Freud

The only thing I can add is ask for zembrace. It is half strength imitrex injections that allow you to take 4 a day instead of 2 at full strength. My insurance used to cover 16 per month. Still a drop in the bucket but every little bit helped. Now I prevent my CHs with mushrooms and have kept them at bay for 6 months now. I am chronic not episodic. If I was you I’d look into RC seeds to bust your cycle. Many people here have had good luck and there is no real wait time like with growing mushrooms.

If for some reason your insurance puts up a fight many people here have or still use welding oxygen. You have to buy the regulator on line but the insurance company isn’t the end all be all.

You would use O2 or just suffer for the detox. The hope of knowing the MM or L will kill the beast keeps me positive.

John do you still get vials? My pharmacy says they are no longer available!

There are a few options, I would think LSA seeds may be the way to go for you being that your cycle has started and growing mushrooms takes 3-4months. Some one will chime in that has more experience than me with seeds. I am chronic and constantly farm MM to keep my CH at bay.

I took High dose CBD oil for a month along with 160mg of verapamil 3 times a day and had no problems. I think it helped but it didn’t abort my CH as some one here has reported. If you’re going to do cbd check out https://www.lazarusnaturals.com/shop/ after spending hours researching I found this company makes the highest quality cbd for the money. The flavorless just tastes like coconut oil.

Supplemental O2 for CH must include diagnosis code 15-20LPM (liters/min) via non rebreather mask. I think that that covers it wait for one of the senior folks to respond. Just didn’t want to leave you hanging.

Thank you for correcting me I’ve never seen it in my searches.

There should be no interaction with mm and the lithium from a medical/ scientific perspective. It’s only SSRIs you have to worry about.

It’s definately not a trigger for me. I like it for the period after the attack breaks. I’ve been experimenting with edibles using the magic butter machine. A good strong cookie dulls the pain. But you have to time it perfectly. Cookie kicks in in 45 min-1 1/2hr. So if you get hit the same time every day you can time it. When I got attacks pre busting I would get hit every night between 7-8pm and the cookies helped. It was Girl Scout cookies.

Tired is understandable but don’t give up. Try the D3 regime that Batch posts about. Any questions and he’s happy to answer. Also you can go the welding O2 option. My insurance just changed and they want $1600 a month for my trex injections so I’m left with what I stockpiled over a 2 month remission (I’m chronic CH). Have you considered growing your own mushrooms. The LSA seed option doesn’t have the grow time and could work also. You have options stay positive.

Thanks for never getting tired of putting the info out there Batch! This post convinced me to give it a try and recommend it to my sister with RA. I’ve been taking 10k units of D3 but have to add the cofactors. I’ve been getting success with MM but it would be nice to have a good back up. Do you use MM too? thanks Brian

It may be easier if you could have some one from back home buy them and ship them. D3 is pretty common in the states, may be France (I think that’s where you said you were from). Most importantly you can’t give up. I know this shit sucks, but you will get through it. Have you ever tried a big tapered dose of steroids? It works for some people. There is also an occipital nerve block that helped me a lot could be easy to find some one that could do it. An SPG nerve block also helps and requires no needles. They stick long qtips in you’re nose and drip lidocaine jelly down them. There is always something to try but I draw the line at putting things in my brain. There is always MM, LSA, LSD...

The only negative is that your dose has to be strong enough to feel some of the mm but not necessarily trip. A bad trip is the biggest risk second to serotonin syndrome. Which is rare and usually do to taking other drugs that I mentioned with the MM. I don’t mind tripping so i dose higher than some. Some of us also require higher doses. And tragically sometimes the mushrooms just stop working. CHs are always changing from what I’ve read here from long time sufferers. I wish the 3 of you luck!

I honestly didn’t think I’d take another psychedelic until I found this place. I’m just 2 grows in but the mm gave me a 2 month break and it was a godsend. I plan on dosing 1-2 times a month to keep them away as I have chronic CH.

They will have no known interaction. You have to refrain from the triptans while using mm. Also antidepressants in the SSRI family. Otherwise you are safe. Some one chime in if I’m missing something please.

Hey LFR welcome to the fam, sorry you have to be here. We all understand how overwhelming CH can be, especially going undiagnosed and suffering for that long. It sounds like it’s time to find a new neuro/ headache Specialisl. I would highly recommend oxygen. There is a lot here just dedicated to that topic alone. D3 has worked for many here as well as energy shots. For me the single most helpful thing has been magic or medicinal mushrooms. It gave me my first break from CCH in over a year. My Dr is very supportive and referred me to this community. The people here are great, I can’t say enough good things.

What did you mean by “...it did not play well with Zomig”? 5 weeks is a relatively short period of time to try verapamil. It needs to be titrated up at a moderate to slow pace 80mg every 7-10days if no relief. That’s with EKGs and BP check a few days after starting new dose. Some people require really high doses to quell the cluster beast. As high as 1000mg! I’m currently at 640mg/day.

I have often felt like your last statement. Sometimes I find it comforting and other times i find it tragic.

Zembrace and cold environments help me. But right now I’m suffering through the pain as I am going to dose soon and can’t take the zembrace for 5 days w MM.

Thanks for sharing Lisa. It’s good to see someone it helps. Make me feel better about taking it.

My neuro told me the same thing before they scanned me. I have heard of people that surgery has helpped.

I’m so sorry, you’ll be in my thoughts and prayers. With out getting too personal where do you live, how did you find the surgeons.

Any decent headache specialist usually orders a head CT or MRI to rule out pituitary tumors and aneurysms. There is a really low incidence of them occurring with CH. now that hat you have this extra info what are your options if you don’t mind me asking. Brian

I’m sure at some point I’m going to reach a threshold dose. Either I will have to come off from side effects (low BP or slow heart rate) or my headaches won’t come back. However, now that I’ve gotten a grow under my belt and have optimized things I should have enough to dose once or twice a month and keep them at bay. In that case I think I want to come off the verapamil I’m now up to 640mg a day. Brian