I am glad I found this web site.  I have already learned some valuable information here.

I was diagnosed with CH by my primary physician back in November, near the end of my first episode, which lasted 3 weeks.  He first ran some blood tests to rule out other causes.

I am currently about 3 weeks into my second episode, and have seem my physician again during this one.  He says I have the most classic set of CH symptoms he has seen.  Fortunately, I don't have any other medical issues that concern him other than the need to lose about 10lbs.  I was 60 years old last year when the first episode hit, and am 61 now.

There was no medical trauma that triggered it.  No one in my family has had CH.

The only thing that seems to work for me is one Aleve, which seems to shorten each attack.  Imitrex did nothing for me.  My doctor said we could try a beta-blocker to try to prevent episodes, but I want to hold off on that for a while.

I have not yet tried any alternative treatments.

I am a retired electrical engineer with a hobby automotive electronics on-line business.  I find I can't focus on my engineering work (or anything else) when I am having an attack.  I am slower than normal at other times, I suspect because of the interrupted sleep every night.

My attacks seem to mainly happen in the evening or at night, 2-3 times per day.  I can get shadows any time of the day.  I find that caffeine gets rid of the shadows, but I can only drink it in the mornings or I can't sleep at night.  Another reason to love coffee.  :)

I found this site while searching to see if it is ok to give blood while having an episode.  I am scheduled at the Red Cross this coming Wednesday.  It looks like it is ok, and may even help.

It is good to know that I am not alone.  I also appreciate all of the great information on the site.

Thanks.

Hi Mark and welcome

I suggest you get your diagnosis confirmed by a headache specialist as CH is a pretty complex area of medicine and from experience we find that primary physicians, even most neurologists do not have the skills and experience to diagnose and treat CH correctly.

From what you've said there are a few hints around this. Normally to diagnose CH there are multiple tests done which rule out other potential causes of CH symptoms of which there are many, both other headache types but also some accute non-headache related causes. It is standard that these tests include either an MRI of the head and / or a CT scan. So it is unusual that these were not done. Note that this does not rule out CH, it just does not confirm it.

It is also unusual that Aleve (Naproxen) helps. Aleve is an NSAID (Non-Steroidal Anti Inflamatory Drug) which works well for mild pain relief, however it is typical of CH that even the strongest pain killers, like morphine, do not touch the pain of a CH. But when CH is just starting it isn't unusual for the pain to be milder and to then develop over weeks, months or years.

You mentioned Imitrex not helping. If you used the tablet form then this isn't too surprising as it is just not that effective with CH, however the nasal spray and the injection version are pretty good.

Beta blockers can work as a CH preventive, however they are not one of the main preventives used as there are others that are much more effective, like verapamil and lithium. However they are pretty good as a migraine preventive (I use them myself for this purpose). This suggests that your doctor is using migraine knowledge or medication and not CH knowledge. However it is possible that there are reasons in your medical history to not use them.

It is also uncommon for CH to start after the age of 51 (START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE


Quote:

Demographics.—Age of Onset of Cluster Headache.— Cluster headache began at age 20 years or younger in 35%, ages 21-30 years in 36%, 31-40 years in 16%, and ages 41-50 years in 10%. In only 3% did cluster headache start after the age of 51 years.

All of this makes me uncertain about your diagnosis and hence the suggestion to see a headache specialist.

I'd be hesitant to give blood whilst you appear to be in an active CH cycle as doing so may result in a CH being triggered since it is a common trigger for CH when air pressure drops which is in some ways a similar situation (around dropping the amount of oxygen carried in the blood, one drops the oxygen that is available, the other drops the oxygen carrying capacity).

Keep reading and you'll learn a lot about CH here. Ask all the questions you can think of too.

hi mark, and welcome to the site.
           lots of other cluster head sufferers here, and I can vouch for the advice and direction that is here to be had.
and that was great advice that mike just gave to you.
goodluck

colin

Your doc looks sharp, on track, from the few comments you made.

Because your "clusters" are developing at age 60--a rather late age for onset, I'd encourage you to print out the PDF file, material below, and give it to him.

