maswiger1@aol.com

[Peggy62]

I am a relative new patient of Cluster Headaches.  I need info more then anything.  I have had headaches since sometime in the early 2000 but just recently been told they were Cluster headaches.  I have read some things and part applies and part doesn't.  But my headaches are coming more freqently and lasting longer and are stronger.  I have done Toradol and phenegran shots.  Have done oxygen.  Have had perscriptions for phenegrin and it seems to help.  I can not honestly say there is much of anything that helps or stops the pain.  It just has to run it's course.  Lately they have been lasting for about 3 weeks.  Was told to use Benedryl and magnizium.  Have even added Execedrin Migraine to that.  Nothing.  What is the strain I have been seeing about Vit D 3?  I take that.  How is it suppose to be taken and what strength.  Need any info I can get as to how a headache works and what you do for relief.  The only way I can get away from a headache is to go to bed with an ice pack and sleep.  They do however sometimes wake me up.  Thanks for any help anyone can give me.  

[fella1234]

Hi Peggy,

Firstly, I would get thee to a neurologist (with a headache specialty) if you haven't been yet.  What you describe could be cluster headaches, though I can tell you I've never been able to put on an ice pack and go to sleep when I'm having an attack.  Normally, attacks are far too severe for that to work and necessitate rocking back and forth or pacing to cope with the pain.  Bad attacks usually involve me intentionally scalding myself in the shower or banging my head on a wall/ doorknob.   Thankfully, my condition has improved enough that that doesn't happen very often anymore but in order to treat yourself, you need to know exactly what you're dealing with first.  

As far as relief goes, Imitrex is the standard abortive medicine for both migraines and clusters.  The generic form is called Sumatriptan.  You can get it as an injectable (which is a necessity for most folks with CHs) or in nasal spray or pill form.  I have it but only use it as an emergency because I have found it causes me to have rebound headaches.   But for stopping a headache, it is miraculously effective.  I gave my wife one (a pill) for a severe migraine she was having last week and she was absolutely blown away by how fast and how well it worked.

The Vitamin D regimen was developed by a fella with CH who goes by the handle "Batch".  Standard doses of Vit D on Batch's regime are 10,000 ius/ day.  I personally take 20,000/ day.  This is substantially more than even a heavy load recommended by doctors for, for example, multiple sclerosis.  When you are taking Vitamin D in such large doses, you need to take magnesium and calcium supplements to help you absorb the vitamin D and to counteract any deficiencies arising from its use.  Furthermore, you need to take it with food, preferably a large meal.  Batch's Vitamin D3 write-up in the ClusterBuster Files can give you more detail; I'm giving the broad strokes here.  Batch is insistent that you get a blood test to monitor your Vitamin D blood levels (details in the file) to insure you have reached the therapeutic level.

After you've been diagnosed with CHs, standard medical procedure is to put you on Verapamil and steroids.  Many folks find this helps them.  Many folks don't.  YMMV.

when you say you've done oxygen: people with cluster headaches need at least 15lpm through a nonrebreather mask for effective aborts.  And you need to be huffing on it pretty hard.  It's a specific process.

I hope this helps you and I'm sorry about your headaches.   

[CHfather]

Nothing significant to add to fella's superb response. If phenergan, an anti-histamine, worked for you, it's possible that Benadryl will, too. Recommended dosage is 25mg every 4 hours, and 50mg at night, with the usual warnings about drowsiness.

I share fella's doubts about whether you have CH. When you say "Lately they have been lasting about three weeks," do you mean that you have an ongoing severe headache for three weeks, or that you have attacks frequently during a three-week period and then they go away?  

If you do have CH, strong pain-killers (such as Toradol) are not going to help.  The strongest analgesics/opiods don't work.  As fella says, oxygen, verapamil, and sumatriptan are the first-line treatments, and maybe some prednisone to perhaps create some painfree time.

If you do have CH, it's possible that caffeine will help you (there's some of that, but not enough in Excedrine Migraine).  You might try drinking an energy shot, such as 5-Hour Energy, when an attack begins.

