My Personal N=1

[AlohaBird]

Well, 18 days into this titration and I'm feeling great. I've kicked the last of the coughing out finally but it took a couple of weeks.

This weekend, I'm heading for San Diego to do Thanksgiving with some friends and my 2nd Mom. Also my 2nd Mom's 85th birthday. So I'll be over there for the next step down on the first.

Not only am I sleeping great, I have even managed to have the occasional "indulgence" such as a glass or two of wine without any ill effects.

I wonder if that cannabis paste is going to set off the noses of the drug sniffing dogs at the airport? It is totally legal stuff due to the low THC content but still, getting one's suitcase pulled open could be a hassle. I really think though that it has everything to do with how well I'm doing on this drug ramp-down.

When I'm in San Diego I'm going to be staying with a friend of mine who lives out near the beach so I think I will be able to not feel so big city overwhelmed. Also my 2nd Mom's place where I have stayed before is right under a huge high voltage power line, the kind that hums 24/7. It drives me nuts. I was thinking about our friend Michael here on CWE who is especially sensitive to electrical fields. He wouldn't be able to stand it there.

Also the beach area has cleaner air and a very walkable neighborhood with farm-to-table restaurants and organic "crunchy" food stores. The friend I'm staying with is the ultimate in "crunchy" complete with the Birkenstock sandals. She also has her own goats one of whom is possibly pregnant. Goat milk!

 

[masterjen]

I wonder if that cannabis paste is going to set off the noses of the drug sniffing dogs at the airport? It is totally legal stuff due to the low THC content but still, getting one's suitcase pulled open could be a hassle.

A doctor's note for medical marijuana approval that is notarized can make a huge difference to reduce any hassle as long as you are traveling within the same country.

 

[AlohaBird]

Yes, I have my official State of Hawaii medical MJ card. I will definitely take that along.

Does anybody know if dispensaries (particularly those in California) honor out of state cards for people on vacation? I wonder if I could buy some edibles like Maributter there.......

 

[MichaelJO7]

My 2nd Mom is 84 now (the one in Florida). Our contact has dwindled, however. She has seven children, and at least 32 great grandchildren by now. They keep her busy. She has been having her eyes done (cataracts).

I am glad to hear that the cannibus is helping. I continue to be interested in it. (I wish I could remember what the pharmacology book I read said about it.)

There are actually cannibus receptors in the brain, which, to me is not a coincidence.

The warmth of Hawaii and California are tempting. The Minnesota winter has begun, and my body has to work even harder to move. It was in the 20's last night, and the swamp in my back yard is frozen, as well as Max's outdoor water bowl(s).

Max sends a friendly whine to Valentino. (He whines in anticipation of playtime.)

 

[AlohaBird]

Yep, there is a whole endo-cannabinoid system.

Give "Holden's Hope" a google.

I have been in Minnesota at Christmas time once in my life and that was enough. I was dating a guy from there in college and he took me home to "meet the folks" on Christmas break.
As a southern California girl, I was absolutely flabbergasted. I did not know it was possible to be that cold.
I don't know how you manage with limited mobility when everything gets icy and slippery.

 

[AlohaBird]

Well, I am 6 days into my 75% off the Rx. (Sounds like a holiday sale )

I'm at only one out of the four 250 mg Valproic Acid capsules. So far so good. No sleep disturbances or seizures.

If all goes well getting off the VpA, then I will work on the Phenobarbital. Given the interaction between the two, this will probably be easier with only one drug in the mix.

 

[Nakamova]

That's great AB! I hope you continue to feel good (or better than good) as the VPA leaves your system.

 

[deeds]

Special Day.....

