Hello, my name is Kyle and I'm currently 17 about to be 18. 2 years ago I had a extremely painful headache. Took some Advil then it finally went away. Today I've been treated almost all types of medicines for cluster headaches. I went through almost a year without getting one cluster last year. It came back this November, the exact time I got my very first cluster, I'm I've been getting them since til day. Usually a week is the longest ill last without a cluster then they come to every day painful cluster headaches. I have a neurologist, yes I'm 100%  sure I  have cluster headaches.  I'm currently on verapamil, lithium, and use oxygen and zomig nosespray to prevent all of this. I feel like nothing is working, my mom sees me in so much pain that it kills me more than the cluster headaches it's self. Pain is so bad I become nauseas and will throw up. Last night I had one and it lasted a full hour of pain, that's the longest it's lasted. Nothing would work.  I'm currently on 180mg of verapamil and low dose of 300mg twice a day on lithium. I also take melatonin to help at night. So Clusterheads what's next?  :'(

Kyle, glad you found us. First,
Please tell us where you live. Follow the next line to a message which explains why knowing your location and your medical history will help us to help you. Follow this chain:    CLUSTER HEADACHE HELP AND SUPPORT › GETTING TO KNOW YA › NEWBIES, HELP US...HELP YOU
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That you have a neurologist is o.k. only if he has skill/experience with headache. Majority of neuros don't have either--so get you parents to ask him, quite directly, about his education and experience with complex headache disorders.
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Print the PDF file, below, and ask your parents to use it as a tool to discusss treatment options with the doc.

My first reaction: Verap. dose likely too low. Personally, don't like Lithium as a first treatment, in general, and at your age in particular. But that's a tough issue for a layman to challenge a doc. So, might print out the following and use it to consider a dose increase.
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Headache. 2004 Nov;44(10):1013-8.   


Individualizing treatment with verapamil for cluster headache patients.

Blau JN, Engel HO.


    Background.-Verapamil is currently the best available prophylactic drug for patients experiencing cluster headaches (CHs). Published papers usually state 240 to 480 mg taken in three divided doses give good results, ranging from 50% to 80%; others mention higher doses-720, even 1200 mg per day. In clinical practice we found we needed to adapt dosage to individual's time of attacks, in particular giving higher doses before going to bed to suppress severe nocturnal episodes. A few only required 120 mg daily. We therefore evolved a scheme for steady and progressive drug increase until satisfactory control had been achieved. Objective.-To find the minimum dose of verapamil required to prevent episodic and chronic cluster headaches by supervising each individual and adjusting the dosage accordingly. Methods.-Consecutive patients with episodic or chronic CH (satisfying International Headache Society (IHS) criteria) were started on verapamil 40 mg in the morning, 80 mg early afternoon, and 80 mg before going to bed. Patients kept a diary of all attacks, recording times of onset, duration, and severity. They were advised, verbally and in writing, to add 40 mg verapamil on alternate days, depending on their attack timing: with nocturnal episodes the first increase was the evening dose and next the afternoon one; when attacks occurred on or soon after waking, we advised setting an alarm clock 2 hours before the usual waking time and then taking the medication. Patients were followed-up at weekly intervals until attacks were controlled. They were also reviewed when a cluster period had ended, and advised to continue on the same dose for a further 2 weeks before starting systematic reduction. Chronic cluster patients were reviewed as often as necessary. Results.-Seventy consecutive patients, 52 with episodic CH during cluster periods and 18 with chronic CH, were all treated with verapamil as above. Complete relief from headaches was obtained in 49 (94%) of 52 with episodic, and 10 (55%) of 18 with chronic CH; the majority needed 200 to 480 mg, but 9 in the episodic, and 3 in the chronic group, needed 520 to 960 mg for control. Ten, 2 in the episodic and 8 in the chronic group, with incomplete relief, required additional therapy-lithium, sumatriptan, or sodium valproate. One patient withdrew because verapamil made her too tired, another developed Stevens-Johnson syndrome, and the drug was withdrawn. Conclusions.-Providing the dosage for each individual is adequate, preventing CH with verapamil is highly effective, taken three (occasionally with higher doses, four) times a day. In the majority (94%) with episodic CH steady dose increase under supervision, totally suppressed attacks. However in the chronic variety only 55% were completely relieved, 69% men, but only 20% women. In both groups, for those with partial attack suppression, additional prophylactic drugs or acute treatment was necessary. (Headache 2004;44:1013-1018).

