Hello (First Post)

[BrianK]

Hi everyone,

 

My name is Brian and I've been reading this board and other information about cluster headaches for some time now.  I was diagnosed with "transformed migraine" (now called "chronic migraine") in 2004 and experience cycles and symptoms that seem cherrypicked from the entire buffet of TAC's and migraine without neatly fitting into any one category.  I am not sure if I experience cluster headaches or am likely to experience them (I'm 38), but either way, I'm interested in learning more especially from the people who know them best.  I'm happy to be here.  Below is my headache background:

As an early teen, I was 20 lbs overweight and had around a dozen classic right-side migraines with aura (blind spot, excruciating bizarre headache, nausea, vomiting, mild euphoria when it ended).  At 16, I got in shape, became a smoker and heavy coffee drinker and they ended.  But around age 19, I started having strange sensations like the presence of something in my throat and a thick intrusive numbness around the right side of my head, behind the eye and back of skull.  It would come and go and there'd be an awful feeling that something was "off" that I couldn't put into words.  It would take on a dry wooden quality at times and become painful but only to a moderate degree at most.  I felt disconnected and unnatural, sometimes emotionless.  I was put on Nortriptyline for two months at 24 but ended it due to it making life feel creepy.  I had severe insomnia before events and exams from 23-25.  I took a micro-dose of 5HTP a few times at 25 to sleep with success, and one time it briefly brought forth full migraine pain, which relieved me in some way cause I felt alive, real, and connected in ways that were rare during the constant dull pain discomfort and disconnection.  Right before I turned 26, I started having migraine episodes every morning and finally succumbed to agreeing to try another antidepressant.  So I started 10 mg of Lexapro which improved things on many vectors, sleep, stomach issues, feeling more real/alive, and headache.  Been on it ever since.

For five years, I had no migraine level pain and the dull background pain and discomfort either vanished or mitigated.  Then at age 30, I had the first of four headache "phases" with the following features:

-Each followed a major sleep schedule disturbance (trip overseas, death of best friend, getting very little sleep for days to accomplish something)

-Lasted 5-8 weeks.

-Migraine level pain lasting 30 minutes to 2.5 hours every day (sometimes twice) or every other day.

-Centered behind right eye.

-Often responsive to coffee.

-Vomiting, and feeling better after vomiting. 

 

A couple of times the pain was so bad that I remember taking solace in the idea that one day I would die and there'd be a release.  However, I was laying down most of the time, never paced, and the pain at its worst was still more undulating and pulsing.  (I have heard cluster pain is relentless and without variation--is this true?).  

I'm six weeks into the most recent phase, now on 7.5 mg of Lexapro and 100 mg of Lamictal since early 2017.  The headaches are shorter and responsive to caffeine.  But on November 20th, I took an Ibuprofren and the next day, I had the return of the more constant "moderate" version of the stiffness which hadn't really bothered me since the mid 2000's.  Back then, I believed it constipated me and made things worse (I've often felt a lot better after going to the bathroom).  I was scared that it came back, and noticed that when I drink coffee while it's flared, it makes my eyes roll around involuntarily as if they were in REM sleep.  Additionally, I would wince or move my eyebrows around voluntarily to try to relieve discomfort and that has gradually become involuntary muscle spasms again, usually after having coffee.  In general, my first cup of coffee doesn't hurt--it usually aborts the morning headache or oncoming morning headache.  But later in the day, it leads to facial spasms and involuntary eye movement for the first 3-5 minutes.  I've been doing more half-caffeine and decaf later in the day.

In contrast to the other headache phases, I'm having phonophobia this time which I've never had much of before.  Have also had weakness, lots of yawning, and getting faint/lightheaded after talking too much.  I could feel my heart pounding after I eat sometimes and have gotten a sense the room is shaking.  At one point I was scared I was going to have a seizure (never had one before, but migraine and epilepsy are close relatives and can have symptom overlap).    

Things have slowly started to improve as I've been able to sleep more fully at night.  For two weeks, I would be awoken 1-2 hours after falling asleep by a bestial headache and have to abuse myself by chugging a can of Starbucks Doubleshot Espresso which did kill the pain.  Then I'd feel not quite fully rested when I woke up and had to have real coffee to fend off the morning headache.  Anxiety throughout the day, though that is also improving.  Magnesium citrate helped once as constipation seems to aggravate my head.

During the non-acute pain phases, I have some symptoms associated with TAC's.  Stuffy nose on the right side, mild sense of ear fullness, minor eyelid swelling, pupil constriction and awakening with "red-eye" in the right eye if not rested enough (tends to turn white again after coffee).  

It feels like this "phase" is on its way towards resolving, though I had a set back last night because my cat woke me up in the middle of the night demanding food (he doesn't usually do that).  Luckily after 45 minutes I was able to grab another 2 hours of sleep.  The morning headache today was a bit worse than yesterday but not tragic and it resolved not long after vomiting.  