(The number of "cluster-LIKE" disorders which are being identified is growing to such a degree that I've stopped adding them to this material, i.e., evern the most skilled doc may not be fully up to date.)
===
Cephalalgia. 2010 Apr;30(4):399-412. Epub 2010 Feb 15.

Cluster-like headache. A comprehensive reappraisal.
Mainardi F, Trucco M, Maggioni F, Palestini C, Dainese F, Zanchin G.

Headache Centre, Neurological Division, SS. Giovanni e Paolo Hospital, Venice, Italy. federico.mainardi@ulss12.ve.it

Abstract
Among the primary headaches, cluster headache (CH) presents very particular features allowing a relatively easy diagnosis based on criteria listed in Chapter 3 of the International Classification of Headache Disorders (ICHD-II). However, as in all primary headaches, possible underlying causal conditions must be excluded to rule out a secondary cluster-like headache (CLH). THE OBSERVATION OF SOME CASES WITH CLINICAL FEATURES MIMICKING PRIMARY CH, BUT OF SECONDARY ORIGIN, led us to perform an extended review of CLH reports in the literature. We identified 156 CLH cases published from 1975 to 2008. THE MORE FREQUENT PATHOLOGIES IN ASSOCIATION WITH CLH WERE THE VASCULAR ONES (38.5%, N = 57), FOLLOWED BY TUMOURS (25.7%, N = 38) AND INFLAMMATORY INFECTIOUS DISEASES (13.5%, N = 20). Eighty were excluded from further analysis, because of inadequate information. The remaining 76 were divided into two groups: those that satisfied the ICHD-II diagnostic criteria for CH, 'fulfilling' group (F), n = 38; and those with a symptomatology in disagreement with one or more ICHD-II criteria, 'not fulfilling' group (NF), n = 38. Among the aims of this study was the possible identification of clinical features leading to the suspicion of a symptomatic origin. In the differential diagnosis with CH, red flags resulted both for F and NF, older age at onset; for NF, abnormal neurological/general examination (73.6%), duration (34.2%), frequency (15.8%) and localization (10.5%) of the attacks.

WE STRESS THE FACT THAT, ON FIRST OBSERVATION, 50% OF CLH PRESENTED AS F CASES, PERFECTLY MIMICKING CH. THEREFORE, THE IMPORTANCE OF ACCURATE, CLINICAL EVALUATION AND OF NEUROIMAGING CANNOT BE OVERESTIMATED.

PMID: 19735480 [PubMed
============

Look under: Medications,  Treatments,  Therapies › Important Topics >Cluster-LIKE headache

Thank you all for the welcome and information.  I will take the time to study it and will share it with my doctor.  The good news is he is not defensive about things when I talk to him about them.

I was planning on asking him for a referral to a headache specialist if this episode goes on much longer.

Is it possible that the Aleve is not working, but my attacks are not lasting longer than 45 minutes?  I really suffer while I wait.

I know it is very rare for someone to get CH after 51 years of age, but it's just my luck I'd be one of them. :)  My symptoms really line up with what I have read so far.

It looks like I have some more reading to do...

Thanks again.

Mark Olson wrote on Apr 6^th, 2014 at 8:15pm:

Is it possible that the Aleve is not working, but my attacks are not lasting longer than 45 minutes?  I really suffer while I wait.

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

This has the standard definition of cluster headaches:


Quote:

Attacks of severe, strictly unilateral pain which is orbital, supraorbital, temporal or in any combination of these sites, lasting 15-180 minutes and occurring from once every other day to 8 times a day. The attacks are associated with one or more of the following, all of which are ipsilateral: conjunctival injection, lacrimation, nasal congestion, rhinorrhoea, forehead and facial sweating, miosis, ptosis, eyelid oedema. Most patients are restless or agitated during an attack.

So 45 minutes is a "normal" duration, with room for them to be both longer or shorter.

For aborting CHs, injectable imitrex and high flow rate oxygen can abort a CH in about 5-10 minutes, which means you can miss out on a whole lot of pain.

I managed to get an appointment with a headache specialist (neurologist) today.

