Hi everyone,
My name is Norma and my 21 year old son, Nick woke me up in the middle of the night about two weeks ago crying with terrible head pain. Nothing we gave him helped. (including strong pain pills my husband for his back) So after a few hours of this we were terrified and left for the ER. After many different meds at the ER he finally got relief with some Torodol they did a cat scan and we were told migraines and sent home with furaset (not sure about spelling). Well, he ate about 20 of those in the next few days then the beast was back with a vengeance! It was so bad he was pacing and screaming banging his head in the wall, crying! I called the ambulance and they thought he was detoxing from drugs! So trip #2 to the ER he was admitted to hospital had another cat scan, spinal tap, MRA and after a five day stay in the hospital of pure hell and so many different meds, dilaudid,torodol,imitex, benadryl they finally diagnosed him with clusters and sent home with the shots and a preventive. Well, all I can say is that they gave us no real info on what a CH is or what to expect or even the o2. Thank god I found this place. Our primary doctor suggested the o2 and in process of getting that. So thats where we are on the journey with this horrible beast!

Hello and welcome, I would try to find a neurlogist as I'm only 17 and get chronic cluster headaches. Finding a neurologist was the greatest thing I've done.

Are you working with a headache specialist neuro 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 over 35years, 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. But first and MOST IMPORTANTLY

Follow this link to the medications section of this board and read the post 

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It’s a vitamin/mineral/fish oil supplement, all over the counter stuff. It’s up to an 81% success rate of those who try it and respond to the survey so you’re just shooting yourself in the foot if you don’t give it a shot. I’m 3 years pain free on it after a 35 plus year track record with episodic CH. Best of all, it’s healthy for you even without CH!

As of January 20, 2013, the compiled raw data indicates an efficacy of 80%. 240 out of the 300 CH'ers who have started this regimen and stayed on it for a month or more have experienced a significant reduction in the frequency and severity of their CH... 78% of the 300 CH'ers experienced a pain free response and 60% of the 300 have remained essentially pain free. Episodic and chronic CH'ers respond to this regimen at roughly the same rate.

Preliminary survey results indicate most of these CH'ers were pain free before the end of the third week with some responding in a little as 12 to 24 hours. The average time to respond is five days

So all that follows will be worthless I hope……….but still…

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.

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 your son is CH’er, knowledge is your best ally. We’ll help you all we can.

Joe

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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Second, since you do not yet have a solid Dx from a headache specialist, DO NOT assume that Cluster is the problem. DO NOT start using he various meds/treatments which you will have suggested to you here.

Find a speialist and work with him and his treatment plan to give his efforts a fair chance, uncomplicated by competiting approaches.
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LOCATING HEADACHE SPECIALIST

1. Yellow Pages phone book: look for "Headache Clinics" in the M.D. section and look under "neurologist" where some docs will list speciality areas of practice.

2.  Call your hospital/medical center. They often have an office to assist in finding a physician. You may have to ask for the social worker/patient advocate.

3. START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE On-line screen to find a physician.

4. START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE Look for "Physician Finder" search box. They will send a list of M.D.s for your state.I suggest using this source for several reasons: first, we have read several messages from people who, even seeing neurologists, are unhappy with the quality of care and ATTITUDES they have encountered; second, the clinical director of the Jefferson (Philadelphia) Headache Clinic said, in late 1999, that upwards of 40%+ of U.S. doctors have poor training in treating headache and/or hold attitudes about headache ("hysterical female disorder") which block them from sympathetic and effective work with the patient; third, it's necessary to find a doctor who has experience, skill, and a set of attitudes which give hope of success. This is the best method I know of to find such a physician.

5. START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE NEW certification program for "Headache Medicine" by the United Council for Neurologic Subspecialties, an independent, non-profit, professional medical organization.
        Since this is a new program, the initial listing is limited and so it should be checked each time you have an interest in locating a headache doctor.
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Third, you asked for some basic info.


Cluster headache.
From: START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE (Orphanet Journal of Rare Diseases)
[Easy to read; one of the better overview articles I've seen. Suggest printing the full length article--link, line above--if you are serious about keeping a good medical library on the subject.]

Leroux E, Ducros A.