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SLOW-RELEASE VERAPAMIL

Dr. Sheftell applauded the protocol for verapamil used by Dr. Goadsby and colleagues, which entailed use of short-acting verapamil in increments of 80 mg. “This method was suggested by Lee Kudrow, MD, 20 years ago as an alternative to slow-release verapamil,” Dr. Sheftell noted.

“I would agree with using short-acting verapamil, rather than the sustained-release formulation, in cluster headache,” he said. “I prefer the short-acting formulation with regard to ability to titrate more accurately and safely. My clinical experience anecdotally demonstrates improved responses when patients are switched from sustained-release verapamil to short-acting verapamil.”

Dr. Goadsby agreed that his clinical experience was similar. “There are no well-controlled, placebo-controlled, dose-ranging studies to direct treatment. This is one of those areas where clinicians who treat cluster headache have to combine what modicum of evidence is available with their own clinical experience,” Dr. Sheftell commented.
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For the whole family! Be patient! This is a tough bugger to get under control during the first round of attacks until a solid treatment plan has evolved. Secondly, assuming you actually have Cluster, good chance you will be living wiwth it for some time--not to scare you but to encourage: develop patience in coping; study hard in learning how to find effective treatments.

We write from successful experiene--and you can join us!

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Kyle, your verapamil is notoriously low. Tell your doctor CHs seem to need something in the range of 360-980mg/day to find relief. And what is your O2 set up? What is the flow rate? What technique are your using? These can be vital to reducing the pain of an attack, and when coupled with an energy drink, I find the attack aborts very quickly. You do have more options medically. What has your doctor suggested? Scan this site and take notes on what has and has not worked for many of us. It will give you ideas of what to try next. Remember, there is no cure. We are only trying to manage the beast. Blessings. lance

My blood pressure seemed to be low so he didn't want to give me more verapamil. I'm on 10LPM through a mask. I tired it the other day as a felt a cluster coming and it actually went away. He also put me on Gabapentin 300 mg everynight, but took me off of it the next day because he wanted to try lithium.

Kyle, the paradox of Verap. with Cluster is that many of us take doses ranging from 400-900mg WITHOUT any advese effect on blood pressure.

I don't understand why this is so but it is. At least mention this to the doc.

And print out following to give to him.
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Also print and give the PDF file, below.
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Headache. 2004 Nov;44(10):1013-8.   


Individualizing treatment with verapamil for cluster headache patients.

Blau JN, Engel HO.