[Peggy62]

fella1234 and CHfather,

First of all thank you for your responses.  When I say a headache lasted for 3 weeks.  No the pain is not constant.  The headache is always there but lessens on and off.  And then just as fast as it appears it leaves.  I usually put the ice pack on the back of my head and lay on it and eventually switching to heat.  This relieves it but it does not go away.  

I am interested in each of the remedys you have listed and plan on learning more about them.  The oxygen was what they administered in the ER.  

I am a Vetern and use my VA facilities.  Sometimes I get very frustrated with the process.  I have been sent, twice, to a neurologist but did not get much satisfaction.  Will not go into right now.  

This is the reason I am looking for advise and help.  I am not going to be able to get what I need without knowing what that is and how to go about it.  If these are not Cluster Headache then what would they be?  The fact that they can linger for long periods of time is what makes me believe that is what they are.  

I do not have symptoms of normal Migraines.  No flashing lights, no vomiting, passing out, etc.  But I do have advanced pain that lasts a long time.  

Thanks again for your help.  

 

[fella1234]

Hi Peggy,

You're welcome!  I have what most would describe as very typical episodic cluster headaches so maybe it would help you to hear what happens to me:

when a cycle starts, I am usually hit with a major attack during the night.  A "major" attack is, as aforementioned, a serious pain situation, during which I will screw my face up in pain, pace, yell, talk to myself (e.g. "Whywhywhywhywhywhywhy"), kick things, stomp my foot, my nose will profusely run on one side of my head and my eye will tear up or redden on the same side.  These are all signs of a cluster headache.  Within two hours, the pain will vanish.  When I sat vanish, I mean it goes away in seconds, with no residual effects beyond the feeling like I've just run a marathon, or some very minor pressure changes.  It's like a light switch got turned off.  No matter what position I'm in (usually laying down in the shower), I can stand up, and go about my business like it never happened.  For a normal attack, that usually means going back to sleep, because that's what I was doing when it started.

the actual detail of the pain is as if a white hot poker was jabbed directly into my eye and is twisting back and forth (everybody has their own creative way to describe the pain; you've got a lot of thinking time when an attack is happening.....).  The pain is localized, not spread out, and I could point it out to you with perfect accuracy every time.  It never changes type of pain or location.  

During a headache cycle, when I'm not having an attack, I have no pain.  I might have flashes of pressure on occasion, or the sensation of a headache (folks call these "shadows"), but a cluster headache attack is a very discrete event you could block on a schedule to the minute, if you were inclined to do so (e.g. "Attack started at 12:14AM, resolved at 2:42AM"). 

A cycle usually lasts for two months, and seems to just go away eventually (before I started Busting, but that's a whole different story).  While in a cycle, attacks are at least once a day, sometimes more.

Everything I just described is fairly textbook CHs.  Now, many folks' CHs are different, so it's not chiseled in stone, but those are all big signs.

the best advice I can offer you is to keep a detailed headache diary.  Your memory is not a reliable tool in perfect circumstances, much less so when you're having regular headaches.  This diary should note time of headache onset, when it went away, what you did to make it go away, whether what you did worked and should keep track of what foods and drinks you have consumed throughout the day (and meds, if applicable).  A doctor can use this information to give you a more accurate diagnosis and, in a worst case scenario, you can use the information to sleuth out what's going on yourself. 

As CHFather said, traditional painkillers, both OTC and high-strength prescription opioid, are useless for a cluster attack.  

I don't want to speculate on what type of headaches you might have because I'm not a doctor, and I don't know a lot about how they present for you, but headaches can have many underlying causes and their treatment changes based on what causes them.  What works for a cluster headache is very different than what works for, for example, a brain tumor, which is different from migraine, which is different from severe sinus pain.   All four of those can cause severe headache pain, and all four have very different treatment protocol.  The headache diary will help you zoom out and get perspective on what's going down.  

