Cluster Headaches

[Astra]

Hi everyone,

I'm in absolute agony!
But my Crohn's is ok!
This time last year I posted about the osteopath visit, 27th July 2010
He said I had Arnold's Neuralgia and my GP prescribed 25mg Amitriptyline.
Exactly on the 27th July this year I had the worst headache ever!
It is in my left eye and temple, it is excrutiating. No painkillers will get rid of it, co-codamol or ibuprofen.
It comes and goes up to 4 times a day, lasts an hour, then as suddenly as it appears, it goes, just like that!
It wakes me up at 6am and I can't sleep. It explains why my neck, shoulder and head hurts so much.
These are cluster headaches, so called cos they come in clusters, usually the same time every year, maybe seasonal, and on researching it, it appears that it's an over serotonin or histamine levels thingy! They last about 3-4 weeks then disappear, just like that!
First line of defence, called an abortive is 100% oxygen thro a mask with a regulator, of 15 litres per min, The preventative is a med called Verapamil.
Honestly, this pain is headbanging stuff, restless and agitated, rocking and crying, pacing and dancing. Worse than any IBD pain I've ever had.
My nose runs, my eyes water and swells. Just horrific.
So, seeing gastro tomorrow and the GP, really hope I can convince either of them to prescribe oxygen or some preventative. Oh, and upping the Amitriptyline to 50mg during attacks can help too.
Anyone ever heard of these headaches? Apparantly it's very common in men over 50. Not that I'm a man like!
Wish me luck, gotta get this sorted before I rip my eye out! If you go to Wikipedia you'll see a cartoon picture, it is very apt!
xxx

 

[handle]

Holy crap! I believe that pain is really bad. So sorry.
I think melatonin might be useful, and apparently light has an effect....
It's one of those tricky to treat things. I hope your doc gets onto it and gives you an oxygen bottle and whatever else you need like super strong pain meds, but I guess the attack might be over before they kick in. You could try some daily massage as it helps release constricted blood vessels. Does ice help?
Good luck , really hope it passes soon.

 

[ThanksP]

You poor thing. My husband has had these in cycles for at least ten years. Imitrex worked well for him but usually he just suffered through them.

Years ago I tracked his headaches with a diary. I found that his cycles usually began with drinking beer. It was really interesting to see how they happened almost the same time every night. As the cycle progressed, the frequency would progress. Then they would start to decrease and then eventually go away. He went a few years without getting them. But they almost always happened at night.

Have you been checked for any sleep disorders, specifically sleep apnea? There is a HUGE connection between the two. That is how my husband ended up finding out he had sleep apnea. Once he got the CPAP, his headaches went away. It makes sense since apnea creates a lack of oxygen. Here's an article... http://www.respiratoryreviews.com/sep00/rr_sep00_clusterheadaches.html

Best of luck to you. I've watched my husband suffer and its terrible just to see it. I know it must be extremely painful.

 

[ThanksP]

Oh, and light and sound never bothered my husband while enduring a headache. Usually he would get up and pace back and forth with ice on his head. He claims that ice helped but I think it just froze his head LOL.

 

[Astra]

Thanks a lot for that!

@ Handle, yes I've research the melatonin. Any light hurts, I've been wearing sunglasses indoors! The sun is defo a trigger and so is heat and humidity. I never thought anything of it til I realised the timing, either coincidental, or a fluke, but it happened at the exact same time last year.
Yes, an ice pack does help to constrict the vessels, and yes you're right, by the time we get something sorted, it will have passed. But I need to be prepared for the next cluster.
And yes, it really really hurts so much!
xxx

@Thanksp
Your poor hubby! I totally empathise with him, pacing and dancing!
I have been jotting everything down since last Tuesday, what I ate, the weather, timings etc, this will help the doc I hope! I don't drink alcohol but I know it's a trigger for some.
I will mention the sleep apnea too, thanks
xxx

 

[scottmyster]

HI astra,
Ask your doctor about Indomethacian. My mom a migrane headaches and she finds the drug helps her, so it might help you. you never know.

