Hello, all.

I cannot begin to express how grateful I am to have found this board. I have suffered for 15 years in near silence. Some people know I experience ch, but I don't really let anyone know how bad they are. Being of German heritage, I was raised with a suck it up, stoic resolve. I rarely show signs of pain, and sadness or despair are just not a part of my normal range of emotion. Today, however, as I sat with my sunglasses on and the brightness of my laptop all the way down, I read the home page's quote "I bind my head between my arms and squeeze as hard as I can in an attempt to crush my skull," and I broke down and wept. For the first time, I felt like someone out there truly is experiencing what I do. While I don't do this exactly, I have had my husband interlock his fingers and squeeze his hands just behind my temples so hard I thought he was going to (and almost wanted him to) fracture my skull. But the relief during this extreme intervention was almost beautiful.

Some people might find my ability to remain calm and stoic through a majority of my ch to be a blessing. They'd be wrong. By not outwardly expressing the excruciating pain I was having, my family has not even begun to understand just how bad the pain is. My husband knows I'm in pain, especially today because I think it was maybe the second or third time ever that I wasn't able to hold back the tears. But I think because my overall outward reaction is the same, to him it's at the same level as menstrual cramps - something he has never experienced but knows it makes me uncomfortable. I think if he knew how bad it really was, he wouldn't be able to deal with it. He likes to "fix" everything, and he just can't fix this. Cramps? Here's some chocolate, a heating pad, and ibuprofen. Headache? Here's your sunglasses, Excedrin, and a quiet living room. Yeah, I pretend it helps a little.

I am a 42 y.o. woman from Pennsylvania. My first ch was in 1999, just 10 months after being in a pretty bad MVA in which I lost consciousness for a minute or two and had a pretty large head lac. Coincidence? Maybe. However, there are studies that show causality. But I'll not debate that here. With my first ch, I had 100% the classic signs. Headache was on the left side behind my eye, which was swollen and tearing, my nose was dripping, and the pain was so bad it was in my upper teeth. I had just come home from a date with a fairly new boyfriend, and my parents thought he had hit me! I can laugh about that now; he's since become my husband.

I wasn't dx until 2002 by a neurologist who gave me an Rx for Zomig and sent me on my way. He has told me about the Imitrex shot but assured me this "3rd generation triptan" would be much more effective.

Yeah right.

At the onset of my next ch, I popped a Zomig and waited. Well, the headache never eased up and I really hated the way it made me feel. I never took it again. Since then I haven't tried any other medications. I just suffer through them.

Being an ER nurse, I have only come across one patient who also has ch. The relief they had on their face to have a nurse that "got it" and knew they weren't what we call a "seeker" was a pretty powerful thing. I envy him that. I don't go to the ER for my worst headaches because I know that A) narcotics can actually exacerbate these headaches, B) anyone who says they have pain >7/10 that is completely subjective is immediately under suspicion of being a seeker, and C) NOTHING WORKS.

So I suffer, as we all do.

My clusters typically last 1-2 weeks with remission typically being between 2 and 6 months, although this past remission was just over a year. There is no rhyme or reason to the return of clusters or the individual ch. It had been so long that I didn't even recognize my shadow headache I had at work last night, despite the fact that it came and went within 15 minutes. But my shadow headaches feel like a regular headache with the exception of the sudden onset and relief.

My typical s/sx are:
- onset of pain less than 2 minutes, usually 30 seconds
- pain on one side of the head and/or eye, usually the left
- occipital head pain
- pain is deep and non-fluctuating
- duration of about 1-2 hours
- with the worst of headaches, nausea (severe pain causes nausea)
- sensitivity to "sharp" noises. They don't have to be loud, just sharp, for lack of a better word
- inability to sleep and constant shifting around

Sometimes my s/sx include:
- ptosis
- rhinorrhea
- mild headaches that come and go in under 20 minutes
- hot flashes involving just my head and arms

What makes them go away: TIME

What makes it more bearable:
- Dark room with no loud sounds
- Sunglasses
- Husband's "vice grip" for the most severe headaches.
- Keeping busy (while I find it hard to concentrate on any one thing for more than a few minutes, I am constantly moving from one thing to another and often end a headache with several half-done jobs/projects/activities lying around the house lol!)

Because I only work 12 days a month (12 hour days), I have been lucky enough to have never missed work from this. So far I've only had the lesser headaches at work which I have been able to suffer through. I couldn't even attempt to go to work for the more severe ones.

Well, I'm sure that is enough for a newbie. Look forward to poring through the message boards for kindred spirits. One thing I have learned over the years is that the s/sx of these God-awful beasts very greatly from person to person, as well as common beliefs about what is and isn't "normal" to experience.