She agrees with my primary care physician that it is most likely CH.  Due to my age, she wants an MRI to rule out AVM, pituitary mass, etc, but feels it is very close to being a waste of money.

In the meantime, she wants me to try using Zipsor (rapid release Diclofenac) at the onset of an attack and Topiramate to try to prevent attacks.  She also recommended an OTC magnesium supplement as well.

We will see how well these work and the results of the MRI.

Thanks for the further information, Mike.  Your help is deeply appreciated.  I'll definitely buy you a beer if I ever make it to NZ.  :)

I'm pleased that you progressed this to seeing a headache specialist with the correct skills and that you were able to see them quickly. It is common for people to have to wait months to see someone.

I strongly recommend looking into using vitamin D3 which has been a very successful preventive for many. I've been CH pain free for over 2 years using it with some going over 3 years.

The other thing I'd look into is using oxygen to abort CHs. This is how I'd kill my CHs off in about 5 minutes.

If you ever do get over to NZ (just a single flight from either LA or SF to Auckland), then I'd love to catch up too for a beer and chat...

If you have CHs diclofenac won't do much probably. It's an anti-inflammatory. You'll do better aborting a hit with high flow O2 (talk to us before setting it up, so many get it wrong and therefore no benefit) and chugging an energy drink. Imitrex injections are also effective. Good luck with your appointment and if CHs are confirmed let us know. Also you might want to take the quiz at left here and bring the results with you. blessings. lance

Thanks for the advice.  I got in yesterday morning for the MRI.  I'll be seeing the neurologist again on the 22nd to hear the results.

I did take the cluster survey and did take it in to the neurologist with me.  1-8 were no and the rest were yes, although I do occasionally feel a slight touch of nausea.

Up until last night, my headaches were no more than maybe 8 or 9 on the Kip scale.  But last night, at about 1:39AM, about 30 minutes after I went to sleep, I had head pain that I did not think was possible.  I took two of the diclofenac, and walked around the family room alternating between panting and repeating "Oh God, Oh God, Oh God" over and over again until it finally started to wane a bit.  I didn't have my glasses on so I didn't notice the time it ended.  It seemed like forever.  I sat on the couch, shaking and exhausted and fell asleep sitting up.  I woke up later and went back to bed.

I could not believe how bad that hurt.  I spent the entire day  today dreading the fact that I will have to sleep again tonight.

I have the utmost respect for all of you who have survived this terrible condition for so long.  I had no idea what real pain could be...

If I have caffeine after noon, I can't sleep at all. I'll do it if I have to, but hope there's a caffeine-free alternative.  It sounds like O2 will be in my future assuming the neurologist doesn't find something other than CH.

How have you all been able to take this for all these years???

That description sounds all too familiar to anyone with CH from the symptoms to the level of pain.

As to how we can take it, the key is the combination of a good preventive to limit how many CHs we get and then having methods to abort any CHs that we get. Then it is a matter of learning to live between the CH hits and between the cycles.

Hi there.
So sorry you're having such a bad time right now. Believe me, we all pace and pant and pray and curse so we know exactly what you go through. We call it dancing with the devil.
We get through it because it's better than the alternative. While you dance, just keep telling your self "it will go away soon". It always does.

I urge you to get oxygen therapy as soon as possible. I promise you'll be glad you did. I've only had it for a few weeks myself and can't believe how much easier it makes it to cope with this thing in our heads. But, and this is important, You must have a flow of at least 15 litres per minute or more, and a non rebreather mask. If you get either of those wrong it won't work. Check out the "oxygen info" yellow highlighted tab on the left of your screen. I keep mine by the bed. When I wake in pain, I can be asleep again 20 minutes later.

Also, imitrex injections ( the tablets are no good) are a life saver if the cost isn't preventative. I never leave the house without a days supply. If you can get them it's a good idea to stockpile a few while you are out of cycle, then the price doesn't hit too hard when you need to use them every day.

I'm glad you got your MRI. It's never a waste of money to rule out something sinister. More sinister than dancing with the devil that is!

Good luck with everything. Come back and let us know how you get along.
Maz.

