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demoncleaner

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Reply with quote  #1 
Sup CVSA, long time. 

I am healthy, thriving, working very successfully and in the best place of my life.  I am knock on wood, some 19 months since last episode and daily symptoms are nearly gone. I do have some sort of damage that never seems to heal up all the way around my valve, but it is not waking me up anymore after 4 hours.

I have pretty much rebuilt my life in the last 3 years, and went from begging Social Security for SSDI for nearly a decade, unable to hold a job, to leasing a new Mercedes last year and on pace for 6 figures in 2017, working only for myself online. It is absolutely surreal, and I feel very blessed to be on my feet again thriving. To anyone stuggling with this beast and the employment fallout.....look into ways to make money online such as affiliate or Amazon FBA [wink]

I have been using cannabis extensively,....just like I was warned not to by the doctors. A big part of my strategy has been migraine prevention and elimination of personal stress triggers as well as diet to get myself back in a balanced state again. I am back to eating pretty much what I want now, with a focus on keeping sugar out or limited.

I just now read this study, and of course, thought about the CVSA board, it's stance on cannabis that relegated comments dealing with a natural plant to this gated sub category(is it still pw protected, I noticed I wasn't prompted? If not, kudos), and it's stance on substances like Ami that many patients here are taking.

http://www.medicalnewstoday.com/articles/318145.php

Not news to folks like me, but it is time we dispense with the fear about cannabis as an alternative to damaging pharma and start looking at facts instead of fallacy.

Hope any of my old friends and acquaintances here are doing well, I wish you all the best. I left this community precisely over the cannabis issue and the attitude regarding cannabis by the higher ups here, but still think of peeps here. Be well!
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ginny

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Reply with quote  #2 
So good to hear from you and such great news!  I am excited that you are able to work, and have a great life going on.

There is no more password protection required on this forum.  The need for the protection is no longer required, and hopefully we can keep this forum with no password.

I read the article,thank you for posting the link.  


Please keep us posted on how you are doing.  I am truly thrilled for you.

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wynnak

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Reply with quote  #3 
My  son is the CVSer. Our entire plan of regulating and controlling his CVS was based on migraine management. It has been the best strategy so far. we also have his maintenance meds down to pretty much vitamins that support migraine management. He needs others when he is episodic, but not as frequently. It makes this momma happy to not have to give him the harmful meds that we used to. When he was at his worst, they just kept throwing more and more meds at him and it eventually made him sicker. His IV pole was covered with devices pumping stuff in him. It was nice when they took him off everything and started over.

Glad you're doing well. Thanks for posting encouragement and hope for others.

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ginny

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Reply with quote  #4 
Demoncleaner, can you let us know which products you are using?  Oil? Smoking?  medicinal?  This should help others.  
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demoncleaner

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Reply with quote  #5 

oh god...lol. I had a lengthy response and hit backspace and it off paged! lol. sigh.  oh man, not typing that up again atm! I will respond some time, I am super busy. crap! [smile]

Demoncleaner, can you let us know which products you are using?  Oil? Smoking?  medicinal?  This should help others

I just smoke as usual ginny, same amount for some 30 years, lol. I take a CBD supplement every day just like a vitamin pretty much just as an anti cancer type thing for me.

CBD, in Epilepsy circles has been nothing short of miraculous for many patients.

In Mexico, hemp oil is a recognized medicine now. https://www.marijuana.com/news/2017/04/new-study-mexican-children-fighting-refractory-epilepsy-with-cbd/

GW is in advanced trials with their blend and are looking to lock up CBD for big pharma.
http://communitynewspapers.com/cannabis/cbd-administration-mitigates-seizure-frequency-phase-iii-trial/

Israel uses CBD as first line treatment for TBI's as immediate admin can dramatically reduce brain damage.

