Hello everybody.

As you can tell, I am new to this site. I am glad I found it. Here is why I am here.

About five or six years ago, I suffered from strictly nighttime CH for several months. I really do not remember too much about that time, because I really have had no reason to think about it. After all, it “went away”. I had an interview with a neurologist who told me to call him if they returned, and he would prescribe medication which would get rid of them. I sure wish I could remember who he was, or what medication he had in mind. 

Well, they are back. With a vengeance. On August 1, 2010, I had the feeling that I was quickly coming down with a really bad head cold. That one was kind of light. Since then I have been hit 15 times (sure seems like more), day and night. Every other day will be pain free.

I started taking 25Mg/night of Topamax three days ago, so it’s a bit early to see what good that is doing.

I am just hoping that. Like last time, I can bear a few months of pain and get another 5 years of relief, but something tells me that this time is different. I never had daytime hits before, and they also seem more severe.

So, with that, thanks for listening and wish everybody freedom from pain.


Bob

Welcome to the board Bob. You'll learn not to count on your CH's maintainijng any kind of pattern! You'll go two or three cycles that are identical in timing and duration, then next go round he's all over the board again. Even if you find that first doc, you'll find there's no "cure" yet, but we keep looking!

Topomax is a well known prevent for CH, the goal of a prevent to reduce the number and intensity of your hits. I use Lithium, Verapamil is probably the most popular prevent and is typically what doctors try first. Lithium will block 60-70% of my attacks after I've been on it 10-14 days.  Topomax is lovingly referred to as "dopey-max" by many because of a common side effect, it can make you a bit loopy!

Read the oxygen info link on the left. You need a good abortive, and oxygen is, in my humble opinion, simply the best. I'm a 32 year sufferer and  nothing compares with the ease, speed, and lack of side effects of 02. A headache starts, I start huffing, 6-10 minutes later, I'm pain free. Imitrex injectables will stop an attack on a dime for me but they're expensive and I don't like how they make me feel, I use those only when I'm caught away from my 02.

For now, go grab  a four pack of Red Bull, Rock Star, or any energy drink containing the combo of caffeine and taurine. Chugging one of those at the onet of an attack can abort or really reduce an attack for many.

For night time attacks, an OTC at vitamin and health food stores, Melatonin. Start with 9 mg half an hour before you go to bed. Some end up as high as 15 mg, will block a lot of night time attacks for many on the board. Give it a week or two to take effect.

Welcome to the board, you have much reading to do. Most doctors know very little about CH and even less about how to treat it. Your best bet is to educate yourself, and help your doc form a treatment plan.

Joe

Welcome,

Get yourself some oxygen and a non rebreather mask, start making a daily log. You will get many other tips here so hang in there and learn as much as you can.

Coach Bill

Hi Bob!
Welcome to the club no one wants to join!
Please, Joe has posted an excellent summary of basic info - take hope in knowing that there are treatments and there is hope of pain free time...
Again, welcome!
:)

Hey Bob,

Welcome aboard.  As Joe has already advised, you've got some reading to do and he's already given you some time honored tips that work for most of us most of the time.  Unfortunately, there's little that's predictable about cluster headaches save for the consistent fact about them that is... they can be very unpredictable. 

We're all wired differently so what may work for some, may not work at all for others.  Another of the many frustrating aspects of our disorder is that what worked during the last bout may not work well on the next or at all.  I say this not to spook you but to give you the benefit of experience you'll need as finding the "right" combination of preventatives and abortives is a work in progress.   In the interest of getting you started in the right direction, the following may be helpful.

Some of the best medical advise comes from the National Guideline Clearing House on Recommended Standard of Care for Cluster Headaches prepared by a task force from the European Federation of Neurological Societies (EFNS):

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

The chart below provides a roll-up of these recommendations. I've also appended suggested sample prescriptions for oxygen therapy below the chart.  Many of us have found that oxygen flow rates of 25 liters/minute support hyperventilation and work much more effectively with much shorter abort times.

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGESTART PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

The list of neurologists on this EFNS Task Force who prepared this recommendation reads like a "Who's Who" in the field of top neurologists specializing in our disorder.  They include May A, Leone M, Afra J, Linde M, Sandor PS, Evers S, Goadsby PJ.  All of them are either full professors at national teaching hospitals across Europe or they've held similar positions.  As such they've likely seen and treated more cluster headache patients in a month than most headache specialists see in many years if not an entire career.

Take care and please keep us posted.

V/R, Batch

Welcome, Bob, and please know we all do understand. Everyone's advice is well worth following. Our experience has been, while there is no "cure" for this beast, there are ways to manage the hits. One of the biggest losers in any CH cycle tends to be our optimism. Be sure to keep a positive attitude about yourself and life by arming yourself with as much knowledge and effective interventions as possible. Live life in between hits. Don't let the beast take you down but fight against it, and enlist the help of supporters. Blessings! lance

welcome Bob.   :)

If 25mg does not work, ask for 50. Sooner than later. Best o luck jhk

No body likes to say this, but welcome here Bob!  You'll be glad you found this place, there's a wealth of info here.  Everyone is different in what works for them but without a doubt; O2 is a game changer. There's a wealth of info on the left hand side of this page and if O2 is used as instructed, you should get some relief from the suffering, it does for most of us.

