Any Cluster Headache sufferers out there?

[cart7t]

I've had a periodic history of these REALLY bad headaches over the years, they usually hit me around this time of year but not every year.  The episodes last around 3 - 4  weeks or so and then end w/o warning.  Wife talked to a co-worker and he said they sounded like cluster headaches that he suffered from.  Anyone else suffer from these?  

I've read up and I've got virtually everyone of the classic symptoms.  The d**n things are nearly timed to come on virtually everyday at the same time.  The sad part is they occur at night and wake you up out of a sleep.

Forget the over-the-counter medications, even Excedrin Migraine, they don't work.

I'm calling the doctor today.

Any sufferers out there and what medication do you take?

[Low_Budget_Hooker]

I was diagnosed with ECH (Episodic Cluster headache) 6 yrs ago but have been dealing wit it dor 21 yrs.  Since being diagnosed, I have found what works for me.

Straight oxygen works as an abortive.  Imitrex works if you don't catch it in time with the oxygen.

Cart, I feel your pain.  I have a board you HAVE to visit.

www.clusterheadaches.com

my name there is "inyoureye"

I'm in a rush right now but I am highly educated on cluster from dealing with it for so long and will be happy to walk you through your process of diagnosis.  There IS help and there IS pain relief out there for you.  Imitrex is a Godsend.

I also posted about this in "broken fins" thread.  This one is no joke folks, said to be the most painful afflictions known to the medical community.  Described as worse than amputation w/o anesthetics.

This is just a very special word about some VERY special people.

www.clusterheadaches.com

I am a member on the forum board there and these people are some of the finest alive.  As we here share our passion for bass fishing, they share stories, med experiences and just about everything having to do with CH (cluster headache).  I show uo once or twice a year and they accept me back like I never left (because in my heart, I haven't)

These people support each other at a level I've never seen anywhere before other than by soldiers on a battlefield.

They also have a section for supporters (wives, husbands, family of the afflicted)  This section offers great explanations and guidance for supporters, great stuff and priceless info.

This affliction we share has ruined many lives.  My life would not be enjoyed at the level it is without these people.  Many are much more knowledgeable concerning CH than many doctors and are happy to help you.  Of course, they are not doctors so you need to be careful of what you believe but on a general level, they have guided me through trial and error with many different preventative and abortive drugs, etc. and have reduced my suffering greatly.

Just having people who understand and are willing to listen is huge.  Their knowledge is just another bennie.

I just wanted to give a public thank you to these folks and let anyone reading who suffers from CH to know that there is a place,....with great people,....who care.

Just like here.

A very heartfelt "thank you" to the creators, owners, staffers and members of www.clusterheadaches.com

Cart, get to that site and read.  There are also resources there that have helped me out.  Things like a form to explain what you have to your employer, etc.  Great stuff and great people.

If you aren't sure if it is CH, read this below.

A typical cluster headache cycle, for an episodic sufferer, most commonly appears during seasonal changes. The attacks generally last 6 - 8 weeks, having anywhere from 2 - 10 intense attacks a day, each one lasting (usually) between 30 minutes and two hours.

For many, the first signal of an impending attack is the presence of Horner's Syndrome which is a drooping of the eyelid and dilation of pupil on the affected side of the face. The pain quickly escalates from no pain to unbearable pain in 5 to 10 minutes and then subsides in the same manner it started, unbearable pain to no pain in 5 to 10 minutes. Attacks generally happen at the same time each day like clockwork. Attacks usually escalate from 0 to 6 or 7 (on the Kip scale) for the first day or two of the cycle, then 0 to 8 or 9 for the next few weeks, hitting 10 level pain directly at the peak of the cycle. The number and intensity of attacks increase steadily until the apex of the cycle is reached, bringing  the most number of attacks per day with the highest level of pain. The attacks then gradually start to diminish until the cycle is completely gone and the sufferer is in remission until the next cycle. Remission periods are completely unique to each sufferer, but generally range anywhere from six months to five years.

For chronic sufferers, however, the cyclical pattern is absent and the attacks persist throughout the year. The intensity of each attack varies randomly. Remission for chronic sufferers for longer than a 14 day period is very rare, more usually, only a few days at a time.

During a cluster attack, blood pressure elevates, heart rate increases, the body overheats, a ganglion lump on the back of the neck is quite common which becomes inflamed during an attack and diminishes when the attack subsides. Intolerance to light and sound is much more common with migraine sufferers than cluster sufferers, although some do report the same sensitivity and prefer to be in a quiet dark place to be alone, however, remaining motionless or falling asleep during a cluster attack is NOT POSSIBLE.