ABSTRACT: Cluster headache (CH) is a primary headache disease characterized by recurrent short-lasting attacks (15 to 180 minutes) of excruciating unilateral periorbital pain accompanied by ipsilateral autonomic signs (lacrimation, nasal congestion, ptosis, miosis, lid edema, redness of the eye). It affects young adults, predominantly males. Prevalence is estimated at 0.5-1.0/1,000. CH has a circannual and circadian periodicity, attacks being clustered (hence the name) in bouts that can occur during specific months of the year. ALCOHOL IS THE ONLY DIETARY TRIGGER OF CH, STRONG ODORS (MAINLY SOLVENTS AND CIGARETTE SMOKE) AND NAPPING MAY ALSO TRIGGER CH ATTACKS. During bouts, attacks may happen at precise hours, especially during the night. During the attacks, patients tend to be restless. CH may be episodic or chronic, depending on the presence of remission periods. CH IS ASSOCIATED WITH TRIGEMINOVASCULAR ACTIVATION AND NEUROENDOCRINE AND VEGETATIVE DISTURBANCES, HOWEVER, THE PRECISE CAUSATIVE MECHANISMS REMAIN UNKNOWN. Involvement of the hypothalamus (a structure regulating endocrine function and sleep-wake rhythms) has been confirmed, explaining, at least in part, the cyclic aspects of CH. The disease is familial in about 10% of cases. Genetic factors play a role in CH susceptibility, and a causative role has been suggested for the hypocretin receptor gene. Diagnosis is clinical. Differential diagnoses include other primary headache diseases such as migraine, paroxysmal hemicrania and SUNCT syndrome. At present, there is no curative treatment. There are efficient treatments to shorten the painful attacks (acute treatments) and to reduce the number of daily attacks (prophylactic treatments). Acute treatment is based on subcutaneous administration of sumatriptan and high-flow oxygen. Verapamil, lithium, methysergide, prednisone, greater occipital nerve blocks and topiramate may be used for prophylaxis. In refractory cases, deep-brain stimulation of the hypothalamus and greater occipital nerve stimulators have been tried in experimental settings.THE DISEASE COURSE OVER A LIFETIME IS UNPREDICTABLE. Some patients have only one period of attacks, while in others the disease evolves from episodic to chronic form.

PMID: 18651939 [PubMed]
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Three sites which are worth your attention: medical literature, films, plus the expected information
about CH.

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE
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START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE Search under "cluster headache"
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START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE
  Full of articles, blogs, book: written by one of the best headache docs in the Chicago area.
  Worth exploring. The latest book is in e-book edition, $10; comprehensive and worth buying for
  a careful read.
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ASSUMING, the specialist coinfirms Cluster as the problem, print out the PDF file, below. It's a good tool to use in discussing options with the doc.

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Hello Norma

  So very glad you found this site, and so sorry your son had to suffer so much to come to a diagnosis.   

  Make sure you start a journal, stating the intensity,(use the Kip scale . . .link on left) and duration, and what you did to abort.  When next you see his doc, sh now him the journal and give him a copy of the Kip scale for reference . . .  and I think your primary doc might be willing to accept (medicaly regognized) material which is available on this site.  I say this because of his willingness to prescribe 02.  A doctor willing to listen and accept research is often more helpful than a "specialist"

  I will try and explain "What CH is?" as I remember it told to me when I got here (2/02)

    Get a schematic of the head (muscles/arteries,vessels,nerves)  (there's one on here somewhere . . maybe somebody will post same)

    It's believed that the hypothalmus (for whatever reason) sends an incorrect signal which dilates the blood vessels on one side of our head.  If you look at that schematic, find the tri-geminal nerve.  If you trace the nerve, you can also trace the pain.  Therre are blood vessels running beside the tri-geminal nerve, so  . . . when the blood vessels dilate they put pressure on the tri nerve and produce the pain . . eye,upper/lower sinus, teeth, neck. 

  Ok . . . now you understand why our abortives are all vaso-constrictors.  It's  very important to get the correct 02 set-up for maximum effect.  Also have him try rubbing an icepack/gelpak all over his face/eye//neck . . . keep it moving . . . I found that if I held it in one place too long I would get an additional shot of pain.

  You need to identify his triggers.  For me, alcohol, exhaust fumes, petroleum products (like carb or brake cleaner), perfumes for some people.   

  You've found the motherlode of CH info, sharing, caring and the folks on the board truly KNOW the horrific pain of the beast.