 

in the meantime!  Some treatments/ lifestyle changes that certainly won't harm you: drink lots of water.  If you feel a headache coming on, try aborting it by sucking ice water to the back of your throat on the headache side.  CHFather mentioned caffeine.  Vitamin D as described by Batch.  Massage tendons on your neck and head (my best one for CH attacks is right under where my ear lobe meets my head; press hard [it hurts] and hold for a slow count of 30.  You might find better ones for you).  Get regular sleep.   That means go to bed at the same time every night, wake up at the same time every morning.  Don't sleep in.  No devices at least 1 hour before bed (this interferes with your R.E.M. cycle and, by extension, your circadian rhythm).  Be conscious of potential allergens (for example, I'm not "allergic" to cats, but when I'm in a headache cycle, I have less attacks if I sleep in our basement, where our cat can't go and leave hair/dander/etc.).  Avoid alcohol.

Some folks on here swear by melatonin and Benadryl.  I have not explored this and am not comfortable expounding on it.

I hope all of these help, but more than anything, keep that diary!  Good luck.

[Roadie]

This is an interesting description of CH.  My CH always started in the same ways as described above.  I'd get struck during the night.  My first thoughts would be "No - no way!  "This can't be happening out of the blue like this... again".  And then I'd have to come out of denial and deal with the attack.  My attacks always began with an uncomfortable feeling behind my right eye that I just felt I needed to get rid of.  But I could do nothing to stop and and it would rapidly get worse. Normally, within ten minutes the attack would be excruciating.  Back before I knew what my headaches were, I'd neck some pain killers and ride it out.  They'd normally be at their worst for 30-60 minutes but they wouldn't end suddenly, as some people would describe.  They'd begin to ease and gradually fade away over the space of say 30 mins.  During my first few bouts I don't remember having any pain between attacks but I would get shadows and I'd often wake with a nagging ache behind my eye that'd make me jump out of bed.  Like Fella says, I'd avoid lie-ins and I'd try to sleep quite propped up.  Nobody's ever explained to me why it hurts more to lie flat when you're in cycle?  My bouts of episodic CH would last 2-3 weeks, except my bout in '99 that lasted about 6 weeks.  My remissions began to lengthen too.

My bouts are different now and I question whether i still even have CH.  I began to have bouts of shadows about 18 years ago. These would be episodes where I'd have shadows and constant pains and sensations in the CH part of my head.  I was convinced my attacks were coming but they mostly didn't.   Only on one occasion during these bouts of shadows has a real CH attack broken through, and that was after a heavy night of partying. It was also 14 years ago now.  In 2002 and 2003, bouts of "normal" CH began in the "normal" way, i.e. a sudden attack during the night without warning.  These went away fairly quickly, possibly because I used verapamil but my "real" bouts were always short.

Since my last full CH attack, I've had bouts of shadows in 2004, 2006. 2010 and the current one that has been ongoing since June 2017 (yes - I had a blissful 7+ years of full remission).  Shadow bouts vary in length.  The shortest was a few days.  The longest was over a year (they called me Chronic, in spite of me not having full attacks).  The interesting thing as far as Peggy is concerned is that I am in almost constant pain.  Today, for example, I have a burning, piercing pain in my nose and eye that feels like a hot screwdriver is being pushed up my nose.  Some days this is more of an electric buzzing feeling.  Other days is is a burning/piercing or a squeezing and twisting feeling.  My right nostril also blocks repeatedly throughout the day and can become severely painful. I also get "shadow attacks" that begin to build like a real CH attack but they then level off at about a 2 -4 and can sit there for 4+ hours.  I wake in  the night with a piercing feeling in my eye but no CH attack.  I woke this morning with the old nagging ache that used to be a warning that an attack might come, but it didn't.  I generally sleep well and get pain free nights.  In November I had a good 2-week period after a holiday where it felt like I might be back in remission but it didn't last.  So, over the past 6 1/2 months I have had virtually no pain-free days whatsoever.  I have a supply of O2 that I have tried just once. I have several Sumartriptan injections and nasal sprays to hand that remain untouched and I've very recently started verapamil to see if it'll knock this out.  

Sorry - it's a long post but the detail might help Peggy and I'm always on the look out for somebody that might recognise my symptoms. My current neuro seems pretty confused!

