Hello,

So I am on the path to being diagnosed my DR said he believes I have them but isnt sure so now once a month I go to his office and try every medication under the sun in different doses, this time it was zomig(sorry if i spelt it wrong) and its the rapid melts...anyone have any experience on this, its not working I think it made it worse.

So here's the problem with CH.....it's a lifetime affliction, and it doesn't respond well to hit and miss treatments. This is absolutely not a knock on your doctor, but if you have CH, you need to get to a headache specialist neurologist to get the most effective, up to date treatments. You also need to rule out several other maladies that resemble CH in how they present themselves, but are potentially more serious......and worse yet won't respond to CH medications! This is how I treat my CH......many others use similar treatment plans but it will give you an idea of why it requires a disciplined approach to treating it, or risk missing out on a treatment that would have worked for you because dosing or administering procedures were incorrect:

1: A good prevent med. A med I take daily, while on cycle, to reduce the number and intensity of my attacks. I use lithium, it blocks 60-70% of my attack. Verapamil is the most common first line prevent, topomax also has a loyal following. Some have to combine lithium and verapamil together to get relief.

2: A transitional med. Most prevents will take up to 2 weeks to become effective. I go on a prednisone taper, from 80 mg to zero over a two week period to give me a break while my prevent builds up. Prednisone will provide up to 100% relief for many CH’ers but is harsh on the system and should only be used for short periods of time.

3: An abortive therapy, the attack starts, now what? Oxygen should be your first line abortive. Breathing pure 02 will abort an attack for me in less then 10 minutes, that’s completely pain free. Read this link as it must be used correctly or it will not work

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This link will show you how to get set up with welding oxygen:

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Imitrex nasal spray and injectables are very effective abortives. I use the injectables, they’re expensive, and I rarely use them, mostly just when I get caught away from the oxygen. The pill form generally works too slow to be effective for CH’ers.

That's what worked for me for well over 20 years. I am now on a D-3 vitamin regimen which has me in a 3 year remission, here's a link to it, I'd caution you against trying it before finishing your diagnostic journey and confirming that you have CH:

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For now, get some energy drinks. Rock Star, Monster, any containing the combo of caffeine and taurine, chug it down as fast as you can when you feel an attack starting. Many can abort or at least really reduce an attack using these. This will help provide relief while you figure out your diagnosis.

Finally, visit our sister board for “alternative” treatment methods outside of mainstream medicine. As you’ll see from all the success stories on this board, there is something to it.

clusterbusters.com


Read everything you can on this board, if you are a CH’er, knowledge is your best ally. We’ll help you all we can.

Joe

Hi, Welcome to the boards, but sorry you had to find us.
There are many different different headache types, which mimic cluster headaches and respond totally differently to medications. Often, as in my case, some meds were tried as a diagnostic tool - if it didn't work then I had a different kind of headache. Process of elimination really, as there is no other sure way to diagnose primary headaches. Once you try something that works then you will get your diagnosis and can try all the other meds that help the same condition.
But most importantly, have you had a scan, just to rule out anything sinister? This is vital.
If you are definately diagnosed with CH then there is plenty you can do. Keep coming to these boards and read all you can. Check out Batch's D3 anti inflammatory regime which is successful for 80% of people. Also "oxygen info" highlighted yellow tab on the left of your screen. Oxygen is most peoples #1 abort method. As for meds, I think imitrex injectables are favourite.
Where are you? Some one here will come along and tell you where to find a headache specialist in your area.
Maz.

Good point Maz, forgot to ask what part of the world you're from, someone may know a qualified neuro near ya!

Joe

nickidineley wrote on Jan 6^th, 2014 at 5:52pm:

I go to his office and try every medication under the sun in different doses, this time it was zomig(sorry if i spelt it wrong) and its the rapid melts...anyone have any experience on this, its not working I think it made it worse.

I assume you are asking if we have had experience in trying different meds. If so, the answer is, oh yeah...way too much experience in trying one Rx after another. It's part of the dance dontcha know. We try something, it works, the beast changes the tune, and it doesn't work no more. If you were asking about the melts, that's a little more complicated an answer. They don't work for most of us; they have worked for some; and sometimes they work for a little while and the dance morphs=see above. Read through Joe's list of what to look for, it's the best advice we have to give. God bless. lance

Maxalt Melts do work for me for both CH and migraine, with them being a lot more effective for migraines. For CH they seem to take about 20 minutes to work, so they are nothing like as effective as oxygen (about a 5 minute kill).

But they are an option for when oxygen isn't available either for things like flying or when it isn't practical to have to carry a cylinder around.

Hello all. Sorry for delayed response..been so busy.. My back ground info is im a 24 year old female. And I live in in Ontario. I've had a scan and my eyes checked in my area you essentially have to be dying to get a specialist. So I get to stay with my dr who says im a female and have cluster headaches. They're so rare that I likely don't have them....what else can it be. Im getting so frustrated. He looks at me insane when I described how I scream and bang my head. Sigh.  On top of that I am so confused! Is a cluster headache a migraine he said this medication is the last one he will give because if this doesn't work its nothing of the migraine sorts.....are there any tests that can show i suffer from these crazy headaches.

Urge you to take action to find a headache specialist or a neurologist WHO HAS EXPERIENCE/TRAINING in complext headache disorders. (Large % of neuros have meager training in this area.)

IF your current doc is open to receiving meical information from you we can supply MEDICAL mateial which he will recognize as alid. Ask him directly if he will accept material which we can supply to you.

He's off target on % of women with Cluster--simply not that rare.

Test him by print the PDF file below and giving to him. (And you keep a copy for your educaton.)

Zomig is not first choice for Cluster but is effective.

Give him this information. Site of one of  the best heacache docs in the Chcago area. Much professional level information both on site and in books listed.

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---

He isn't very open...but I appreciate all the answers. I always think he thinks im out for drugs. I even said. Im not i even mentioned how oxygen is best(I heard).....truly want this to be manageable. I hate sleeping because i knowin 2 hours ill be in pain screaming. :(

These are cluster headache sufferer recommended docs in the Ontario area:

Ontario


Huntsville:
Dr. R. Blaine Taylor Foell

Ottawa:
Dr. Heather Elaine Mills (PCP)
Dr. Lucian Sitwell

Toronto:
Dr. Marek Gawel

Here's a link to the file showing all the Canada docs recommended by sufferers:

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Joe

You are in good hands. Joe has given you the complete starter kit. Follow it and you are in with a fighting chance.

To underline what Joe said. Key to tackling CH is a thought-through strategy and not tactical measures. Regrettably, many of the treatment paths take time to show effect or failure and there is a fair amount of hit and miss involved, not helped by the fact that CH has a tendency to morph over time into different directions. Notwithstanding, from my and many other people's experience making ad hoc changes to your treatment regime can have very painful consequences.

Get your confirmed diagnosis from a specialist and then use this board to learn and stay up to date on things. This board has produced more relief than the world's entire neurologist community.