Hello!

My husband has recently been diagnosed with cluster headaches. He has an MRI tomorrow just to rule other stuff out but his neuro is 99% sure.

It's a very scary time and I'm just looking to see if any of you have any advice, suggestions how to deal with it.

So far my husband doesn't seem completely typical (we are half hoping the MRI shows something up). His really bad "headaches" only seem to last between 5 mins to 25 mins. I am pretty sure they are what you lot would call a Kip 9 or 10 and if they lasted any longer he would probably try and kill him self, he says that's what he thinks when it's happening as the pain is so bad. Usually he will go unconscious/fall asleep for about 30 secs 2 mins, sometimes they come back after, some times this signals the end.

The other abnormality is the side of the pain, it's not always the same, it seems to switch, but is 99% of the time centralised around his eye (as others describe).

Currently he's on verrapamil (sp?) on 240mg a day I think, started at 80 and doc been increasing it. Also trying the water treatment, not sure if either are working, but the duration of the headaches seems to be getting less..

Ok, so I'm waffling now, just don't know what to do.. want to ask the doc for oxygen just to stop the pain, but don't know if the pain lasts long enough for it to do any good (God I don't know how you lot cope with it any longer)

Also don't know what to do if they do last too long.. have taken him to hospital before but they just give him paracetamol (but that was before they got really bad)!!

How do you know when it's time to call an ambulance (my husband wouldn't be able to tell me.. he's just there banging his head, trying to pull his hair out, or his face off, squirming all over the place, murmuring "stop stop") and what on earth do you tell them when they arrive??

He's so scared when it does stop that they are going to come back that I think him stressing causes it to come back..!

Currently there's barely a pattern, just usually they happen sometime close to bed time. Can't work out what are his triggers, altho alcohol doesn't appear to be one luckily, altho taking veripamil with beer makes him v drunk which is funny! ::)

Ok.. thanks for reading, and sorry about the waffling.

B

Welcome B.  I'm sorry for the reason you are here, but am glad you found us.  I too, am a supporter.  My hubby was diagnosed 18 years ago, but suffered from them long before that.

I'm glad to see you are doing this diagnosis in the "right" way.  The MRI may rule out other, more sinister things, and you are left with CH.  I'll tell you first that CH alone won't kill him.  It may seem like it will, but it's not fatal.  The pain is horrific (you know this already from watching), but IT WILL END. 

I suggest you read everything you can on the O2 therapy.  The proper use of oxygen has saved many a sufferer here.  The important thing is PROPER use.  Huffing a little O2 for a minute or so won't help - and then many say it doesn't work for them.  One must have the proper mask, the proper flow rate, and the proper frame of mind in order for it to work.  Read, read read, and have your sufferer do the same.  CH CAN be managed and treated - just not cured yet.

Ambulance?  Never for us.  Even in your beginning stages of reading about CH now, you know more than most medical personnel in ER's across the country. Find a neuro that knows CH, will properly manage the cycles, prescribes O2 ON DEMAND, and you'll never need an ambulance for CH.

My hubby was episodic (several cycles a year) and then became chronic (multiple hits a day for 18 months at a time).  Both his chronic cycles were mitigated by hospitalization for DHE treatment (you and your hub should read up on those).  DHE isn't something that works for everyone and can't be used by some, but it's helped him break two un-Godly chronic cycles.

Please encourage your hubby to come here and chat with other sufferers.  The relief of knowing he's not alone goes a long way to empowering him in his treatment.  The supporters and sufferers here are the best people I've ever met - they are my friends and have become my cyber family.

We're here when you need us.  Good luck.

Hi B - I will echo what Mosiacwench said. My husband has been suffering from these for at least 30 years, probably longer. We were fortunate in that when I finally suggested that excedrin PM might not be enough for his "headaches" and we went to see the doctor - his MD has a brother in law with CH. So he immediately put us in touch with a good neuro.

In explaining his CH to a co-worker, who then started googling CH, we found this board. My husband (Guiseppi on the board) began his ch.com friendship with many here. It's here we learned out oxygen therapy works, about possible supplements, etc.