I think Dr. F had the best read on my particular manifestation in linking to migraine fundamentally. Cannabis, for me, is more preventative there. Once it gets going, either head or stomach, only a dose of an opiate for me will take the pain away. Cannabis can help with the nausea and sedation in my case, but pain seems to lie elsewhere in the case of migraine.  Concentrates may offer better relief here but my experience is limited. They can kill the nausea in a flare, but it's strain dependent. There are likely strains that might be suitable for migraine pain, but sussing them out.....

oooooo, I hate losing long posts! hahaha.

cheers all


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demoncleaner

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Reply with quote  #6 
Quote:
Originally Posted by wynnak
My  son is the CVSer. Our entire plan of regulating and controlling his CVS was based on migraine management. It has been the best strategy so far. we also have his maintenance meds down to pretty much vitamins that support migraine management. He needs others when he is episodic, but not as frequently. It makes this momma happy to not have to give him the harmful meds that we used to. When he was at his worst, they just kept throwing more and more meds at him and it eventually made him sicker. His IV pole was covered with devices pumping stuff in him. It was nice when they took him off everything and started over.

Glad you're doing well. Thanks for posting encouragement and hope for others.


Nice to meet you and I am glad there is a strategy that seems to be paying dividends for your son. It is hard enough to contemplate putting much of this off label pharma in ones OWN body.....it would be a very hard thing to have to continue to do as a parent. Should we try this?

There is a clear path to migraine in my case, and reduction of triggers has paid off well over the last year and half for me. Unfortunately, the "trigger" is my own mother, lol. But I have shouldered her stress, at various points in my life, to a ridiculous amount. 

Diet as well, is very important I think after the train jumps the track for any length of time. I think the episodes leave us in bad shape balance wise after living with them back to back for any duration. Allowing the gut to heal is important in stopping the cycle in my estimation. for my case. It helps lower the daily triggers.

cheers
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ginny

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Reply with quote  #7 

Losing long responses has happened to me as well.  I use an apple product lap top most of the time and at the top of the page, under Edit, there is an option to "Undo Typing".  This is working to bring back whatever I just lost.  

On a Windows system, I know there is something similar.  I use Windows at my office and keep meaning to check on where the "undo" typing option is located.

At one time I would also either type into Word or start to compose an email then I would copy and paste back onto the Message Board.  Maybe this would help?  It is so frustrating to lose what you have taken time to write.


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demoncleaner

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Reply with quote  #8 
Yes, I write longer stuff in Word as well [wink]
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Guitargirl

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Reply with quote  #9 
It's interesting I should log on to the board after so long and the first post I should read be yours.

Personally, for migraine/CVS prevention I am taking Amytriptaline and Topiramate - with some success but I still have enough attacks that my boss/ HR are on my case and I have to attend disciplinary meetings fairly regularly.

But hey, I have a job, which is something I would never dreamed I would have ten years ago (I'm 31 years old now).

Anyway...

The reason I logged on, was cause I read this article about medicinal use of cannabis oil being used successfully to treat very severe seizures (see link) in this 11 year old boy. I realise it's a different context/situation but I'd heard people on this site say they'd used the drug medicinally and I'd wondered to what success.

Anyway, here's the link to the article if anyone's interested, sorry for rambling,

Hope everyone has a peaceful, pain free night.

https://apple.news/AcaLjIE1LQ0eUuFM8oA0wBQ


Nicky

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wynnak

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Reply with quote  #10 
I've even seen Cannabis used for Dog Seizures. A cousin of mine has fantastic results for Cerebal Palsy for her child using the CBD oil. 

I am not quite on the train for this yet, mainly because I see that the uptick in usage is resulting in ER issues.

I have a neighbor that uses it for his Crohns and it is extremely helpful. I would make sure my physician was on board hoping to make it easier in the ER.. but Know that there will always be doctors that don't approve or condone the use of. Still such a touchy area especially when CVS is involved.

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demoncleaner

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Reply with quote  #11 
Hey Nicky, hope you are well! [wink]

I could link a ton of articles but I recalled that was frowned upon (direct linking) after I posted this post, I had forgot about that, it is not something I typically run into on forums, not sure if that has changed here. I often read articles and think of this community, but ran into so much grief historically over cannabis here.  The level of awareness and amount of reports from legal states with children that do not otherwise respond to pharma options, etc. is night and day compared to when I left the board here as is the general legal and social climate with regard to cannabis. The stories with regard to pharma resistant epilepsy alone, number in the hundreds, they are not isolated reports any longer, it's just, oh look, another kid that does well on cannabis oil. shocker. And it is not just epilepsy, because the substances present in cannabis interact with our endocannabinoid system to achieve homeostasis in the body in a holistic manner. This system is involved with many fundamental processes in the body, such as the regulation of cancer cells or the calming of electrical storms in the brain. 