So that is my story and where I'm at.  It doesn't fully match cluster because I haven't had pain that makes me pace, but there's enough here I can easily envision that happening and believe I can appreciate what it would feel like from experience.  They may have already been on their way to that level but as a coffee addict knowing it interacts in some way, I've never had a headache that I didn't attempt to abate with caffeine.   

Either way, I think that "something's going on here" at an intersection of chronic migraine and TAC's even it's not manifesting in the tidiest package.  Any insight would be appreciated and I look forward to learning more.  Best to everyone and thank you for reading,

-Brian 

[CHfather]

Brian, I'm sorry to say that I have no insight.  Too much going on here for me to perceive anything that might be helpful.  I will tell you that people don't "grow into" CH from other "headache" conditions, which seems to be something you're worried about. Yes, people with other "headache" conditions do have or develop CH, but that's like a tenth of a percent of all people with those conditions.  

Our equivalent here to "take two aspirin and call me in the morning" is "you should probably try the D3 regimen."  I have no reason to think it would help you, except that it seems to help with quite a few conditions, and it's essentially nonharmful.  You can read about that here: http://www.vitamindwiki.com/tiki-download_wiki_attachment.php?attId=7708

Maybe others will have better insight.

Wishing you the best.

[BrianK]

Thank you so much for responding, CHfather.  There is a lot going on here and like all of us, it's our own individual case study to bear.  Pointing out that spontaneous CH development happens rarely is helpful enough, since it's hard to find out many facts.  I appreciate that.  I have been afraid for years that one day it would just get me out of nowhere.  Does every attack result in pacing & inability to stay still or are there some where cluster sufferers can lay down?  Also, is smoking very common?  I have heard there is a high % of smokers among cluster sufferers but do not know how accurate that is.  

Best to you and thank you for the D3 link.  

-Brian

 

  

[FunTimes]

Brian- I smoke and have chronic clusters. I do not necessarily pace the room but I do not lay down. I use oxygen to abort the attacks so I sit in a recliner and kind of rock back and forth and squirm in the chair. most times I am exhausted after everything ends and I kind of relax a little if it is a day attack, at night I go back to sleep. If it feels like it is going to be a good one I down a 5hr energy drink as I am getting my O2 going.   

I hope you get this all sorted out and I am sure this site will help you with any questions you may have. 

[xxx]

Hey Brian,

As the guy who developed the anti-inflammatory regimen to prevent CH, I'll second CHfather's suggestion to read all about it.  It works to prevent both CH and migraine.  I suspect it's also effective for the rest of the TACs.

I'd also suggest a trip to your PCP/GP for a lab test of your serum 25(OH)D.  This is the serum level metabolite of vitamin D3 that's used to measure its status.  The following chart illustrates baseline 25(OH)D results from CHers with active bouts of CH before starting the anti-inflammatory regimen.

The normal reference range for the 25(OH)D lab test is 30 to 100 ng/mL (75 to 250 nmol/L).  CHers need a 25(OH)D serum concentration around 80 ng/mL (200 nmol/L) to prevent CH.  That requires at least 10,000 IU/day vitamin D3 plus the cofactors.

Take care and please keep us posted.

V/R, Batch

[CHfather]

3 hours ago, BrianK said:

Does every attack result in pacing & inability to stay still or are there some where cluster sufferers can lay down?  Also, is smoking very common?  I have heard there is a high % of smokers among cluster sufferers but do not know how accurate that is.  

The thing about the pacing, etc., is that it's true, as FunTimes said, that not everyone with CH does it, but almost all do. Things are a bit is different when there's a pretty reliable abortive like oxygen on hand, because that does calm some of the anxiety and distress (and pain) that are part of the reason behind the pacing.  But everyone who has been here who has had migraines or other severe "headache" pain and also has CH says that there's no confusing those things with CH, because CH pain is so very much worse (the exception might be forms of hemicrania, which at their worst can be at stratospheric pain levels like CH).  

Yes, a very high percentage of people with CH smoke (and, FWIW, a very small percentage of people with CH develop lung cancer--the incidence of lung cancer would be expected to be much higher than it is among so many smokers, many of whom are pretty heavy smokers).  People with CH who quit smoking don't get relief of their symptoms (a couple of people here have said they thought maybe their symptoms got a little lighter after they quit).

[Siegfried]

Hello Brian,

I know what you are going through as I have been in the same boat as you for a long time. Me as well have been a life long migraine patient (they started around my 12th) and it was actually a very 'classical' form of non-aura migraine completely fits the diagnostic criteria. In 2012 however I started to experience extremely painful exacerbations up to 3 hours during the migraine attacks, which took usually between 48 and 60 hours. I also experienced a running nose during these painful periods and extreme restlessness which was odd, as migraine makes me do exactly the opposite which is keep as quiet as possible. In migraine, every movement you make, makes the pain worse.

