Helping women with chronic illnesses

Cluster Headache Or Migraine?

If you are the type of person who is bothered by graphic descriptions of things, you may want to skip this post. I just wanted to warn you up front rather than upset anyone.

I have been blogging less lately because I have not been feeling well. That last sentence reads like a major understatement.

On January 21st, my head pain began. Initially, I thought it might be a “high blood pressure headache”. I had had this lovely phenomenon happen once before and took my blood pressure to see if it was high. It was higher than it should be (despite my medication for hypertension that my doctor put me on after that “high blood pressure headache” the summer before last where, if you’ll excuse the expression (warning if you are the queasy type)… it felt like my eyeballs were going to pop out. This time that didn’t happen. I look back now, though, and wonder if that was a “high blood pressure headache” after all. But I digress.

Here’s another warning. It’s not too late to turn back if you think you might get queasy. By about day 5 (January 25th, I believe), I was walking through the kitchen and very suddenly had the sensation of someone taking an axe to my head. It literally felt like someone chopped the right, front part of my head with an axe as hard as they could. I almost fell down when this “axe blow” occurred. It was scary; I had never had anything like it before. It was very sudden and it definitely got my attention.

On January 28th, the pain finally eased up and I was almost free of head pain. That day I happened to (thank goodness) have a regularly scheduled follow-up appointment with my primary care physician. She was hesitant to pinpoint a label 100% (which was fine by me as I have enough diagnoses). Honestly, my main concern was making her aware of what just happened just in case we need the information for future reference. Trust me when I tell you that I’m hoping this was a freak thing and I hope it will not become any type of pattern.

She narrowed it down to one of two things… cluster headache or migraine. [Please note: I am fully aware from having a great many friends who suffer with migraines that headaches and migraines are not the same thing].

In any event, the “axe incident” only happened once (which was enough for me!) in the week I had head pain. The remainder of the week my head hurt so badly; the vast majority of time the pain was intense. There were pockets of time it was less intense but stubbornly not going anywhere. So, Thursday and Friday it was 99% better. In the middle of the night last night, my head started to hurt again.

I am grateful that I had acupuncture Friday because I would bet my head would be hurting even worse if I hadn’t. So right now, I am just hoping that my head pain isn’t ramping up.

One thing I forgot to mention is that when this head pain began I was coming off of an eleven day period. I am all too aware of the impact hormonal changes can have on migraines from so many years of watching my friends with endometriosis suffer. It has not escaped my attention that I recently turned 41 and that I could very well be having some sort of perimenopausal issues.

My primary care physician seemed to be leaning towards cluster headaches over migraines but wasn’t ruling either in/out at this time. She did say that if I have symptoms like the “axe incident” again that I should get into her office right away to have high-pressure oxygen administered.

I feel kind of silly even writing about this when so many people I know have struggled with such pain for years on end. I just wanted to explain where I disappeared to.

This post was written by Jeanne at Copyright Β© Jeanne β€” All rights reserved.

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Reading: Cluster Headache Or Migraine?


1 YayaNo Gravatar { 01.31.10 at 5:10 pm }

Ouch!!!!! Sounds so painful. I really hope this doesn’t become a regular occurrence. Let’s hope it’s just some random thing that will go away and never ever come back!
.-= Yaya´s last blog ..Orange You Glad It’s Saturday?! =-.

2 EndochickNo Gravatar { 01.31.10 at 5:45 pm }


You and I spoke about this, so you already no my thoughts. I just want you getting better and feeling better lady! Get some rest when that head gets a thumpin’! Whether it’s a migraine or a cluster headache, the latter sounds more likely, it’s nothing to mess with. Hoping it doesn’t return for you.

.-= Endochick´s last blog ..Speak Up! =-.

3 JNo Gravatar { 01.31.10 at 9:08 pm }

Oh Jeanne! πŸ™
I really hope that the axe incident and the headache over those days are both one time incidents and you don’t have to deal with them…. those aren’t fun. I’m so sorry you were in so much pain, and that you had to deal with that. πŸ™
.-= J´s last blog ..Wordless Wednesdsay Legos!! =-.