  I'll close with this.  When I got here in 2/02, after 13 months mis-diagnosis, non-working meds, was having 6-8 attacks daily, 3-5 at night, . . pretty much a basket-case, afraid to eat, afraid to sleep, assumming a  potential stroke/aneurism . . . . nothing can hurt that bad, that often, and not kill you . . . . and then my wife found site and I've had some control since then . . . and now I can report 18 months pain-free since going on the D3 regimen.  . . . after ten years chronic and hundreds of tanks of 02 . . he's gone . . . former triggers have no effect.

  CONGRADULATIONS MOM!   You landed in the right place.  Keep reading, keep asking. 

   Be Safe   PFDANs

     Richard

P S -  Ditto to what Joe said above

   

Im a lot over tired and didn't explain the situation very well. He was diagnosed by a neurologist in the hospital with CH. Also reading many post from this site pretty much describes exactly what he has gone through. I feel like our primary MD seems to be more open to trying different options. I felt like the neurologist left us hanging by not even giving paper work on CH or what to expect and different options. I found a recommended headache clinic on the OUCH website that I will be making an appointment with on Monday.

G'day Norma,
Just thought i'd  mention a couple of things that might be of
some help to Nick.

In some CH sufferers, processed foods containing Nitrates
are real triggers, for example, Bacon, Cheese, Pizza, Sausage's,
Salami, ect.

To help Nick get through the night without that wakeup call,
try Melatonin before bedtime. You can buy it OTC at your local
Drug Store.

Hoppy.

Hello, Norma, and thank you for representing your son. He is going to need a lot of support, largely because CHs are so poorly understood. While it is true CHs may cause dilation of the blood vessels, new reports on the effectiveness of drugs like Imitrex indicate it is neuronal and not vascular activity that does the trick. That aside, the good news is you do not have to understand the beast in order to manage it.

Working with the medical community can be very frustrating since they actually know so little about CHs. You will need to become your own "expert" and the advice you receive here on various interventions is golden. It won't all work, but we pray some of it will. Read, and take notes, and discuss these with your doctor. Management is possible even if there is no cure at the present time. And ask any questions, any at all. Good luck and God bless. lance

Thank you everyone, its a comfort knowing you guys are all here. At least I know were not alone and you guys understand what its like to deal with this. I got the melatonin so going give that a try. Hoppy thanks for the food tip because all you mentioned is what he likes to eat. But, I'm sure its not going to be too difficult to have him change his diet because he is willing to try anything to get through this!
I do have a question how do you know when you are out of a cycle? Or is it just different for everyone?

G'day Norma,
Thats a tricky one. I would imagine we are all different, but for
me, my cycle always came in the Spring and Fall, and then at
the end of that season, without thinking, a couple of days would
go by pain free," then i got to know the Beast had gone." Until
he awoke next time round.

Hoppy.

PS, with so much to take in at one time, i was wondering if you
noticed on Richard's thread he mentioned alcohol as a trigger.
In a lot of CH sufferers this is a real no no, especially beer.
Another tip, during an attack is to have a rearly hot shower.
Also ice blocks or frozen Peas from the freezer applied to the
temple and the back of the neck can sometimes abort an attack.
You can also try this one to abort CH inhale deeply through your
nose for 15-20 min's, Joe likes to do this with his head in the
freezer, or if you are out and about use your cars aircon vent.
Hoping these few tips can help Nick lesson the pain and the
duration of the attack.

Norma

  You mentioned Nick was given a preventative.  Which one?  Verapamil is often the first prescribed as it has the fewest side effects and is effective for many.  It's a taper drug and the dosages is tapered up til an effective dose is reached. .  . ususally 240 mg is minimum effective dose.  Do let us know and we can tell you what to expect from anything he's taking.

  When does he get his 02?  Soon I hope.  It's a great feeling the first time you abort a hit at a low level in a few minutes and can avoid the "dance".

  Make sure you order an O2ptimask . . .  much more effective than the 1 litre non-rebreather mask the med supply will furnish . . . and the one litre mast requires a bit of alteration (tape up the exhaust ports . . . just crack the bottom of the mask for exhales) for our use.  We require 100% 02 at high flow rates to be effective.   You will need to keep several tanks on hand, depending on how many attacks he's having.

  At this point, you don't know if he's episodic or chronic.  The episodics vary wildly.   Some have a few weeks a year or 2-3 months every other year, maybe go PF for five years and then come back . . . the beast is fickle.  If the definitions is still the same, chronics never/rarely go more than two weeks witjout an attack/series of attacks. 

  Please let us know when he gets the 02 . .  takes a little practice but we'll help him through it.