There is quite often nasal congestion and tearing from the eye on the side of the head that is being attacked. Attacks are usually unilateral (one-sided). Attacks normally occur on the same side of the face each cycle. Attacks very rarely "switch sides" in the middle of a cycle, but have been known to "switch sides" between cycles (right side one cycle, then left side the next cycle).

The pain is centered more on the face than on the rest of the head, specifically the eye, cheek, sinuses (which is why they are so often misdiagnosed as sinus infections). The sufferer can not function normally during an attack and quite often prefers to be left alone in order to deal with their pain. The attack commonly and regularly wakes victims from a sound sleep. The pain has been compared to amputation without anesthetic. Many mothers who are cluster sufferers describe it as a pain much worse than natural childbirth.

Quite often for a migraine sufferer, the slightest motion during an attack can be nauseating and they cannot tolerate any light or sound. It is rare that a true cluster sufferer can remain motionless during an attack because of the intensity of the pain.  Contrary to migraines, kicking, thrashing, pacing, rocking and banging the head are common during an attack. Vomiting is not a common episode for most, unless it is a side affect of medication.

Contrary to some beliefs, there has yet to be determined a stereotypical cluster sufferer. The incidence is higher in men than in women but generalities are difficult to establish. There is an excellent sufferer's profile survey on our website available to further demonstrate this point.

Question,...which eye do you get hit in?

[Low_Budget_Hooker]

Cart- my phone number is in your PM box.  Absolutely feel free to call me.  Your life is going to change for the better concerning this stuff, I promise.  I'll be your cluster buddy.

[cart7t]

I've suffered from this on and off for quite a few years,  10-15 +.  Very episodic.  Usually it's been 2-3 years between episodes which almost always have occurred in the fall.  That article pretty much sums it up.  It's my left eye/temple area that's effected and from my recollections, always has been.  

Thanks for responding Russ and thanks for the info on the medication.  I used to pass these off to tension or sinus headaches for years.  My wife told me several years ago that it sounded like clusters.  I should've listened.  It's been interesting reading on this.  I'll have to visit the site after work today.

Question on the oxygen.  You kinda know when one of these is coming on, it's like hearing the train off in the distance and you know it's coming.  If you hit the oxygen then will it stop it?  

[Low_Budget_Hooker]

The onsetting feeling you describe has a name.  "The shadows".  When you start to feel the shadows,..turn on the oxygen and breath for about 5 minutes and guess what.....GONE!!!

I know, I know, your hand just went across your heart in disbelief.  When I found out that something so simple, so NATURAL, and so safe (for you)(very dangerous around an open flame,...like KABOOM dangerous) could cut the "Beast" from coming,...I wanted to go do a dance in the middle of Main st.

It absolutely works.  If I have Oxy available 24/7 through a cluster, I am safe.  The issue for me is that when I got into my late 30's, the body chemistry started changing and I started getting "Hits" at night, in my sleep.  Now, this doesn't wake you up until the pain reaches a level that is enough to wake you.  By then, it is usually too late for the Oxygen.  The Oxy is ONLY an abortive and ONLY works while the beast is still a shadow.

That is where the Imitrex comes in.  It is a stat pen, a shot you give yourself, no more painful than a ***** in the finger like a blood glucose test and when this stuff creeps through your veins, within 5-7 minutes, you feel the pain residing and within another 2 minutes it is COMPLETELY gone.  AMAZING.  (but not great stuff for your heart, I use the oxy 90% of the time and save the Trex for emergencies or like when I am working, I cannot carry an Oxy cylinder on UPS truck-hazmat issue)

 Now one thing with oxygen is a thing called "rebound" headaches.  You may get shadows again in an hour or 2.  Hit the Oxy again and you are fine.  I never really have more than 2 rebounds, 3 max.  It is the headache trying to manifest itself again,kill it a few times and it gets the point

[Low_Budget_Hooker]

also, 2 yrs ago, blue cross/blue shield finally approved Oxygen as a pain relief treatment.  It is now covered 100% by my insurance.  For yrs, cluster sufferers where obtaining it from welding supply shops.  They were our saviors.  Funny how many welders know all about cluster,lol

Imitrex availability is another  story.  During the peak weeks, I need one, sometimes 2 shots a day.  FDA guidelines only allow prescriptions of 8/30 days.  If not for folks like Stratosdadri, another migraine sufferer, I would have been lost.  We now know to stockpile on the months that you are cluster free so the meds are around when you need them.