4 JeanneNo Gravatar { 01.31.10 at 11:54 pm }


Yes, ouch!!!!! I hope this was an isolated incident. My head started hurting again in the middle of the night last night and has hurt all day today but, thankfully, nothing like “the axe incident” has occurred. I really, really hope that was some odd, random event. I can’t help but look back at the incident the summer before last when my eyeballs felt like they were going to pop out of my head and wonder if that was actually a cluster headache. (I hope not)! From talking with a few of my friends this past week who get many different types of migraines and headaches, I have learned more about them than I knew before. Now don’t get me wrong. I like learning new things. However, I have to admit that learning new things in regard to health problems by living them is getting a wee bit old. I have enough diagnoses already and would be very grateful not to add another one to the roster. I have always had the utmost empathy for my friends who suffer head pain from various causes. Did the past week increase my empathy? Of course. That’s how these things go… You “get it” much more if you can relate to it on a personal level than by just observing others or hearing others’ experiences. I don’t pretend to have a CLUE of what my friends who have dealt with migraines or cluster headaches have dealt with (many for years and years) because I know I don’t have a clue. I do know that I will be grateful if the “axe incident” doesn’t recur.


Yes, thank you for your input this week. I knew you had tons of experience with this type of thing. Yes, I would like to feel better. I have so many illnesses hitting me at once right now. I’m just trying to keep my bearings and not panic at the prospect of another health issue joining the already-too-big pack. Yes, I have been resting a LOT! My body gave me that order and listening was not optional. It’s interesting that you think cluster headaches are more likely. My PCP wasn’t ruling either one in/out but my perception was that she is leaning towards cluster headaches as being more likely. In addition to her instructing me to get in there immediately if anything like the “axe incident” happens again to get the oxygen treatment, she mentioned that increasing the dose on a medication I already take for my neurological problems might be an option for my head pain. Well, that could get interesting since I lowered the dose after my daytime drowsiness issues resulted in me falling asleep at the wheel. (Fortunately, I woke up immediately when I felt my car start to drift into the next lane but this, needless to say, is not acceptable!) There is a narrow window between my current dose and the dose that caused that to happen. If I raised it, it would be a VERY slight increase and I would not drive until I was 100% sure it was safe at the slightly higher dose. Let’s hope I won’t have to worry about it. (My doctor just likes to plan ahead and be prepared. She’s proactive). She’s also very intuitive and smart. So, I have to tell you that I am trying not to be anxious about the discussion I had with her (which included the discussion about perimenopause and the fact that this could be “the beginning” of a new pattern). I so hope that it is not. I think what’s bugging me is that my doctor is extremely good at reading between the lines. So, I am all-too-aware that this MIGHT be the start of a new health challenge. I hope not.


Hi! I hope the “axe incident” was a one-time thing. Once was enough for me. As I mentioned above, my head did hurt all day today. I am hoping that it goes away quickly and stays away. No, it the “axe incident” was not fun. Thank you for your support. This is one of those times where I try HARD not to read to much into it (i.e. new diagnosis). Yet, at the same time, I realize that if my PCP narrowed it down to one or the other that it’s probably just a matter of which one it is. She certainly didn’t seem to come across like she expected this to be a freak, one-time thing. So, it would appear that one of these lovely diagnoses may be about to be added to my “list” at any time now. As I have a large number of chronic conditions already, clearly I would prefer not to lengthen the list. Right now, I’m bracing myself. Thanks!



