Dandownunder

Benadryl does nothing or very little for me also. I never get drowsy from It even if taking 100mg for over a week. At least It doesn't make my attacks worse though.

HI plhbn and welcome you have come to the right place. Ive had a decent amount of experience with oral forms of sumatriptan all forms actually apart from the injections as they are $160 i my country. Before I was first diagnosed with Clusters, I and the doctors thought I was having migraines and I was prescribed Sumatriptan tablets. In the early days of my headaches they were much less frequent. The tablets definitely worked better than otc and opioid painkillers I had tried and actually would kill the headache. The problem being they did take a long time to kick in, minimum 30 mins to an hour. That feels like a long when you are in agony. After being diagnosed with clusters I was prescribed the nasal spray version. I found that to be very hit and miss. My nose gets totally blocked sometimes so I felt it didnt even get into my system. At times it worked and It would start to kill the headache in about 20 to 40 minutes. I then tryed the wafer version, you put that in you mouth and it dissolves, I found that to work pretty well usually working in 20 to 40 minutes. The key I found with all oral Triptans is that If you take them as soon as you feel you might have a headache coming on the more success you have at aborting the Headache quickly. Also Drinking strong coffee or a energy drink seems to make it more effective also. This method was effective for me for a fair while. The problem I found was The worse my condition got the more I needed to take them. Not only did they start losing effectiveness but I started to feel very average, tight felling in the chest, high blood pressure, even more tired than usual, a walking zombie pretty much. At times a Headache would hit so fast and was so strong that I would take one and it wouldn't work so after an hour of agony I would take another one out of desperation then that still didnt work for another 40 minutes. Then I felt so crap for the rest of the day dizzy tired, and a few hours later it would happen again. Maybe because of a rebound effect or maybe not im not sure. Once I moved to Oxygen I felt much better. In closing oral Triptans were a saviour for me for a fair while when used at first signs of headache with caffeine and taken sparingly but were not the long term solution. Tread carefully and goodluck, There is a lot of information on this forum to help you improve you pain. Plenty of people to provide answers to your questions. Dan

My apologies if this study has already been posted. I didn't find much on the forum about this via the search bar. I know that Batch has brought up this kind of diet in conjunction with the D3 particually if the D3 isnt getting desired results. Seems according to the study there is something in this diet. Here is the link to study its easy to read and understand. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5816269/ Dan

Hi Juan Pablo Prieto is this the study you are referring to? https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5816269/

Ive tryed it as a preventative and a abortive to no positive effect unfortunately. I used full spectrum CBD oil with doses around 25mg, it slightly relaxes me after a attack but not enough to warrant the expense of it in my opinion. Every one is different tho Oxygen is king my friend.

Hope it all improves for you Fun times, I been having some "funtimes" of my own aswell particularly on monday. I ran out of oxygen Monday morning and I got a attack at 9am I through everything I had at it, OTC stuff I have at home a energy drink followed by coffee, Ice on the head, hot and cold shower it all did nothing, after a hour and a half of level 7 pain it ramped up to a level 9 and I caved in to using a rizatriptan, haven't used them since i started using seeds over a month ago then half a hour later took another one because the first did nothing, this one either took an hour to do something or finally it all ended on its own. Two and a half hours of pure hell. My poor two year old son had to see me pacing around the house trying to keep it together for him as I was looking after him, sometimes I really feel like my family deserves better and my work for that matter. After its all over i often take a deep breath and think will this hell ever stop.

Wow that would be a massive decision to go down that path, I imagine there is very few surgeons around the world that would offer this procedure. It would be good to here from someone first hand that has had this procedure.

thanks Rod good to know im not the only one Ive messed with the dose a bit taking 2.5 and 5mg but I didnt notice any positive effects on sleep or CH then either, I started taking 10mg because thats what i was reading was a good dose for CH, but im thinking obviously it is no good for me. Dont think ill ever take it again.

