FunTimes

the pain will vary from one to another we all tolerate pain different so the fact that you do not think yours are as bad does not mean they are not clusters. Just hope that they never get that bad. After I started busting and got on the D3 my pain levels dropped and the length they last is shorter but they are still clusters and still fun to deal with.

Getting the head scans and tested is a good start to rule out anything else. Next doctors visit you have try to get a prescription for oxygen. You will need to use a non rebreather mask and a flow rate of up around 25lpm. You can search oxygen on this site and find a tun of information on it. I will also down a 5hr energy drink on my way to the oxygen to help abort the attack faster, some will use coffee or other energy drinks. The Vitamin D3 is another good thing that will not hurt starting today and will help with more then just cluster headaches. Read up on this site and ask a lot of questions and people on here will be more helpful then any doctors you will meet. Welcome to the site.

A few people have used this in the past. If you search CBD in the upper right corner you will find the post with all the info they had to offer, no harm in reactivating a older post with new questions.

I am chronic so I do not have normal cycles but I do have changes in my attacks. Last week I was doing great with only one cluster a day, Saturday hit and they started climbing and by Tuesday I was up to 5. The pain and length of each got worse each time. This is normal for me when the seasons start to change and yes it does suck but mine will hopefully settle down a bit. I take all of the D3 regimen and I add Benadryl 3 times a day when the seasons start to change and things ramp up for me. Not that this will help you feel any better but you are not alone. As far as your clusters changing sides, I have heard of this happen to other members on this board but it has never happened to me.

Sorry,this is no longer available. Maybe someone else will see this post and will have something they can send you. If I come across another I will let you know.

Welcome to the site! You will want to see a neurologist and or a headache specialist to have a few scans of your head done just to rule out anything major going on. Once you are declared a cluster head and given that id card you will have all the benefits of denied help from most of the doctors you will see. You are one of the lucky ones.. on a more serious note, click on the banner on the top of this page and read as much as you can on this site. Do not be afraid of asking a million questions! Oxygen is what you will want to get your hands on to abort your cluster attacks, this is the hardest thing to get doctors to prescribe to you (comment above). Read up on the vitamin D3 and Busting. Nobody has a cure for this lovely condition but we here all work together to make things as comfortable as we can. Some including myself will down a energy drink at the first twinge of a cluster coming on and this helps hold down the intensity a little so we can get to our oxygen. Keep a positive outlook and open mind and you will be just fine.. It is hard sometimes but people here are willing to listen and help get through the crappy times with you.

A few things about the boost oxygen that stick out to me are it is 95% oxygen and that is lower then the medical grade witch may not be that big of a deal and only take longer to abort the attack. The bigger issue I see is that even the largest canister they have is only 10 liters of oxygen, I use E size tanks very often and even when my hits are not that bad I average about 4 aborts per tanks. A E tanks holds about 680 liters of oxygen so I use about 170 liters per attack. I did not see the pressure the boost can is at so I have no idea if the flow rate would be fast enough to support your breathing during a attack. Dont get me wrong, if I were stuck out on the road with nothing at all I would not turn this option down but I do not think I would spend to much time or energy stocking up on them when you can set up a welding tank and get much better results with a larger tank.

This is still available. If you or anyone you know needs the smaller size cluster oxygen mask please let me know and I will send it to them. this is the mask with the yellow edges around the mask and it is brand new, never used.

That is good that you now have a company that will supply you with oxygen. Now it is time to start playing the game with them to get more then the one tank. I have found that the person who delivers the tank it more sympathetic and will most likely hand you a extra tank from time to time. Start out trying to collect e tanks, they are smaller amd nice to keep in the car with you. You will want more then one tank so they do not need to come to your house as often for delivers. With only one tank you will need to plan well so you do not run out over a weekend and be stuck with no o2. As far as billing goes my local company is a flat monthly rate for up to 3 delivers so they do not charge per tank. I call and order tanks when I have a few empties and always add a extra. Most times I will use another tank before they deliver. Bottom line is get to know your delivery person and figure out how to work the system to your advantage. You do need this and they should not make it so hard. For me paying out of pocket was much cheaper then using insurance.

I have a child size oxygen mask kit that needs a good home. If you are or know of someone who is in need of a brand new o2 mask kit for a child please let me know and I will send it to you. This is the opti mask kit that attaches to your regulator.

I would highly recommend getting oxygen to abort your attacks. No rebounds or side effects

kat Have you had your bloodwork done yet to see what your levels are? Everyone is a little different and you may need to tweak a few things to get better results. I add benadryl the rest of the D3 vitamins in the spring and fall if I think some underlying allergy is messing with my head. I have never had allergy in the past but you may have a underlying symptom that you are not aware of that has no other symptom other then making clusters worse. If your D level is still low after the loading dose you may need to load again. you can always send batch a pm with the results of your blood work and I am sure he will get back to you with some ideas, he is great with that.

I take 120 once a day and just had a hip replacement. They did not ask me to stop taking it. I took it 2 hours prior to the operation. Good luck to you. I broke my collarbone in high school and all they did for me was reset it and put me in a brace.

