Hello,

I'm new to cluster headaches, so let me start off by giving some history.

Two weeks ago this Wednesday, I suddently got a horrible headache at work.  I had to leave it was so painful.  Tylenol ES did nothing for me.  I went home, did my nasal rinse (I've had "sinus" issues leading up to this, hot shower, everything.  At about 4:30, I finally dozed off for a bit.  When I woke up, it was a "normal, I can deal with it" headache.  I went to urgent care just to make sure nothing was majorly wrong.  They said it was a sinus infection most likely, and gave me amoxycilan and a nasal spray.  I didn't end up getting the prescription, as I had no "infection" symptoms, like fever, etc.

Fast forward to Friday night.  At around 9:30pm, it was back.  It lasted probably 3 or 4 hours.  In the morning I picked up my nasal spray and started using that with my nasal rinse.  I went a few days and even told a coworker on Tuesday, I was back to myself.  Then Tuesday night happened.  I don't know if I was asleep yet or not, but the pain started at 12:40pm.  I was up until 4:30am.  I still went into work and worked out in the morning, but went to my ENT that day.  He did a CT scan, and said my sinuses were clear.   He referred me to a Neurologist, suggesting it was a Sinus Migraine or Neuralgia.

My Neurologist said it was likely cluster headaches, but scheduled an MRI just to be safe.  MRI is later this week.   She wanted me on Imitrex injections.  Those are expensive, and I have a fear of needles, so I did not get them yet.

This past Friday, another headache woke me up at 1:10am.  This time, I started running in place for 15 to 20 mins, drinking lots of water.  The pain was bearable by 3am.  It cut it down quite a bit.  I did try motrin at that point as well.

To summarize
Wed 11/9, headache 1 at 1:30pm
Friday 11/11, headache 2 at 9:40pm
Wedneday (Tuesday night) 11/15 headache 3 at 12:40am
Saturday (Friday night) 11/18 headache 4 at 1:10am

My "CH's" don't seem to fit a typical CH pattern.  In addition, if I get a cold, the right nostril is usually the clogged one.  If I have a sinus infection, it my right sinuses.  Is that a coincidence?

Would anyone recommend not taking prescription meds if I don't have to?  I can't say for sure, but had similar headaches many years ago, that were treated a sinus infection.  This was probably 5 or 6 years ago.  The pain did seem familiar though when it was back.

Thanks for your time,
Bill

It sounds like you may be headed for a CH diagnosis. Your neuro is on the right track with the testing you're being scheduled for as a lot of a CH diagnosis is in eliminating other issues, thus the CT Scan. Imitrex injectables are very expensive, but will stop an attack in its tracks in just a few minutes. I use a 3 pronged approach to treat my CH, 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. 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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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

We would all recommend not taiing prescription meds if you don't have to. That's a no brainer. But, the description of your headaches sure is atypical if they are clusters. I remember reading a long time ago that it is possible in the beginning for clusters to imitate sinus infection pain, and some of us have found nasal sprays can help somewhat. Still, it seems to me you would benefit from taking the Cluster Quiz and bringing the results with you to your doctor visit. Headache pain is complex, and rather than receiving a quick diagnosis I should think you would want an opinion from a headache specialist. Just a few thoughts. Blessings. lance

Thanks for the info. 

Lance, thanks for stating that I might not have CH.  I hope not, without sounding selfish.  It's my personality type, but knowing that it could be CH was scarier for me than just having a random horrible headache that was attributed to sinus pain.  I will keep you guys posted.  I try not to visit too often, because I'd rather not think about it to be quite honest with you.  I do admire everyones courage and support and hope for a cure, whether I have it or not.  It seems like a lot has been found in the last 15 years, so hopefully the progress continues.  With all of the possible treatments, besides being a pain in the butt to take meds, have O2, etc, it sounds like most people have something that somewhat works for them?  I'd like to think so.

I am sure it is somewhere in the forums, but what else, besides O2 and Red Bull is safe to use without altering my mind in some way?  Has anyone used the O2 converer machine (not a canistor).  It's a personal electronic machine that converts the air into O2, although I'm not sure of the concentrations available.

Thanks,
Bill

By the way, just to clarify.  When I said I would rather not know it was CH, assuming it was a 2-3 week a year thing "treated" with sinus meds, I meant with that, I didn't have to worry about what I was doing that triggered a CH.  I don't want to worry about having an ice cream sundae, or if I play a video game, put on too much cologne, etc.  Maybe I wouldn't so much with an abortive, but I'm new to this.

Keep logging your headache diary, very smart of you to do this and will be very helpful for your treatment.

Billy Boy wrote on Nov 22^nd, 2011 at 10:17pm:

By the way, just to clarify.  When I said I would rather not know it was CH, assuming it was a 2-3 week a year thing "treated" with sinus meds, I meant with that, I didn't have to worry about what I was doing that triggered a CH.  I don't want to worry about having an ice cream sundae, or if I play a video game, put on too much cologne, etc.  Maybe I wouldn't so much with an abortive, but I'm new to this.

For another non-med alternative, see "123 days pain free and I think I know why..."  Also you can explore the use of nighttime melatonin. As for the above, that's up to you. A trigger is not a cause, but the introduction of certain substances or processes certainly can instigate a round of attacks for many of us. If you can identifty a trigger it's smart to avoid it, unless you prefer the pain. It does seem that the quicker and more efficiently we abort the attacks, the attacks themselves begin to lessen in intnesity and duration. It's a good idea to hit CHs hard and early.

As for the concentrators, most of us have found they are either not pure enough in O2 output, or too low a flow. God bless. lance

Has anyone linked stress to CHs?  We closed on a new home a couple days after the first headache.

Thanks,
Bill

Stress can play a role also.  Start your reading!  You got lots to learn!  Congrats on your house, stock up!

Stress is a wobbler! For some, like me, sustained stress will bring on an attack while in cycle. For others, staying stressed acts as a prevent, as soon as they relax, WAM, they get hit. It's never started a cycle for me, just a problem when I'm on cycle.

Joe

No "CH" since last Friday.  My right sinuses are still congested though.  The mystery continues.  I hope everyone is having a happy and pain-free Thanksgiving .

Very strange.   Still no headaches.  Still have small pain in my sinuses (above right teeth, feels like I'm teething, lol), and slight tenderness in my right cheek and near my right eyebrow.

MRI was yesterday.  Well see what happens from here. 

BTW, perhaps no correlation, but I started a night guard for teeth grinding.  Haven't had a horrible headache since.

Quote:

Has anyone linked stress to CHs?  We closed on a new home a couple days after the first headache.

I know when I am stressed out it seems that I am more vulnerable and by that I mean that the normal triggers are doubled, and also that if I let the stress get to me then I can almost count on a headache...


Quote:

BTW, perhaps no correlation, but I started a night guard for teeth grinding.  Haven't had a horrible headache since

About the teeth grinding, I actually had a issue with this a few years ago, I ended up having to have shots injected into my jaw because I was grinding them so badly, and I know stress caused that. Make sure you get a good night guard because otherwise you will find it either in your bed or on the floor because you have spit it out during the night LOL