 

[Astra]

Thank you Scott

I had to look that up, it says it's an NSAID? Not ideal with Crohn's I'm afraid.
I have tried taking Ibuprofen (naughty I know) and it did nothing, absolute Jack.
Whilst researching cluster headaches it says no narcotics or painkillers will work.
xxx

 

[Astra]

I have found a forum!
It's called clusterheadaches.com and they call themselves Cluster Heads!
It's full of peeps like me! It's so encouraging to read about other people's stories and tips. I now know I'm not going mental!
I've been reading but not gonna post anything yet.
It's just like our crohnsforum, but not half as good!

 

[ThanksP]

Oooooh, I used that forum years ago! Forgot all about it. In fact, I had my husband read some of the posts to get his stubborn butt to talk to a doctor about it. It was a wealth of info (just like this forum)

 

[Astra]

Oh God!
I've just read on that forum that Prednisolone is highly effective as a prophylactic!
80mg a day for a week then taper, pain paroxysms (don't know what they are) usually cease within hours of the first dose! And if after taper, the pain comes back, then it should be used til the end of the cycle.
Coooooooooool
I've got tons of Pred left!
Don't really relish the idea, but I've been on Pred and know all about it's magic!
But.... I will speak to the quacks first.

 

[lola99]

I had a horrible headache just last night. It was in my temple and then it went up into the top of my head. I was in so much pain i thought I was going to throw up. Light ,movement,smells all make it worse. I got home last night and took excedrin tension headache and it knocked it right out. It always works for me. Its acetaminophen/caffiene. I hope the doctors can figure it out for you. My husband has headaches every other day and i cant get him to go to the doctor.

 

[Terriernut]

Joan, oh honey!!! I hope that pred works for you. Jaysus that cluster headache stuff sounds enough to send anyone off to the loony bin in pain. (see ya there!) I agree that it sounds like heat and humidity might be the culprit for you. Or hey, could be the dog you're babysittin! (pass him my way next time!)
Hope you get something that works for you very soon, you dont need this!
Huggles and snuggles!
xxxxxxxxxxxxxxxxxxxxxxxxx

 

[Astra]

Thanks Misty!
Aw the doggie is no problem, she's a sweetie!
I'm sat here with my head in the fan with an ice pack on my temple, I can literally see it pulsating!
I'll take the Pred, I'll take anything at the mo!

@ Lola, that sounds like Syndol, tried it, but it didn't work.
hope your headache has gone, light and sounds are doing me head in too!

 

[ameslouise]

Oh no! Joan, I'm so sorry to hear about your headache! You and pred just can't seem to part ways forever, huh?! I hope it does the trick, but will you need to taper all the way down from 80mg??? That's a very high dose!

Good luck, hope you feel better soon. xo xo xo - Ames

 

[xJillx]

I am so sorry to hear this, Joan! I can only imagine what you are going through. I must admit, I am a baby when it comes to headaches.

I sure hope you get some relief soon!

 

[Astra]

I went to see gastro on Monday but he was on his jollies so I came home!
Nice of them to tell me!
I could've seen the Big Burly Scot, but I refused, so I'm seeing my doc in 2 weeks.
I saw a GP, not mine tho, and she gave me Sumatriptan Nasal spray
I haven't tried them tho, they cause drowsiness, and I had a lot of driving to do.
So, anyhoo, I've seen my own GP this morning and he has listened and taken me seriously, thank God! He knows I'm mental but he also knows that when I get one on me, he doesn't mess about!
He reckons they are clusters or migraines and has referred me to see a neurologist. I thought I'd have to wait til Xmas for that, but he's got me in for the 18th August! Yay.
I've had all my bloods done too, and I mentioned the Vit B12 but this came back normal last time. I thought this was accounting for the extreme fatigue, but migraines do that anyway!
I'm gonna try the Sumatriptan (Imigran) this evening, if it works then it's migraine.
Other than that, I'm ok, Crohn's is behaving well.
xxx

 

[Grumbletum]

Aww, Joanie, these headaches sound awful, but I'm glad they got you in to see a specialist soon. Your GP sounds brilliant and I hope the meds you've got for the moment give you some relief.
But I'm curious now. Who is the Big Burly Scot and why don't you want to see him? Is he a bit Bold and Brash too??

