Seizure Tissue

[Cint]

there is a place in Colorado state where they grow a special type of Cannabis known as Charlottes Web. They have a lab out there that refines the plant into an oil called CBD Oil. You drink it. There is no THC in this oil. It stops seizures as well as the shaking in Parkinsons disease. It helps almost any brain illness. So far, only the 1 farm in Colorado can grow this plant, and only their chemists can turn it into CBD Oil. Our government won't allow Docs to use. How foolish. Almost all drugs came from plants or natural substances. Penicillin came from the crusty mold on old bread.

I think CBD Oil has worked for everyone who tried it. But we can't get it in NY.

Yes, I mentioned this on another thread yesterday.

http://www.coping-with-epilepsy.com/forums/f20/new-forums-24307/

TheCharlotte's Web, but it started right here in Colorado specifically for intractable epilepsy. Here is the website about it: https://theroc.us/index.php?option=c...=57&Itemid=388
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[Tez_20]

I was diagnosed with epilepsy 34 years ago. True, we didn't have all the modern day MRI equipment, but we did have CT scans and EEG equipment for diagnosis. And I was initially diagnosed as having hypoglycemia, until I was in an accident.

And after I had my 1st unsuccessful temporal lobectomy, my neurologist suggested I have a 2nd surgery. We did another MRI and the neurosurgeon said he would not go there because the damage in my brain was too deep in my hippocampus. I could end up like an end state Alzheimer patient, unable to remember anyone, including my own name. Forget that, I already have enough trouble remembering names. And that is what the hippocampus area of the brain is good for- Memory. When it is messed with, memory will be effected.

Hi Cint,
You've definitely been through it...several specialists in the late 90's stated it was temporal lobe with me but it was a right game trying to get my neuro to send me to the brain surgeon, he was set on my psychiatric history and those meds they pumped into me besides steroids did the brain damage and to think in the 80s when they had me as a schizophrenic they wanted to do ECT ontop.

I get angry just thinking some of my years locked up in asylums on 24/7 watch

 

[SlimBlue]

As much as I'm an advocate for CBD and other cannabinoids, be careful not to pin all your hopes on it- like any Deus Ex Machina. I just wouldn't want to see you gutted if it didn't work

More testing and research definitely needs doing on it and other cannabinoids. For instance CBC-A, which is apparently 10 times more potent in managing stress levels, and so requires a tenth of the amount, is looking the best current candidate for synthesizing into a mass-produced medication.

 

[Cint]

As much as I'm an advocate for CBD and other cannabinoids, be careful not to pin all your hopes on it- like any Deus Ex Machina. I just wouldn't want to see you gutted if it didn't work

I wouldn't want to see that happen, either. But did you watch the video:

https://theroc.us/index.php?option=c...=57&Itemid=388

And there is a new study going on at the hospital where my neuro practices (UCHSC):

http://time.com/3264691/medical-marijauna-epilepsy-research-charlottes-web-study/

 

[SlimBlue]

It's so good that you're finally getting high CBD level strains over there, and there's finally decent research going on. I can't imagine why it's taken so long, they've been available in Europe since the late 90s.

I never had the stones back then to stand up and say 'NO! I'm gonna stop the meds and just experiment with the oil." - everyone around me - even the stoners- were all begging me not to, and my seizures were pretty frequent back then..

I definitely think I'd give it a go now though

 

[Cint]

Here is more info from the Epilepsy Foundation of America on Medical Marijuana:

http://www.epilepsy.com/learn/treat...ent-approaches/medical-marijuana-and-epilepsy

The Epilepsy Foundation supports the rights of patients and families living with seizures and epilepsy to access physician directed care, including medical marijuana. Nothing should stand in the way of patients gaining access to potentially life-saving treatment. If a patient and their healthcare professionals feel that the potential benefits of medical marijuana for uncontrolled epilepsy outweigh the risks, then families need to have that legal option now -- not in five years or ten years. For people living with severe uncontrolled epilepsy, time is not on their side. This is a very important, difficult, and personal decision that should be made by a patient and family working with their healthcare team.

Treatments for epilepsy with any form of marijuana come with risks, as there is much that is not known about its effects. The consistency of available formulations also needs to be addressed. Caution is appropriate, and we strongly recommend that patients with uncontrolled seizures seek out an epilepsy specialist. However, existing therapies have real side-effects both known and unknown, and, just as there are risks with any treatment, every day without seizure control is a risk to life. Every seizure is a possible opportunity lost to live, learn, and grow.

The Epilepsy Foundation calls for an end to Drug Enforcement Administration (DEA) restrictions that limit clinical trials and research into medical marijuana for epilepsy. We applaud recent decisions that have allowed clinical trials of Cannabidiol (CBD) oil, to begin in several states. Certain components of medical marijuana, including CBD, have shown effectiveness in animal studies, and there have been encouraging anecdotal reports from patients. But further research and unbiased clinical trials are needed to establish whether and in what forms medical marijuana is or is not effective and safe. Restrictions on the use of medical marijuana continue to stand in the way of this research.

