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Newly diagnosed CH


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But how do I really know that it is CH? 

About 6 weeks ago I started getting this headache every single day around the same time (2pm).  It would start in behind my right eye mainly at first and my jaw and sinuses would hurt. Light sensitivity and it would then encompass my entire head and back of neck. Even trying to move my head intensifies the pain.  This has continued on for 6 weeks now and the only thing that helped was going to sleep (I was taking Benadryl thinking it was allergies, Tylenol that didn’t remotely touch the pain, I tried stopping caffeine and adding back in. I can’t use ibuprofen. I tried more water intake and even not skipping meals. Nothing alters the headache and once they start i have to sleep it off, and with that sometimes I wake with the headache even worse. I finally saw my PCP the other day and they said it sounded just like CH and prescribed Imitrex and said I may possibly need O2 or IV treatment if I can’t get under control with Imitrex.  

So far Imitrex does lessen the intensity of the headache but I can tell it’s still there. Almost the way it feels as it normally starts, but doesn’t get beyond that. So I don’t know that I’d say that’s successful.

Does this sound like CH to you guys?  

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...if it is....it's an odd form..but we are an odd bunch..... everyone the same yet different...

.... typically the need to move is nearly uncontrollable..moving doesn't make a hit directly worse....or better (except for distraction....)...

....sleep!!!???.... can't see how...many a clusterhead has prayed to just pass out from the pain w/o success...

.... what sounds like many hrs long is unusual (for me only with a very rare 10....)....not at all unusual to wake up with a new hit tho (and some experience what could be described as wax/wane of same unresolved hit)....

....if yur Doc knows about Oxygen it should have been #1 priority ...with Imitrex back as last resort abortive....NOT meant to be a preventative....




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cant hurt to try oxygen. I used to always think going to sleep was the only way to deal with them as well. what i would actually end up doing is just taking enough over the counter whatever to incapacitate myself from trying to fight the pain and just cringe in bed for 90 min until i pass out..


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The clockwork regularity is a feature of CH that is not common to other "headaches," at least as far as I know.  Of course, it is possible that you are doing something before 2:00 every afternoon that brings on a severe headache, but I don't know what that would be (eating food with MSG in it would be one possible example, though nothing really explains the severity).  As jon' said, being able to lay still or go to sleep is very uncommon. "Restlessness" is in fact a diagnostic symptom of CH.  Other CH symptoms include tears from the affected eye, redness in that eye, swelling in that eye and a drooping eyelid on that side. Also runny nose and pale skin.

Without a different diagnosis, you of course need to treat it as CH.  I have the feeling that maybe your Imitrex is a pill.  If it is, it will be a very little value. As jon' says, Imitrex (sumatriptan) is meant as an abortive, to stop an attack, not as a preventive, to prevent an attack.  If it is in pill form, however, you should almost treat it as a preventive, taking the pill about an hour before your expected attack, but, more importantly, (b) you should get the injectable form of Imitrex, which will stop your attack (if you have CH) when injected right at the start of an attack.  In any event you can't "get it under control" with Imitrex. In fact, the more Imitrex you use, the more likely it is that you won't get it under control.

Oxygen is a must!  Insist on it, right away.

I'm not sure what the "IV treatment" you refer to might be. There are some, but they're not usually used this early in the process.  However, your doctor might have been referring to a steroid, typically prednisone, which when taken in sufficient doses can stop (temporarily) the pain of CH.  It comes back, but you get some relief and time to organize your other treatments.  Right now, you have no preventive (verapamil is often prescribed as a preventive, and many or most people here have found that the "vitamin D3 regimen" is a very effective preventive.  They both take time to work.  (There is more information about both verap and D3 in the document I refer you to in the next paragraph).

You might try quickly drinking an "energy shot," such as 5-Hour Energy, at the first sign of an attack. For many people, but not all, that will reduce the severity of an attack and possibly even stop it.  Strong caffeine helps some people.  Some people get very good benefit from taking Benadryl, 25mg four times a day.  There are many other suggestions, of varying value,  in this document: https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/  I would urge you to follow the links there.  I'm sorry it's so long, but I wanted to get down most of what I could provide to someone in your situation.

You asked, "How does oxygen help?"  Not sure anyone knows the exact mechanism, but oxygen, properly set up and properly used, aborts attacks, typically in less than 15 minutes and often much more quickly than that.  More info in that document I just mentioned.