Hey Mark,

We know what you're going through and the good news is it doesn't need to be that way.   You're likely vitamin D3 deficient so ask your neurologist for the lab test for 25(OH)D.  This is the serum level metabolite of vitamin D3 that's used to measure its status.

Print out the following link and take it to your Neurologist at the next appointment.  It will explain the requirement for the 25(OH)D lab test...

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

In the mean time, pick up some 5,000 IU vitamin D3 liquid soft gel capsules, some Omega-3 fish oil, some magnesium and some Mature Mult vitamin mineral tabs as shown in the photo below.

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With the exception of the Super K that I buy over the internet from Amazon, I buy these supplements at Costco.  You can find similar brands at Walmart, most super markets, GNC or the Vitamin Shoppe.

Start out with 10,000 IU/day vitamin D3 for a couple days along with all the other supplements: 1000 mg/day Omega-3 Fish Oil, 400 mg/day magnesium, one of the Mature Multi tabs...  You can add the Super K Advanced K2 Complex when they come in...

After a couple days bump the vitamin D3 dose to 20,000 IU/day for two weeks.  In addition, take a 50,000 IU loading dose of vitamin D3 once a week for the first two weeks on top of the daily 20,000 IU dose.

At the end of the first two weeks, drop the vitamin D3 dose to 15,000 IU/day for another two weeks.

This works out to 600,000 IU of vitamin D3 over a four week period.  This should result in an average 25(OH)D response of 60 ng/mL above the starting serum concentration.

After the first four weeks, drop the vitamin D3 intake to a maintenance dose of 10,000 IU/day.  That should keep your 25(OH)D between 70 and 80 ng/mL...

If you're still getting hit after the first two weeks, add a vitamin B 50 tab a day and continue taking them for three months only.

Vitamin B 50 is a formulation of 50 mg each of the seven B vitamins and it's an easy way to correct any vitamin B deficiencies...

As far as being too old for CH...  BS!  I'll be 70 in August and I'm still a chronic CH'er...  All I need do is stop the vitamin D3 supplement and WHAMO!  I'll get slammed... 

Take care and please keep us posted.

V/R, Batch

Thanks guys.  Great information.  Very helpful.  I will take your advice.

FYI, I only had a minor headache at 9PM on Friday night and no headache at all on Saturday or so far today.  I have been pretty happy for the past couple of days....

I just got back from my follow-up neurologist visit.  The MRI showed nothing that could be causing CH-like symptoms, so her conclusion is that I am one of the 2% that has come down with CH after the age of 51.

I have been headache free since April 11th.  She wants me to stay on the Topomax for 3 more weeks and then wean myself off.

She's ordered a blood test to check my vitamin D levels per Batch's suggestion, so we'll see where that takes us.

She's planning on getting me on O2 if/when the headaches come back.  She is reluctant to put me on injectable or inhaled Imitrex due to my heart risk.

Thanks again for all of the valuable support and input.

Hi there Mark. I live in Oakland and work in San Francisco.

Feel free to send me a message if you ever want to meet for coffee and complain about the beast, I know it's rough.

My last episode ended a couple of days after starting a 25mg dose of Topamax twice a day.  I stayed on the Topamax for about a month and then took two weeks to wean myself off.

The headaches are gone, but I am not sure if the Topamax worked or if the episode simply ran its course.  I guess we will see in the Fall.

I'm a bit nervous about having a drink.  I really miss my occasional shot of single malt scotch.  One of these days, I'll give it a try again.

I am feeling good enough that I let myself get talked into coming out of retirement to go back to work.    :)

I drink very little so don't have much experience here, but from what I hear from others, and read on medical websites, alcohol will only trigger an attack if you are already in a cycle. In remission you should be OK.  ENJOY IT WHILE YOU CAN !   [smiley=beer.gif]

Off cycle alcohol is safe for me, only on cycle does it cause me to get bit!

Consider going on the "Batch Regimen" NOW while you're off cycle. It's kept me off cycle for over 4 years, after well over 30 years of episodic CH. It's cheap....good for you, and it keeps beasty at bay!

JOe