 

[SlimBlue]

Restrictions on the use of medical marijuana continue to stand in the way of this research.

Exactly the same as over here

I had to travel over to Holland to obtain it back then- and I did experiment with it a lot, a few years after I was diagnosed. And yes my seizure frequency did calm down- but since I'd only recently had the addition of Lamictal and Keppra (and stayed the same after I stopped experimenting) I have no way of knowing for sure if it really helped me at the time.

I knew very little about E and the meds back then and I really didn't want to 'rock the boat' in case it was actually just that addition that was helping me.

With all the interest in it, there are now several main seed banks which only sell non-THC strains (lots of Charlotte's Web variants)- which has been a great boon to those who like to grow their own.

Back then the best way to obtain large amounts of other cannabinoids like CBC-A to experiment with, was to let high-THC plants oxidise through being incorrectly cured and having the THC degrade.

I don't want to hijack this very important thread- plenty of places to chat about CBD on here...

 

[JaneC]

My husband has brain surgery a few months ago, not for E but for a pituitary tumour. It was traumatic and has probably left him worse off than he was beforehand.

I can understand how people become desperate if they can't get their E under control but I think you have to be very, very careful that having someone poking around your head isn't going to send you from the frying pan to the fire. I'm pretty glad my daughter's E is generalised, making surgery something she will never have to make a decision on.

 

[Afriend]

Today, Friday, may be my last chance to talk to D. She spends the weekends with her grown daughter. She's supposed to go into the hospital Mon morning. 1st they will do a MRI then it will take 6 hours to put electrodes in her brain. They will monitor her 5 days. After that, they intend to do surgery. This doesn't sound right to me.

One issue here is what happens to us when we get older and our young lives didn't go well. I'm facing this too. But for D, she's 61 and she hoped to be cured of E by now. If she says no to this, there are no other options. I suppose she can try other meds, but she's afraid of meds and I don't blame her. But another thing I didn't want to mention was up until 5 years ago D drank 2 or 3 times a week. Can any of the meds she took ever have had a fair chance to work, since she mixed them with alcohol? Would anyone care to comment on that?
So if D says no to this surgery the Docs will give up on her, and she will become depressed. She's been better since the Docs said they can cure the E with surgery. But can they?

I guess if a person had surgery for E and everything worked out great, they wouldn't be here to say it. That's kinda like an Internet truism. The success stories don't come here and post it. It's a shame, but that's true.

Thanks

 

[Cint]

Today, Friday, may be my last chance to talk to D. She spends the weekends with her grown daughter. She's supposed to go into the hospital Mon morning. 1st they will do a MRI then it will take 6 hours to put electrodes in her brain. They will monitor her 5 days. After that, they intend to do surgery. This doesn't sound right to me.

This sounds like the type of surgery I had done. First, they did the brain mapping to identify the precise area where the seizures begin. To do this, they will have to open her head and place electrodes on the surface of the brain, so, yes it is major surgery. And then, if the neurosurgeon feels like the surgery will not be harmful, he will more than likely proceed with the brain surgery. Here is a website about his procedure:

http://www.epilepsy.com/learn/treating-seizures-and-epilepsy/surgery/pre-surgery-tests/brain-mapping

One issue here is what happens to us when we get older and our young lives didn't go well. I'm facing this too. But for D, she's 61 and she hoped to be cured of E by now. If she says no to this, there are no other options. I suppose she can try other meds, but she's afraid of meds and I don't blame her. But another thing I didn't want to mention was up until 5 years ago D drank 2 or 3 times a week. Can any of the meds she took ever have had a fair chance to work, since she mixed them with alcohol? Would anyone care to comment on that?

The procedure doesn't sound right to me either, being that she is 61 years of age. I don't know if it's the right or left side their looking at operating on, but surgery on the left side can end up with more problems, especially at her age. The alcohol is a depressant, and if consumed frequently it can cause seizures to happen. Sometimes, alcoholics have seizures when trying to stop.

So if D says no to this surgery the Docs will give up on her, and she will become depressed. She's been better since the Docs said they can cure the E with surgery. But can they?

I guess if a person had surgery for E and everything worked out great, they wouldn't be here to say it. That's kinda like an Internet truism. The success stories don't come here and post it. It's a shame, but that's true

There is NO "CURE" for epilepsy. Just ways to control it. For some, yes surgery has worked, so of course they say surgery was/is a cure. But there are side effects, depending on what part of the brain is removed. No more seizures doesn't necessarily mean no more problems. For some, memory is worse, depression, they won't know until months after surgery.