 

[xxx]

Hey Peggy,

Thank you for your service...  You're likely vitamin D3 deficient and that deficiency is contributing to the frequency, severity and duration of your headaches.  If you can get into the VA ask for lab test of your serum 25-Hydroxy Vitamin D3, a.k.a., 25(OH)D.  This is the first metabolite of vitamin D3 that's used to measure its status.  Nearly all CHers with active bouts have a 25(OH)D serum concetration ≤ 40 ng/mL with a mean of 23 ng/mL.  As CHers we need to keep our serum 25(OH)D up between 80 and 100 ng/mL.  That will require a vitamin D3 dose of at least 10,000 IU/day.

Pull down a copy of the anti-inflammatory regimen at the following VitaminDWiki link.

http://www.vitamindwiki.com/tiki-download_wiki_attachment.php?attId=7708

Take care and please keep us posted.

V/R, Batch

[CHfather]

4 hours ago, Roadie said:

I'm always on the look out for somebody that might recognise my symptoms

Roadie,
Hemicrania continua???  https://www.migrainetrust.org/about-migraine/types-of-migraine/other-headache-disorders/hemicrania-continua/

[Roadie]

On 1/19/2018 at 7:01 PM, CHfather said:

Roadie,
Hemicrania continua???  https://www.migrainetrust.org/about-migraine/types-of-migraine/other-headache-disorders/hemicrania-continua/

Some days you'd say yes.  For much of the past 6 weeks you'd say yes.   But yesterday, for example, I found myself virtually pain free for a large part of the day.  Last night I was completely pain free for at least half the night.  My neuro says it can't be HC if I get any pain-free periods.  I think they should try indomethicin anyway, just to rule it out.

[CHfather]

7 hours ago, Roadie said:

I think they should try indomethicin anyway, just to rule it out.

I do, too. I think your neuro's position is ridiculous.

[Roadie]

I think the confusion arises from two things - firstly, I had definite bouts of ECH for at least a decade.  Secondly, I have pain-free periods, albeit fairly short and infrequent.  The other problem is that I have acid reflux so they will need to do an injection for an indomethicin trial and I have quite a long journey to my neuro.  We were waiting for a bad day, then the pain improved for a few weeks, then Xmas happened, then verapamil was chosen as the first drug to try.  I agree that we might need to go back to square one.  Whatever I've got doesn't fit the HC description perfectly, but at the moment it is more like HC than CH.

 

[Peggy62]

Oh I was so happy to see mail today on this post.  I did not save mail on previous posts and then could not figure out how to get back to this page.  

I am considering maybe my headaches might be  Hemicrania continua.  Sounds alot like it.  And yet no.  I am confused.  I do, as previously mentioned, keep a pain diary.  I am wondering about how you all take meds.  Do you take them regularily or just when headache appear?  The Vit D 3.  Again daily or when in a headache?  My D3 is 1,000 IU's.  Do I take 10 of them or do they make D 3 in larger IU's.  

I have an apt with my Primary on the 30th.  I am going to discuss with her the things I've learned here in these postings.  I am looking for a med that will stop the headache whenit starts.  I do not particularily want to be on a 24/7 med unless I have to to prevent them.  I have had 3 week headaches for Oct, Nov, and Dec.  Which is unusual for me.  I don't usually get them that close together.  Or as severe as they were.  Which is why I'm looking for help.  I do not like where this is heading.  

My primary did consult with the neurologist in Pittsburgh and they recommended Depokote.  I was on Depokote years ago for  bi polar.  I do not want to take it again.  But if I can find an ans I will do what I have to to prevent them from happening.  

Thanks everyone for your responses.  I have learned alot so far.  

[CHfather]

The good thing about diagnosing hemicrania is that whether or not the drug indomethacin treats it is the diagnostic indicator of whether you have it.  Indomethacin is a kind of nonsteroidal anti-inflammatory drug (an NSAID), so I don't think it will require stopping other treatments.  It can be quite rough on the digestive system, though.  

I still doubt that you have CH, but answers to some of your CH-related questions:  Depakote is sometimes effective for CH, but it's not a first- or second-line prescription for CH.  Lithium, which also treats bipolar, is used to treat CH.  However, it's only recommended to be given to people with chronic CH as a kind of last resort, because of the side effects and the fact that severe rebound attacks can occur when lithium is stopped.  This is a good discussion of standard CH treatment: https://americanheadachesociety.org/wp-content/uploads/2016/07/Peter_Goadsby_-_Treatment_of_Cluster_headache.pdf

People take the D3 regimen year-round, to be sure they keep their D levels up (and often because they think it just makes them feel better).  Yes, you can get D3 in larger dosages.  Abortive medications (oxygen, triptans) are only used in cycle, preventives like verapamil can be eased off when out of cycle if you have a reliable sense of when the cycle will start again.

