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Do I have CH ?


SCiMMiA
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Hi, my first post here :)

Here is my story...

Since 2012 I am suffering from weird headaches. It started with occasional pain in my left eye and it increased in both intensity and frequency until 2021. I started to consult in 2021 because I could not tolerate it anymore. I had all kind of test done like scans, eyes exam, blood test etc.. nothing is wrong I am 100% healty.

I have read many post here and many articles on internet and I feel like I have CH but I am not 100% sure. When I get an attack it start around 1pm or sooner and can last until 9 or 10pm. When I read about CH, it should last only like 1 hour. When you guys describe the pain, you say it is like a pike behind the eye. I am really bad at describing what I feel but it is more like a constant pressure behind and around the eye and larger that build up slowly over the hours until it reach its peak. I have these attack all year around, it never stop (the number of attack increased between 2012 and now). I am now at around 6 attacks per month. When it happens I have often my left eye running and my nose is congested but runny at the same time.. very weird. At its peak, I end up in the bed banging my eye and wiggling in the bed trying to think and do something else to forget about the pain until I finally fall asleep from the pain and exhaustion. I am not thinking about suicide, I am ok on this side. But I would say I am, on a pain level, at 80% before I think about killing myself. I am not sure if this last sentence means anything since my first language is french, but let's just say I can take a little more before I would act. So this is about what I live with since a couple years...

When I consulted about 1 year ago, they said I had migraine and gave me some rizatriptan and almotriptan. I tried both, rizatriptan worked but makes my left arm numb. Almotriptan do work and I am taking this for 1 year. So everytime I start to feel the pain coming, I take almotriptan and the pain stop after 1 hour. Only once I had to take 3 doses to finally have a relief but at the same time it was the WORST attack I had even with the meds.

One thing I really hate is that even if almotriptan is very helpfull because it makes the pain stop instead of building up, I still feel bad most of the time between the attacks. From what I read here, I think you call this shadow but I am not sure if it is what I feel. What I feel is like if I was depressed with a small pain in the eye like if I was looking through a box. I don't want/can't do anything. All I want to do is stay on the couch. It is really bad for my life because I feel like i am useless and like if I am a depresed person. But aside from that "pain", all my life is a dream. I love my job, I love my family, I have no money problem, everything is awesome, I have no reason to feel depressed. Sometimes, maybe 3-4 times per year I get a couple days without attack and without any symptoms. When those days happen I am a totally different person ! I have no pain so life is beautifull and I can do all I want until the next attack ! So considering this, I am pretty sure that it is this pain that makes me depressed like that and without pain, life would be awesome.

I talked about CH to my doctor and he said I had a couple of the symptom to say I do have CH and when I told him I had 6 attacks per month, he gave me verapamil at 3 dose of 80mg per day. I am taking this for 2 weeks now and still had 3 attacks since, so I am really wondering if I really have CH or something else...

 

 

Sorry for the long post...

From your experiences, do I have an atypical form of CH or not CH at all or... I don't know ?

What about the feeling I keep between the attacks ? That is what kills me the most.

 

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Me: Not a qualified diagnostician. But from your description I would say if it is CH, yes it sounds a bit atypical regarding the duration of the attacks, and maybe the pain level too. I've noticed that after many years, the attack durations can extend to a good 3, or a bit more, hours for many of us, but 8 hours sounds especially long.

The fact that it responds to triptans does make it seem at least cluster adjacent though. And it makes it sound to me like it may very well respond to the D3 regimen and busting, which can bring some impressive preventive relief for both full blown attacks and shadows. Many find that ginger tea or pills can relieve shadows BTW.

If you're interested in busting, info on it can be found at the blue New Users - Please Read Here First banner above. ^^^^

 

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2 hours ago, Bejeeber said:

Me: Not a qualified diagnostician. But from your description I would say if it is CH, yes it sounds a bit atypical regarding the duration of the attacks, and maybe the pain level too. I've noticed that after many years, the attack durations can extend to a good 3, or a bit more, hours for many of us, but 8 hours sounds especially long.

The fact that it responds to triptans does make it seem at least cluster adjacent though. And it makes it sound to me like it may very well respond to the D3 regimen and busting, which can bring some impressive preventive relief for both full blown attacks and shadows. Many find that ginger tea or pills can relieve shadows BTW.

If you're interested in busting, info on it can be found at the blue New Users - Please Read Here First banner above. ^^^^

 

Hmmmm yeah I saw the new user thing but I am really not interested about that not so legal "busting" thing... 

But for the D3 regimen, I see many people talk about this but I can't find what it really is ? I think it is something about vitamin but what is it really ? How it works ?

 

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Posted (edited)

SciMMiA, your English is excellent, but I'm not sure I completely understand everything you have written.  As Bejeeber says, the long duration of your primary attacks does not sound like it is CH, but the fact that a triptan helps, and the eye/nose symptoms, suggest that it is at least in the same category as CH.  Are you also saying that in addition to the six bad attacks per month, you also have some "small" pain every day, and that pain is mostly associated with your eye?

If you do have CH, then you should have oxygen, and you should probably have a triptan that is not a pill but is either an injection (called Imigrane in France, I think) or a nasal spray (which I think is called Zomig in France).  These triptans will stop your attack much faster than a pill, and if you are only using them for attacks about six times a month, you should tolerate it okay.  Oxygen will stop a CH attack pretty quickly and it is not as potentially harmful as triptans.  Oxygen is inhaled through a mask, coming from a tank/cylinder/cannister. Oxygen and triptans are the recommended treatments in the European Union for stopping a CH attack.   Verapamil is the recommended medicine for preventing attacks.  You have to take it for several weeks before it becomes effective, so you don't really know yet.  Your dosage is in the low range, so your doctor might be going to increase it. That is the way that verapamil is correctly prescribed, starting with a somewhat low dose, monitoring for side effects, and then increasing as needed. Some people need three or four times as much as you are taking before verapamil is fully effective.  You could also try the CGRP drug Emgality. 