We've never called the ambulence but I know others who have before they knew the issue was CH. The sufferers seem to appreciate the interaction and support they get from each other. We supporters hang out here too, as we also need our moral support. Our dear husbands (or wives) can get a little "snarky" when the headaches have them down and we all need to be here for each other because we  know it's the "headache" or the "meds" talking.

Get the O2, a good regulator and a non-rebreather mask. If the verapimil doesn't work, as the neuro about lithium. That's what my husband takes on cycle.

Good luck B and keep talking to us. What part of the world are you in?

Christy

Hello!

Thanks for your replies! I'm in the UK. I have found the UK Ouch board but doesn't seem very active so I came here.

My husband has had a look on here, not posted yet though I don't think.

How long do your sufferers pain last? Does my Husband sound "normal" to you?

I  know the MRI will show anything that's there, but the similarities to everyone here are too many to be a coincidence.

From what I have read on 02 it takes about 10mins to work, by which time he's usually ok anyway.. so do you reckon it'd be right for him?

Should we try for this first or go for the lithium etc?
Veripamil is having some sides effects on him not bad ones, but he cant be on em forever..

At the moment I am finding it difficult seeing the light at the end of the tunnel, I am just praying he's not chronic and that they will stop for a bit.

The pain sure sounds familiar, the only thing IMHO is a few points contradict my own experiences with CH.

My shortest clusterheadache lasted 30 minutes, and I average about 50minutes.  I've never had one last less than 30minutes, and nver had one persist beyond the 2 hour point.  5-10minutes is not normal, for me.

Also, you mentioned the pain being near a kip 9-10 and your husband falling asleep.  Is it AFTER the hit that he falls asleep? cause that would be normal for me.

but if he is trying to sleep THROUGH the pain, that is uncharacteristic.  Anyone I've spoken to knows a Kip 8+ would be painful enough to wake me from a coma! and theres no way I can sleep/be still during a hit.  Im the pacing around the rooms while yelling and clutching my poor head type.

but CH are crazy. everyone has their particularities. get the MRI, rule everything out.

Hi B,
I'm glad you found us although I'm sorry for the reason.

My hubby, Blake, has been a chronic for years.  It's a tough deal but you all will learn to manage and it does get better.

You've received some great advice from two of the best supporters around, Pat & Christy.

You all are in the early stages (if it is indeed clusters) but it's not to early to start a plan.  By that I mean 'what does he want you to do during an attack'.  As his supporter you are also his biggest and best advocate.  Read and study all you can.  There is a wealth of knowledge here and on the OUCH website (button on the left).  Knowledge is power, Sweetie.

We've never been to the ER.  Most CHers will tell you it's a wasted trip.

Oxygen therapy is used by most sufferers with great success.  It's important to administer it properly....the information posted on the 'oxygen info' (yellow button on the left) is VERY good.

Hang in there, Sweetie.  Ask questions and we'll do anything we can to help.  There is always someone around.

Good luck and big hugs,
Jackie

Just to clarify what Martin wrote, CH pain and duration is different for everyone. 

My hubby (Brew here on CH.com) can sometimes abort a hit with O2 in 2 minutes.  Sometimes longer, but usually 10 minutes or less.  His trick is to not let it get too bad before he hits the O2.  We have an "M" tank in the living room just for this purpose  (the "M" tank is the one about 4.5 feet tall).  His worst CH attack lasted about 6 hours (that's what got him inpatient for DHE treatments).  That 6 hour attack was also at the end of a chronic cycle that lasted 18 months and got progressively, horrifically worse over those 18 months.

O2 has virtually no side effects and is cheap as far as treatments go.  It's a great line of defense against this evil creature.

Jackie wrote on Oct 26^th, 2009 at 12:57pm:

Hi B, You've received some great advice from two of the best supporters around, Pat & Christy. You all are in the early stages (if it is indeed clusters) but it's not to early to start a plan.  By that I mean 'what does he want you to do during an attack'.  As his supporter you are also his biggest and best advocate.