I just had my first flare in 2 years, due to stress/migraine from my number 1 trigger source. After a good month of feeling migrainy up top, it finally hit my stomach.  I had been up and healthy for so long, I did not have any cannabis oil for dabbing on hand, as I don't dab much recreationally. It was about 2 weeks before I could drive to the nearest cannabis store, now that all of our stores are opening this year. I was able to drive a short 10 minutes, to a store in the middle of nowhere Alaska, and get .5 gram samples of oil for 3 strains in concentrate form for dabbing. 1 of the 3 was excellent for pain and nausea, and I was able to get sleep that day for the first time in 2 weeks. Near instant relief.  Over the last week, having the concentrate on board, especially in the morning, has been tremendously helpful, and I feel blessed, that the laws in my state allow for this to be a real option in 2017.  Before, I would have had to make my own oil, which is like saying, go bake a full course turkey dinner, when you are mid flare.

This attack was so painful—bile/acid burns to eusoph early on from vomiting— that when I finally gave in and hit the pure percoset in 1/2 tab doses, it was not even touching it. Generally, when I finally give in and choke an opiate down, it will at least kill the pain and allow me to pass out and sleep. That is usually around day 7-10 or so before I give in, I don't like to use them, plus, they are impossible for me to get, so I rathole them from the dentist for the worst pain. I actually cannot even get an appointment at the local clinics or hospitals now, just due to having opiate scripts in my history, it's laughable. Or not, lol.   

Nothing works, like cannabis oil, for that particular pain and nausea combo. at least for me. It is a blessing to have it available. Without it, I am typically screaming out loud in pain, frustrated, raw nerve, borderline insanity due to the pain. It is like being lit on fire. With just one good dab, I can get into the shower, and get into a meditative state, where I can begin to deal and process that pain, and get things back on some level of control. The pain is still there in most respects, I can just begin to process it essentially. That helps to wind the storm down mentally, which in turn can lead to more pain relief as muscles let go, etc.  The same thing they whack us with a benzo for essentially.

It is very interesting to me to watch the whole thing unfold from a state of remission, to a full flare, over the course of 6 weeks of really bad stress. It unfolded on the back side of what I would have perceived to be the peak stress time, and I just knew from all the migraine signals up top that I was likely headed for the cliff with my stomach, which was in great shape otherwise.  And then experiencing the introduction of cannabis oil concentrate into that picture after a couple of weeks of suffering.

It does everything that I would turn to a benzo for or an opiate without the bizarre side effects of the pharma.  I can get sleep and wake up not feeling drugged, just feeling rested. It helps stimulate my appetite when I have not eaten for a week. It takes effect INSTANTLY, which is huge. It is very easy to dose and does not require excessive dosing.  This is all just speaking for that peak flare time, when pain is at an 11 where you will do anything to make it stop, even for 5 minutes.

I had plenty of herb on hand. It is not the same as having an oil medicinally for a flare for me. The smoke is often harsh when your lining is cooked by vomiting, where a dab is pure oil, without the plant matter to make more smoke. It is clean and soothing. Dabs are around 80% pure cannabinoids, vs. 20% in an average raw plant sample so one dose is all that is needed typically.

So first hand, to have this option in Alaska now is a really amazing thing. The shop I visited, was in the middle of nowhere, literally. And all our shops,....you walk in and it is all people in their 40's, 50's, everyday looking people, not your stereotypical stoners. Funny enough, you go to the store, and it's all just normal folks and AK is pretty hard partying and crusty as far as there is plenty of seedy element around. You don't see it at the stores. It is like going to the book store, lol. It is just like NORMAL. In fact, the traffic at the local liquor stores looks rougher on any given day. 

I will be going back to the store tomorrow to try a few other strains, and it's amazing to be able to do that, and be able to go, ohhhhh, OK, THAT strain, that strain has a bit of the magic for this particular set of symptoms. Now I can go back, get another small sample, and throw that in the cupboard by the percoset to have onhand for a flare. That's huge.  This is why families can move to a state like CO and find the right blend of cannabis to effect change on illness that is nonresponsive to conventional pharma.  Some of the kids take awhile, it is not just take CBD. Sometimes they need small %'s of THC, or any number of other substances in cannabis to achieve results. This can only be done in legal cannabis states where a patient can experiment.