There is no normal. ;)

G'day ER, welcome, and I love nurses. Sorry you had to find your way here but at least you're in a good place now and we truly do understand.

Lots of good reading for you here and a great place to start is our little Cluster Quiz in the top left of your screen. We always suggest people ensure they have an absolute diagnosis of CH otherwise the medications they take could be harmful while another condition, perhaps serious, is going untreated.

If you've any concerns about your previous diagnosis we're happy to help you find a headache specialist close abouts.         


(I love nurses.)

After that it's simply a matter of looking at the various ways of managing CH and finding which works best for you. We're good at helping on that score, too, with the different  preventive regimens and then the most effective use of abortives.

Best thing you've got on your side, though, is hubby. Around here he's known as a Supporter and we worship them, even though we haven't the first idea how they do it. If he'd like to join our happy little community I can promise he'll be made welcome.

Please be comfortable here, you really are among friends, and ask all the questions you can think of. We're here to help.

Cheers and beers from down under,

Brian, who loves nurses.

Quote:


Or in your case, just stop allowing people to smack you about the head and shoulders with a fish...

Batch,

This would be true if they happened at work, but as I said only the less severe ones happen at work. I live almost an hour from my job, so it's not easy to access when I'm home. As far as the ones I have at work, I go hours at a time without even a moment to pee let alone tap out and tell the other nurses "sorry, you have to pick up my slack, I'm going to go sit and suck air for awhile while I collect the same pay you do." Nurses just don't work like that. All that said, next time I have one AND actually have time to do so, I will try it and let you know how it went.

And thanks for the translation. I hope you realize I was referring to his profile picture, which I found rather comical.

Peter510, I believe AussieBrian's post said I have access at work so I naturally assumed that was exactly what he meant. I will be discussing O2 therapy with my PCP. We use it often for migraines. It never occurred to me that it could be used for clusters as well.

I don't know why you think no one at work knows. I never said they didn't know. They absolutely do. I said I cannot stop working to go sit with O2. The nature of the job of an ER nurse does not provide that luxury. I have to work through it if I am there. Should I get a Kip 8 or 9 at work, I would clearly have to go home. I've already discussed the possibility of submitting FMLA with my PCP for intermittent leave if it were necessary.

As far as how I run my home, you've made quite a few erroneous assumptions. My son is 15 and is well aware of my headaches. My husband and my son are both worriers, and downplaying what I go through is the best for them. Since I am the wife/mother, I trust you will leave it to me to decide what is best for them.

While I'm trying to accept that some of these posts are coming from a place of compassion, I can't help but feel like I am being judged. It was not what I joined for, and TWICE have expressed that I wasn't here necessarily for advice but more for "kindred spirits" just to know I'm not alone.

You're not alone, ER, not any more.  You're so very welcome here and so is hubby and son.

We really do care, but sometimes the bestest posts can be mis-interpreted while others could have been written a little more clearly,

Our intentions are honest, I promise, because all headaches are horrible and so many of us are here to help because we care.

Welcome home.

ER Nurse wrote on May 18^th, 2016 at 7:55am:


   Since you know very little about clusters maybe you should take the advice given.

              Potter

Hello and Welcome

  My attacks also started after a head injury . . . here referred to as head-trauma CHers . . . I believe the percentage is 16-20%.  Knocked my noggin 1/01 . . . headaches started, saw doc on regular basis, 2 CTs, 1 MRI (both of which will show "normal" if CH. 

  For a year I wasn't able to take my grandson to the woods or fishing by ourselves because of the fear of having a fatal stroke while we were out (he was five at the time).  By the time my wife found this site 2/02, I was having 6-8 attacks daily, Kip 5-9, most 20-40 min, and the occasional 1-2 1/2 hr horror. and sometimes 3-5 attacks at night . . . . those were the BAD days.

  On coming here I got a name-for-the-pain and suggestions on what to do NOW and what to seek in the way of abortives/preventives.   I have heart issues and high cholesterol, so Imitrex was not an option, but the 02 WORKED and I was able to abort attacks in minutes if caught early enough . . . . minutes matter.  I used Verapamil to good effect which helped reduce frequenvy/intensity.  I didn't see a PF day til' I reached 240 mg . . . it was a GREAT DAY! . . . had three attacks that night, but had 02 to kill them at a Kip 5.

  I can now report being pain free for 2 1/2 yrs using the D3 regimen.

  All here truly know the pain of the beast and the purpose of this site is to alleviate/eliminate that pain, provide medically recognized materials to allow you to be pro-active in your dealings with the medical community, and let CHers know we're here for each other.

  Be Safe,

     PFDANs,

        Richard