Happy Anniversary to me....
Today is the 1 year anniversary of the concussion that led to the Subdural Hematoma from the ten millionth seizure, followed by Emergency Burr Hole Surgery on Christmas Day.....
Intractable Seizures are no laughing matter. I have stayed on my meds, actually some of them were actually increased yet, I have still been wearing a biking helmet this whole time because I kept having seizures totally out of the blue, they didn't last long but I still continued to fall. I am only 5 ft tall but I promise you, it is a long way down.....
I love my Neurologist and I am proud to be a CANADIAN!!!
I was left with a few choices: Felbamate
Fycompa
The Ketogenic Diet
Medical Marijuana

Well, Google eliminated the top 2 within minutes, or less. The Ketogenic Diet, hmmmm talk about a full time job, that I would have continued if I thought it was of any help.
A few short weeks ago, I fell 4 times and that was just in one day, yes OUCH and I love my new puppy but I have had to hire people to come by and walk her at night.
My doctor suggested the Marijuana back in the summer and I was up north at family cottage, madly on Modified Atkins Diet and smoking sometimes...
Well, now it is December and I had a telephone chat with the registered nurse at the Marijuana company, which is called MEDreleaf. She told me that I needed to consume the product on a schedule, as I would any other meds, which for some reason didn't occur to me.I don't like to lie around all day feeling stoned so I use a strain called Avidekel, which is about 16% CBD and 0.17% THC. I also have a strain called Midnight, weighing in at 13.47% CBD and 11.43%THC.
But, every 2- 2 1/2 hours I am instructed to smoke but...... I have had between 1-3 seizures a day, baby mini ones, and no falling. A miracle??? I doubt it.
So spectacular, I don't even want to talk about it.
Interestingly enough, I have been taking ONFI for decades, since it has been available in Canada forever. I have even had to increase it since last year but, apparently, in the studies re:CBD success, the patients taking ONFI had better results.
My Dr thinks THC could be just as helpful, I just like to be functional.
I have one problem though, we are off to a warm climate for Christmas, where I will get to see if it really is the weed.
I cannot take the CBD only product to the state of Florida. This is just plain silly but I know that it is going to be a problem.
I just hope next year is a whole lot less exciting.

Aloha, I totally understand your holiday sale mentality.

This is not pretty.

P.S I love my puppy, she is a cockapoo named Penny.

 

[Nakamova]

Congrats deeds! I hope you are able to stay healthy during the holiday season. Intersting to hear that the MJ has been working for you. I think AB has mentioned a CBD-free product called Holden's Hope. (http://holdenshope.com/) Maybe something like that would be effective for you and would tide you over.

 

[deeds]

Holden's Hope

Sounds great, and exactly what I need, It is high in CBD but I don't think they will ship to Florida.
I will try.
It would be so nice to feel like a normal person for once, and yes I know that sounds awful....

 

[Nakamova]

Sorry about that, I misspoke in saying it was CBD-free. No need to apologize for wanting to feel like a "normal" person. We know what you mean.

 

[AlohaBird]

Sounds great, and exactly what I need, It is high in CBD but I don't think they will ship to Florida.
I will try.

They ship to all 50 states, even to me in Hawaii. The Holden's Hope stuff also doesn't make you feel 'stoned' so much as just sort of relaxed. It gets you the benefit of consuming the whole plant without the smoke part (which I don't like for the same reason I don't smoke cigs).

Congrats on finding something that is working for you (and on being willing to experiment with alternatives). I really think the HH stuff is helping me ease the transition off the meds. I have tried to cut back before but it has never been so effortless.

 

[deeds]

Thanks

Thank You so much,
I am now going to arrive in Florida with a tin of Holden's Hope waiting for me.
I am a bit confused about the dosing, I am now smoking a strain from Israel called Avidekel via the vape and taking Charlotte's Web, .5 ml three times a day.
It is doing a whole lot more than all my drugs combined.
Thrilled, and I know, one day at a time...

Big Hugs to Aloha & Nakamova!!!

:hugs::hugs::hugs::hugs::hugs::hugs::hugs::hugs::hugs::

 

[AlohaBird]

Yep, the HH people are very careful NOT to give precise dosing information because that would stray into the territory of "prescribing", which they are not allowed to do not being your doctor.

You can play around with it to find what is right for you. When I first started taking it I think I was overdoing it a bit because I was sleeping for 10-11 hours straight. I cut back a bit and now am fine with 8-9 hours.