5 AmandaNo Gravatar { 02.01.10 at 2:43 pm }

Sounds awful, you poor thing! I don’t suffer from migraines very often, but have headaches very regularly (although saying that, sometimes my vision is going and I still refuse to admit it is a migraine purely out of stubbornness, but honestly I get them rarely nowadays)… sometimes it’s the randomness of things that scares us the most, so I do hope you are taking good care of yourself…

Just popping by also to say I’ve added the link but need to edit the layout a bit. We’re fine over here, got to go Tim is calling me for dinner but wanted to check in! (Also, do let me know if you’re interested in my unofficial “readers panel” once the book gets a certain amount to it, you might like it, but no pressure at all!)
.-= Amanda´s last blog ..Busy, busy, busy =-.

6 JeanneNo Gravatar { 02.01.10 at 7:13 pm }


It wasn’t fun. I have now locked the axe back up in the shed. Here’s hoping no one else knows the combination to unlock it! Now, on to your migraines. That doesn’t sound like fun. What’s with this “stubbornness” you mentioned in determining what to call your head pain? You might as well call a spade a spade, no? I’m sorry for your head pain… whatever you elect to call it. πŸ™ Yes, I have been resting much more than usual. I certainly don’t want to do anything to trigger trouble!

Thank you for posting the RESOLVE badge on your blog. It looks great. I’m not sure if you edited before I got to it or what but it looks fine to me! I hope you enjoyed your dinner. Thanks for checking in. I had glanced at something on your blog about a Readers Panel but never got a chance to read it completely. (Sometimes my speed-reading skills fail me). I’m not sure how much reading is involved but I might be able to help you. Just let me know the details when the time comes. πŸ˜‰


7 p1nkg0dessNo Gravatar { 02.01.10 at 7:52 pm }

What a horrible, debilitating symptom! I hope that the intensity was a one time thing and will not return again. I am sorry that the pain is continuing, though it is lucky that you have had opportunity to rest during this time. Great to hear that your doctor is so on top of things! Wishing you relief!
.-= p1nkg0dess´s last blog ..Resolutions =-.

8 JasmineNo Gravatar { 02.01.10 at 11:14 pm }

Oh, you poor thing. If it turns out you’re experiencing Cluster, I hear oxygen therapy can do wonders. I tried to ask for it for my Migraines, but doc said only for Cluster (grr!). Gentle hugs.
.-= Jasmine´s last blog ..What U.S. Senator Diane Feinstein thinks about Bisphenol A (BPA) =-.

9 JeanneNo Gravatar { 02.02.10 at 1:00 am }


It definitely got my attention. I hope it was a one time thing too! The general (non-axe) head pain is better now than when I woke up today and it was better when I woke up than it was yesterday. So, I am grateful! I definitely think it helped to get extra rest. Yes, my primary care doctor is wonderful. I am very fortunate to have her. With so many different illnesses, it’s important to have a good PCP. Thank you so much! I hope you are doing well!


Yes, apparently oxygen therapy is supposed to be very helpful for cluster headaches. I’m sorry that wasn’t an option for you. So your doctor made it sound like oxygen would never be used for migraines… only for cluster? A friend of mine was just talking about this very thing. So, I was just curious. Thank you, Jasmine. Gentle hugs coming back your way!

P.S. Jasmine, on a separate subject… if I remember correctly, you have sleep apnea too? This incident was enough to get my attention to my CPAP problem. To make a long story short, I am either allergic or sensitive to my CPAP headgear. This was the headgear the CPAP provider researched to find/hunt down for me (latex free because of my latex allergy, PVC free because of my endometriosis). Anyway, Hubby and I have taken the thing apart, re-designed it, and put it back together many times now but we finally found a piece we hadn’t seen before (small and hiding) that might have caused my reaction! So, Hubby cut that material off the headgear a few days ago and replaced it with some material I got at the fabric store. So, cross your fingers that THIS will be the time it works. I’m only on night 5 using it and I usually have a reaction at about night 7 or so. So, please cross your fingers. My CPAP isn’t the pressurized oxygen kind. Mine is just pressurized air. (Some people have pure oxygen). I couldn’t help but think, though, that stopping breathing throughout the night can’t be helping matters any! We have been battling with this CPAP headgear for a LONG time now and I want so badly for it to work. I was already bugging my husband to take another crack at it when I saw my PCP the other day. After she brought up oxygen that day, I said to my husband, “we HAVE TO make this work”. Bless him because he took another crack at it. I will be so happy if I can tolerate the CPAP headgear as its currently configured!



