Hi everyone.  Glad to find this board!  Although I have to say, wish we didn't have these darn things in common!!!

For a long time I've been under the impression I had trigeminal neuralgia.  My rheumatologist suggested it, my GP agreed.  I have some other neuro issues going on, so off to the neuro I went.  He said it's just a headache, take some advil.  yeah, because we all know that helps!!!!  On to a new neurologist (mainly because first neuro said I had MS, then said I didn't and dismissed me, need to get to the bottom of this and find out if I do or do not have MS).

Just saw new neuro the other day.  He said it sounds like a cluster headache to him.  Told me to go home and look it up and see if I agree, but he was pretty certain that I was "one of the rare women that get cluster headaches" (his words).  And he put me on Topamax.  My GP had been giving me Vicodin since the lyrica didn't work on them at all and made me almost suicidal.  So I had been self medicating my pain with 800mg of ibuprofen and 500-1000 mg of vicodin as needed.  With lots of shadowing that I was just dealing with (and had no idea it was shadowing until reading here! first neuro said atypical facial pain which I've come to understand means he thought I was crazy)

So, here I am.  Starting the topamax.  Trying to ween off the vicodin.  Which, didn't really take care of it, but between the motrin and vicodin it made it tolerable at least. 

One question I have.  I know that these things seem to differ a little for everyone, but I haven't seen anyone mention this yet, although I haven't read everything here yet.  One thing that really gets me, is that when they are bad, I feel like someone has rolled my eye in vicks and shoved vicks up my nose and then sent me out into a blizzard and then of course starts using an ice pick on my face.  But, the sensation of that super horrible menthol-like cold, is just awful.  I haven't found anything that helps.  I just end up using my hand to shut my nostril and keep my eye shut.  Does anyone else have this?  Anything to help?

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.

                       CLUSTER HEADACHE HELP AND SUPPORT › GETTING TO KNOW YA › NEWBIES, HELP US...HELP YOU
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SECOND, Start to learn about Cluster AND get a good diasgnosis before you start a rush to treatment. This is a complex disorder and self-treatment is not wise.
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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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THIRD, if available to you, seek a headache specialist--not a geral neurologist.

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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FOURTH,  stop pain meds. They don't work, assuming you have Cluster, and too much can create yet new problems.
FIFTH, print out the PDF file, below. These are the most commonly used meds for Cluster. Any doc who is treating you for Cluster should be working from this list.

Once you have a firm diagnosis, assuming Cluster, you'll get a med which can stop attacks within hours; followed by another med which works to reduce/prevent additional attacks which you'll take for the long haul. Pain meds are not part of this package.
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Don't be suprised if your symptoms  change over time--common with new Cluster cases--but stability will emerge in weeks/months. The great survival skill for the next weeks is patience combined with a doc who knows his stuff about headches. (Too many people waste time  with the large % of docs who receive meager education in this complex area of medicine, hence, using a specialist, if at all possible.)

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Hey Wendy,

Welcome to CH.com.  You've come to the right place.  Lots of information here and a source of thousands of years experience living with this disorder.  All you need to do is ask...

When you go back to the neuro who said go home and look up cluster headache... Tell him you did... then ask for a prescription for oxygen therapy as an abortive for your cluster headaches...  Ask for the Rx to be written as "Oxygen therapy at a flow rate of 15 to 25 liters/minute with a non-rebreathing oxygen mask for cluster headaches."

You can also pass him the following link to the Standards of Care recommended treatments for cluster headache. 

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

As you'll see in the following chart from this link, topiramate (Topamax) is 5th on the pick list and only rates a "B" in efficacy as a preventative...

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

While you're at it, ask for the lab test for 25(OH)D.  This is the serum level metabolite of vitamin D3 that's used to measure it's status.  The normal reference range for 25(OH)D is 30 to 100 ng/mL.

Unfortunately too many physicians will interpret 31 ng/mL as "normal."  While that may be true and a high enough serum concentration to prevent rickets and osteomalacia, it won't do anything for cluster headache.

Data collected from here at CH.com indicate 240 out of 300 cluster headache sufferers (CH'ers) experienced a significant reduction in the frequency, severity and duration of their cluster headaches after starting the anti-inflammatory regimen with 10,000 IU/day vitamin D3. 

Many of these CH'ers experienced a pain free response.  Some of these CH'ers also had the 25(OH)D lab test after a favorable response to this regimen and posted their results.  The responses occurred at a 25(OH)D serum concentration between 60 ng/mL and 110 ng/mL.

