, so it would be harder for untoward things to happen to you which makes you blessed in that respect. I wish I was so blessed as I am very alone. Tattoo

[Porkette]

Hi Tattoo,
Thank you for such kind and supporting words. You are a dear friend to me and you have always been so please don't feel like you are alone. I want you to know that I'm here for you anytime day or night. The only thing that I haven't tried
is the medical marijuana that my new Epi wanted to me try but the former Epi that is retired told me it would do me no good and could cause more problems for me especially since I am drug resistant. I was also told by this Epi that it could
lead to more brain damage and I didn't want to take that chance.
I'm not going to give up I'm going to look around in other countries and see if they have any new treatments for epilepsy and hopefully I will be able to try them. You are a wonderful friend with a heart of gold. I wish you only the best
and May God Bless You!

Sue

[howdydave]

Howdy Sue!

I used to think quite a bit about SUDEP (Sudden Unexplained Death in Epilepsy.)
I stopped worrying about it due to the fact that everybody dies.

The issue isn't how you die, but how you live!

Although seizures may not be totally eliminated for many of us, the can be reduced with medication!

I always tell people that since I will never get a drivers license, I will always be assured of getting the back seat when I go out on a double date!

[Porkette]

Howdy Dave,
I understand where you are coming from but I guess what bothers me the most is I had the surgery and was doing well for a few yrs. and then things went down hill for me and the sz. increased.
I will never understand why but I know that ithas happened for a reason and hopefully I will understand within time.
Thanks for your kind words and May God Bless You!
Sue

[howdydave]

Hopes dashed against a stone are a hard thing to deal with...

Eventually, we must all get up, lick our wounds and continue on in our own way.

[Tattoo2]

Sue, I am going to share a portion of the email I sent to you.
Re the medical marijuana! I would try it in a heartbeat! I fully believe that there are so many good qualities to it and if you think about it, there must be or the pharm co would not object to its being legal. I also heard and bet that the components have already been separated and used in some medications. I remember reading years ago the THC was used in Depakote! That is the one med that stopped my bedwetting, and it is used as a mood stabilizer!! I would bet on it but don't know for sure. Now that it is an option for you, I would not refuse that option!!! I would try it for sure if it may help me decrease or rid me of seizures. I would not fear any kind of addiction any more than I would from the pharmaceuticals we have available. I feared what my seizures were doing to me so much more. I do hope you get the opportunity to try it and do so! Some docs do not like any competition, and if the medical marijuana was not something he suggested, doesn't understand nor accept, or is not willing nor able to have access to it, I can see him finding fault with it. This is about you though and no one else! I also recall your being willing to participate in a clinical trial if there was a possibility that the new untested medication would stop your seizures. Consider this a clinical trial as it probably is just that except there is more known about the effects of marihuana than the untested untried "drugs" the pharm co wants to sell.
I don't see Refractory and TLE as being in the same catrgory at all. TLE says where it is located and based on what we know about TLE, what types of seizures you/we probably have. Refractory means that they cannot control them. So the type of epilepsy is TLE, but the seizures are Refractory. So, I guess they just say you have Refractory Epilepsy meaning it is not controllable with typical means. Your docs may have to use that word in order for it to be paid for or, better yet, for them to be able to order it!!!! That word may need to be there to prove it is Medically Necessary!!!! I bet anything they have to have it in your chart. I had Intractable since the medications would not control mine either. I hope the medical marijuana works for you and hope you give it a try Keep us posted. Tattoo

[Porkette]

Hi Tattoo,
I have an appt. with my Epi in a couple of months and I am seriously thinking about giving the medical marijuana a try the only thing I would want to do is maybe be admitted into the hospital for a few days for observation and safety since I've
been taking vimpat, Diamox and mysoline (primidone) for a long time and I know it will be hard to go off any of these drugs. When I started Depakote back in the 1970's it was a new drug and I was admitted into the hospital for safety. I just don't want
the Epi to add on medical marijuana to the other 3 AED's I'm taking. Before I forget to ask what is THC? I'm not that smart when it comes to chemistry. Thanks for your time and help and May God Bless You!

Sue

[howdydave]

From what I hear, medical marijuana can be a real pain in NY State.

The last I heard, you had to go to a medical facility and consume it on site.

[Porkette]

Hi Dave,
After looking into the medical marijuana I don't think I will try it even though my Epi wants me to. I found out that it causes hallucinations, and weight loss and I've lost a lot of weight and I can't
lose anymore. Try finding a size 0 when you are buy some jeans. It's not that easy. Thanks for all of your help and support.
I wish you only the best and May God Bless You!

Sue

[Travis from MN]

THC (Tetrahydrocannabinol) is the component in marijuana that gets people "high". With epilepsy, you do not want the THC, rather you want the CBD (cannabidiol) content of the plant. CBD does not cause the "high" effect. This component seems to work when trying to control seizures.

As for how to administer it? If ingested it stays in the body longer than is smoked. Teas are common, it can also be mixed/baked into foods. If a person has an extended precursor, quickly inhaling once or twice gets it into the body quickly when compared to eating.

I started doing a LOT of research on this after seemingly medication after medication failed or had no effect. They never legalized it in my state, so I don't know if it would have helped me or not.

--Travis