Hello CH family,
I am new here and looking for a bit of insight.

I am a 29 year old female and live in Arizona. I am a patient at a world renown neurological facility (Barrow Neurological Institute), due to one of my other health conditions (more on that below).
I recently began experiencing headaches that I have come to realize have numerous symptoms that fall into the CH genre. In fact, I answered positively on nearly every question of the “Cluster Quiz” on this site. Additionally, my neurologist gave me an official diagnosis of ‘intractable cluster headaches’. Only thing is, I am not so convinced that what I have experienced actually is a cluster headache…which is what brings me here looking for insight of those that I consider the true experts on the topic; those that actually live it, as versus those that read about it in textbooks (not discounting my physician by any means, but I really feel as if patients have a far better insight on many topics).

So, here is where I stand:
About 2 months ago at approx 9am, I experienced ‘the first event’. Here’s a brief synopsis of what happened:
•      About 10 minutes worth of “I have an ice pick stabbing into the area above my eye”
•      Next: VERY rapid onset of the most excruciating pain I have ever experienced (about 15 seconds to full intensity)
•      Also came with red conjunctiva, lots of uncontrollable tearing, stuffy nose, fluid running down into my throat from my nasal area, the feeling of a foreign object being in my eye, droopy eyelid and a visible deformation of the muscles above my eyebrow; it almost appeared swollen or as a lump at appeared. So much so, that I took a picture of it, as the intensity was starting to calm, as to show my doctor. All pain and symptoms were on the left side only.
•      As this was happening, I was pacing back and forth – I’m not entirely sure why, as that is not typically for me. But it seemed along the lines that I was doing it because I could not figure out what to do in order to ease the pain.
•      These very intense symptoms lasted for approx 30 minutes. I was not necessarily “totally incapacitated”, as I remember getting a call from a friend, hitting the ignore button, then 2 minutes later, sending a text back that said ‘hve to call baqk’ worst hed pain ever came on in 15 secons’ . Mind you, I am typically the type that texts in complete sentences, perfect spelling and all appropriate punctuation. So this text alone was very telling of my current state.
•      For a good portion of the day after this even (at least 5 hours) I had a fairly intense general headache. I kept telling my husband that I felt as if I had a “Charlie-horse” above my eye.

Now, why I am hesitant to say that the diagnosis of CH is accurate:
This event was about 2 months ago and I have had several similar events, but they are varying times of day, no specific regularity (not every day) and none have been quite the intensity of the first. So in the 2 month period, I would say maybe 15 similar events. Only 1 that I can recall was with the same day as another. Some are the middle of the night. Most are 4-7pm. Of the additional events that I have experienced, the peak intensity was maybe 70% of the first, but the average is likely around the 50% of the first. Unfortunately, they appear to be increasing in frequency, but not necessarily intensity (staying around 50% of the first event). These additional events are always on the same side.

Some additional information about me:
I have a very hectic, stressful work situation. I frequently have to work 12 – 15 hour days.
I have severe back problems and take regular doses of Percocet, so there is a potential that this could be masking more frequent events, or even causing events. Though I have not seen a correlation to the time that I do / don’t take my medication in conjunction with when I have these headaches.
I experience another type of headache on a nearly daily basis. This is more of a pressure type headache with side shifting, lasting for 5 or more hours, with an onset of approx 3pm every day. No additional symptoms that are commonly tied to CH with this one, though.
Within the last 3 months or so, I have been experiencing severe ‘brain fog’ episodes a couple times per day, lasting a couple hours at a time. (As in 'stops you in the middle of your sentence' severe). Additionally, I seem to be having cognitive issues and some memory loss. These symptoms are increasing at a worry-some rate.
I am a pituitary adenoma (primary brain tumor) patient – more specifically: Rathke’s Cleft Cyst, which is a cystic growth in the posterior (back) portion of the pituitary region. The pituitary gland controls many of the body’s hormone functions, for those who are unfamiliar. I had surgery to remove my adenoma about 3 years ago, and it has since reoccurred / is about half the size it was when I had my surgery. In conjunction with this condition, I also have a secondary condition caused by the first, called diabetes insipidus. No relation to sugar diabetes. Rather this condition causes you to have an essentially incurable thirst and be highly acquainted with wherever the nearest restroom happens to be. I recently attended a seminar, in which they stated that pituitary tumor patients are 33% more likely to have one of a few types of headaches: Migraine, Tension or one of the TAC genre headaches.