10 JasmineNo Gravatar { 02.02.10 at 5:45 pm }

Hopefully there’s research going on for other types of headaches, but for now I was told oxygen therapy is only for Cluster. I also have sleep apnea, and was hoping to get pressurized oxygen for my CPAP, but no luck there either πŸ™
.-= Jasmine´s last blog ..What U.S. Senator Diane Feinstein thinks about Bisphenol A (BPA) =-.

11 JeanneNo Gravatar { 02.02.10 at 5:56 pm }


Gyan had mentioned to me recently that there are something like 155 types of headaches and my PCP was talking about a “headache spectrum”. I guess headaches and migraines can get very complicated. Yes, I was wishing to myself the other day that my CPAP was pressurized oxygen. I’ve made it 6 nights with the newest version of CPAP headgear. I swear we’re on version 89 at this point. Soon I will know if this time will be the charm. When I had seen a pulmonary specialist (who the cardiologist referred me to when a flunked the echo-stress test), he had emphasized that treating my sleep apnea could help ALL of my many illnesses. So, I want very, very much for it to work! It can’t be helping things that I stop breathing throughout the night (with brief exceptions for when I try CPAP again, like currently, and then it fails me again). I really hope this time will be the trick. It doesn’t mean it will prevent whatever happened (cluster headache or migraine) from recurring. However, it certainly will help my overall health if I can just get going on consistent CPAP therapy. The lack of oxygen on the nights between CPAP headgear trials can’t be good for my health. I so hope it works this time!


12 jingleNo Gravatar { 02.03.10 at 12:43 pm }

get well soon,
sad for the struggles, πŸ˜‰

stay upbeat,
be unbeatable, πŸ˜‰
.-= jingle´s last blog ..Bake Me A Pie (Hot Summer Haiku #10-#20) =-.

13 JeanneNo Gravatar { 02.03.10 at 12:54 pm }


Thank you. πŸ˜‰


14 PoobaNo Gravatar { 02.03.10 at 5:05 pm }

Dude, an axe to the head is something you MUST voice concern about. You know what I like about you? Through all your struggles, you are watchful and take care of yourself. You watch for signals, you know what your body is feeling. Some people get into this woe is me phase and try to avoid the problem, which of course only makes it worse. I know you have your priorities straight.

I hope your headaches stop soon!
.-= Pooba´s last blog ..Suck Face =-.

15 JeanneNo Gravatar { 02.03.10 at 8:41 pm }


Yes, the figurative “axe” got my attention alright. Thankfully I have a top-notch primary care physician and I was already scheduled for a regular follow-up appointment with her for right after this happened. So, that was perfect timing. She really stays on top of things and she’s well aware that I already have multiple chronic illnesses to contend with… So, she knows that we need to be proactive and, as you put it, watchful.

Yes, I do try my best to take care of myself. When I was younger and, shall we say, “less wise” I was more likely to push through and ignore/disregard red flags that I didn’t want to see. After all, I didn’t want anything slowing down my breakneck pace! I learned the hard way, though, that it is really important to pay attention to symptoms since they are (quite literally) signs to be monitored and managed (or prevented when at all possible).

I’ve learned that managing symptoms is generally easier if they are addressed early on rather than waiting until they have escalated further. Having been chronically ill since I was 13 years old, I strive to keep as positive an attitude as possible. It is definitely better for me and for my family if I can avoid throwing myself pity parties. πŸ˜‰ I think pretty much anyone who is chronically ill inevitably has some moments where they think, “why me?” if they are being honest with themselves. However, frequent pity parties can be a dangerous habit. I try not to go to that place. I don’t find it productive and I’d rather throw my energy into things/causes I believe in.

