Good afternoon. I am so pleased to meet all of you, but am sorry that we all suffer from the demon in the head. I was diagnosed with clusters last Monday after a trip to the ER and a doctor's appointment I had scheduled. Thankfully, my doctor was familiar with what I was experiencing and he was even able to help me.

I have been suffering from migraines for years. This time when the headache started, I knew something was different. Old remedies weren't helping and the headache itself was more intense and it (and I) behaved quite differently. I thought I was losing my mind. :-[

With the doctor's diagnosis and google, I was able to find this support site and I am so thankful. Thank you all for being here, though I know this is the last place anyone really wants to be. You don't know how important it is to me that I am not alone in this battle to fight my own personal demon.

I am looking forward to learning all I can from those who know firsthand exactly what I am feeling.

Dianna

Welcome Dianna! We're glad you found us. Are you working with a headache specialist yet? We have seen the best results from doing so. There are hundreds of headache types, some which mimic CH, and it’s important to eliminate those before arriving at a firm diagnosis. 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. 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.

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.

There are alternatives to mainstream medicine......visit our Clusterbusters board for information on these methods:

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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

Hello Dianna & Welcome to Clusterville

  Sorry you had to find us . . . but glad you did.  I came here 2/02 after my wife found the site for me . . . after 13 months mis-diagnoses, non-working meds, multiple tests.  This site gave me the info to take to my doc and start getting some control over this beast of ours.

  Joe gave some excellent advice above.  Do read links posted and all the links on the left.

  You've found the motherlode of CH info/sharing/caring.  Read, read, read and ask any questions you might have.  The info/advice you will receive here comes from folks who truly know your pain.

  What preventative(s) or abortive(s) did your doc prescribe?

  Be Safe,    PFDANs

    Richard

Thank you for the information and the warm welcomes, Joe and Richard. Makes me feel right at home here. :)

I left the hospital Monday afternoon and went straight to my primary care doctor's office for the appointment I had made earlier. When he saw me and heard my story, I was amazed that he understood what I am going through. He suggested oxygen therapy, steroids, and verapamil right off the bat and then gave me a steroid shot before I left.

I have not been prescribed anything yet to help with the clusters, Richard. My doctor ordered a CT scan but could not get approval from my health insurance. I have other health problems, too, so he wanted to make sure that there wasn't something else going on. After reading some here, I am convinced that I have cluster headaches.

I will be calling my doctor in the morning to see about getting the prescription for the oxygen. The other medicines might have to wait until I see the neurologist on Friday. I am sure he will be able to get the authorization for me to have the tests I need and then they will work together to get me better.

I have been dealing with the clusters since a migraine on July 8. I am wondering if that is what triggered these to start up again? Can hot weather be at fault? I have so much to learn from you all. Thank you for being willing to share what you all have learned of this journey through pain.

A doc that suggests steroids, verapamil and oxygen right off the bat...DAMN!!!! you have a keeper there. Do read the oxygen link....it's kind of over whelming at first but at the same time it's really simple. For 02 to abort your attack:

1: Get on it right away. A delay of even a few minutes can extend my abort time substantially. I average about 6-8 minutes on my aborts, that's from onset to completely pain free.

2: Your lungs need to be getting 100% oxygen, at  a rate to support hyper ventilation. Best achieved using a Non Re Breather Mask, and a high flow regulator. At LEAST 15 LPM, preferably 25 LPM or better.

Nasal canulas, re breather masks, low flow rates, all guarantee failure.

You will find the site of a couple of green E-Tanks in your closet, with a regulator and a non re breather mask hooked up and ready to go........kinda takes a whole lot of the fear factor out of the beast!

As to what starts a cycle....I've been trying for 33 years to isolate what changes in my routine that brings on a cycle. I still have no idea. Once a cycle starts, if I avoid alcohol, stress, major sleep cycle disruptions, and extreme hunger, (my personal triggers)...I can reduce the number of attacks I get. It's the best I have after all those years! :D


Keep reading the boards, knowledge is your ally.

Joe

  Ditto on the "DAMN!!!"  You're very fortunate indeed to have a doc who has some knowledge of CH and treatment direction.  The CT (and often MRI) is necessary to rule out other potentially much more serious conditions that can mimic CH.  If CH, they will come back "normal".

  Verapamil is the first-line preventative for CH as it has fewer side effects than some of the others.  That's what worked for me.  It's a taper drug . . . which means the doc will increase the dosage until it reaches an effective level.  I had my first PF day in over a year when I hit 240 mg (considered to be the minimum effective dose) . . . had three attacks that night, but had 02 to kill them before the "dance" stage . . . it was a WONDERFUL day!  I got as high as 480 mg, then down to a 360 mg maintenance dose which limited the frequency/intensity of attacks to a level I could easily abort with 02.  Many have some problems with constipation (I did), which is common and easily remedied with diet change or stool softeners.  Verapamil is a BP med, so your doc needs to monitor same as you increase the dosage.  Many take MUCH higher dosages and often in combination with other drugs such as Lithium.  Only other side effect I had was what we refer to as the Verapamil "buzz", about 20-40 min after taking . . . tis normal and passes quickly.

  You will want to acquire an O2ptimask with the big green 3 litre bag . . . much more effective than the 1 litre mask your med supplier will have in stock (which is what we used before the 02ptimask, designed for clusterheads became available) . . . links on the site.