The online survey of anti-inflammatory regimen users indicated the average 25(OH)D serum concentration before starting this regimen was 28.7 ng/mL, (71.75 nmol/L).

Bottom line...  You are likely vitamin D3 deficient and that deficiency is contributing to your cluster headaches.

If you're interested in the anti-inflammatory regimen you can find the needed information at the following link:

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

The vicks in the eye and nasal blizzard sensations are likely related to a symptom called cutaneous allodynia...  (A pain due to a stimulus which does not normally provoke pain. Temperature or physical stimuli can provoke allodynia).  It's one of the lesser known and experienced symptoms of the cluster headache syndrome...

Take care and please keep us posted.

V/R, Batch

Go back to your doc and tell him he should have started you on prednisone first, with some verapamil, then ONLY if those don't work should he put you on Dopeymax.  I can tell you from experience that Topomax takes too long to work (prednisone can stop them within 48 hours), that it's really bad for a non-epilepsy brain, and that it should not be the first treatment.  Batch (the admin here) has posted several articles that should help, but if not, tell your doc that the protocol does not start with Topomax.  Here's a link to one of my favorite articles, but it's not by far the only one:  START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

And best of luck to you!  Beat this monster! :)

Cynde wrote on May 6^th, 2013 at 2:10pm:

Go back to your doc and tell him he should have started you on prednisone first, with some verapamil, then ONLY if those don't work should he put you on Dopeymax.  I can tell you from experience that Topomax takes too long to work (prednisone can stop them within 48 hours), that it's really bad for a non-epilepsy brain, and that it should not be the first treatment.  Batch (the admin here) has posted several articles that should help, but if not, tell your doc that the protocol does not start with Topomax.  Here's a link to one of my favorite articles, but it's not by far the only one:  START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE And best of luck to you!  Beat this monster! :)

Batch is not an admin here.

He's a very smart guy who cares about helping others toward a pain-free life.

Welcome to the board Wendy, spend a little time here and you'll realize quickly that women are NOT much of a minority around here. For way too long, woman=migraine. As a result, many women spent even longer then the men did trying to get an accurate diagnosis when it WAS CH! You've been given some great advice already. As Bob mentions, if it is CH, it's a lifetime ailment, so the earlier you get a thorough workup and accurate diagnosis, the better.

PAY REAL CLOSE ATTENTION TO BATCH'S POST!!!

His posts are long and technical, read them anyways! ;D I'm coming up on my 3rd year pain free, after well over 30 years of episodic CH. The only thing I changed was starting Batch's D-3 regimen. I went pain free and have stayed on it religiously.

Glad you found us, hope we can help you.

Joe

Haven't been here in a while.  Honestly I was a little off put by the initial responses!  Not really willing to share my location other than the US. 

Trying to deal with this awful pain, along with other neurological problems, and then coming here and getting a bit overwhelmed, was well... overwhelming!

But, I will say, the topomax was pure hell and I'm never taking it again.  Stopped after a week and am back to just using my NSAID and vicodin.  Not much help, but living through it.  Waiting to go back to neuro in a few weeks.  I will take the list of meds with me.  If any preventative will make me feel like a zombie then I will stick with treating them as they come thank you very much.  I guess that is why I've stuck with what I'm doing.  I hated how I felt on lyrica, which didn't help much anyway, and now hated how I felt on topamax. 

D3 is normal.  Was a touch low last year, but I'm on supplements and I'm back in a good range, well above normal, and continue to take my supplement daily.  (2000 units in the am, plus 400 u in with my 400 mg of calcium, and a small amount in my daily multi vitamin as well.)

Really, the cluster headaches have been on the back burner if you can believe it, because I'm more worried about if I am going to lose the ability to walk or not.  (turns out I probably don't have MS, yay! but still have no idea what is wrong with me. boo!)

Thank you for all the help and articles.  I will start pouring over them and be ready when I go to my follow up.  I believe he is a headache specialist.  He was going to put me on a blood pressure med, but I tend to run low on a regular basis and we didn't want to run into any problems with that.  Although I'm not sure why he went right to topamax since I have a history of kidney stones (12 at a time!) so hopefully we can find something else that works better with less side effects.

Hi Wendy,
The reasan you get asked where in the US you live is so you
can get a list of headache specialist's in your area. They are
only trying to help you get the best outcome. 

The blood pressure med was probably verapamil, the number one prevent of choice. Worth a quick read.

A widely used protocol. Your doc will recognize the source and author:

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


Joe