Freud

I have insomnia so it’s rare that I have more than 1 cup in the AM. I could take ambien, Benadryl , and melatonin and still stare at the ceiling.

Thanks for the replies, when the O2 works it’s like magic. But these random CH attacks I’m getting don’t always respond and seem to last much longer than my normal CHs. I’ve been doing the coffee as well, may be it’s time to fire up the espresso machine. Thankfully I’m only getting hit 1-2 times a week. Time to bust again tomorrow.

I give them another chance. The 5 hr energy shots did nothing for me what brand do you use?

So I ran out of O2 and called Apria for a refill. They were here with in 2 hrs and the guy offered me an extra tank. Can’t say enough good things about my experience with them so far. So now I have 2 full M tanks ready to go. My experience with the O2 is mixed. Sometimes it aborts in 10-15 min and other times nothing. Same breathing technique.

HI clusterhubby, forgive me if this has been covered but are the neurologists going with clusters as the Dx. If so are you against trying seeds, it seems like the fastest and mildest way to bust? I feel for you and your wife and I hope she gets lasting relief soon. Brian

I’m not the only one that had vision problems. If I stay at 160mg per dose and spread it out by a couple of hrs before next dose and I was able to get rid of vision problems. But my BP is fine.

Unfortunately chronic, relatively new one. I started August 2017 and it never stopped with the exception of busting.

I’m a PA and I’ve worked with world class surgeons for years. I have never encountered a doc as amazing as him. He actually thanks you for letting him treat you. He can also set your son up with a 2 month free trial of the new gammacore device. He is on board with busting and really put my parents at ease. It’s tough to get in for you’re first appointment but after that they will do what ever it takes to get you in.

In general it is a safe drug. it is non addictive and the only major risk is serotonin syndrome when taken in high doses or in combination with other drugs that interfere with serotonin so if you're not taking any other drugs that interfere with serotonin production either illicit like MDMA or prescribed like an SSRI for depression there should be no negative effects. People have had bad trips but they are short lived and can be avoided by having a trip sitter. Recently it was pointed out to me that tramadol is on the list of drugs that interfere and should not be taken together. The lethal dose is " nearly 1.7 kilograms (3.7 lb) of dried mushrooms, or 17 kilograms (37 lb) of fresh mushrooms, would be required for a 60-kilogram (130 lb) person to reach the 280 mg/kg LD50 value of rats". " Registry of Toxic Effects of Chemical Substances assigns psilocybin a relatively high therapeutic index of 641 (higher values correspond to a better safety profile); for comparison, the therapeutic indices of aspirin and nicotine are 199 and 21, respectively". Here is a link to the wiki https://en.wikipedia.org/wiki/Psilocybin#Toxicity click on the toxicity tab. the info here is pretty accurate.

Not sure how far Boston is but there is a doc on here that is thought highly of in Boston called “bostonheadachedoc”. He may be able to recommend someone closer. I travel from NJ to CT to see Dr Brian Grosberg. He is amazing. He’s in West Hartford. Let me know if you want his info. Sorry its it’s late and I didn’t see the whole post. Surfing in the middle of a hit. Lol

I have only been here for a year but I’ve never heard of O2 making things worse. It’s probably coincidence. Or related to the taper if I had to guess. Stay strong. Busting saved me.

Some have reported good results aborting an attack but I haven’t seen an abort of a cycle. I’m keep my fingers crossed. Low dose does have benefits. So it’s still a win win

I’m sorry you have to deal with this but your wife is lucky to have you! As far as treatment options go. Verapamil which is a blood pressure med is first line therapy with oxygen. As tony stated for some it’s a matter of high flow and the right technique. The verapamil is started at a low dose 80mg 2 times a day and is increased every 7-10 days w BP and ekg checks inbetween up to a dose of 1000mg daily divided into 3 or more doses. I’m on 640mg a day and I have to divide it into 4 doses. I get blurry vision if I take more than 160mg at once. I am chronic as well and have had great results busting and preventing with mushrooms. I haven’t tried RC seeds yet. But in the uk you could get a ready to go mushroom grow kit from the NL. I know they ship to the uk. There is a way to beat this for most and you can stay relatively pain free. Stay strong be reselliant. Brian