Hi everyone, A while back I bought a bottle of 10mg melatonin pills. I herd that people used them for CH and for sleep. I mainly bought them for CH but I have also never been able to get a good nights sleep so I thought if they didnt help the CH much then better sleep could be a good side effect. I Was in a particular bad period of CH at the time i started taking them and they seemed to do nothing at all in regards to my CH or sleep for that matter. after a week or two I stopped taking them. My partner took them one night and it knocked her out and she had a bunch of crazy dreams, but for me nothing. The pills sit in the cupboard now gathering dust. My CH have been a fair bit better lately and have had a handfull of days PF or just a CH on waking in the morning. I thought id try taking them again to see if I would atleast get some kind of better sleep since even if im not in as much pain as before I still can not sleep for more than 3 hours tops without waking up. I took one and that night I had one of the worst nights in ages, not only waking up regularly but having multiple CHs. Now thinking back I think these pills have only made things worse when I've taken them. It could be a Coincidence but Im not sure, Ive only read of people that have found Melatonin helpful. Is there anyone out there that can shed light on this?

Thanks spiny thats awsome advice. Thanks to everyone you are all so helpful!

Cheers siegfried, My CH are usually always at night, within a hour of falling asleep and then again 3 or 4 hours later and usually in the morning as i am waking up or maybe a few hours after i have woken up. on average i have 2-3 bad ch in 24 hours sometimes only 1 which is nice and thats usually the one after falling asleep or the one in the morning, they are the most regular for me. But i do get them every day, the other night was a new experience for me every 90mins. I get Ch all year but they get worse this time of year in our spring/summer and then they drop in severity and frequency in winter/autumn(fall) with the odd bad flare up coming at anytime of the year. Yeah ill trying that oxygen breathing technique for sure. Thanks Dallas Denny, I have to keep in mind that if i was to buy a set up it will have to be shipped overseas most probably.

Thanks for your response Batch, ill look into the oxygen demand valve, is there a set up on the market for Cluster Heads? or is it something i have to try and put together? Yeah im well aware of the Vitamin D protocol have studied that Link in detail for the last year and a half, unfortunately its not helping me, ive tried all the doses and adding all the extra recommendations with no success. I still continue to persist out of fear of stopping just in case things get worse.

Thanks for the Link Jon im definitely going to buy that mask for sure. Yeah i looked into delivery they do charge, i live in sort of a semi rural area also so its a bit out of there way. I visited a friend who is into welding today and he gave me a ball park idea of what he has payed for welding oxygen and its substantially cheaper, so yeah in the long run that will be the go i think. An update also when i got my first attack last night as usual within an hour of falling asleep i sucked on the O2 for a full 10 or 12 mins after i got rid of the pain even though i was exhausted and i didnt get another attack for about 4 or 5 hours instead of every 90 minutes like the night before. So thats a better result. Unfortunately I cheated on the second attack out of exhaustion and took a triptan and didnt stay on the O2 as long. I cant afford to do that again as I plan on trying to bust in a week.

Thanks Chris that is all very valuable information and makes sense to me. I have a mask that was supplied to me it works but i think it could be better. The bag is to small so it fills up to quickly and i can empty it in one fairly deep breath, then depending on what flow rate i put it on determines how quickly the bag refills so 25lp just fills it very fast then the O2 keeps rushing out and feels like its going to waste. I think ill purchase the one from the site here unless i can find a similar one in my own country that will ship quicker. Ill get some bigger tanks from the supplier in the mean time and hope things improve when i try busting. I think if things dont improve however ill need to go down the welding O2 route to make it more financially sustainable.

yeah after looking at the chart id say i have 2 Es If i have to go back tomorrow ill organize the next sizes up i think. Not sure what that will cost though. they do deliver but i try and save money by picking them up. Its 10$ to fill per E and 20$ to hire for the month so its costing me a lot. if i continue to go through 2 Es a night me and my family will be in financial trouble