Hi, My name is Nicole and I am 44 years old and live in Green Bay, WI (Go Packers!! sorry had to say that)

I am very new to having Cluster Headaches. I have been having them for 6 weeks. It was great to finally get an answer to what this pain was today. I have been getting an avg of 8 a day for the past 6 weeks.

I have been told everything from head spasms in my head and eyes to migraines. After a visit to the ER on Monday, I was referred to specialist and she gave me the diagnosis today. As I was with the neurologist, I felt an attack coming on, she had nurse take me to the ER right across the street and have them give me Oxygen, it was amazing how well it helped. I wanted to take it home with me. LOL

I was given Indocin 50 mg 2 x day and was told if that does not help me by Monday, to call and she will start Oxygen and   lithium and see if that works.

I am already a chronic pain patient due to other issues and luckily already on disability, cause I am sure I would have been fired by now if I was able to work. 

So there is a little about me. I am so glad I found this site. I have learned so much already and I am sure there is so much more to learn and having the extra support will be great, as I live alone and my cats think I am insane when I am rolling around on the floor and hitting my head on the walls in the middle of the night.

~Nicole

Welcome to the board Nichole. Glad to hear you're working with a neuro, and doubly glad they knew about 02. Other then that, your treatment program is not reflective of a neuro knowledgeable in CH. Is this a Headache Specialist Neurologist?

I’ve had CH for 33 years, they haven’t killed me yet! You need an organized approach to managing them so they don’t manage your life. I use a 3 pronged approach, many use a similar approach:

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. You saw how well it worked at the ER. It's much better to have it in your home as time is of the essence. Even a few minute delay can double the abort times for me. My aborts typically run about 6-8 minutes. Read this link as it must be used correctly or it will not work

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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.

Go to the medications section of this board and read the post "123 pain free days and i think I know why." It’s a vitamin/mineral/fish oil supplement, all over the counter stuff, that’s providing a lot of relief for people who have tried it, it’s a long read, worth the time.

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.

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

Incidentally......I have decided not to communicate with you anymore until Monday.....on account of I'm a charger fan. Nothing personal, it's business!

Joe

Guiseppi wrote on Nov 4^th, 2011 at 7:56pm:


It's just a game, nothing serious. I can't see why it matters so much.

Obviously it's different when the ABs are playing the Wallabies, but then everyone knows who will win an epic encounter like that.

(The above will probably only make sense to any Kiwis and Aussies).

O.k. here's a newbie needing our help and all you guys can do is talk *smack*   

I'm ashamed.  Ashamed I tell ya.   

Don't mind these guys Nicole.

I am also ashamed...maybe not. Any whoo, good for you, Nicole. It does sound as if you are on the right track. Line it all up, start using the O2, and one word of caution: while this lineup has helped many of us, it is not a universal panacaea. Please keep reading, and keep taking notes, especially of those interventions others have used, just in case the verapamil doesn't quite do the trick. What dose are you on? There may be a lot of room there for you and your doctor to make adjustments before giving up on it altogether. Then again, it might work first time out. Good luck, and God bless. lance

They started me on 180MG ER of the Verapamil, but I am thinking I will need to have them raise it. Still having problems during the day hours, but last 2 nights I have not been woke up by the beast. First time in almost 2 months!!!

Nice to know that the O2 out of pocket cost is not high if insurance decides not to approve.

Well that's great news. Don't let your guard down and  keep educating yourself. here's hoping it's the start of a LONG pain free stretch.

Joe