**I was given many different drug cocktails during the years.  Many other sufferers went through the same thing.  The oxygen/Imitrex combo gets it done for 90% of the Episodic sufferers.  I would ask the Dr if you could START there first instead of working your way to that like many of us did.  I've had everything from Prednisone(steroid) tapers to a topomax (DOPEomax) routine.  I drove straight thru a stop sign in a UPS truck on Topomax, I will never touch anything like that again.

OXYGEN and IMITREX

Warning- If you are not chronic, do not read up on chronic.  It doesn't apply and is highly aimed more at suicide prevention than finding an answer.

FYI- I am not working today because my cycle "peaked" last night.  I was hit 6 times in one night, a sure sign (for me) that I will now quickly taper to being back to normal.  My cycles have a few different patterns.  Tracking your hits in a diary is a huge help to you and your neurologist (if you get the right one, he will look at your diary like it is gold, a bad one won't even glance at it)  again, on that site, they teach you all about tracking and patterns.  There are pain scales to use (KIP scale) and everything.

Alcohol is my biggest trigger.  None worse than red wine

[SPEEDBEAD.]

My fiance just started taking the pill form of Imitrex and, like you, says it is an absolute saviour.

She gets migrains pretty bad, but not with the consistency and intensity that you guys mention. She is a tough one, so when she gets hit with one of these, I know she is really hurtin'.

Cart, I hope all is well for you in the future and you find some form of relief for your suffering.

Just thought I would share.

Wayne

[Low_Budget_Hooker]

Wayne- Just something for her to consider.

Pill- 100mg  20-45 minutes to work

Nasal inhaler- 20mg- 10-30 minutes to work

stat-pen-4mg or 6mg - takes 5-7 minutes till full relief

With us, every minute is excruciating.  Many forms of female migraine are much longer lasting, but much less "specific" in the concentration of pain. (women get more of a hard tension headache, ours feels like an icepick in your eye).  With that said, time is of the essence with us so I highly suggest the shots.  BUT

When considering that Imitrex isn't good for you, I also feel better with only putting 4mg instead of 100mg into my system.  If she is ok with a minor shot (seriously, about 1/8 the feeling of a tetanus, and delivered easily with the pen, you don't have to push needle in yourself), I HIGHLY suggest them.

[SPEEDBEAD.]

Thanks Russ.

We havent lived together f/t, so I have been semi-removed from actually seeing the effects except for the rare occasion.

Moving in a couple weeks from now, and if there is anything I can do to help her out, I am all for it. I will ask her if she has explored the inhaler or shot options of the medications.

Thanks for the info.

What are the negative effects of the Imitrex, if you know?

Wayne

[Low_Budget_Hooker]

You bet Wayne.  On the site I referred Cart to, there is a section of the forum for "supporters".  Great info there.  Do's and dont's, etc

Imitrex warnings:

Risk of Myocardial Ischemia and/or Infarction and Other Adverse Cardiac Events

Sumatriptan should not be given to patients with documented ischemic or vasospastic coronary artery disease (CAD) (see CONTRAINDICATIONS). It is strongly recommended that sumatriptan not be given to patients in whom unrecognized CAD is predicted by the presence of risk factors (e.g., hypertension, hypercholesterolemia, smoker, obesity, diabetes, strong family history of CAD, female with surgical or physiological menopause, or male over 40 years of age) unless a cardiovascular evaluation provides satisfactory clinical evidence that the patient is reasonably free of coronary artery and ischemic myocardial disease or other significant underlying cardiovascular disease. The sensitivity of cardiac diagnostic procedures to detect cardiovascular disease or predisposition to coronary artery vasospasm is modest, at best. If, during the cardiovascular evaluation, the patient's medical history or electrocardiographic investigations reveal findings indicative of, or consistent with, coronary artery vasospasm or myocardial ischemia, sumatriptan should not be administered (see CONTRAINDICATIONS).

For patients with risk factors predictive of CAD, who are determined to have a satisfactory cardiovascular evaluation, it is strongly recommended that administration of the first dose of sumatriptan tablets take place in the setting of a physician's office or similar medically staffed and equipped facility unless the patient has previously received sumatriptan. Because cardiac ischemia can occur in the absence of clinical symptoms, consideration should be given to obtaining on the first occasion of use an electrocardiogram (ECG) during the interval immediately following Imitrex Tablets, in these patients with risk factors.