When it comes to medical problems, trying to avoid them generally does not provide positive results. I have watched people try to ignore their health problems and the end result of doing so is generally not good! Making the transition from my 20-something self (pushing myself too hard, not knowing my body’s limits, not setting boundaries/taking on too much…) to my 41 year old self (trying to pace myself – not that I always succeed, recognizing and respecting my body’s limits/accepting those limits, learning to say no to people/learning not to do more than my body can handle) has been quite a transition for me! It can be hard work making this paradigm shift. My work is far from done but I have learned the importance of listening to my body.

Some of this comes with age, some (in my case) was learned in the 16 years I attended monthly endometriosis support group meetings (there is SO much to be learned from fellow patients!), some of it I have learned from various health care practitioners, some of it I have learned from fellow patients outside of support groups (both online and in real life), and some of it I have learned “on my own” (i.e. from books, doing my own medical research, etc).

I don’t pretend for a nanosecond to have a corner on the market with this stuff. I do know, though, that I have learned a lot from where I was at in my 20s and not giving my body the respect it deserved (not getting enough sleep, working 80+ hour weeks despite being chronic ill, not setting appropriate boundaries/limits, taking on too much). My habits now are far from perfect but I definitely treat my body with a lot more respect than I used to. Having lived with multiple chronic illnesses for so many years (27 years for endometriosis alone) and having had a few scary times over the years (“health scares”, including issues that were potentially life-threatening), I have gotten to the point where if something happens that strikes me as my body screaming for attention, I listen!

While I have not been headache-free, my head is doing much better now than it was. So, I am very grateful! I have not had any more “axe incidents” and I’m hoping it was a freak, one-time thing. At the same time, it’s nice to know that I have a doctor who is proactive, on top of things, and ready to implement a treatment plan if this type of thing recurs. It’s also very touching that so many people online are so empathetic as I “travel” on my interesting medical journey and I only hope I can be equally supportive to all of them. (I certainly try my best). I know you have your own chronic health issues and I have the utmost empathy for you! Thank you for your kind words and support!


16 Jannie FunsterNo Gravatar { 02.04.10 at 10:27 pm }

I read with great concern and passion about your excruciating head pain. I experienced that axe-splitting pain. It was terrible!

But you know, I really think my headaches, whether they be migraines or clusters, I let stress bring on me. I’m not saying anyone else’s headaches come on that way. But for me when I get the first signs–pressure, tension, the hint of pain, I try to reduce the stress immediately. Usually it works but if I don’t nip it in the bud it usually goes on to a full headache, that generally lasts 24 hours.

My headaches, tho occuring less often than they used to have never come close together or been severe enough to make me think I need to see a doctor, thankfully.

I sure hope that you don’t get another hum-dinger like that ever again, Jeanne.
.-= Jannie Funster´s last blog ..Gratitude =-.

17 JeanneNo Gravatar { 02.05.10 at 3:24 pm }


Yes, the “axe” pain was terrible!

I think one could argue that stress can trigger or aggravate almost ANY illness. One study I recall hearing established direct links between stress and illness in upwards of 90% of illnesses. (I would cite the study if I could remember where I heard it but it was definitely something like that). At the same time, some unenlightened doctors will chalk various illnesses up to “stress” and then do nothing to help the patient! While stress may well be a factor in these cases, ignoring the patients’ needs due to doctors not having proper training on a particular illness is clearly unfair to patients… who end up being made to feel their symptoms are simply “in their heads” (no pun intended in cases involving head pain).

The idea of anyone “bringing illness on themselves” is a very tough one for me to swallow. So very many patients suffer needless pain due to societal stigma against various illnesses, doctors who don’t understand certain illnesses (whatever they may be), and loved ones who refuse to empathize because they don’t “get it”.

I think I know what you’re trying to say but I am sensitive to wording only because so many chronic illness patients get told by their loved ones, co-workers, and doctors that they somehow “bring things on themselves” or “imagine them” or “exaggerate”.