 

[Astra]

ha ha yes Helen
I saw him last year and he tore a strip off me!
Big booming Scottish bloke, and I left in tears!
He said I'm not ill enough for Humira and needless to say, I won't be going back to him!
xxx

 

[Terriernut]

Glad you get to see a specialist so quickly that is brilliant! Also glad the Crohns is behaving itself, nice to know something is!

Hope you get to the bottom of the horrible headaches ASAP, you have a life to live damnit!

 

[xJillx]

I sure hope the Sumatriptan works for you; like you said, that will be very telling if it does.

And I am glad to hear Crohn's is still in check. That's always something to be happy about!

 

[Astra]

Thanks girls!

Helen, that is so funny, I must remember that one next time I see him!

I still haven't done the nasal spray, I'm a bit scared to be honest, the side effects sound horrendous! Chest pain and can't breathe? Numbness and pins n needles? I'm already paranoid that I've got a brain tumour ne'er mind a heart attack to boot!!

 

[Misty-Eyed]

I have the same thing and they last a few days. When I get them it feels like I am really dehydrated or haven't slept enough, but no matter how much I drink or sleep, it's still there! I'd say I get them every couple of months too. Many once a month if I'm unlucky.

Didn't have a clue about what was causing it though! My dad and grandad (dad's dad) get them too, so thought it was just a genetic thing.

Not been in as much pain as you are though! Hope you manage to get them sorted! Best wishes! xxx

 

[Astra]

Thanks Michelle and Littlemisss

Trying to ignore them best way I can! It really hurts! I still think it's my neck tho.
I'm going to Brighton tomorrow for the weekend, stocked up on Kool Pak instant ice packs, they are my lifesavers at the mo, ice really helps and sticking my head in the freezer!
xxx

 

[Misty-Eyed]

It's just extra annoying that taking pain killers doesn't help.

Hope you have a lovely time in Brighton. I don't think it's supposed to rain! Hope your head gives you a break xx

 

[ThanksP]

Sumatriptan (Imitrex) is the only thing that worked for my husband. He never got any side effects from it either. He is quite stubborn so he would only take it after an excrutiatingly bad cluster, but it DEFINITELY worked!

 

[Astra]

Thank you Thanksp

I've got to stop being so bloody soft and just shove it up me nose!
Don't know why I can't, I've eaten just about every IBD med going, I think it's the thought of it up me nose that's making me gag!
Keep thinking I'll end up losing me septum and looking like a cocaine addict, lol

 

[Terriernut]

Joan, you gotta do it. I just shoved a mesalsazine horse like pill up my dry old ass. (stoma...ass on holiday)

I'm sorry to report that YES I walked like there was something UP my ass. Now if I can do that to me ass, you can do that to your nose!!!:yfaint:

Come on girl!!!! You can do it!!!

 

[tiloah]

Wow I don't know how I missed this thread. Cluster heads! HA!

I hope those docs set you straight. Nobody should have to live through that pain. Migraines send people to the ER! I'm not real educated on the relationship between cluster headaches and migraines, I suffer migraines.

Are your muscles tense? Like in your neck/shoulder? Maybe try a massage as a "preventive?" I have been told to get massages but I haven't done it for some reason.

Are you on Pred right now? I read up there that they are used to treat these headaches, but I know for me being on Entocort made my migraines go absolutely out of control! So just some things to think about.

Stay happy brain! Don't torture our Joan.

 

[tiloah]

Thank you Thanksp

I've got to stop being so bloody soft and just shove it up me nose!
Don't know why I can't, I've eaten just about every IBD med going, I think it's the thought of it up me nose that's making me gag!
Keep thinking I'll end up losing me septum and looking like a cocaine addict, lol

Is there a reason they prescribed you the nasal spray as opposed to the pill/shot? If it bothers you that much it seems like it might be advisable to take a different form? The pill works great for me.