    Background.-Verapamil is currently the best available prophylactic drug for patients experiencing cluster headaches (CHs). Published papers usually state 240 to 480 mg taken in three divided doses give good results, ranging from 50% to 80%; others mention higher doses-720, even 1200 mg per day. In clinical practice we found we needed to adapt dosage to individual's time of attacks, in particular giving higher doses before going to bed to suppress severe nocturnal episodes. A few only required 120 mg daily. We therefore evolved a scheme for steady and progressive drug increase until satisfactory control had been achieved. Objective.-To find the minimum dose of verapamil required to prevent episodic and chronic cluster headaches by supervising each individual and adjusting the dosage accordingly. Methods.-Consecutive patients with episodic or chronic CH (satisfying International Headache Society (IHS) criteria) were started on verapamil 40 mg in the morning, 80 mg early afternoon, and 80 mg before going to bed. Patients kept a diary of all attacks, recording times of onset, duration, and severity. They were advised, verbally and in writing, to add 40 mg verapamil on alternate days, depending on their attack timing: with nocturnal episodes the first increase was the evening dose and next the afternoon one; when attacks occurred on or soon after waking, we advised setting an alarm clock 2 hours before the usual waking time and then taking the medication. Patients were followed-up at weekly intervals until attacks were controlled. They were also reviewed when a cluster period had ended, and advised to continue on the same dose for a further 2 weeks before starting systematic reduction. Chronic cluster patients were reviewed as often as necessary. Results.-Seventy consecutive patients, 52 with episodic CH during cluster periods and 18 with chronic CH, were all treated with verapamil as above. Complete relief from headaches was obtained in 49 (94%) of 52 with episodic, and 10 (55%) of 18 with chronic CH; the majority needed 200 to 480 mg, but 9 in the episodic, and 3 in the chronic group, needed 520 to 960 mg for control. Ten, 2 in the episodic and 8 in the chronic group, with incomplete relief, required additional therapy-lithium, sumatriptan, or sodium valproate. One patient withdrew because verapamil made her too tired, another developed Stevens-Johnson syndrome, and the drug was withdrawn. Conclusions.-Providing the dosage for each individual is adequate, preventing CH with verapamil is highly effective, taken three (occasionally with higher doses, four) times a day. In the majority (94%) with episodic CH steady dose increase under supervision, totally suppressed attacks. However in the chronic variety only 55% were completely relieved, 69% men, but only 20% women. In both groups, for those with partial attack suppression, additional prophylactic drugs or acute treatment was necessary. (Headache 2004;44:1013-1018).

=======================================
SLOW-RELEASE VERAPAMIL

Dr. Sheftell applauded the protocol for verapamil used by Dr. Goadsby and colleagues, which entailed use of short-acting verapamil in increments of 80 mg. “This method was suggested by Lee Kudrow, MD, 20 years ago as an alternative to slow-release verapamil,” Dr. Sheftell noted.

“I would agree with using short-acting verapamil, rather than the sustained-release formulation, in cluster headache,” he said. “I prefer the short-acting formulation with regard to ability to titrate more accurately and safely. My clinical experience anecdotally demonstrates improved responses when patients are switched from sustained-release verapamil to short-acting verapamil.”

Dr. Goadsby agreed that his clinical experience was similar. “There are no well-controlled, placebo-controlled, dose-ranging studies to direct treatment. This is one of those areas where clinicians who treat cluster headache have to combine what modicum of evidence is available with their own clinical experience,” Dr. Sheftell commented.

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Welcome to the board Kyle

  What kind of mask are you using?  It should be a non-rebreather (the one with the bag).  If so, tape the exhale ports and just crack the bottom of the mask slightly for the exhales.  If you're using 10lpm, then you probably have a 15 lpm regulator . . . crank it up to 15 lpm until you've stopped the ramp, then you can reduce the flow and your breathing rate while youi finish him off.  My 15 lpm reg would fill the bag in about 4 1/2 seconds . . . so, when the bag is full, take a deep inhale for 4-5 seconds till bag is flat (this gives you the 02 that's in the bag, plus the 15 lpm the reg is putting out), then exhale for about 4 seconds (to allow the bag to refill) . . . and repeat.

  Even more effective is the 02ptimask which has a big green 3-litre bag, designed for clusterheads and much more effective than the 1 litre non-rebreather.

  Investigate the D3 regimen.  I was chronic for over ten years and hav now been painfree for 18 months.

  We're here to help and the info/ammo you'll find here comes from folks who TRULY know your pain.


     Be Safe,    PFDANs

        Richard

 

Thank you Bob, I will print that out for my neurologist. Maybe he put me on a low amount because I'm only 17?

I'm using a normal oxygen mask, it doesn't have a bad on it.

He put me back on a prednisone pack as well, so things a are a little better. But I've been gaining wait off of pred and I know it's not good for me.

  OK . . . you definitely have the wrong mask for CH. . . . and you're wasting 02 every time you exhale (that's the purpose of the bag . . . to collect 02 during the exhales).