I know that you emphasized that you were referring only to your own personal experience. I just feel the need to note that being in tune with your body and learning when to take action to try to prevent symptoms (of any illness) from escalating is HELPFUL but the notion that not taking swift enough action when such signs occur equates to “letting stress bring on” more pain sounds like self-blaming language to me.

In other words, I know you well enough to know what you mean but I want to make sure readers here understand that any failure to recognize symptoms soon enough to take action (or the simple inability to do so if in an environment where it may be impossible to take the needed action) doesn’t mean, in my mind, that the patient is somehow “to blame”.

It is great that you have the ability to recognize signs of an episode starting so that you can take the actions that help you try to prevent the pain from escalating. You are very fortunate that you are able to head off (no pun intended) such pain so effectively most of the time. Sadly, too many of my friends who experience this type of pain are not able to do so.

Also, I know that my many friends with migraines (some of whom have contended with cluster headaches in the past) are always emphatic that migraine does not equal headache. So, I know this is one of those sensitive issues where terminology matters.

I hope I never have an “axe” incident again either. I honestly hope it was a freak thing of some sort.

Guess what search string landed someone on my blog today? “Cluster headaches & perimenopause”. πŸ™

I hope that this was not the beginning of a pattern. My PCP is VERY laid-back and has a very calm demeanor. So, when I perceived her take on my situation as the possible beginning of a pattern, I noted her concern with dismay. She knows my medical history backwards and forwards and the impression I got was that she’s “bracing for it”. She is NOT one to say/do things to worry a patient or get them in a tizzy at all. I am clinging to the hope that this was a freak thing.

At the same time, I am abundantly aware that her plan of attack IN CASE this recurs is there. So, all I can do is hope that I am not about to get another diagnosis added to my long list. Frankly, it’s a long enough list.

Thanks for your concern! πŸ˜‰


18 Jannie FunsterNo Gravatar { 02.05.10 at 7:33 pm }

Yes, very good clarification, Jeanne, as to some patients being told they bring on their head pain. It is so important to understand that distinction. Head pain is as real as a broken bone.

And the only place an axe should be, literally or figuratively, is chopping firewood. I’ve only had that kind of splitting headache happen once but it was excruciating, debilitating and made me lie in bed and cry. Yuck!!

Hope you have had a good day.
.-= Jannie Funster´s last blog ..Gratitude =-.

19 JeanneNo Gravatar { 02.06.10 at 12:45 am }


Yes, exactly. Head pain is as real as a broken bone. That’s a perfect way of putting it.

I couldn’t agree with you more that the only place an axe should be is chopping firewood. (Have you got my shipment of seasoned wood ready yet? Have you been hand-splitting it?) πŸ˜‰

Seriously, an “axe in the head” type of pain should ideally never happen to anyone. I’m with you that once is more than enough. I’m sorry you had to experience that pain. It is a brutal type of pain, to be sure.

My day was OK. I have been “screaming” about endometriosis misinformation in the media, as per my latest blog post. Every time I think I’ve seen it all, I encounter another endometriosis misinformation “news” story that makes me want to scream! I spent a fair amount of energy today writing a blog post about the situation, writing a Letter to the Editor of the newspaper that printed the inaccurate story, posting links all over Facebook, and exchanging emails with fellow bloggers about the latest in a long, sad, maddening string of endometriosis misinformation stories in the media.

I hope your day was lovely. I’ll talk with you soon. πŸ˜‰


20 Migraine Denial and Ostrich Syndrome — { 11.09.10 at 4:52 am }

[…] Due to my denial state, I have tried to explain away (to myself) what has been happening as “sinus headaches” or “stress headaches”… despite what my doctor told me awhile back. I was actually shocked tonight when I looked up the post I wrote about that encounter (with my primary care physician) because of how long ago it took place. It was in January! I had this notion in my head that this has been going on for six months at most. Really it has been going on the whole year. This just reinforced for me that I have been in denial. See previous post from when the symptoms started here: Cluster Headache Or Migraine? […]

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