FAO: ALL Chronic CH Sufferers... (Please share ANYTHING that HELPS)

[jamiemaddocks]

What can be done????? I have suffered for 20 years and i am not content on having it much longer to be quite frank! So.... it is now WHATEVER it takes...

Microdosing magic mushrooms is next on the agenda...

Iv had many meds... deseril, verapamil, sumatriptan, loads more...

gp is a constant battle to get meds in time, every week i am chasing my tail. Makes the condition worse

im 41 and its affected my past 20 years, everything, you name it... its messed it up

im relying on these current meds now... with no cure in sight.

SO... I WILL FIND MY OWN

ill let you know how i get on

)

[Blearyeyed]

Although some small studies have noted some improvement with psilocybin mushroom treatment , even the study researchers warn that there is still a long way to go to using this as a treatment .

They also warn that migraine sufferers should not try to self administer this as a treatment on their own at home using untested products or advice from the internet.

Using psilocybin mushroom treatments inappropriately and taking the wrong amount , without having full medical tests to make sure that you have no other reason not to take them , can cause serious , sometimes irreversible side effects .

These bad reactions can be physical , neurological or psychological .

No drug should be taken without guidance from a doctor and monitoring . You could end up making your condition far worse than it is now.

I'm sorry that you are in so much pain and empathise with how frustrating and depressing it can be when you can't find some relief.

I hope , however , that you don't take any desperate steps for a solution.

It might be worthwhile going back to your Neurologist or GP and telling them exactly how in despair you are and ask for more help from them to improve things.

Look through posts on here or go to the National Migraine Centre web pages for suggestions that you may not have tried yet that you can do at home , or ask the GP for help with getting access to.

Or seeking local support from a Migraine support group and working with them to find local therapies can make a difference too.

Please , take care , Bee

[bamboo89 in reply to Blearyeyed]

I don't think this person is intending to use actual mushrooms to try to kill their pain - Mycrodose (you can just about see the letters in that word at the top of the post) appears to be an American commercial enterprise marketing a commercial 'herbal' remedy, so the chances of overdose are likely small.

[Blearyeyed in reply to bamboo89]

It is still early in production and needs more tests done on its efficacy and side effects.I believe the advice from the researchers is based on psilocybin products like Mycrodose or similar , not actual mushrooms , so I think it still stands .

It's not tested enough yet and trying to use it at home without proper guidance and medical checks could make migraines worse , even at smaller doses.

I know how it feels to be desperate for a cure , but we do need to be careful , especially with very new treatments.

[bamboo89 in reply to Blearyeyed]

If its not been tested properly yet, I'd be surprised if its available to buy as its based on psilocybin, but it is true that most 'herbal' supplements are not officially tested anyway, they are not subject to the usual rules and regs covering medication, although as its an American product, not sure - seems they've been granted a licence of some sort to produce it, well at least that's what the company info says.. Certainly the blurb from the company suggests the product is in development - they are seeking investors. I can't find anywhere actually selling it...

[Blearyeyed in reply to bamboo89]

Yes , that's what I found.The evidence I had about the warnings from researchers was actually two other pieces of medical research which has been done not related to this Company and their product.

I couldn't find any independent peer review on the effects of this company's remedy either.

I don't ever think it's wise to take anything that you can't easily access independent research studies , or medical studies on it.

You do need to be very careful with any supplement or remedy you see written about on the internet and double check if it is safe to use with all your different health conditions or medications.

Even the ones that are more commonly sold and used .

[Onthemove1971]

What has worked best for me is high dose of magnesium glycerinate. I also introduced the use of injectable Imitrix and this stopped me front going to the ER.

The goal is to stop any pain as soon as you get it.

I carry roll on peppermint oil and take deep breaths smelling it.

I now use ice when the pain starts. Never skip a meal and always have protein with each meal. Increase water consumption.

Hope these tips help. I agree with the above post only take things that are controlled and well researched.

Good luck

[Blearyeyed in reply to Onthemove1971]

Great tips , on the move , I may look into trying the suggestions that I haven't used as yet . I've not heard of Imitrix so I'm going to research it.

I do take extra magnesium , Vit D , Vit C and pure Omega 3 alongside my daily vitamin and mineral supplement and they do reduce the Pain and aching of my various illnesses , as well as the Migraines. Internal Pain management by our bodies really uses up a lot more of these nutrients on a daily basis and when they are low it makes many symptoms worse.

I drink lots of water or green tea as it stops dehydration that happens as the body uses more water in coping with pain and healing and that helps reduce lots of different symptoms too.

Your diet tips are very useful too.

It's good to keep away from processed sugar , additives , artificial sweeteners and coffee as they are common triggers. Swings in blood sugar do trigger more Fatigue and Migraines.

I sometimes use the distraction techniques of touching or holding the acupressure points to reduce the extreme pain until medication begins to work.

Those menthol ice stick roll ons help to sooth things , again until the medication has chance to work.

Thanks , Bee

[Blearyeyed in reply to Onthemove1971]

Oh , Imitrex is Sumatriptan based , that's a shame , triptans do nothing for me.... But give me insomnia and a higher heart rate.

I have Dysautonomia and EDS as well as Migraines , so various drugs can do the opposite to what they are supposed to do because of my wonky nervous system.

I'm sure that might be a great tip for others though , I didn't know it could be injected it must work quicker.

My husband and daughter both take Sumatriptan so it would be worth looking into for them.

[Cara71 in reply to Onthemove1971]

Hi where do you buy your roll on peppermint oil please? I can't find it anywhere. Do you put it on your temples? Also how much magnesium Glycinate do you take? I currently take 600 mgs a day. Thanks

[Onthemove1971 in reply to Cara71]

I get the roll on peppermint at a market called Sprouts ( I am sure you can mail order from them). I normally use it on the back of my hand, when the head pain is so bad I smell it ans breath deep and can feel it impact the migraine. As far as my Magnisium Glycinate, I take it 3x daily at 600mg. You could add a day time dose of 200mg and see what it does. For me I need the 1pm dose becuase it is to far from the am ans pm dose. I usually get head pain right around lunch time and that is when I take it. This truly has been life changing. I have far less migraines and they are not as painful. I am careful with the brand I take. The only daily medication I take is Feverfew 380mg 2x daily.

Hope this helps.

[Cara71 in reply to Onthemove1971]

Thanks. I've looked up the peppermint oil and see that sprouts is a US company I'm guessing you are based in the US? Not sure they will mail to the UK but can enquire.