  Your insurance may not cover 02, but it's CHEAP even if you have to pay cash.  Rates vary across the country.  I pay $10 per "E" tank, no deposit, no limit on tanks (I keep 20).  When in "low' cycle, can abort 6-8 hits per tank. An "E" tank will give 45 min of 02 at 15 lpm.  A bad hit can take 20 minutes . . . VERY important you get on the 02 at the first sign of attack to kill him quickly as they can ramp up so very very fast.

  Do try and identify your triggers.  For me, alcohol (I quit 2/02), exhaust fumes, certain chemicals like carb cleaner or other solvents. 

  You got SO lucky with your doc, I'd suggest buying a lottery ticket this week  ;).

  Keep reading . . . keep asking.

    Be Safe,   PFDANs

       Richard

Ditto on the advice offered so far, and yes watch out for the alcohol trigger!! It is guaranteed to trigger an unforgettable attack for the majority of us, so I think you'd be well advised to just avoid it while susceptible to CH attacks.

It's practically unheard of for a primary care doctor to know about CH such as yours does - at least that part was lucky.  :)

Welcome Dianna!

Count yourself LUCKY!!  Your doc is not the norm.  Many here have gone through several doc's and have had to fight to get the correct medications and Oxygen!
Do me a favor and the next time you see him give him a pat on the back if not a hug for being an excellent Doc!

Glad you found us but so sorry you had to do so.  You will find a wealth of info. here and the added support each CH'er needs.

PF Wishes to you!

Thank you, bejeeber and JustNotRight, for adding welcomes to me. I think I have come to the right place. :) Lots of friendly folks and an abundance of information to help get me through this bout with the devil.

I haven't drank anything since the last night we went out and after we got home, I spent 30 minutes on our back deck rolling around on it and begging to die. I couldn't take anything for the headache because I had been drinking. :'( My margaritas were not worth the pain I wnt through for two hours.

I read on the forum that someone was having luck taking Zyrtec before bed. I tried it last night. Had two clusters, but they were the little short ones that quickly left. I am hoping that means I can get away from the pain pills (from previous surgeries) that I have been taking. I am not one to take pain killers.

I see the neuro on Friday. It will be interesting to find out if he is as knowledgable as the primary care doctor about migraines. And, yes, Just Not Right, I plan on giving my PC a hug the next time I visit him for pointing me in the right direction to learn about clusters. I am so thankful to have found this forum.

Hello, Diana. Like you, I and others found that antihistamines (at least early on in my CH career) were of some value. Others have also found sprays like 4 Way nasal spray helped some as well. I can only hope you find the same but as you have been advised, get on the good and right stuff as quickly as you can. I notice you are also taking pain meds for another reason. This too can be inviting but we have found such meds tend to make our condition more intractable at best, and are useless at worst while creating other problems of their own. Good luck and keep us informed. Blessings. lance

I use the generic form of Zyrtec before bed and it does help me.  Glad you found some benefit to using it too.

Be very careful about using 4way nasal spray to often!!  You can easily blow out your sinuses with it.  Speaking from experience here, OUCH!  :o

You may also find 500mg of Valerian Extract helpful before bed.  You may want to half the dose to 250 if you can just to be safe.  I found an over the counter aid called Tranquil it has 500 mg of Valerian extract and 240 mg of hops extract in it.  As I said though you may want to half the dose.

As always ask your doctor before adding any herbals or over the counter drugs to your CH regime.

Thank you, whimsey1, for adding your information. I am willing to try anything at this point.

I tried the Zyrtec again last night and it didn't do anything good for me. I was up three times pacing the floor and drinking coffee. I am so tired of coffee now. After this is over, I don't think I will ever drink another cup.

I had another doctor's appointment with my primary care physician this morning. I carried in a printout of the topic "123 Days PF And I Think I know Why" and asked him if he thought it would hurt me to try the supplements and vitamins with the medications I am already on and he said he thought I would be okay with it and that it is worth a try.  [smiley=thumbsup.gif] He, also, gave me some samples of a different pain medicine that wouldn't be as addictive as the hydrocodone. I told him I had enough bad habits without adding drugs to the list. Before I left, he reassured me that he will prescribe the oxygen for me after we find out what the neurologist can do for me. We are hoping that the neuro can get the CT scan authorized to make sure that nothing else is going on. And, JustNotRight, I did give him a hug today to thank him for being my doctor. I feel very lucky having him in my corner for this fight.

I am so excited to find that there is help coming soon for me.

Dixie Angel wrote on Aug 9^th, 2011 at 4:39pm:

I was up three times pacing the floor and drinking coffee. I am so tired of coffee now.

Hi Dixie A,

Just in case you haven't heard the details about it yet - energy drinks are commonly found to be significantly more effective than coffee due to the caffeine + taurine combo in the drinks like Red Bull. Monster, etc.

Shoot! . . . Bejeeber's right!  Just scanned the thread again and hasn't been mentioned yet.

Do get thee to a market (everybody seems to carry them now) and try one of the energy drinks with caffeine and 1000 mg of taurine.  I like Rock Star (orange, lemonade, grape, two or three coffee flavored), which I find more palatable than Red Bull or Monster, which tastes like cough syrup to me.

DOES seem to help abort more quickly and am using less 02.  Definitely more effective than coffee.

  Be Safe,   PFDANs

    Richard

Thanks, bejeeber and RichardN! My husband has a couple of Monster drinks in the refrigerator. I don't know it I can drink them, though. I can barely kiss him hello when he gets home from work if he has had one on the way... :D

I will try and pick up something different the next time I am out and about. I like lemonade... :)