Jackie is right - plan NOW for the hits to come later.  When all is well, talk about what he wants you to do for him.  Get coffee?  Ice pack?  Hold his hand?

But be prepared for the answer that a LOT of us get - "leave. me. alone."

It's the hardest, most counter-intuitive thing in the world to walk away from a loved one in pain . . . .but if that's how he deals with the pain best, you have to be prepared to do it.

I can't tell you how many hours I've spent on the patio, in the garage, in the basement, wherever, knowing my hubby was fighting the beast and I had to stay away.

But if my staying away makes it easier for him, then I'll do it.

To add on to what Pat and Jackie said - I try to keep the house quiet when he's on cycle. My dear husband doesn't like chaos/confusion/clutter on a good day, so on a CH day that would send him over the edge. When the kids were little we'd leave him home and go sommeplace. He often sleeps after getting hit, like he's just so worn out. He also likes the house to be cool, but not cold. so he'll curl up on the bed and take a nap, or in his recliner as far as that goes.

QnHeartMM wrote on Oct 26^th, 2009 at 2:35pm:

I try to keep the house quiet when he's on cycle.

Does your house normally make a lot of noise? ;D

Sorry, I couldn't resist.

Brew wrote on Oct 26^th, 2009 at 5:42pm:

QnHeartMM wrote on Oct 26th, 2009 at 2:35pm: I try to keep the house quiet when he's on cycle. Does your house normally make a lot of noise? ;D Sorry, I couldn't resist.

doesn't everyone's? :P

Thanks for more great replies..
We have had the discussion before of what he wants me to do.. when he's really bad he says he doesn't have a clue.. Luckily he doesn't want me leaving him alone, but he doesn't want anyone else near him.. we haven't got kids yet, we've only been married a year.. and God what a first year it's been!!

At the moment he's still scared by them.. so am I, but more so because he's going to hurt himself rather than them.  :(

But hey got the MRI this afternoon.. but as usual god knows how long til we get the results!

Best of luck to you both today. We'll be waiting to hear B.

Hello B,

I've been a chronic sufferer for 22 yrs. now and I want to commend you for sticking by your husband trying to get to the bottom of all this.

One thing you said that stuck out in your first post is when you said he goes "unconscious/falls asleep"   To me their IS a big difference.   Being tired and wiped after a hit is normal.  Blacking out...isn't. 

I, like all the rest here are waiting to hear what the Dr. says so I hope and pray you come back here to report.  We all care deeply.

Linda

Does my Husband sound "normal" to you?
Normal for Ch that is. relax. Get the 02.
Dont worry your in good hands with these ladies here. Do what they say and all will be well.
the bb :)

Quote:

Dont worry your in good hands with these ladies here. Do what they say and all will be well.

Why thank you John.. :-*

Yes indeed, thank you bbz! 

Remember B, "normal" is a setting on the washing machine.  Certainly nothing to aspire to!

Waiting to hear about that MRI . . . . 8-)

Apparently we must wait 2 weeks for a letter from the neuro.. hmmm..!  But will let you know when we hear.. not quite sure what I am hoping for..

Well that sucks, doesn't it?   He must have very slow handwriting to take 2 weeks to write a letter.  ::)

I feel almost as frustrated as you probably feel right now, but this kind of thing happens to a lot of us when dealing with the medical community.  >:(

Just a suggestion, you may want to read about Trigemial Neuralgia. It has CH type symptoms and what you describe made me look at it.

Good luck, Don

Skyhawk5 wrote on Nov 6^th, 2009 at 11:42pm:

Just a suggestion, you may want to read about Trigemial Neuralgia. It has CH type symptoms and what you describe made me look at it. Good luck, Don

Hi Don!

Thanks for the suggestion, we have both read up and it and are intrigued. It has some similarities but he doesn't have the trigger points it suggests.