But there are other treatments available, too;
http://www.epilepsy.com/learn/treating-seizures-and-epilepsy/devices

 

[Afriend]

Thanks for answering Clint,

They are planning on removing parts of the left temporal lobe. And since D is right handed, the left brain should be controlling speech, memory, and other cognitive functions. What makes this more of a worry is in all her life the Docs always thought the right temporal lobe caused the seizures. But they never examined her as much as now. In addition, usually when they hospitalized her for the constant EEG monitoring, D would only have 1 seizure. This is almost funny. We all know stress causes seizures. When D was hospitalized for the EEG monitoring, she was give a private room. Nurses made the bed for her, and she didn't have to cook. Finally, the psycho neurologists came in and let her talk about her life. In short, she loved it. It was like a mini vacation for D. That was why she never had seizures. But this time they believe it's the left temporal lobe. Once they remove it, they can't put it back. I don't think D realizes how permanent this is.

D has also never broken a bone. She was burned 3 times and had many bruises. But no broken bones. I have had 3 broken bones. That pain is almost beyond description. To do this surgery they have to cut the skull, which is bone. I think that alone is going to cause more pain than D realizes.

If this surgery can control the seizures down to 1 a year then it's all worth it. But if she continues to have seizures, she will be so angry at first, but then depressed. I am really worried about her. I'd feel better if after the invasive brain testing she was set home and allowed to think about it.

So Clint how are you now? Are you still having seizures, how many?
I also didn't know hypoglycemia can cause seizures? My pharmacist has a 3yr old daughter who was born with hypoglycemia. Do you think she can develop seizures?

 

[Cint]

If this surgery can control the seizures down to 1 a year then it's all worth it. But if she continues to have seizures, she will be so angry at first, but then depressed. I am really worried about her. I'd feel better if after the invasive brain testing she was set home and allowed to think about it.

So Clint how are you now? Are you still having seizures, how many?
I also didn't know hypoglycemia can cause seizures? My pharmacist has a 3yr old daughter who was born with hypoglycemia. Do you think she can develop seizures?

I will answer your question first. Yes, I am still having seizures. After the lobectomy, I was seizure-free for 14 months, and the they came back with vengeance. I was only having CPs before surgery, 14 months later, I had a big time TC seizure. And then I was having CPs along with TCs, several TCs a month. We tried about 10 different meds for 7 years, and in 1997, I had my first VNS surgery. It has certainly helped control the TCs, but hasn't stopped all the CPs.

I was certainly angry after the seizures started. And the depression, although it started 3 months after surgery, it got really bad when the seizures started. I was suicidal when seizures started again. How could I put all my faith in one god and be betrayed like that? How could a god do that to me if I had faith?

If a person has hypoglycemia that isn't under control, then they could have a seizure from it. I also have Type 1 Diabetes and have suffered a seizure from low blood sugar. Had to be taken to the hospital.

I, too, hope your friend seriously considers brain surgery after having the brain testing done. Like you said, it cannot be undone! A very, very serious surgery to consider.

 

[Afriend]

Thank you for responding Clint. I spoke to D Sat. She is going in Mon morning. She wants them to do the brain mapping and put in the electrodes. She wants an answer as to why she has seizures. D wasn't born with seizures. They started when she was 14, out of the blue. So all these years she feels like there should be something wrong that causes them.

I learned in collage that we really don't understand the brain very well at all. Even though that was 30+ years ago, I think we still don't understand the brain.
In years past, I had a car and I would have been there everyday. No car means I can't get there. Her grown daughter can, but she has work and a disabled husband who needs her. I'm afraid they will talk D into getting the surgery. Docs can be very intimidating. And D will be alone. I have a hunch that just doing the brain mapping is going to leave D feeling confused and in pain. I hope they give her meds for the pain. But while I hope they do, I know all the opiate pain killers will slow down her thinking and effect her logic. I've been living with chronic pain since 2002. So I'm more familiar with opioids than I ever wanted to be.

I hope nothing goes wrong Mon. I told D that I'll call her Wed in the hospital.

 

[Afriend]

Hello All,

Again, I thank everyone who responded to me. I want to tell you all that D decided not to go. I am very relieved to hear this. She said she was re reading what they were going to do. For the 1st time she noticed that the same day they would remove the electrodes, they would also do the surgery. We thought they would wake her up after removing the electrodes, tell her the results, and give her at least 1 day to think about it. But no, surgery would have been done at the same time. I realize this is probably to minimize the risk of infection. But it scared D enough so she called it off. I'm glad.

I had also wrote to the Governor of NYS regarding the experimental medical Marijuana program he is implementing. Sat I received an answer saying epilepsy is 1 of the illnesses that will be treated during this program. Now I have to find out how to get D into the program. D is hesitant, even though when we were young she said she never had a seizure after smoking weed. I reminded her that if she gets in the MM program and she doesn't like it, she can just stop it. There's nothing to lose. But once they do surgery, they can't put back what they take out.

I think D made a wise decision.