Edited by CHfather
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@CHfather is absolutely right, listen to everything he says. 

I can't stress enough how important oxygen is for the treatment of CH.

I can't say for sure you have CH, I am not a doctor.  But I think CHFather is right that you should treat it like you do have CH and would strongly recommend you try out oxygen.  I suffered with CH for 7 years before I got O2, and things completely turned around for me once I did. 

Imitrex is a good starting point, but I can abort a headache with O2 with no side effects in about 10-15 minutes.  Imitrex makes me feel tired and terrible and can make things worse if you take it every time you get a headache (every day).  

My understanding of how oxygen works is that it has vasoconstrictive properties that cause the blood vessels pressing on the trigeminal nerve to constrict (get smaller) and stop pressing on the nerve.  I am not a doctor, however, and this may not actually be the case with oxygen.  Not a lot about how it works is actually known.

At any rate, some of your symptoms sound like what happens to me.  The hard thing here is that nobody has the same symptoms and triggers.  Like @jon019 said, we are all different, yet the same.  2pm is a normal headache time for me, I call them my "cluster times" (mine are 2pm, 6pm, 10pm, and 90 minutes after I go to sleep). I can practically set my watch to it.  There are others that are triggered by any number or combination of things, and you are going to have to find out what yours are.  Some of the medical literature says clusters don't have triggers, but that is not true.  For example, alcohol is a trigger for a great number of us. 

To make matters more complicated for you,  you describe other symptoms that are not necessarily unique to CH.  Some of what you describe we know here as "shadows," and there is almost nothing in medical literature about them, but most of us have them.  There is a feeling in your head before you get hit with the intense pain, and it acts as a warning about what is coming.  When the pain comes it is searing or hot and located behind your right eye.  That pain starts migrating into the orbital area and reaches down into your sinuses and your jaw on the same side.  That is because the trigeminal nerve attaches to all of those places, and is the nerve that causes our cluster pain.  (CH is one of a group of conditions known as Trigeminal Autonomic Cephalagia)

Also included with the cluster attack is a profound tension in the neck.  This created issues with my diagnosis of CH, because it is part of the mechanism in migraine as well.  I have seen no medical literature on this, but anecdotally I have a few cluster buddies that talk of their "cluster knot" in their neck or shoulder while they are in cycle and complain of the almost painful tension in the neck and shoulder.

I also have sensitivity to light, especially where there is a large contrast (ex: oncoming car headlights at night).  

As far as the sleeping it off goes, I can only do that with shadows after an attack.  However, napping is a big time trigger for me, so I can't take a nap unless I want to get hit with a 10 later that day.  When I did nap, I would wake up with that familiar feeling behind my eye.  This is present for me any time I take a nap, even if I was feeling fine before I went to sleep.

Also, you need to start keeping a headache diary.  This is important because if it is CH, chances are that they will suddenly stop one day, only to return later down the road. There are 2 types of CH, episodic and chronic, and most people (75%?) are episodic.  Keeping track of your headaches, descriptions of the pain, what you ate that day, weather conditions, stressful events, etc. can help you determine what is going on.  That is good information to have even if you end up not having CH. 

I apologize for this being so long, I hope it is helpful.

I hope you don't have clusters.  But if you do, you are absolutely in the right place.  There are a lot of people here who understand and are happy to help you.  Your first step is probably to get some O2 to try. 

A question for the experts: If you can abort your headache with oxygen, doesn't that indicate that you do have CH and not one of the other TACs or migraine?

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1 hour ago, CHChris said:

A question for the experts: If you can abort your headache with oxygen, doesn't that indicate that you do have CH and not one of the other TACs or migraine?

Not an expert, but I've looked into this a lot.  It does "indicate" what you say, but it is not conclusive.  People with other "headache" conditions sometimes get relief from oxygen.  For example, a notable "headache" expert wrote some time ago (2007), " I have found approximately 50 percent of my patients with migraine headaches will be able to achieve some relief with oxygen therapy. They use 100 percent oxygen for eight to nine liters a minute for up to 30 minutes."  https://headaches.org/2007/10/25/oxygen-therapy/

If that was true, would more people have better results with higher flows/better masks/etc??

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