Being involved with hemp oil sales for the last 4 years, I have talked to many of these families myself. I know of families treating for years now for epilepsy, with just hemp oil, to great effect. From all over the planet. Before my FB page was deleted for "promotion of drug use", I had some 18k followers, and would get many pm's a day, from people in all sorts of medical situations. It became a lot to deal with, this barrage of people seeking health advice. I wound up writing a book....did I mention I wrote a book yall? lol. https://www.amazon.com/Cannabis-Oil-Companion-Comprehensive-Beginners-ebook/dp/B013HYD0HU   I wrote it to help address the same questions I was getting day in, day out via outlets like Facebook and have shockingly sold well over 1000 copies now. Not trying to post it for $$$, just linking for those of you that know me and might find that interesting that I actually went and wrote a book on the subject, lol. Likely no surprise to some of you [smile]

I always think of my fellow CVS'rs when coming across studies and info and it's good it sounds like the board eased up on the gating of cannabis info, which is a great thing.  Information can only help shed light on mysteries.  Cheers all.
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ginny

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Reply with quote  #12 
Nicky, How very wonderful to hear from you.  I feel like I followed your "growing up" and thank you for posting.  I think last post you were off to Sweden?

I am sorry that you are still having cycles.  I don't know if Cannabis is legal in the UK or in parts of it.  Even legal in my state, it is difficult to get a card and get to a dispensary then there is the cost.  The Federal Government still has it as illegal so it is approved for medicinal use on a state by state basis.

Please keep us posted.  

DemonCleaner, there is an entire forum dedicated to Cannabis now so you can send links.  The purpose of the Cannabis forum is to encourage dialogue on this herb.



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Guitargirl

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Reply with quote  #13 
Hello again Ginny thank you for your kind words, I mean to post more regularly but the time runs away with me and then somehow years pass by. I don't think cannabis is legal as far as I am aware even medicinally - I think Brits usually have to go abroad for legal cannabis treatment - the young boy in the story did. What o found amazing is he was severely disabled - at risk of dying to to his 300+ seizures a day - so there's no doubt it has helped him. I'm undecided on whether or not I would try it - I get enough stigma as it is because of my symptoms, most of my GPs just think I'm an attention seeker/hypochondriac as it is (and probably a prescription drugs misuser in their opinion), but I guess we all hold onto hope for some kind of perfect treatment that will give us our full health.

I spent 6 months in Norway while doing my Occupational therapy studies. Sadly I didn't finish my OT training - I struggled writing my dissertation with extreme nausea/headaches and when I look back on it, depression but I didn't tell anyone how much I was struggling until it was too late. So I failed the dissertation aspect and didn't get '"qualified OT" status.

On the positive though, I used my training/experience and have been working for 5 years now as a therapy assistant (occupational therapy and physio therapy). I've just this week started a new post in Trauma and Orthopaedics. It's still more than I thought was possible in my teens and early twenties when I could be vomiting for anything up to 50/60% of my life, so I'm happy to be working even if I do find it extremely difficult at times. Xxx

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ginny

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Reply with quote  #14 

Thank you for the update Nicky.  I am so happy you have a career and that you enjoy that career.  I hope that you do find an answer.  Keep reading here from time to time.  And not being in touch because you are busy is exactly the news we always hope to hear.  

I don't know if you were active when we found the supplements CoQ10, LCarnitine, B and for some, Chelated Magnesium?  If not, you might want to read the study on the CVSA web site.

Carnitine can be prescribed and hopefully your national health care would cover the cost.  I don't know where you can find a good source of CoQ10 in the UK.  At one time a few posted that they had ordered from the US.  That takes some time to get delivered to you but maybe you can google for pharmaceutical quality CoQ10 in the UK?  Or call someone at the UK CVSA?  They must have a source.  Most do improve on the supplements.  It is hard to know much when there is different dosing and no method of tracking due to different name brands of product and dosing differences.

Keep your great attitude and moving ahead with your life.  My daughter was around your age when she stopped CVS.  We did not do anything to stop it, she did not take any meds or change her eating habits.  For some reason it ended as quickly as it started.

I wish you all the very best.



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ginny CVSA Moderator
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