 

[Peggy62]

journal entries:  Nov 7th, starting headache.  Took Excedrin Migraine, Magnisium, Benedryl, some penegran (left from er visit).  Headache gone.  

                           Nov 8th, did not come back.

                            Nov 11th, The headache is just hanging there.  As long as I take the meds I'm able to control it.  

                             Nov 12, Headache set in about 4:30 PM.  Was planning on going to church, went to bed instead.  Took meds.  Applied ice then heat.  Nothing worked it is a bad one, feels like a vice clamping down.  In forehead and eyes.  

                               Nov 16,  this headache just comes and goes.  Had a very stressful day yesterday but no headache.  This morning it is bad.  Headache lasted almost all day.  Did ice then heat.  Settled down in late eve.  

                                Nov 20,  Got up with no headache.  While sitting at the computer my head started shrinking.  The headache is bad .  Was bad yesterday until eve too.  (NOTE:  when I say it is bad it is nothing like what you guys describe)  Took 2 Excedrin, benidryl, magnizium.  5 hours later took 4 ibuprophen and magnisuim and benidryl..  

Had nothing more on this headache Nov.  Not when it ended or anything.  Did leave for TX on the 6th of Dec.  Stayed until the 3rd of Jan.  I had a headache while there.  Did the same med routine and even went to a Med Express for Toradol and Phenegran shots but did not help.  It started on the 23rd of Dec and did not let up until just before I left.  Note tho, we had an attic fire that eve.  Am wondering if the smoke caused and prolonged that headache.  

Looking back through journal and see postings in July.  Headache started on the 17th and did not leave until Aug 2.  

None of my posts really describe in detail about the headaches themselves.  I do know my eyes bother me.  My head feels like it has shrunk.  Very tight.  

I believe these headaches started with the onslot of Menopause.  Never had much trouble with headaches in my earlier years.  Which is why I am suspecting the  Hemicrania continua.  Well that is just about all my thought right now about my headaches.  

[CHfather]

Since you and I just posted at the same time, just letting you know that there's a post from me above yours here.

[fella1234]

Hi Peggy,

I buy my Vitamin D from Costco and it comes in 5,000 iu doses.  Batch's vitamin D regimen is for daily use.  The principle is that having a high concentration of Vit D in your blood cuts down on inflammation, which is presumably responsible for cluster attacks.  I must emphasize, there are other vitamins and supplements to take with the regimen.  For example, my neurologist insisted I take calcium and magnesium if I wanted to take such high doses of the Vit D.  If you're going to take big doses of D, you need to read Batch's guide.

If your headaches are migraine or cluster, the Imitrex I mentioned earlier is an abortive.  You take it when you feel a headache coming on and that's it. 

From reading your diary, and with the big caveat that I'm not a neurologist, your headaches do not meet the criteria for cluster headaches.  The headaches themselves are too long, too spaced apart, and the pain you describe is widespread.  CHs don't last more than three hours at a spell, happen at least every couple days until a cycle is over, and the pain is localized, usually behind one eye.

As such, I wouldn't expect to find any relief from standard cluster aborts like oxygen or Imitrex.  I'm not an expert on any other headaches, but if they started when you hit menopause, they might be hormone related, or vitamin/ nutrient related.  Not a bad idea to have your thyroid checked if you haven't lately.  

I wish you the best of luck in finding the cause and treating the headaches.  

-C

[Peggy62]

OK have a headache now.  Wrote down symptoms as they appeared.  Here it goes:

Got these symptoms yesterday, they came one at a time afew minites apart

1. pain between the eyes

2.  across forehead

3.  tightening in back of head and jaw

4.  ears

5.  eyes and temple

It never really set in tho until this morning. 

then it did:

6.  front of skull

7.  head is shrinking

8.  numbing along right side of head

9.  forehead getting tight. 