It is recommended that patients who are intermittent long-term users of sumatriptan and who have or acquire risk factors predictive of CAD, as described above, undergo periodic interval cardiovascular evaluation as they continue to use sumatriptan.

The systematic approach described above is intended to reduce the likelihood that patients with unrecognized cardiovascular disease will be inadvertently exposed to sumatriptan.

Drug-Associated Cardiac Events and Fatalities

Serious adverse cardiac events, including acute myocardial infarction, life-threatening disturbances of cardiac rhythm, and death have been reported within a few hours following the administration of Imitrex® (sumatriptan succinate) Injection or Imitrex Tablets. Considering the extent of use of sumatriptan in patients with migraine, the incidence of these events is extremely low.

The fact that sumatriptan can cause coronary vasospasm, that some of these events have occurred in patients with no prior cardiac disease history and with documented absence of CAD, and the close proximity of the events to sumatriptan use support the conclusion that some of these cases were caused by the drug. In many cases, however, where there has been known underlying coronary artery disease, the relationship is uncertain.

[Low_Budget_Hooker]

More good info below.  This is something the Dr didn't prep me for.  The first time you take a shot, you feel a heat in your circulatory system.  It shoots down your legs to the pads of your feet, then up through your torso into your CHEST, neck and finally head.  It's a weird sensation of heat.  well, when I first took it, I said to my friend Michelle, "keep an eye on me" because I didn't know it was going to be so physical.  I wasn't warned and it kind of scared me.  NOW, however, that I know the routine, that same heat feeling that scared me is SUCH a welcome feeling.  The heat is now automatically associated with relief and I look forward to feeling it.  A lot of the stuff you read sounds scary but I cannot toot the horn of this drug enough.  Of the side effects below, most mainly just feel a tightening in the chest, and the heat.  The chest thing eases in minutes and really isn't drastic at all, just noticeable.  

Sumatriptan side effects

Get emergency medical help if you have any of these signs of an allergic reaction: hives; difficulty breathing; swelling of your face, lips, tongue, or throat. Stop using sumatriptan and call your doctor at once if you have any of these serious side effects:

   *

     chest pain or heavy feeling, pain spreading to the arm or shoulder, nausea, sweating, general ill feeling;

   *

     sudden numbness or weakness, especially on one side of the body;

   *

     sudden headache, confusion, problems with vision, speech, or balance;

   *

     fast heart rate, agitation, muscle stiffness, hallucinations, lack of coordination, with nausea, vomiting, or diarrhea;

   *

     sudden and severe stomach pain and bloody diarrhea;

   *

     seizure (convulsions); or

   *

     numbness or tingling and a pale or blue-colored appearance in your fingers or toes.

Continue using sumatriptan and talk with your doctor if you have any of these less serious side effects:

   *

     nausea, vomiting, diarrhea;

   *

     muscle pain;

   *

     warmth or redness under your skin;

   *

     pressure or heavy feeling in any part of your body;

   *

     sneezing, runny nose, congestion, cough;

   *

     burning, numbness, pain or other irritation in your nose or throat after using the nasal spray;

   *

     unusual taste in your mouth after using the nasal spray;

   *

     dizziness, sleepiness; or

   *

     drooling or sweating.

Whatever of these things she feels with the pill, it will be the same with the shot.  In other words, if the pill didn't make her nauseous, the shot won't either.  Again, for most, it's a tight chest, food tastes funny and the heat.  But it's only for about 10 minutes.  You are much busier noticing the relief

[SPEEDBEAD.]

See, there have been a couple times recently (two isolated incidents) where she has felt dizzy all of a sudden.

I am not sure if she had just taken the med or not.  She takes the stuff w/o any liquid and is really quick at it, so I never know when she pops one  LOL

She has felt the "heat" before, I do know that. I am not sure of the other symptoms, but I will ask her.

Is there any high blood pressure associated with the med?  I am pretty sure she has another med prescibed to counteract HBP as a side effect maybe?

Wayne

[Low_Budget_Hooker]

See, there have been a couple times recently (two isolated incidents) where she has felt dizzy all of a sudden.