Cycles are strange and mine are never the same.  Sometime 4-6 weeks, sometimes months and at one time seven years, I thought I went cronic.  The pain free times could be a few months or years, last one being four years.  You never know.

Finding a good knowledgable doctor on the subject is the hardest part.  I've almost got mine educated enough on the subject he usually doesn't object anything I ask of him.  He may get it wrong sometimes, but he'll get there.  Most importantly he understands.  He's seen me with an attack while I was in his office.

Hang in the, keep a positive attitude, research this site, stock up on your favorite energy drink and things eventually get better  ;)

PFDAN soon...

Thanks for all the replies. Wow. Nice to know so many great people.

Just to let you know, I have added 1000Mg of Magnesium  everyday, and 10Mg of Melatonin (with B6) at bedtime. Since my last post, I only had one hit at 3Pm yesterday, and it was gone before I knew it.

My PC gave me a referral to a neurologist, and I was able to make an appointment for next Thursday. I was lucky, he had a cancellation. It would have been a month otherwise.

Thanks again, and I will keep you posted.

Bob

Hmmm,

Im hearing alot about magnesium, even the newbee's are getting the fix. But im a bit reluctant to just jump all over the mag due to he still is on the preds.

Has anyone used the mag as just a prevent? and then just mag alone??  Let me know,

Coach Bill 8-)

I started a daily magnesium supplement maybe 20 plus years ago at the suggestion of a neuro. On or off cycle. I'm convinced it's been a benefit to my cycles. By itself? Have not tried it as a prevent.

Joe

coach_bill wrote on Aug 21^st, 2010 at 1:21pm:

Hmmm, Im hearing alot about magnesium, even the newbee's are getting the fix. But im a bit reluctant to just jump all over the mag due to he still is on the preds. Has anyone used the mag as just a prevent? and then just mag alone??  Let me know, Coach Bill 8-)

What kind of interesting is that there is some evidence that many people with migraine headaches are magnesium deficient.  There is some mixed evidence that repleting magnesium in migraine sufferers who have magnesium deficiency may be helpful in improving the headache severity and/or frequency. 
I don't know of any studies of magnesium in CH...
:)

Mag alone hasn't worked as a prevent for me.

About 13 years ago I found some medical report online about CH sufferers being magnesium deficient, with a couple case studies or something suggesting that an IV of mag sulfate could shut down a CH episode. I was convinced this was the ticket especially since I had plenty of mag deficiency symptoms such as leg cramps, restless legs and eye twitches.

So I faxed the study to my doc excitedly, got him onboard, went and got me a mag sulfate IV, and promptly continued with a slamming string of CH hits.

Neither I nor that doctor came away very hopeful about any miracle results with mag for CH.

Well, here it is Saturday already. Hello again.

I saw my new (there is no old) neuro two days ago. Our 25 minute meeting was refreshing, and a little confusing.

He told me that in the years he had about 50 CH patients. We all seem to have the same physical characteristics. Like we all had the same ancestry. No wonder we feel at home here.

He suggested I go off the topamax.

What he prescribed was Prednisone, with the following taper:

4 doses the first 7 days
3 doses the next 2 days
2 doses the next 2 days
1 dose the next  2  days

I do not know the dosage; I left the prescription at the pharmacy.

He also gave me a prescription for Topamax. There lies the confusion.

I think what I will do is slowly increase my topamax from the current 25Mg (since 8/17) and use the Prednisone as a transitive agent. I really do not have confidence that my cycle will be over in 13 days.

Another thing. Has anybody else experienced denial with CH? I mean, between attacks, thinking that it is not really happening? This is only my second cycle, and the first was 5 or more years ago. You know where I am going with this, I am sure. I AM NOT AN ALCOHOLIC! Hi hi

Oh, one last item. No mention of O2 during the visit. I am as much to blame as he was, but …

chbob04 wrote on Aug 28^th, 2010 at 3:58pm:

Oh, one last item. No mention of O2 during the visit. I am as much to blame as he was, but …

Many Docs will not mention it for various (incorrect) reasons.

Do as you see fit, but using O2 beats the hell out of hurting.

The prednisone is used as a transition med....but for a small percentage of CH'ers will actually abort the whole cycle. He leaves me somewhat concerned as to his knowledge of current treatments for CH......seems he's putting all of the eggs in the prednisone basket, which is scary.

I say that because if you are one of the lucky small percentage and the pred breaks the cycle, great, he's a genius and you're pain free.

If you're not.......for most the prednisone stops the CH while you're on it....but when you go off the prednisone, the CH comes back even worse, like it's pissed you DARED try to beat it with pred. :'(

My advice, call his office Monday and request the oxygen......and some imitrex injectables to have on hand for when you come off the prednisone.

Joe

Yes. But I think that goes back to the bit about denial. The pain since starting topamax (and melatonin at night) is orders of magnitude less than it was the first 14 days.

Sorry Joe. Had not read your post yet.