I took:

Magnisum

Excedrine Headache

antihistimine

Vit D 3 5,000 IU's

went on about things to be done.  By evening it is really sore.  

So what is the opinion?

 

[Peggy62]

I am going to primary tomorrow and toing to ask her for the Indomethacin.  

This is day 4.  It is bad right now, in my eyes, tightness in forehead, temples and down to my jaw.  Head feels like it is in a vise.  Want to go to bed but I'm not going to.  I find I do better if I push through it.  Laundry today.  It was not bad yesterday.  Just kind of wavered around.  Making up for it today.  

 

[Peggy62]

fella

I have been on Imitrex before.  It did not do anything.  

I was under the impression that cluster headaches held on for a long time and that was why they were called suicide headaches.  

[CHfather]

On ‎1‎/‎26‎/‎2018 at 7:13 PM, Peggy62 said:

So what is the opinion?

Peggy', they're called suicide headaches because the pain is so terrible that death seems preferable.  Being able to "push through it" and "go about things that have to be done" suggests that it is not CH.  (You have acknowledged that it's not as bad as what people here typically describe, so I'm not telling you anything new.)  The fact that Imitrex didn't do anything is another very strong indication that it is not CH, at least if it was injectable or a nasal spray.  Pills often do nothing.  CH pain can affect all the areas you mention, but the pain is almost always most severe in/around one eye, and that's not really what you are describing.

[Roadie]

I've always believed that CH was strictly unilateral.  My attacks always start with a pain behind my right eye.  Pain between the eyes is something I've never heard described and I've been talking to other CH sufferers for 20 years now.  I'd accept it if somebody said the pain had spread across the forehead during a bad attack, but for an attack to start in the centre of the forehead is certainly unusual.  Hemicranial continua is also meant to be a unilateral pain, but hey, I'm no doctor as they say!  I've also suspected this in my case but I've actually had pain free periods during all of the past 7-8 days so it seems unlikely.  The only thing is that I'm now using verapamil, which can help HC, so the improvement might be due to that.

 

Keep us posted, Peggy.  I'm really interested to hear how you get on and obviously hope you get some relief very very soon.

 

Joe

[Peggy62]

That is one of my questions about Hernicranial continua,  is there never a pain free period between headaches or are the headaches constant? 

I did talk to my primary about this today.  She perscribed the Indomethacin for me and we are going to give it a try.  This is day 5 with this headache and it has been bad all day today.  Came home, got an ice pack and went to bed for a couple of hours.  No relief.  Have taken 2 of the pills.  Suppose to take 3 a day for 5 to 7 days.  We shall see.  

[Roadie]

Hi Peggy,

 

I know what the rule book says about HC but the condition was only recognised in the past 30 years so who's to say the rule book is definitive?

I haven't even spoken to another CH sufferer who has pain all day for several days at a time.  That doesn't mean it can't happen - I've just never heard of it.  But HC is supposed to be continuous with no relief unless the sufferer goes into remission.  

My headaches were textbook CH for the first 11-12 years.  If you looked at it over the past 7 months, it looks much more like HC, but I do get breaks in the pain.  Today the pain is back, and if it continues, I'm going to ask to try indomethicin as well.  At least it'll rule out HC if it doesn't work.  

Please let me know how you get on.  Good luck!

 

Joe

[Peggy62]

OK Joe.  I believe I have pretty much ruled out Cluster headaches for me.  I have none of the symptoms.  As to the headaches that usually apply to women.  I got the perscription yesterday (Indomethacin. )  Yesterday.  Day 6 of headache and day 2 of med and nothing has changed yet.  Symtoms for this kind of headache do not really apply either.  So now I guess I do more research.  As soon as the pain lets up enough for me to do it.  

Thanks for your reply.  I am getting desperate here.  

[xxx]

Hey Peggy,

There's every reason to expect the anti-inflammatory regimen will work just fine to prevent all of the trigeminal autonomic cephalgias (TAC).  Be sure to ask your PCP for the 25(OH)D lab test.  A Coke & Candy Bar sez you're vitamin D3 deficient.

Take care, V/R, Batch