  So . . . for now . . . until you can order an O2Ptimask . . . try this.  Tape the exhale ports on the side of the rebreather you're using. Up the reg to 15 lpm . . . and inhale  at the rate the reg is putting out, crack the bottom of the mask for the exhales (since you've taped the exhale ports) and exhale quickly, then repeat til the ramp stops. . . and then you can reduce the lpm to finish him off.

  If you were able to abort with the rebreather mask at 10 lpm, you're going to be very happy with the efficacy of the O2ptimask (designed for clusterheads).

    Be Safe,   PFDANs

       Richard

Here's another idea till you get the right mask that I've used for years on my portable tank, forget the mask, just breathe in straight from the tube making sure you don't breathe from your nose-- on exhale I pinch the tube by folding it in half to save oxygen, a bit of a hassle but it works just fine.

                                Good luck,   Sean

Kyle; your weight gain is why we can't use Pred for more than a few days--especially since Cluster will be with us for a long time. This why preventives, like Verap, are usually started at the same time as we use the Pred (for about 10-14 days, tapering off as the Verap becomes effective.)

At this stage, patience is your guardian! Doc is likely going to have to a couple of preventives andd these trial runs take time. No way to by-pass this stage.

Thanks guys, I actually had a alarm clock headache around 6 and used my mask like you guys been saying and surprisingly in 10min I was pain free. While usually waking up with a headache the pain gets severe extremely quick.  My next appointment is the 17th, but that's a long ways from now especially when im hearing/reading I should be on a higher dose of verapamil.

Way to go Kyle

  Now make sure you order an O2ptimask and you'll have even quicker results.

  Until you can increase your Verap (which is a BP med and needs to be monitored), you might give water therapy a try (see"water X3" . . . link on left).  It can work . . .  did for me . . . it IS NOT easy to do.

  Be Safe,  PFDANs

     Richard

I'm doing it, I'll do really anything to help get rid of the beast or just go away for at least a week. I havnt had one week of not getting the beast in 6 months.

G'day kyle,
Great to see your getting your OX sortid, but are you on
the D3 Regime, to stop a lifetime of pain and suffering,
if you land in the 80% mark. Also have you seen Melatonin
mentioned here you can buy it over the counter to get
you through the night without those wake up calls.
PM Batch about the D3 Regime.

Good Luck, Hoppy.

I am not on D3 Regimen...but I did just read his thread about it that he mad a long time ago. So I think Im going to try it. Im actully about to get a shot in the back of my neck on that muscle to stop the headaches for a while.

Kyke

  The shot you're going to be receiving . . .  does "trigeminal nerve block" sound familiar?

  I've been away from the board for a while and am not up on all the procedures (such as the above) and newer ones, but if you will call the doc's office and find out what procedure (shot) you're scheduled for, then go to the Meds, Therapies board and start a thread, "What's known about  ________? 

  You should get a lot of feedback from the pros and folks who've had the procedure.

  Oh . . . . now that you've gotten a better handle on the 02, how fast are you aborting the daytime hits?  Always remember to get on the 02 at the first sign of attack . . . minutes matter!

  Be Safe,   PFDANs

     Richard

I believe that's what it is..I got it done around November and a few days later I was pain free for a few weeks. Once I get the shot tomorrow Ill get the full details on what it is to share it. I also got my verapamil and now hes letting me take 80mg 3x a day. Hope fully it will help. Im going to as well talk to him about the D3 Regime because I really want to try that.

thank you

The problem you're creating is: try Verap; try D3; try O2; try some injection--at the same time.

Attacks controlled or stop: What worked?

Put all your cards on the table with the doc. He needs to know about you plans/thinking.

Well I got the the injection, which was a anti inflammatory that's went into the back of neck towards head. I talked to him about the D3 things and he heard about and said to give it a try but don't do as much they are saying since lithium is already creating d3 and calcium...I might of misunderstood.