   Be Safe,   PFDANs

      Richard

Thanks again Richard and Hoppy I can't say that enough to all of you who are responding and giving me such good advice! I ordered the O2ptimask and printed out the flow instructions for the Dr. should have all for o2 by Monday. I have taken so many notes from this site and all your suggestions to discuss with the Dr. I'm also starting him on the vitamin regimen. Far as meds the preventative is depakote 250 mg daily, immetrex (sp?) shots (as needed) and torodol every six hours but we rarely can make it to six hours before he needs one. He tries to hold off on the shot until he is at his limit because he feels so crappy after. His appetite is just gone and he has terrible stomachaches, is this side effects from the meds? What your opinions on the best preventive?

Hoppy, about the alcohol is that during a cycle or no alcohol ever? He's only an occasional drinker but just want to be clear if its ok when he's not in a cycle. Sorry if I missed it somewhere. I'm really on the verge of overload Im physically tired and mentally exhausted! When he is pacing, screaming and crying my heart just breaks and my stomach is just in knots!

  I can't comment on the prevents you mentioned, but others will be along who have experience with them and their side-effects.  I used Verapamil to good effect for a couple of years.

  Once they've mastered aborting with 02, most save the trex for situations where having an 02 tank immediately available is not  possible, plus you're not supposed to use more than two (shots) a day and insurance companies frequently limit this very expensive drug.  See the "imitrex tip" . . . link on left . . . which can allow him to abort more attacks with the same script.

  I couldn't use Imitrex as I have some artery blockage and cholesterol issues which prohibit me from using this major vaso-constrictor.

  Make sure you advise your doc he's starting the D3 regimen.  I have no idea if the prevents mentioned would affect positively/negatively the effects of the regimen or the effects of the prevents. . . . there will be someone along with more info I'm sure.

"Best preventative" . . . for me I have to say the D3 regimen, as I'm now painfree for 1 1/2 years after ten years of dealing with the beast.

    Be Safe,   PFDANs

      Richard

Hi Norma,
I'ts during a cycle to avoid alcohol, for me even one sip of beer
would trigger an attack, then between Spring and Fall i could
have  [smiley=beer.gif] with no CH attacks.

Hoppy.

Norma - Here is what worked for me. 

I am new to the Beast as well - We had our first date the Saturday night before memorial day this year.  I paid for it ! Doh!

Go to his PCP - Ask for Verapamil.  Its the most recommended preventive out there.  Also ask for a Predisone taper (80mg over 12-14 days).  The Predisone gave me immediate relief for about 4-5 days which saved my life and my job!  This will allow the Verapamil to build up - they will most likely start him at 80mg and taper up every 3-4 days until he gets to 240mg.  From there give it a few weeks and see how he does.  He may need a ECG and to check his BP regularly to make sure it doesn't get to low, but its better then the headaches IMO.  Also look at Melatonin at night - I take 15mg but he should start 5-10 to see how it affects him.  Helps avoid the late night wake up calls.  The D3 will help too, just give it time.  Make sure you space out the Calcium and the Verapamil dosing by 8-12 hours as they can interact or cause issues.  During the day, see if he likes energy drinks like Rockstar, Redbull or Monster (anything with caffeine or taurine in it)- When he feels the pressure or the pain coming chug back half of one, then sip the rest of it casual.  I like mine cold as the cold seems to help the pain.  Sometimes this will head off the attack or at least make the shadows fade.

I'm not a Doc but a fellow sufferer sharing his experience.

Best of luck to you both and keep us posted on the progress.

So you are being swamped with what to try, and while all of it is really good advice, your doctor will have his own ideas. Depakote is/was a standard preventative but I'm not sure why. It didn't do me any good, and I don't remember hearing from this community that it did them any good either. Still, I had to go through it to get to the stage of high dose verapamil. Sounds like you have more freedom to explore the abortives mentioned, so do that, and keep your doc informed about the progress or its lack. Two weeks should be enough of a trial before you start banging on doc's door. God bless. lance

  Good advice Lance

  Norma . . . were you successful getting the 02 script from the doc?  Do you think he's going to accept any of the material available here?

  Let us know .  .  . there ARE other ways to get 02 available to Nick.

   Be Safe,   PFDANs

     Richard

Norma,

Not much to add here except this: your son needs also be looking on this site and learning about this. You won't be able to take care of him forever, and ultimately this pain is his and his alone. I understand how difficult it is to try and research while dealing with cluster, but he's going to need to get educated ASAP in case his case defies the usual treatment plans. Just my thoughts.