 

[tiloah]

On a related note, my OH got sent to Indianapolis for work. He found us a cure in Sky Mall!

http://www.skymall.com/shopping/search.htm?query=migraine relief

 

[Lydia]

I found that aspartame and estrogen from birth control pills gave me terrible migraines. I had them like every other day at one point.

 

[tek254]

I know what you are feeling. I have chronic migraines (2-3 a week) that start as tension headaches (pain and stiffness in neck that migrated up back of head and resides in either side of frontal lobe, sometimes both). I have been on the gamut of inhibitors and attack meds. Best one so far has been the Imutrex injections, 4 mg. Has the 6 mg but the side effects were not worth it. I take regular OTC tension headache pills when it comes on, but do not know when migraine will start. I do get auras as well as vertigo, nausea, droopy eye, blah, blah , blah. I am no longer sensitive to,light or sound but used to be. I eventually found help at what is called a headache clinic. I go to the one in Pittsburgh. They give some natural remedies as well and they did work for about a year. Drink plenty of water, try to walk or use treadmill when attack hits, meditate, and eat right. Hope you find some relief. Alcohol and smoking have been shown to add to the mix.

 

[Astra]

Hiya everyone!
I forgot about this thread til just!

I'm in agony, honest to God, it's doing my head in now, my cluster head!
I don't think it's cluster headaches, or migraine. I believe this is pain radiating from my neck.
It is behind my ear and goes into my eye. Like I've been hit with a 2 be 2.
I feel like I've been scalped, even brushing my hair hurts.
These symptoms are consistent with Arnold's Neuralgia. Read about it here.

http://en.wikipedia.org/wiki/Occipital_neuralgia

I haven't tried the Sumatriptan for 3 reasons, it says it can cause heart disease if you smoke, have gone thro the menopause and are on anti depressants, so that's me!
Also, I'm on HRT (oestrogen only)

Anyway, I have a neurology appt on Thursday. Hope they can do something or just stick a big needle into me head and numb it! If steroids will help, I'll gob a load of Pred!
I'm really depressed, honestly, it's so disabling.

 

[Terriernut]

Only thing I can say is>
:kiss::hug::kiss::hug::kiss::hug::kiss::hug::kiss::hug:
And I hope the specialist can sort you out...PRONTO.

 

[Crohn's Mom]

Joan I hope the neurologist can get things sorted for you soon!
I suffer from migraines periodically and they are just horrific when they hit!
Be well

~T~

 

[littlemissh]

Sounds awful. I hope they can work out what it is and sort some treatment as soon as possible. Let us know how thursday goes. )
If its neuralgia gabapentin (and other similar drugs), carbamazepine etc work well. Also amitriptylline but I think you are on that. But why would you get the red/watery eye? - thats more typical of cluster headaches.

 

[Astra]

Thanks Littlemiss

The red watery eye has gone, the headache's still there
This why I don't think it's a cluster headache now. It also responds to co-codamol, something that clusters don't.
Well hopefully I'll get sorted on Thursday, then I'll probably have to see a liver specialist!
I'm eating these co-codamol like they're tictacs!

Hope you're doing well? Are you home now?
Take care
xxx

 

[Terriernut]

Joan...I am really hoping you get sorted out on Thursday! The headaches that is...we dont want you sorted in any other way, cause we like your naughty self just the way you are! If they suggest a lobotomy tell him to shove it!

littlemissh...An air cast??? Way cool. Can it fly you to warmer climes?? :heart:

 

[Astra]

ha ha cooooooooool, please whack me on the head littlemiss!
So glad you're home, there's nowt like your own bed!

Misty, me naughty? :wink: I don't know wot you mean!

 

[ameslouise]

Joan - I'm so sorry to read that you are still suffering with the headaches!

Sending hugs and fingers crossed they can get you fixed up on Thursday!

xo -Ames