I am not sure if she had just taken the med or not.  She takes the stuff w/o any liquid and is really quick at it, so I never know when she pops one  LOL

She has felt the "heat" before, I do know that. I am not sure of the other symptoms, but I will ask her.

Is there any high blood pressure associated with the med?  I am pretty sure she has another med prescibed to counteract HBP as a side effect maybe?

Wayne

Well, again, I am highly self educated on the subject of ECH (episodic cluster headache)  This is a very specific ailment with very definable traits.

Womens migraine is totally different and can be caused by many different factors from hormones to environment to menopause to water imbalances to plain old stress.  I Do know about Imitrex though.  If she is on any other meds, especially a blodd pressure med, this HAS to be communicated with your neurologist before EVER taking Trex.  IMO.

Contraindications

Imitrex Tablets should not be given to patients with history, symptoms, or signs of ischemic cardiac, cerebrovascular, or peripheral vascular syndromes. In addition, patients with other significant underlying cardiovascular diseases should not receive Imitrex Tablets. Ischemic cardiac syndromes include, but are not limited to, angina pectoris of any type (e.g., stable angina of effort and vasospastic forms of angina such as the Prinzmetal variant), all forms of myocardial infarction, and silent myocardial ischemia. Cerebrovascular syndromes include, but are not limited to, strokes of any type as well as transient ischemic attacks. Peripheral vascular disease includes, but is not limited to, ischemic bowel disease (see WARNINGS).

Because Imitrex Tablets may increase blood pressure, they should not be given to patients with uncontrolled hypertension.

Concurrent administration of MAO-A inhibitors or use within 2 weeks of discontinuation of MAO-A inhibitor therapy is contraindicated (see CLINICAL PHARMACOLOGY: Drug Interactions and PRECAUTIONS: Drug Interactions).

Imitrex Tablets should not be administered to patients with hemiplegic or basilar migraine.

Imitrex Tablets and any ergotamine-containing or ergot-type medication (like dihydroergotamine or methysergide) should not be used within 24 hours of each other, nor should Imitrex and another 5-HT1 agonist.

Imitrex Tablets are contraindicated in patients with hypersensitivity to sumatriptan or any of their components.

Imitrex Tablets are contraindicated in patients with severe hepatic impairment.

[SPEEDBEAD.]

See, I believe she was given the HBP meds after the Imitrex due to her having the side effects.

She is not currently on the HBP meds to control it in and of itself.

I appreciate all the info, that is a good read and should be valuable for her to see and use as a self assessment.

Wayne

Also, sorry about the back and forth Cart.  Hopefully some of that info will be pertinent to your case as well.

[Low_Budget_Hooker]

Yea, it's all good discussion.  If 1 reader who needs this info finds this, it's worth it.  I'm very happy for Cart, today things change for him in a big way.

[slomoe]

This is a very interesting topic. I've grown up taking bottles and bottles of advil. I don't get severe headaches like you are describing Russ (well sometimes), But I do get them very often. I accually woke up this morning with one.

I wanted to ask about Horner's syndrom. My left eyelid dropped noticably about 4 or 5 years ago :-[. In the Cluster headache comunity, is this perminate or only until symptoms subside?

edited to add:

I usually cannot drink alcohol, even a beer, without getting a headache. Usually liquor being lightest to wine being WORST.

[cart7t]

I guess I should feel fortunate that my episodes have normally been several years apart.  This isn't great but I've learned to work with the pain.  I got one of those neck/back massagers, they look like a little alien with 3 rubber vibrating feet and I put that on the areas during the attack.  Tends to help.  I also found pacing around outside last night in the cool air helped some.  I'm still trying to get through to the doctor as I type.

[Low_Budget_Hooker]

This is a very interesting topic. I've grown up taking bottles and bottles of advil. I don't get severe headaches like you are describing Russ (well sometimes), But I do get them very often. I accually woke up this morning with one.

I wanted to ask about Horner's syndrom. My left eyelid dropped noticably about 4 or 5 years ago  :-[. In the Cluster headache comunity, is this perminate or only until symptoms subside?

edited to add:

I usually cannot drink alcohol, even a beer, without getting a headache. Usually liquor being lightest to wine being WORST.

No, it eases as the hit passes.  within an hour, you'd never know.  Also, this does not happen with all of us  but is common for many.  I do not get it (my hits are in right eye)but the right nostril clogs solid and the right eye tears alot.  It is weird, the other nostril remains wide open and the other eye does not tear but the eyelid does not droop with me.