Thank you for clarifying. I wasn’t aware of the interactions until now. I have been on and off opiates since I was burned when I was 14. I’m 40 now and have put myself in withdrawal several times. It sucks for 3-5 days but then it gets better. It’s worth detoxing to give the mm a chance. Suffering with the CH and being addicted sucks. I take invega which is also a relative contraindication. I take it for bipolar disorder and can’t detox. So what happens is I don’t have a trip, but my eyes dialate and I get a body high. I have taken doses up to 10grams dry. That’s the only time my core temp went up. But nothing too high 100.1 I have managed to keep my chronic CCH at bay if I dose once a month and usually take 5 grams. If you took a low dose on the tramadol I doubt you’d have much of a risk of seratonin syndrome. And you could still benifit from the mm. I still would detox, a it’s safer and b you kick the habbbit that isn’t really helping you any more.

I’m no expert in D3, but a member named Batch is the go to guy here. I’m sure he’ll respond. I’m not sure if you tried MM before but at the recommend dose you shouldn’t get blown away and the addiction potential is next to non existent for MM or RC seeds. Seeds could be an option being that people mainly report an upset stomach. Don’t want to be pushy but I’ve been on and off opiates since I was burned at the age of 14. Since I’ve had over 20 surgeries and prefer to stay away from the opiates b/c I like them too much. But if the D3 made a difference than there is hope that’s all you’ll need. Have you tried verapamil?

Happy turkey day all and pain free wishes. God knows we all deserve it. I went to see my headache doc last week and he showed me the new gammacore device and signed me up for s 2 month free trial while they work with my insurance company. I’m not sure if any doc can sign someone up or only the docs that did the study. I’ll check into it.

Have you tried busting with seeds or mm? If I were you I’d try the RC seeds. Sorry if it’s been suggested. I’m not sure if you’re the one that said it wasn’t an option.

As far as splitting the injectors go, you will probably find that it hurts less than the auto injector. That has been the consensus when I was researching it.

Say your brother/ friend is coming to town to do some work at your house and he sent you to get the oxygen. You can play stupid with out tipping them off. Ask about sizes and price. Weither you have to buy or lease... tell them the project is some old car you’ve been nagging them to get rid of or work on...

You should have a baseline but a starting dose of verapamil at 80mg twice a day is very safe. I didn’t get anything more than a BP check at my first headache doc until I was on 160mg twice a day. I now take 160mg 4 times a day and am increasing it every 7-10 days w EKG check at a cardiologist.

I know you said it’s going to be a while before you can see neuro. But I would find the closest headache center Call and make an appointment now it usually takes 4-6months to get in as a new patient. Where are you located we may be able to find a verified good doc for ya. I travel 4 hrs to see my doc...

In general from what I’ve seen posted. There may be an initial benifit to using mm but it doesn’t last. Any hospital will have both oxygen and indomethacin. Indo is an old NSAID and can be harsh on the stomach but does wonders for HC and nothing for CH. may the force be with you brian

Wait for others to respond that no HC better than me but I’m not so sure you’re having clusters but this other similar headache syndrome.

Just to clarify something, do you have a headache all day or do you get multiple attacks that last for hours?

First I would try and find a neuro that specializes in headaches. Any doc that won’t write for O2 is useless. iMHO. I would give the verapamil a fair shot. It needs to be titrated to a fairly high dose to get relief. You will need to go for EKGs and blood pressure checks while ramping up the dose. It has helped as many as it didn’t from ancendotal reports and is the first line therapy along with oxygen and injectable sumatriptan. A fairly high taper dose of steroids is often tried in the beginning and can help many. There is the D3 vitamin regime along with energy drinks gives great relief to some. I will let batch or someone tell you about it. As far as busting goes RC or HBWR seeds are going to be your fastest way to give it a try and is legal to purchase. Growing MM takes time a little trial and error and a little luck. If you decide to go that route we can steer you in the right direction. Stay strong it will get better. You can always get a welding oxygen set up as many have done for various reasons. Did the oxygen help you in the ER? Brian