Cyclic Vomiting Syndrome Message Board
Register Calendar Latest Topics
 
 
 


Reply
  Author   Comment  
demoncleaner

Registered:
Posts: 276
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!
0
ginny

Moderator
Registered:
Posts: 4,314
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.

__________________
ginny CVSA Moderator
0
wynnak

Avatar / Picture

Registered:
Posts: 439
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.

__________________
Blynda
Message Board Moderator
Monthly Support Call Moderator
0
ginny

Moderator
Registered:
Posts: 4,314
Reply with quote  #4 
Demoncleaner, can you let us know which products you are using?  Oil? Smoking?  medicinal?  This should help others.  
__________________
ginny CVSA Moderator
0
demoncleaner

Registered:
Posts: 276
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


0
demoncleaner

Registered:
Posts: 276
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
0
ginny

Moderator
Registered:
Posts: 4,314
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.


__________________
ginny CVSA Moderator
0
demoncleaner

Registered:
Posts: 276
Reply with quote  #8 
Yes, I write longer stuff in Word as well [wink]
0
Previous Topic | Next Topic
Print
Reply

Quick Navigation: