5 mg. No Side Effects

So I am taking 5 mg a day of this CW oil, Zero side effects so far.  Most difficult part is finding the time to take it.  The Realm of Caring website recommends waiting 2 hours from when you took your prescription meds.  Well, that can be difficult to do if you eat late or have to remember mid morning after breakfast.  So I am trying to figure out how to best deal with that technical issue.  May have to bring my bottle of CW with me to work or something.

The Realm Of Caring

A helpful comment on my last post mentioned getting dosing guidelines from The Realm of Caring, so I went there to check it.  I found a plethora of information regarding medical cannabis.  In order to get the recommended dosing guidelines, I had to sign in as a "Client".  What I found was very interesting, they started at a higher dosage than my own titration schedule ends with.  So, I will continue my previous schedule up to 40 mg, and then start with their schedule of 50 mg and increasing by 50 every 4 weeks up to 200 mg.

One very interesting point they mention is to take your CBD two hours from your dosage of pharmaceutical medications.

First Dose - CW Hemp Oil

Took my first small dose with dinner. No noticeable side effects or allergic reaction.  Here is my plan in mg.
Day 1 - 5: 5 mg
Day 6-10: 10 mg
Day 11 - 15: 15 mg
Day 16 - 20: 20 mg
Day 21 - 25: 30 mg
Day 26 - 30: 40 mg
Feel free to ask me questions about the product:
CW Hemp Oil

CW Hemp

Long time, no post.  But I am back again to record some data on how well CW Hemp oil works.
Because my three insanely expensive prescription medications are not giving me the %100 seizure free coverage that I would like, I am going to try adding some CW Hemp Oil to the mix.  Now, just like prescriptions, the Oil does not specify an exact dosage per pound of an adult or child in order to stop various types of seizures, so it will take some experimentation.  I will attempt to record the results.  Should get my oil some time this week.
Cheers,
Scott

One Brain Fart at a Time

Copperpaws just started a new blog on living with his particular brand of epilepsy.  You can check it out at:  OneBrainFart.blogspot.com

Living Well With Epilepsy

I checked out some of my followers websites today and found this really great one by Jessica Smith:
Living Well With Epilepsy  It has a ton of information and is very pro-awareness.  Do visit!
Cheers!
Scott

Been a while...

Good news, no seizures in a long time.  I have been really careful about getting enough sleep and taking my meds on time and consistently.  I changed up the background on the site, the green plants were really hurting my eyes!  I hope everyone visiting gets some use out of my extensive archives describing my adventures with seizures.  Feel free to send me questions.
Cheers!

Living Well With Epilepsy

Here is a shout out to Living Well With Epilepsy, a new blog by Jessica Kennan Smith. The blog has some great insights into the funding disparities between other conditions and epilepsy. Although just as many people die each year from epilepsy as from some other diseases, epilepsy receives a fraction of the funding of most other common conditions.

Fit2BeParents

Although I haven't posted recently, it is because I haven't had any seizures in over a year! I am so grateful for that!

I did have a recent contact from a new website called Fit2beParents. This website focuses on new parents who suffer from epilepsy. It provides information on how to get through the pregnancy and how to make it through the difficulties of raising a baby while at the same time making sure you are successfully dealing with the difficulties of taking care of oneself or one's spouse. It is very unique in that it gives advice for mothers and fathers. The site is run by two people that have epilepsy and are giving their first-hand advice. I highly recomend it: Fit2beParents.co.uk

Blurred Vision

I started taking a higher dose of Vimpat 300 mg twice a day this weekend. I did not seem to have any problems on Sunday, but this morning I have had a few instances where I was dizzy or had blurred vision. I am not sure if it is from the medicine, but those are some of the reported side effects. I will keep monitoring to see what happens. My Depakote is down to 250 mg twice a day. We shall see what happens.

Vimpat 200 Mg

Today is my first day taking 200 Mg of Vimpat twice a day. I am being especially wary of any of the possible know side effects, such as blurred vision or dizzyness. It has been two hours since my first dose. No sign of issues yet.

Petite Mal Seizure

I started getting hot while eating lunch today and had a short petite mal seizure. I quickly activated my VNS, drank some cold soda, and took off my coat. I am feeling better now. I had not taken my lunch meds yet, so I took those too.

5 Days on Vimpat

I've been on the Vimpat for 5 days now. So far no side-effects or allergic reactions. Granted, this is at the lowest dosage of 50mg 2 times a day. Still, a good sign...

Vimpat - Day One

I have decided, after speaking with my Dr., to try a new medication for epilepsy called Vimpat. I began taking a very low dose on Monday. Hopefully I will be able to use it in place of the Depakote that I take now. We shall see.

Another Living With Epilepsy

I found another epilepsy blog today that cronicles a young child's experience with epilepsy. A pretty good read.

CURE for Epilepsy

OK, I haven't been here for a while, but really needed to point out the following. If you've been over to Federal Review to read my rants and Emeriol's reasoned discourse, then you know I'm a strong conservative and consistent supporter of Republicans. But I took extra joy in Sarah Palin's potential focus on "special needs" children as Vice President - because, after all, children with epilepsy not only have special needs in education and other matters, they have needs that vary so widely, some serious education or awareness-raisin' is needed. In any case, among my other disappointments on November 4, I was sad that Mrs. Palin would not have the opportunity to bring this issue to the debate in Washington.

But guess what. A reason for hope that the Obama Administration may even have some reason for focus directly on epilepsy itself. My lovely wife pointed out this video to me because she noticed the banner behind Mr. Obama and he roasted his new Chief of Staff Rahm Emmanuel.

For several years now, I have had this logo and link at the bottom of my page on Federal Review.



Guess who founded and runs this organization? Susan Axelrod, the wife of Barack Obama's campaign manager, David Axelrod. There's some good news. And while my 8-year old has had only one seizure since June 2007, the EEG is still not settled and others, such as Federal Review's own Emeriol, continue to fight seizures. I'm pleased that someone concerned about epilepsy research will have the new President's ear. And that's some wealth redistribution I can get behind.

This graphic from the CURE site shows how the Epilepsy Lobby (if there is one) has been very ineffective. You know you have a PR problem when a much larger number of afflicted are seeing much less comparative research investment. Perhaps that's about to change.

Crossposted on FederalReview.

Brain mapping...

Yesterday I did some brain mapping at the Institute. It went well, but I was pretty tired by the end. Next week I have another appointment scheduled with Dr. Dean. Hopefullly she will write me back to work part time. I am getting a bit stir-crazy. :)

No seizures today! :)

I had another good day with no seizures. :)

Doing Well

Nine days no seizures! :)

Another Intense Gran-Mal Seizure

Scott had another intense gran-mal seizure this morning at approx. 12:45 am. Fortunately he did not fall out of bed or injure himself. This seizure lasted a bit longer than his usual tonic clonic seizures - it lasted a full 5 minutes. During the seizure, Scott let out an excruciating howl as if he were in intense pain. I swiped his VNS magnet several times both during and after the seizure. Nevertheless, Scott did stop breathing after taking several deep, jagged breaths. Swiping the magnet also did not seem to help with the recovery time as it was almost an hour before Scott could speak clearly or answer even the most simple questions. Scott has been resting peacefully since the seizure. I will have to wake him shortly to take his medications and eat breakfast. Please pray that Scott will have a peaceful, seizure-free day.