If melatonin is causing you other issues then yes I would stop taking it. if all you are dealing with at night without taking it is the cluster then at least you know what your dealing with. Mix in anxiety, nausea and vomiting with clusters and that sounds like a real party...

you can split your injections to extend them, you can find information here and on youtube on how to do that. You will also want to look into getting oxygen at a flow rate of 25lpm and a non rebreather mast, you can also find info on how to get that setup on this site as well. A member on this site has developed the D3 regimen that has helped countless cluster heads. Poke around this site, start bu clicking the blue link at the top of the page for new members. read as much as you can and ask questions and you will get answers. Busting is a big topic that has helped most bring clusters under control. Welcome to the site you will be happy you found it.

MASH! HAHA the 4077 got me through a lot of busting nights.. Love that show

Being negative is all part of the game, it happens to me all the time. I am chronic so I do not have cycles but deal with this every day every year. I try to take a look at myself from the outside and find it kind of funny that I was chosen to deal with this and was chosen because I can deal with this. I am a big fan of the 5hr energy drinks or anything similar off brand type drinks like this with the caffeine and taurine. Walmart and dollar general both sell drinks like this. For some push ups, jumping jacks or some other vigorous activity can also help lessen the pain at the start of the attack. Oxygen is the biggest help, the faster you can get to it and the faster you can fill your lungs the better. Do you have the cluster mask and a high flow regulator for your tanks? Cluster headaches suck but you are in the best place to fight them. read this site as much as you can and ask questions. Look into the vitamin D3 like mentioned by the pros above and read up on busting it could change your and your partners life.

I am a big fan of clinical trials, I have taken part in 2 of them for clusters since I was lucky enough to be diagnosed including the Yale psilocybiin study. I do not do it for a cure for me but to help find a way to get one step closer to cure the future. I would like to be part of finding a cure for my children if they ever have to experience this shit storm of a life we all live.

Oxygen is the best option for aborting. you will most likely need to order your own regulators for the flow rate of up to 25lpm you can get them from amazon. You will want at least a few E tanks and 1 M or M60 tank This regulator will work on E tanks https://www.amazon.com/EverOne-Oxygen-Regulator-Liters-Connection/dp/B07L9P7V55/ref=sr_1_fkmrnull_1_sspa?keywords=25plm+oxygen+regulator&qid=1554376658&s=gateway&sr=8-1-fkmrnull-spons&psc=1 This one will work on the M and M60 tanks https://www.amazon.com/Oxygen-Regulator-Standard-Body-CGA540-protector/dp/B00BXRBJG8/ref=sr_1_fkmrnull_3_sspa?keywords=540+CGA+oxygen+regulator+0-25lpm&qid=1554376819&s=gateway&sr=8-3-fkmrnull-spons&psc=1

I would not think your cycle is ending I think the Verapamil may be kicking in. It can take up to a week for you to start feeling the effects from that. Most times your doctor will give you a Prednisone taper to hold you over until the Verap starts to work. You are better off without the prednisone, that can do some harm to your joints.. MRI is good to rule out any other things that may be going on and like Freud said you will want to look into getting oxygen to abort your attacks. I also will down a 5hr energy drink at the start of a cluster to help the oxygen kick in faster for a quick abort or to help some of the stubborn ones go away. Tuns of information on this site and everyone is here to help so read as much as you can and ask questions..

I have taken Benadryl with the D3 and busted at the same time and never thought it blocked anything. I am chronic so I don't get a bunch of pain free days between bust, I did not notice any less relief with busting and taking benadryl and when I am not taking benadryl.

I take both Verapamil and the d3 regimen. Verapamil around 6am and d3 between 12 and 1pm. I took prednisone about 3 or 4 years ago and just got my brand new hip! The only thing that the doc could think to pin the hip replacement on was the prednisone. I'm 43 years old. Be careful with that stuff. Dont over do it. It will keep most of the clusters away only when your taking it. Stop taking it and the clusters return. Just my experience.

When I first started out with my clusters I thought is was a toothache. It would bother me for a month or 2 and then go away for a month or 2. This pain free gap slowly shortened until I had this shooting pain every day but not all day. I had a root canal done and that did not fix the pain so I was refereed to another dentist who told me I had cluster headaches. You have already had the MRI witch is a great start due to the head injury. I would look to see a headache specialist to figure out if it is in fact clusters you are having. I would keep a log of each headache you get, what time it starts, what part of your head, runny or clogged nose, does your eye tear, and how long it last. See if you have some sort of pattern. Like Moxie said Clusters tend to come the same time every day and a diary will help the doctors figure out what is going on. If you do end up having clusters you are in the best place to fight this and we have a tun of people here that have dealt with this for a long time and tried just about every trick in the book. Things to look into will be preventives like Verapamil, abortive like oxygen and long term treatments like Vitamin D and busting. All of witch are covered in full on this site. Poke around and ask as many questions as you can and we are happy to help. Sorry you have to be here but this is a great place to be for help.

Pebbles How far along are you in recovering from the hip? I am on day 14 and just ditched the walker and using a cane only now but it still feels weak and tired. I am doing the stretching a few times a day and walking as much as I can every hour or so. I have about 40 stairs in my house and am now doing them a few times a day. I kind of thought I would be doing better then this at this point. I still have not gotten into a car as I fell that would hurt. I hope your doing well and the clusters are letting you heal without issue..