As my neurologist was already seeing me for other issues, I was quick to be given a diagnosis of CH, after explaining the first few events. So, she ordered Oxygen for me, but I am fighting to get the insurance to cover it, likely because my history does not show sufficient /regular enough history of occurrences. So, I am yet to know if that will help me in whatever it is that I have going on. I am honestly thinking I may pay out of pocket, so I can at least try O2 when I encounter additional episodes. She also prescribed lidocaine solution to drip into the nostril (have yet to try that one) and prednisone to try to break my headache cycle (just starting that now).

If anyone has any insight on if they feel my situation may or may not fall within the context of CH, I am glad to hear your thoughts. Additionally, I would be grateful to hear the “how it started” experiences of others, as most of what I have read through on the board are well established CH sufferers, likely due to the often long time frame for diagnosis.

Thanks for your help and well wishes for all!

Hi and welcome

Headaches are complex to diagnose and treat which is why we always direct people to a headache specialist who has the appropriate skills and experience. With the other neurological issues you have it makes it even more complex. So for the diagnosis you need to rely on the experts and not on us. Whilst we're pretty experienced at living with CH, treatments, etc., the diagnosis / confirmation is not something we can do.

As per Bob's post there are multiple other possible medical causes of CH symptoms, so part of the diagnosis is not just confirming the CH symptoms but ruling out ALL other possible causes (the tricky bit).

It is also very normal for CH symptoms to not be a perfect match to the textbook (Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or ) definitions, especially at first when CH seems to be developing. I remember when I first started that the headaches were pretty painful, but not a patch on what they got to, plus the duration started off a lot shorter and developed over a few months.

The pacing description is interesting too. People with CH frequently need to pace, rock or do similar movements (quite a contrast to a migraine where you don't want to at all). From experience, it just seems better to not be still but no idea why.

Similarly whilst many descriptions cover people getting most CH in the middle of the night, not everyone does.

The best we can probably say is that your symptoms as described are consistent with the symptoms that someone just starting with CH might experience. So a "could be", that is all. It really needs that medical diagnosis to be confirmed.

All, thank you very much for your welcoming and thoughts around my circumstances.

Would anyone happen to have any insight on "average" (using this term lightly) time frame in which a "typical" CH sufferer takes to fall into a somewhat regular pattern of occurances? Or is it more along the lines that every situation varies significantly? Or perhaps that most cases are somewhat regular at onset? I tried finding patient testimonials and / or physcians peer review literature on this topic,  but did not come up with much.

Also, would anyone be able to point me in the direction of a reasonable solution to O2 that is available to be taken with the user (practically). I understand that concentrators are not an appropriate solution, due to not being 100% pure oxygen and not being able to provide the necessary flow rates.

Thanks again.

Ashloo wrote on Jun 28^th, 2016 at 3:59am:


I've not seen anyone mention an average time for someone to migrate to "classic" CH symptoms when they first start. People posting here have mentioned periods covering weeks, months and even years, which may also depend on if the person if chronic or episodic, including the length of their cycles.

Even if there was an average time of say 6 weeks, it wouldn't really mean anything if you were under or over the average.

Since you have a complex neurological history even if there was an average for someone with just CH and even if it meant something, then your complexity would mean that the average wouldn't really be applicable. So I'd would not worry about this.

For the oxygen question, read up about it at Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or .

In contrast to Bob, I found aborting with oxygen to work very well for me. I had it at home, plus when out and about I had a small cylinder that I'd put in a backpack along with my mask, regulator and Red Bull supplies. Most of the time this was either in the car, so just a few minutes away, or under my desk at work. The only place I didn't rely on it was when flying, but if going somewhere I'd arrange O2 at the destination.

I'd give O2 a try and see how it works for you but being aware that there are alternatives, like using imitrex injections / nasal spray.