Speaking of imitrex, he did also prescribe imitrex spray. He warned me that the taste was really really really really bad. I mean putrid. He recommended Vernors Ginger Ale as the only known substance that would counteract the fowl taste.

By spray I'm guessing he did the sinus sprays? I have never tried them but some on the board have had success with it. They'll be good to have on hand when you come off the pred. Feel better knowing you'll have a tool to fight with! ;)

Joe

One more thing, I can vouch for those little 5 hour energy drinks as aborts. No more than a mouth full ( or less), and one of my more severe HA's went away in a few minutes.

Hi Bob~

Sorry to see you here, but glad you found the place.  I have learned a lot from the postings on this site.  Each persons clusters react differently.  Some get relief from caffeine or red bull, for other it is a trigger.  Some get relief from heat, some from cold.  My suggestion is that you start a log and see if you can find out your triggers and then go from there. 

I suffer from cluster/migraines, so some of my triggers are scents or tastes, sometime strobbing or flashing lights, humidity, sudden fluctuation in temperature, coffee.  Tea is a biggy for me because it contains tinactic acid which closes off the blood vessels.  I learn to avoid my triggers and then found what works for me.  Onset, Vicodine might knock it out.  Then their is Imitrex, which just kills my stomach so I try to avoid it.  Then once it hits a 6 or more, a shot of torodol.  If I take torodol too soon it causes a rebound headache and then there is just nothing to be done.  Sitting in front of a very cold airconditioner will sometimes numb my face to the point where it is tollerable or will even lessen the attack.

Like I said, each person has their own way of dealing with it and there  is not "cure all".  My understanding from my experience is that my pain somehow is related to the restriction of the blood vessels.  Antiinflamitories (torodol) seem to work well.  But, the best advise I can offer is to stay hydrated.  During a "season", don't eat or drink anything that will dehydrate you, coffee, tea, alcohol and drink lots and lots of water.  Oxygen therapy helps a lot, too.

Take care and I will be praying your bout ends soon and you do have a loooooooooong respite.

Just rereading some of the posts.  Mag did not work for me and they actually had me taking mag and calcium.  Maybe that's why it didn't work.

Prednisone is a strong antiinflamitory.  I hate the stuff. It makes me nutz, I eat constantly and cannot get full, and cant sleep.  I have a displaced sacroilliac also and my doctor put me on methoprednizone.  It is basically an oral form of cortizon and related to prednizone.  Relieved my hip pain in 3 days but noticed a wonderful side effect that it worked great as an abortive for clusters.  I was in the midst of a cycle when I started taking it and suddenly realized that the headaches were gone.  I thought the cycle was over until I stopped taking the methylprednisone.  Then they were back.  The doctor hates giving it to me.  You would think I was asking for Oxycontin by the hundreds.  It is taken just like prednisone.  6 then 5 then 4 ....  I can get it about every 3 months for hip pain.

Hi!

I'll vouch for the fact that those nasal sprays taste rotten!  Definately recommend you get yourself a script for oxygen - give him a call!  No side effects, no yucky after taste (that lasts well into the next day if taken at night)

Wishin you all the best,

Kate

Fuuny, the imitrex nasal spray doesn't taste strong or rotten to me.

I suppose it depends on a person's sense of taste (which it turns out is a process where a lot of different components are detected, then synthesized, and this varies greatly from individual to individual), and maybe just how much of the imitrex ends up actually contacting your taste buds....?

I use the spray and if you taste it your not using it right and it wont be affective.Just a light sniff not a snort when taking it.if bit gets to your taste buds it's not in your nose and must go through your system to take affect.It must stay in your nose not your throat.

Interesting - I bet a lot of us have been instinctively thinking that the more force you put into snorting it, the more it will be absorbed

I wanted to add that before I found this site, I thought Red Bull was an alcoholic beverage.  I just never had reason to give the stuff any thought at all. I don't drink.

I now have 3 cans in the 'fridge. The way things are going, I am thinking that those three cans may be there a real long time  ;D .

I have never increased the topamax dosage from 25Mg/day, and I plan to finish that prescription. It has 2 refills, and I will get one refill to have on hand. I had a prescription of Prednisone filled today, but I do not want to use it. It should have a pretty good shelf life?

Maybe I am being a bit optimistic. I see no reason to increase or add any meds.

I am also too paranoid to reduce them.

What do those of you who are episodic use as a criteria to determine that a cycle has truely ended?

Thanks,
  Bob

Ive heard people on the board say that if you have 2 weeks without a hit or shadow, you should think about trying to cut down on the meds and see how you do.

I tried to cut my verapmil a week or so ago and had shadows again so I went ahead and went back up on it.  I'll give it another go in another week.  I did get off the lamictal without a problem...

That's always been my rule of thumb. 2 weeks pain free, start weaning slowly off the lithium...with the doctors knowledge and approval....and see if i get bit or not!

JOe

You mean I have to wait 2 weeks before I can have a beer,It's already been 5 weeks. :)

I wait until I'm safely off of my prevents for a week or two before my first beer......but then I'm a chicken that way!!!!

Joe