Intros Quick intro/background stuff

[Badgergirl836]

Hi everyone. Hope you're all ok. I'm Badgergirl, 43 years old and based in the Northwest. I have been using Curaleaf on and off, although I wasn't struck on the oil I got so I switched to flower a few months ago. I was prescribed High Silver and Lavender Cake.

I've been collecting new symptoms over the past few years and I have finally been listened to by GPs this summer after I felt it necessary to change to another practice. In the last couple of months, I was diagnosed with h-EDS, and I've been referred to neurology and gastro. I'm also due some blood tests next week, mainly to rule out allergies prior to testing for MCAS. The battles with medical professionals have been ridiculous, and I'm a registered healthcare professional myself. I have so much empathy for those who don't feel able to advocate for themselves.

Anyway, the neuro thing is because of suspected FND, along with frequent dreadful occipital headaches, which I believe to be occipital neuralgia. I do find that my myoclonic jerking increases soon after having my MC, but it settles right down after about 30 mins or so, then they're barely noticeable for a few hours.

Does anyone have something similar going on? Any stories on what helps you would be amazing. Thanks for reading

 

[MB92]

Hi @Badgergirl836 and welcome!

Though my diagnosis isn't strictly FND it's very closely related, I have Complex Regional Pain Syndrome (CRPS) or formally known as RSD.

I had been on tonnes of pharmaceutical drugs including morphine for well over 5 years, MC has completely changed that.

I started my MC journey in November 2025 and I have found so much relief since, I really hope you manage to find the same!

"The battle with medical professionals has been ridiculous" - could be a chorus unfortunately,

 

[S.O.H™]

Hi @Badgergirl836 and welcome!

 

[OldBloke]

Hi everyone. Hope you're all ok. I'm Badgergirl, 43 years old and based in the Northwest. I have been using Curaleaf on and off, although I wasn't struck on the oil I got so I switched to flower a few months ago. I was prescribed High Silver and Lavender Cake.

I've been collecting new symptoms over the past few years and I have finally been listened to by GPs this summer after I felt it necessary to change to another practice. In the last couple of months, I was diagnosed with h-EDS, and I've been referred to neurology and gastro. I'm also due some blood tests next week, mainly to rule out allergies prior to testing for MCAS. The battles with medical professionals have been ridiculous, and I'm a registered healthcare professional myself. I have so much empathy for those who don't feel able to advocate for themselves.

Anyway, the neuro thing is because of suspected FND, along with frequent dreadful occipital headaches, which I believe to be occipital neuralgia. I do find that my myoclonic jerking increases soon after having my MC, but it settles right down after about 30 mins or so, then they're barely noticeable for a few hours.

Does anyone have something similar going on? Any stories on what helps you would be amazing. Thanks for reading

WElcome @Badgergirl836 ! I have MCAS,moderate-severe long Covid after 2 x infections from 2019 and 2 x vax damage ( needed it to fly, never did). After years of being gaslit by NHS I now have a young bright GP who is prepared to work with me. Anti-histamines H1 & H2 blockers reduces my MCAS issues, dampens down the Mast Cell granulation and histamine dumps in GIT. Cannabis is an effective Mast Cell dampener too!

Research shows that blood tests rarely show anything that could indicate MCAS, some Drs use the antihistamines to "diagnose" as there is no blood marker, yet. So we did, it helps. Diet- histamine triggering foods are common, many websites to help with that.

I have random sudden swelling in neck lymph nodes inc occipital, crunchy crackly neck too.

I have many research papers, collected over the years, I'll try to find those looking at cannabis and MCAS.

Do fire questions if you need info, there's a lot of data here and people who have much experience of nearly everything!

Best wishes, OB

 

[Joint Account]

Hi everyone. Hope you're all ok. I'm Badgergirl, 43 years old and based in the Northwest. I have been using Curaleaf on and off, although I wasn't struck on the oil I got so I switched to flower a few months ago. I was prescribed High Silver and Lavender Cake.

I've been collecting new symptoms over the past few years and I have finally been listened to by GPs this summer after I felt it necessary to change to another practice. In the last couple of months, I was diagnosed with h-EDS, and I've been referred to neurology and gastro. I'm also due some blood tests next week, mainly to rule out allergies prior to testing for MCAS. The battles with medical professionals have been ridiculous, and I'm a registered healthcare professional myself. I have so much empathy for those who don't feel able to advocate for themselves.

Anyway, the neuro thing is because of suspected FND, along with frequent dreadful occipital headaches, which I believe to be occipital neuralgia. I do find that my myoclonic jerking increases soon after having my MC, but it settles right down after about 30 mins or so, then they're barely noticeable for a few hours.

Does anyone have something similar going on? Any stories on what helps you would be amazing. Thanks for reading

Hi @Badgergirl836

I can't relate to much to the conditions you're using MC for but I wanted to stop by and welcome you to MedBud nonetheless!

I know we have some regular members with similar conditions and I can see a couple have chipped in already so I do hope there's something useful for you there!

 

[Turboshrimp]

hellooo
i can relate to those symptoms though my diagnosis is only for C.I.S. at the moment
i find cannabis can help immensely though i'm not often 'thriving' with what is available at any given time so would like to see a lot of changez to enable better access to the forms of cannabis that work best for me

 

[Delta 9]

Having epilepsy i do get jerks and electric shock type but not as much , Did you try CBD oil or any other strains, lavander i didnt rate and high silver with terpinolene might not be the best.
Myrcene,Caryophyllene, Humulene is what i would go for, CBD would have to be the main or balanced cannabinoid as that will help with myclonic jerks and tame THC that can cause myclonus by overstimulating nervous system creating weed shakes or in your case myclonus.

CBD , THC, Myrcene, Caryophyllene great combo. Try a balanced strain or if trying oil again try Clearleaf® french macaron 20mg THC 20mg CBD as jam packed full of Caryophyllene which is amazing for body activating cb2 receptors.

 

[rosco]

Hey,
Fibromyalgia & fnd diagnosis here, waiting on Curaleaf to re-enable my account now I have the paperwork took long enough to have it officially in writing.

IV been smoking canna since I was 14 to help with my anxiety and hit it harder after a car accident at 20 left me with perm lower back nerve damage. Since fibro hit me hard really struggling and finally started really pushing to get it on paper.

As of late tremors are starting hoping for some good canna to help out.

 

[LearningAndGrowing]

Hi @Badgergirl836 and welcome!

Though my diagnosis isn't strictly FND it's very closely related, I have Complex Regional Pain Syndrome (CRPS) or formally known as RSD.

I had been on tonnes of pharmaceutical drugs including morphine for well over 5 years, MC has completely changed that.

I started my MC journey in November 2025 and I have found so much relief since, I really hope you manage to find the same!

"The battle with medical professionals has been ridiculous" - could be a chorus unfortunately,

I have CRPS too, and started MC a couple of months before you.

What do you use, if you don't mind me asking? I generally stick to rosin/resin vapes and then pastilles for the anti-inflammatory benefit when I sleep (I'm allergic to traditional anti-inflammatories).

I've also just purchased a Dynavap to try the 30:30 bubble hash (missed out on the T40) and perhaps revisit using actual flower.

 

[S.O.H™]

R u all setts?