:hugs: back atcha

 

[deeds]

HH

Mr CannaPaste who makes the HH, very friendly those Coloradians.... suggested 25mg/apparently the size of the accompanying spoon 5x daily.
The Charlotte's Web potion I have been taking is 1 1/2 ml divided into 3 doses of 0.5ml each
The web is allegedly 43 g CBD /serving so basically 120g
The HH is allegedly 25mg CBD, so the total would be 125g in a perfect world.
Also, at home I do consume the high CBD weed which I will not be taking to Florida....
Does this make sense??????
Also, my steady diet of Dilantin, Keppra and Clobazam which I will be taking as prescribed.
Thanks for all your support.
Dd

 

[deeds]

My personal=2

I have another idea that might make more sense......
Maybe I should put the vaporizer away, starting now and then I can take only CW at home for the next 10 days and then just the HH when I get to Florida.
It will allow me to be more precise re:dosage.
Any thoughts would be welcome!!

:soap:

 

[AlohaBird]

Yes, Mr & Mrs. CannaPaste are really sweet. They just had a baby and still find time to answer emails.

I think that sounds like a good plan. Get a steady dose that works for you before you add the stress of traveling.

I'm in California right now visiting where I grew up. So today I went and got a CA medical MJ card and went shopping at a local dispensary. They are supposed to insist on a local ID but I get the impression the rules are pretty laxly observed since my DL is from Hawaii and nobody objected as long as I had money in hand.

That dispensary was like being a kid in a candy store, literally. They had all kinds of interesting edibles such as chocolate bars, mints, gummy bears, a powder that gets stirred in a drink, and I also got a vaporizer pen for free as my "first time client bonus". Of course this keeps you coming back to buy the cartridges. The chocolate bars even came in various CBD/THC ratios. Yumm. If ever there was a good excuse to have chocolate, this is it. I'm not having a treat, it's my medicine. And they had cannabis infused honey. How awesome is that?

 

[deeds]

Yes, AB, I understand the local dispensaries are lots of fun.
I was a bit concerned because I do not drive, another side effect of guess what....
I thank you for your response, as of today I am not going to smoke anymore, but I will increase CW for the next 10 days....
The thought of a holiday without a seizure would be a dream come true. I shall keep the fingers crossed.
Actually, we were supposed to be going to California but last week I started getting worried about that 3 hour time difference so we have changed our plans to accommodate my brain.
My daughter used to live in Vancouver and everytime I visited her it was a disaster. Now she is moving to Shanghai for a year which is totally awesome for her. She teaches ESL and gives hula hoop classes. I will miss her but I am very proud of her. Maybe I will find a new love, or a new like, since I have been divorced for about 10 years.
Thankfully, I have very cute puppy, sadly dogs spoil us in the unconditional love dept. but I am ok with that.
How long are you in California??
Never mind, Mr CannaPaste returning emails.... he answers his phone "hi deedee". I wonder how often he does that??.
Lovely people aren't we??

 

[AlohaBird]

I'm doing a trip of about a month to San Diego where I grew up. I got here in time for Thanksgiving and am staying for my Mom's 85th birthday coming up in another week and a half. I am VERY ready however to get back home to my lush green island home where everything moves at a slower pace. I think it is healthier for me.

No matter how much we love our relatives, holidays can really be stressful before you even get to the actual travel and timezones part. I seem to be managing well however in the sleep department which is often a problem for me when traveling. Adding the Holden's Hope is the only thing I've changed so I think it does make a difference.

Last night I also sampled a bit of my "special" chocolate bar and one of the mints. I must admit I was a bit stoned but that was right before bed so I didn't need to drive anywhere.

Since my seizures are nocturnal, I think the edibles give me better coverage than smoking because they digest along with the dinner in my stomach and so are "time released" over the 8-9 hours I'm in bed. That's the theory anyway.

 

[deeds]

Friend in Hawaii !!!!!!!!!!!!!!!

:hi5:Why it would be my pleasure to be your friend!!
Interestingly enough I just spoke with Charlotte's Web folks. Very nice there too!!
Last week when I placed the order John told me I should take .5ml 3x daily.
Today however, he changed his mind and said that .5ml is actually 25mg of CBD which could be enough.
Now, I should divide .5 ml by 3.... yikes.
I told him I was worried I would have a seizure but he said CBD is stored in the fat cells so I will not react as if I forgot to take one of my prescribed poisons.
So far nuttin rattling my brain, yet..... shhhhhh
Going to put on the helmet and take Penny the cockapoo outside.
It is 5pm here but it looks like midnight......

later