So I went to a headache clinic to see what was going on and after answering all kinds of questions, to my big surprise, they came back with a diagnosis of cluster headaches. They gave me oxygen which even as a bigger surprise, it worked like a miracle ! I could finally get rid of most of my Zomig intake. 

Now when I joined this forum, I also had these questions of "what do I have now" ? Is it migraine, CH, both, is the one morphed into another condition ? etc...

First I must say that your pattern of headaches is not that uncommon. It is something you will frequently see with people who have both conditions. It showed up like this in myself, there are other people here on this forum with similar patterns and I met many more in other support groups. I am a completely non-smoker (not primary and not secondary), never took any alcohol and never felt on my head or something that caused a head injury. So where does the CH comes from ? Right... from the migraine. That has also been confirmed by a study by Dr. Rozen.

Please read this, it will give you a lot of insight: https://www.ncbi.nlm.nih.gov/pubmed/29536529

Now to make it all a bit more complex, there is also something called migraine with autonomic symptoms. So these people getting all the autonomic symptoms as with CH but they are caused by the migraine. So it seems that both conditions share some underlaying similarities.

Does that mean that the one can morph into the other one ? My neurologist says "no" and I think they are right. I have examined it very closely in myself and what happens is that migraine and CH are actually two distinct conditions. They give a different type of pain, the pain originating in a different area, and many more differences. The sufferer should clearly feel the difference but what can happen (and often happen) is that the one condition is a trigger for the other. So it is common that during a migraine attack, CH is triggered and vice versa. 

What also can happen is that the one condition takes over some characteristics of the other one. For example nausea etc. So it is not always easy to figure out which headache type is active on which moment. So when that happen it gives the impression they are blended together.

In your case, the best you can do is find a good headache specialist and let them figure out what kind of headaches you suffer. For example, you say migraine that takes 30 min with pain behind the eye.. that is not characteristic for migraine. Migraine feels more like a "cervical depression" and the pain is in no way the same like CH. So pls get a clear conclusion and for that keep a headache diary where you write everything down in the most detail. Also film yourself during an attack. Once that is confirmed, then you are in a much better position to get the adequate medication. You will then figure out very fast that oxygen works wonders for CH, but for migraine it does actually nothing. Triptans should work for both conditions.  

Hope that helps and good luck !

siegfried

[BrianK]

Wow, thank you so much to everyone for responding so far.  I am very grateful.

Does anyone feel like their phases are triggered by circadian rhythm disturbances?  I've always felt much healthier at night in general.  It's like something just clicks and I feel human and alive.  During the day, there's often an impalpable feeling of malaise.  It's as though my body wants to sleep from 6 AM until 2:30 PM and generally when that occurs, I have excellent days.  Trying to conform to the early schedule was like fitting a square peg into a round hole.  Rather than getting used to it, I would get progressively worse.  I tried, I tried, and I tried.  Ten years ago, I switched to working a flex schedule with a family business (very understanding) and that helped a lot.  It wasn't my primary career goal but as I'm sure everyone here understands, when there's massive pain involved and migraine prodromes that imitate stroke symptoms, none of that other stuff matters.  

Before changing, even getting 6-8 hours of sleep would leave me fatigued, off, and underrested if it weren't when my natural rhythms wanted to sleep.  Since all of my phases were triggered by major sleep schedule disturbances, I've often had this feeling like the headache is a way of my brain painfully trying to process, resolve, and account for a major sleep debt.  The acute pain can come an hour or two after falling asleep and I heard it happens in REM sleep.  

FunTimes, thank you for sharing that.  I read an account from a cluster sufferer who rated the severity of his attacks from 1-10.  The variation surprised me cause I had read that they were all pretty uniform and "suicide headache" level.  I also heard that cluster isn't usually accompanied by nausea and vomiting like migraine is.  Is that true?

Batch, I've heard about the D3 regiment and am definitely interested.  When I've taken a D3 supplement, it's made me irritable although that could be since I never coupled it with magnesium and it could be a creating an irritating constipating effect.  

CHfather, thank you for the info.  Do clusterheads actually have a lower incidence of lung cancer than other smokers or the general population?  That would be very interesting.  I wonder why there is such a high smoking correlation.  It doesn't seem like coincidence.  When I started smoking, it brought me out of a terrible depression.  I'm addicted, but it doesn't feel like a monkey on my back that I want to be rid of.  It provides great relief and enjoyment for me, both in good times and bad.   Maybe smoking interferes with oxygen in some way, or perhaps cluster strikes people who have intensity and personality types prone to addiction.  I'm definitely curious.

