Sean,

How many times a day are you getting hit, and how long do they last?

It appears you have some conditions that make it hard to take certain medications for CH. Can you tell me exactly how you were using the O2, liters per minute, were you using a non-rebreather mask... all that stuff. It sounds like O2 may be your saving grace, but we need to make sure you are using it correctly.

Please see the yellow link over to the left (), it's very informative, but let us know how you were using it. O2 is a great abortive for CH, there are very few people it doesn't work for. So we always ask.

With the reactions you are having with your other meds, you will need to be extremely careful following the D3 regimen, even what would be considered a high dose can be excessive for someone like you with your issues.

Have you tried Imitrex (sumatriptan) injections? As always, get with your doctor when beginning a new med, supplements, vitamins or minerals. And always call your doc right away if you are having a bad reaction to a med. You don't want to just stop a medication, unless you're having an allergic reaction. Especially prednisone. What dose of prednisone are you on? Being on pred for over a year seems excessive, and can be bad for your body.

Let us know how you are using the O2.

Hi thanks for thanks for the response. I do use the sumaville Dos Pro injection it is a life saver. I use 2 a day which is the max. As per my doctor. I use it when I get up. I wake up with the cluster. Then right before dinner time it hits again. So I use it again. I get these headaches anywhere from 3-5 times a day if I don't use the shot. I take the preventitive medicine medicine and I get them 3-5 times a day. If I use the shot I get them 2 a day. As for the oxygen. I went to the ER the brainiac decides to put the oxygen mask that goes into your nose in. He said that was the way he does it. I am positive he set it to the 25lt per minute. I asked him why he was not using the facial mask on me and he says I don't have to because it does not work this is the only way to use the oxygen for cluster headaches and that you only use the piece that goes in the nose. So it did not work after 1 hour so I ripped it out and he got mad and I told him my headache was worse then when I came in. He did confirm it was a cluster though. I have been to 2 other hospitals and they did the same thing no oxygen mask. I called his office before I stopped taking the medicine he was not happy but at the same time I can't risk losing a kidney over it while already at that point not being able to urinate. The medicine is called prednisone it is 4 pills 2 a day for a week 3 pills for 2 a day for 3 days. Then 2 tablets 2 daily for 3 days then 1 tablet twice a day for 3 days then1 tablet daily for 3 days then stop. This is a lower dose that I am on it usually starts at 5 for a week 2 a day then 4 for a week 2 a day and so on. It is prednisone 10mg tablets. I used imitrex when it came out supposably I was doing it wrong after being discovered that you had to spray hold it then breath in. I was told to spray and breath in as soon as it squirted which was wrong. My neuroligist had told me that. I have not tried it sense then since the sumaville works for now. Thanks.

Thanks for all the information. I have reviewed it and I am going to make some phone calls Monday morning. I went to VCU, UVA and also Mayo Clinic in Jacksonville Florida. None of those doctors were successful with me. I was so angry with the Mayo Clinic but at the same time I understand. The Neuroligist told me he could do nothing for me because all of the medicines that I have been on are no longer working. He wants me to stop taking medicine and go to a psychiatrist for evaluation to reduce stress. I have been more than once to a psychiatrist last time I was their he said you are angry because of the situation you are in and he said I can do nothing for you. So now I am stuck with my neuroligist in Virginia that is an idiot that just want to do nothing. He suggested gama knife surgery but won't help me find anyone to help do this. So thanks I will call these doctors to help me. Thanks.

Yeah I told him that but he wanted to use the nose canulas. He was an ER doctor and was acting cocky when I got in their. He decided to turn all the lights on while my head was pounding and I was crying. He said the lights need to be on they will not affect a cluster headache. I told him to turn them off that I was the patient and that the insurance was paying for the visit to the ER so it is my room and I had them turned off. He finally gave me dilaudid through the iv to knock me out after an hour of stupid oxygen. He came in and said my patients always respond well to oxygen through the nose. I said I don't really care I am not leaving it in. So my neuroligist I had was great she got sick and had to leave so I got her other neuroligist who is clueless when it comes to this. He does not understand clusters but he is trained in it and is the best in the practice. So I am finding my own that was provided by a bunch of you. Thanks.

Yeah I saw that the other day and I am really thinking of buying one. I am going to see if my doctor can write one for me so my insurance will pay for it. If not I will just buy it because really it is not that much.

You have got to be kidding me I called last week and told her I was having cluster headaches and I needed in as soon as possible. She told me that he had nothing until next year. I told her I had cluster headaches daily 3 times and needed in as quick as she could. I will call tomorrow and try to get in again. Thanks.

Yeah that is usually me when it comes to this. I get frustrated quick. So I will try and be as nice as I can tomorrow and hope for the best. I really need a good headache doctor to help me. I don't have a work schedule so it is a bonus for me I can come I when I want. I wish I could work but with all these medical problems it keeps me out. I have cluster headaches I just got a bladder pacemaker to help me pee and I have POTS which is Postural Orthostatic Tachycardia Syndrome. Plus a autoimmune disease. All this happened to me at age 15 I am now 21. Which is crazy and I have chronic back and abdomen pain daily. So if I can just get the cluster headaches under control I would be happy.

Sean,

You are on a prednisone taper, which is a standard use of steroid to get CH under control fast, but you need to get on another med, a preventative, so by the time your taper is done, the prevent will start kicking in.

If you go the the ER again, and they give you O2, INSIST on a NON-REBREATHER MASK, and if they give you any crap about it, tell them you are paying for it, and it's sure not going to hurt anything to use one. Most O2 lines in a hospital only go up to 15 liters per minute, but if they go higher, then ask them. ER docs are way behind on CH studies, unless it's a hobby. You'll probably need to educate them.

When you get in to see a neurologist, ask for a prescription for O2. Then you can get some tanks delivered to your house, and non-rebreather masks. They will probably supply you with a regulator that goes up to 15 lpm, you can buy regulators online that go up to 25 lpm. Get one. Here on CH.com, you can purchase some O2 accessories to use with a tank that will help you get the O2 into your system faster.

Again, go to the oxygen link to the left, it has much info on how to use O2, the types of masks, and several pics and tips.

You mentioned sumaville injections. I'm guessing this is sumatriptan injections (imitrex)? If that is the case, then technically, you are limited to 2 injections a day, but also, over to the left, just 2 spaces above the oxygen link is the "imitrex tip". A lot of people don't need the full 6 mg shot that comes in an auto-injector. Read this tip, it explains how to use less, and get more than one shot out of a single dose.

However, another thing is to ask the neurologist for is a prescription for vials of imitrex, and syringes. I went to see my neuro, and told him that if I could get the imitrex vials (6 mg, same does as an auto-injector) and syringes, I could break the vials down into 2 or 3 shots per vial. I could kill a headache with 2mg or 3 mg in a shot. He agreed, and wrote me the scripts. This way, I could use up to 12 mg in one day (equal to 2 full shots). However, be careful, as imitrex can cause rebound headaches.

When I went to my neuro, he was up on CH, however, I educated him on a few things, and he wrote the scripts. I sent him here to read.

Good luck getting into your neuro. Most will accommodate a patient who is in a CH cycle. Please get on the cancellation list. Also, with your health circumstances, this may limit the meds you can use, so work with your doc. But definitely try the O2, it's the safest thing you can use.

Hi,
I have sumatriptan injections and can recommend them. The dose is the same as you already have - 6mg x 2 per day, but they are very easy and very effective.