BoscoPiko

Thanks Jeebs, I'll check it out

I am writing this because I have found that ever since becoming a cluster head it nearly feels like all I think about (even if I know I'm not due yet). I wonder how many times a day the average cluster head thinks about their head? For me it seems to be a nuisance as I'm sure I think about it most every day multiple times (so many times that it's nearly embarrassing). Is there a trick or method that anyone uses to keep the mind off of this? The only times that I haven't thought about it until I'm blue in the face is if I am distracted with a serious deadline at work or something of a tragic and or heightened level of seriousness is going on. It's just cumbersome to have so much thought based on the same thing day in and day out. Maybe I should try meditation idk? If anyone has a method of keeping the dreary thoughts at bay, I sure would like to hear it. Cheers and thanks for any feedback!

Hi Juss, That's just the only image I could get to load LOL. I do my best to not feed the Amazon beast as well. I actually got a bunch of those little bags from my mother in law who makes jewelry but it's good to know about Vitacost!

I am in CA and had to jump through hoops to even see more than a general provider. When I finally was able to see a neurologist it was one of the first things that he suggested to abort and the verapamil as a prevent. I think like Shaun suggested you may want to find a headache specialist as they may be more willing to give you the O2.

No personal experience to share but first off I am happy you are CH free. I did read a bit about the medication you mentioned and the main side effects are pretty inline with what you have been experiencing (dry mouth & feeling sleepy and a few others). I didn't see any mention of the memory loss but medications can have different effects on everyone. Sounds like by you lowering the dose you have cured the sleepy issue so I say woohoo to you! I hope it continues to work for you for a long time!

I just thought I would share this as it has made my life easier. Like many on here I am on the D3 regimen which is about 6 bottles to pull out every evening. Additionally I am on verapamil, COQ10 and ginger capsules. I have found that you can purchase little plastic bags and package up your supplements and medication so it's just one grab from the medicine cabinet

I have to second this comment as I have only ever had 2 days clear max when in cycle so maybe we do have a indicator here

This is true and I had to have one with each increase. Some doctors wont require it so you may have to ask for one.

Hi Shaun, He is back to life thank goodness!

I understand. Im about 5"6 and a buck 30thy you will be ok..

Hi there EmpiresBurn, I am also on the ER and 240 a day is what my neuro started me on (one in the am and one in the pm) 120 seems very low. The verapamil never seemed like it was helping until I was around 480 a day. At one point I was up to 600 a day but was having heart palpitations at that dose. I would talk to your PCP and see what they think about a little increase also seems like since you are a nigh hitter you may want to take in the later afternoon. Hope your headbangers end soon!

I am assuming you are referring to vaping? I am an x-smoker and became as such by weening off the cigs by using the Juul. They come in as little as 23mg of nicotine. I suppose if you smoked more than a pack a day you would most likely be at around 59mg of nicotine. So somewhere around a half a pack would be 29mg. What I experienced with vaping is that it's far to convenient (no smell, clothes don't stink, can get away with it indoors etc.) so even if you lower the nicotine % in whatever fluid or pod you are using you tend to just use it more to compensate for the lack of nicotine. The subject of smoking and CH has come up quite a few times on here and the studies that have been presented don't seem to hold much weight. Additionally nicotine could be a trigger for you so if you are in cycle and smoke it may seem to bring the CH on? I know smoking is a hard habit to kick but I also was told by my neuro that most likely quitting wouldn't help. It's sorta like once you got it you got it? Oxygen helps many on here so I'm glad you have that abortive however I've only aborted with it once but continue to try different breathing strategies. I don't know if you are on the D3 reg but i recommend it for the simple fact that it has been the only thing that has seemed to help me. Wishing you pain free days!

Well Sue all I know is that it worked for my husband and many others and that's all I care about. I use diatomaceous earth for my mare and she has been worm free for years. My husband hasent started growing a tail as of yet I posted 2 links and yes one was a study about the profilact effect the other was about cures for topically related parasites in humans.

I am sorry you are one of us. Learning all that you can about the condition is really the best course of action especially with the fact cycles seem to morph over time and what works this time may not the next so if you have multiple tools in the tool box you are better off than not.

Here is one more write up not as lengthy and more geared to the use of ivermectin for COVID https://rwmalonemd.substack.com/p/more-important-ivermectin-study-results

That's a good question... I'm sure it is most likely a bit different for everyone but for me I spike in and spike out. The pain I get when I have a CH feels like a spike to my rt temple in succession for up to 3-hours and sometimes longer but when I am getting close to going into or out of cycle I will get random single spikes here and there then the spiking stops all together. I don't believe this response to be all that helpful but it's all I got on this one.

Hi Sue, Ivermectin has been around and being used both on animals and humans since the 80's. My husband was almost 100% after day 4 on Ivermectin. Here is a rather lengthy write up on it if you would like to read it. https://www.google.com/url?sa=t&source=web&rct=j&url=https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3043740/&ved=2ahUKEwjS04_o0ev1AhV7nGoFHRVyDfcQFnoECCsQAQ&usg=AOvVaw3L3UdIkBA8b7skOdccjwTu

Just curious why? I feel like it's what has really helped him.

Hi Spiny, Yes the Ivermectin is in my opinion what started to pull him out of it. Most doctors here in CA will not prescribe it. We got it from a friend that had Covid and he got it from Americas Frontline Doctors.

I'm sure he will pull through it's just that having a baby in the house for that long is not something I'm used to

I've been feeding him like tmro exists not he puts a bit down but not enough.. I may be old in praying for my husband but I am unsure what else to do?

Well hell I guess the man flu is worse... I don't really think so but my poor husband is 11 days in with minor progress we started him on the ivermectin 4 days qgo so I'm hopeful that will help. I'm not 100% yet but he is much better. He wakes up with headaches every day I sympathize as head pain I know. He hasent been able to go back to the office as of yet but is getting better this has been no fun..

Hi Mr. Jaques, A lot of people with CH get what is referred to on here as shadows (mild but bothersome pain/headache) prior to an onset and some like myself shadow on a daily basis. Also is the headache on the same side that you had your last CH? It's hard to say if your remission is ending or if you just have some odd headache. Just incase you are going back in you might want to consider loading up on the D3 and co-factors if you do not take them on a normal basis you can find the loading instructions and list of supplements by poking around this forum. When you were diagnosed, did your PCP put you on any preventative meds or have you just been lucky and had the CH take a hike for four years? I hope you just have a strange headache!

I am and have been taking all of these since my first talk with you so I should be able to kick this quick. Thank you Peter!!

LOL 100% Sue! Fixed it (not spiny)