[Low_Budget_Hooker]

I guess I should feel fortunate that my episodes have normally been several years apart.  This isn't great but I've learned to work with the pain.  I got one of those neck/back massagers, they look like a little alien with 3 rubber vibrating feet and I put that on the areas during the attack.  Tends to help.  I also found pacing around outside last night in the cool air helped some.  I'm still trying to get through to the doctor as I type.

Yes, one of the things I learned on the other board is that many of us "learned to deal with it" over the years.  Many sufferers have incredible pain tolerance levels because of this (documented).  You'll see on the board that many of us found the same remedies or aids as we learned to cope.  Fresh cool air is one of them.  It just helps.  I think this is in part to the elevated body temp associated with a hit.  when it first rolls in at full force, you get very hot and want to take a shirt off, then that subsides.

A bag of frozen peas on the back of the neck offers a little relief also.  

BUT

OXYGEN & IMITREX are the new replacements for many of these "aids".  Once you are set up with this stuff, you don't need the aids.

[Low_Budget_Hooker]

Slomoe- You need to get with a good neurologist.  You do show many signs of cluster but it may be something that just looks like cluster.  The eyelid thing is also common with other neurological implecations, you should definitely get some professional input.

Also, go to the cluster site, there is a quiz you can take to see if you MAY be a cluster sufferer.  There are lots of resources there that you can use to do on yourself and bring results with you to neurologist.  Tests, diaries, etc. These give the Dr.'s a big head start.

[slomoe]

Thanks big time. After your previous post I was just thinking I need to get to a neurologist (as well as a few other specialist). I really take pretty poor care of myself in terms of keeping myself up to date with my health. I know that because I'm still pretty young that I neglect some of these things. But I know If I don't get them checked out, Im gonna pay for it in the long run.

Cart I hope all goes well at the doctors and Im sure you will be feeling much better soon. Thank god we have such a great group of people here at BR to look out for each other.

[Tin]

LBH is the expert on this stuff, he helped me out a lot with my migraines. One thing I learned about the oxygen when I had it, is you you know you have one coming 9 and a half out of ten times it will knock it out and you wont go into a migraine. Even if you have a slight aggravating headache, the oxygen will take care of it. As long as you dont hesitiate to take it, you'll be good.

I drove straight thru a stop sign in a UPS truck on Topomax, I will never touch anything like that again. -LBH

I left an f-450 in drive and reverse a couple times, and one time when I was on the boat ramp I left the truck in reverse and hopped right out. That stuff just seems dangerous. My doctor told me straight out, that I might get confused or forget some things, I just kind of passed it off and was like, ya ok. But when I started forgeting important things like that I went back and told him to take me off of it. Scary stuff.

[cart7t]

Back from the doc.  I'm on Prednisone.  We talked it over.  I'm probably around 1/2 through this cluster event.  Most of my attacks are happening at night, I'm up too late for O2.  By the time I could get any pain reliever into me the worst of it has already passed.  I'm sorta learning to deal with the pain as I'm going along.  Hopefully this stuff will end the problem, I've got enough for a month.  

Thanks LBH for all the info. I'm going to explore on this some more in the future. I've probably been suffering through these cluster events on and off for around 20 years.  I'm guessing the average time between events is 2 - 3 years.  I never knew what it was. Always thought it was sinus related.  Even had a CT scan and sinus cavity exploration (ouch!) about 4 or 5 years ago.  

and...... gotta give kudo's to the wife.  she's been harping on me the last 2 times I've had these that they were probably cluster headaches...... she was right again....  :

[Low_Budget_Hooker]

Ugh.  The Prednisone approach is classic for a Dr. not familiar with handling cluster.  It's the first recommendation in the old journals and many still start there.  Hopefully you'll give the oxygen a try.  It is free and totally good for you.  If you were my brother, I would insist  that you demand him to prescribe it to you, just so you can see.  I am able to stop approximately 80% of the night hits with it.  It's simple.  Wake up, notice that it is a shadow that woke you up, walk to the closet, turn on Oxy and breath for 5 minutes,....go to  bed.  All Better.

Not to mention, it's free.  100%, zero, zippo  

As for my occurance rate, I have had yrs with 2 or 3 clusters and have also gone up to 3 yrs without one.  My clusters can also range from 3 weeks to 20 weeks.

[cart7t]

Well, first night in around 2 1/2 weeks that I slept without an attack.

Fingers crossed.