Siegfried, I can't say enough about how meaningful it is to read your reply.  How old were you when you had exacerbations in 2012?  I've had some migraines where instead of laying down, I would kneel with my head in my hands in the pillow and then insert my head into my right hand and shake it around.  It seemed to help a bit. 

When I was first diagnosed with "transformed" migraine, I thought that perhaps my coffee use and smoking had staved off episodic migraine for years but that they may have created the conditions for the more chronic version, which for me had no exacerbations for years.  Like a monster that found a way to sneak back in attenuated form through the defenses.  It was constant with remission, dull to moderate, and could improve after eating and after sleeping well.   The actual pain itself seemed responsive to NSAIDs like Aspirin and Ibuprofren though I never took them for long periods of time.  But given the strangeness of other sensations accompanying it, I had several CT scans and MRI's, all of which were "normal."  I was first diagnosed with TMJ although it didn't make sense to me that joint pain would cause such alien feeling symptoms.  The transformed migraine diagnosis was watershed cause I never tied this milder headache to migraine, and it made more sense with all of the neurological implications.  

Still, the diagnosis is somewhat vague and the first treatment I took, Nortriptyline, was an overall nightmare.  It's called chronic migraine now and this other headache did not feel like a migraine at all, though it was on the same side.  And it mostly went away after I started 10 mg of Lexapro.  From that point on, I only had four "phases" that read much like cluster periods except for the fact that the pain has not reached 10/10 in intensity and they are pulsing + accompanied by nausea and photosensitivity.   Now, that older milder but constant headache has come back after I took Ibuprofren once (it was previously just daily short attacks, and now it is both).  It's the first time I've had any headache period where I wasn't on 10 mg Lexapro; I now take 7.5 mg Lexapro and 100 mg of Lamictal.  (Doctors changed it after a traumatic rare insomnia episode related to my best friend's death).  

Have you been able to find elements of relief and enjoy parts of life?  I hope so.  Best,

-Brian

 

[CHfather]

On ‎12‎/‎13‎/‎2018 at 3:42 PM, BrianK said:

Do clusterheads actually have a lower incidence of lung cancer than other smokers or the general population?  That would be very interesting.  I wonder why there is such a high smoking correlation.  It doesn't seem like coincidence.  When I started smoking, it brought me out of a terrible depression.  I'm addicted, but it doesn't feel like a monkey on my back that I want to be rid of.  It provides great relief and enjoyment for me, both in good times and bad.   Maybe smoking interferes with oxygen in some way, or perhaps cluster strikes people who have intensity and personality types prone to addiction.  I'm definitely curious.

This is from Todd Rozen's report in 2011, based on surveys filled out by more than 1100 people with CH, "Cluster Headache in the United States of America" (he reported there that more than 70% of people with CH had a history of smoking, a figure confirmed in other studies)

Interestingly, a very
low percentage had known cardiovascular disease
(myocardial infarction 1%, bypass surgery 0.3%, and
coronary stent placement 1%). Strokes were rare
occurring in only 0.2%.A diagnosis of emphysema or
chronic obstructive pulmonary disease (COPD) was
noted in only 2%, while lung cancer occurred in only
3 patients or 0.3%. Peptic or duodenal ulcer disease
was noted in only 5%, while diabetes occurred in 3%.
Epilepsy was noted in only 1%.

[BrianK]

On 12/14/2018 at 8:16 PM, Brain on fire said:

Hello BrianK and welcome. I have narcolepsy. I enter REM within minutes of going to sleep. My clusters always come at night. I keep a very strict sleep schedule. An hour before I go to bed I do a dim down. Turn off TV, computers, LED lights, bright lights, stay away from cell phones and reduce stimulation. I'm asleep 5 minutes after I get in bed.

By any chance have you had a night time sleep study (polysomnography) or a daytime study (Multiple Sleep Latency Test) MSLT?

I was supposed to have a sleep study once, but it didn't pan out with scheduling.  It usually takes me around an hour to fall asleep, though I have at times fallen right into it.

 

On 12/15/2018 at 12:23 AM, CHfather said:

This is from Todd Rozen's report in 2011, based on surveys filled out by more than 1100 people with CH, "Cluster Headache in the United States of America" (he reported there that more than 70% of people with CH had a history of smoking, a figure confirmed in other studies)

Interestingly, a very
low percentage had known cardiovascular disease
(myocardial infarction 1%, bypass surgery 0.3%, and
coronary stent placement 1%). Strokes were rare
occurring in only 0.2%.A diagnosis of emphysema or
chronic obstructive pulmonary disease (COPD) was
noted in only 2%, while lung cancer occurred in only
3 patients or 0.3%. Peptic or duodenal ulcer disease
was noted in only 5%, while diabetes occurred in 3%.
Epilepsy was noted in only 1%.

Thank you, CHFather.  It's good to know at least some statistics are positive.  :-)