As Bejeeber has said, the Vitamin D3 regimen and busting are often very helpful for a variety of conditions.  They have fewer side effects than the medications I listed above.

There are some people here who have both migraine and CH, sometimes at the same time, or one directly following the other.  This is a possibility.  Another possibility is some kind of hemicrania (hemicrania continua (HC); paroxysmal hemicrania).  These look a lot like CH, and HC includes a constant headache.  But . . . usually they do not have such long-lasting attacks as yours, and usually they do not respond to triptans.  Have you seen an eye doctor to rule out a headache associated with an eye condition?

 

 

Edited by CHfather
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7 hours ago, CHfather said:

This is where you can find the information about the D3 regimen.  It might be a little hard for you to get through in English.  There is a list/table there showing the basic ingredients.  https://vitamindwiki.com/Cluster+headaches+substantially+reduced+by+10%2C000+IU+of+Vitamin+D+in+80+percent+of+people

It is weird, I replied yesterday here but my message disapeared...

So... yes the everyday pain is in the left eye and I did see an eye doctor and everything is fine.

I am not from france, I am from Quebec/Canada ;)

And thank you for the link, I will check this out.

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3 hours ago, SCiMMiA said:

I am not from france, I am from Quebec/Canada

Silly of me to have assumed France!

Just making sure you saw my earlier, longer message in this thread.  Being in Canada, getting oxygen and a more effective triptan should not be that hard.  You could also consider a course of prednisone, which will usually stop CH attacks for some days.  

The everyday lower-level pain might add something to the suggestion of hemicrania continua (HC), and you could test the drug that stops HC, Indomethacin.  

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3 hours ago, SCiMMiA said:

I am from Quebec/Canada

11 hours ago, SCiMMiA said:

I am really not interested about that not so legal "busting" thing... 

Personally I recognize there can be legit reasons for some people to avoid busting, and I don't want to push it on anyone - you might get great results with the D3 regimen alone - but if this source is correct, magic mushrooms are legal for medical use in Quebec and other Canadian provinces

 

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18 hours ago, SCiMMiA said:

describing what I feel but it is more like a constant pressure behind and around the eye

This part sounds to me like a tension headache but the duration is still off.. most tension headaches last around 2 hours or so. I have had some pretty lengthy CH attacks (longest I remember was almost 6/hrs.). The other part where you say you lay down and wiggle around until you can fall asleep is also a bit different as a lot of folks with CH can't handle laying down and most can never fall asleep exhausted or not. Instead we pace, kick out at each spike, curse a lot and of course rock back and forth.  If the pressure you speak of is the sort that leads you to believe that at any moment you may be holding your left eyeball in the palm of your hand then you may be suffering a CH attack. I am not saying it's not CH and am most certainly not qualified to diagnose squat, but the way you describe it sounds a little different. Sounds like some nasty relative of CH though... The previous responses have pretty much all the info you need to start trying to get this issue under control and I most definitely second the D3 regimen as it can't really hurt to pump yourself full of good vitamins. The oxygen is also something worth trying and has been scripted to some with migraine (my sister had a bad eye that caused her terrible migraine and they gave her oxygen) eventually the eye had to be removed as it was so cataract ridden it couldn't be saved but she didn't have to be diagnosed with CH to get oxygen. I sure hope you get this sorted out! Wishing you some pain free days!   

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If it is hemicrania continua, which from what I just read could be it. Would it react to the almotriptan I take ? Almotriptan do work after 1 hour, it remove the severe pain.

 

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Posted (edited)

Theoretically, the triptan shouldn't help.  But there are some people with HC who do have positive results from triptans. 

I don't think that multi-hour attacks are common with HC. 

Edited by CHfather
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33 minutes ago, SCiMMiA said:

I guess the only way I will find out is to try everything one by one until something hopefully gives me a relief.

My suggestions . . . . 

If you can, I would start with oxygen. If it works, you have a good, side-effect-free way of stopping your bad attacks, and you also have a pretty reliable indicator that what you have is CH. (O2 will sometimes help people with migraine or HC, but usually doesn't.)  Sometimes you have to give O2 a couple of tries, but you should be able to tell pretty quickly whether it's helping. You can still use your triptan if O2 doesn't work, and you can request a more effective triptan (injected or nasal) to stop attacks more quickly.

You can also start the D3 regimen, since it isn't contraindicated with other things. 

If your doctor is willing to support your discovery process, you could do an Indomethacin test at the same time as O2 and D3.  Since Indo is a preventive for HC (and some other "atypical" pain syndromes), it's not going to effect what you learn from using the O2 as an abortive, and its impact should be pretty quick, whereas it usually takes a while for the D3 to get to a high enough level to substantially prevent attacks.  If you are going to request Indomethacin, I would suggest reading up on dosage (google Indomethacin and or HC).  Some reports say that Indo works within a few days, but (as I remember it), others suggest you need to give it a couple of weeks to be sure, starting with a lower dosage and going up as tolerated.  As you might have read, Indo is hard on the guts (for some people), so it is often recommended that it be taken with a med that protects the stomach, such as prevacid or nexium. 

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