Anyway, off to the docs tomorrow to try and convince him to prescribe oxygen..! See if that helps! :)

I am a supporter too but I have a 24 yr old daughter. She has only had CH for 3 yrs. I can remember some of the feeligs you've had. She seemed to morph into CH from migraines and I was pretty much in denial that it was CH. I didn't think she had enough symptoms. It started in July 06 and by Oct 06 it began to develop a pretty clear pattern and more symptoms. We used the ER alot inthe beginning because they could give her iv meds or shots that stopped it but in hind sight that wasn't doing anything long term. One time they strapped her down so that she would stay still and stop banging herself. Not good! In Nov. they put her inpatient for a week to observe her and try various meds. That was the week I figured out just how well the o2 worked. The routine was to put her on o2 and give her a shot of toridol when ever she had an attack. 10 min later it was over. I asked if just once we could try just the o2 and if it wasnt over in a reasonable time then try the toridol. It was over in 10 min., no toridol. She likes me to be with her because it's scary for her. Many people told me they want to be alone. I think this varies. You will figure it out. That first yr was so much research and experimenting and this group of people were so helpful. Good luck with the MRI.

Charlotte

Hello!

Just to let you know.. his MRI results came back and they are all clear..! So it's almost definitely these things..! Went to GPs yesterday and had his verapamil up'd again, and the doctor actually suggested oxygen, but wants to check with the neuro first.. but hopefully that'll be good.. also getting tested for the hormone levels.. may as well give it a go!

We'll see what happens..!

Hi Charlotte
It's nice to hear from someone who felt the same as I do! Can't imagine her being strapped down tho..!! That must have been awful!  He's started arguing and swearing at them now rather than whimpering which is better.. sounds horrible, but he's getting used to them and knows they will stop.

He doesn't really have a pattern yet, they are all over the place.. and we can't work out any triggers or anything which is very frustrating.


I am glad I found this website..! Helps me realise altho he's hurting like hell he's not going to die from it!

Just so you know, some people have triggers. Most do not.

And some triggers come and go.  Things that will trigger this month may not next month or next week or next year . . . .damn beast.  He's a cagey one.

Hello, 
We are also new my husband has been suffering since Sept 17 with ch.  The last episode being two years ago but not diagnosed.  We are exhausted and we freely admit we need other people who understand.  It has taken  a horrible toll on our marriage and on our finances.  As, he has been unable to work since Sept 17 and I have had to major surgeries in July and August.  We are at out wits end.  He is now on Depakote 2000 mg daily,folic acid and B12 injections daily.  How do you all work?  How do you keep it together.  I want to help but I have exhausted every avenue I know.  Thank God we found you all!  Thanks.  We would appreciate any advice that you can give.  When will people ever learn that people need people.

I know you are new, so I want you to look up at the top of this page on the left where it says.."Good evening trucker.  You have 1 message.   Click on it.  ;)

Linda

The way I work is as such: I always have O2 with me to abort. I start on one of the combination of two preventatives that make up the cocktail that eliminates 90-95% of my hits - lithium. If and when they start breaking through that, I start on the other - verapamil. I don't like taking this one as it makes me tired and drains me of energy, and the sexual side-effects suck. But it's a trade off.

The only time I've missed work due to CH in 20 years is two times I was hospitalized for three days each time - IV DHE-45 treatments.

My husband was diagnosed with CH about one month ago.  He was having headaches around the clock but now just at night.  He has been put on more Depakote and B12 injections and folic acid.  He goes back to the neurologist today.  This has completely torn our life apart.  I had to have two emergency surgeries this summer and have not been able to do rehab due to the care that he has needed this summer and fall.  He seems to be better.  I pray that he does not hurt and have sent a note to the neurologist asking about oxygen therapy and imitrex injections.  I don't see light at the end of the tunnel either.  I feel hopeless.

Trucker, I understand your feelings of hopelessness, but hopefully as you and your hubby read through the information on this site you will see that people Do and CAN live with CH. It's all about getting the mix of treatment - both preventative and abortive - that work for him. Lithium and Verapmil are common preventatives, taken at appropriate dosages.  Then the Oxygen therapy, and imitrex if necessary to get through any hits that break through. These are the things you should discuss with his Neuro.

Good luck.

I am new to ch, have had 2 episodes. Have had an mri which is ok. I seem to be getting migraines several times a week now. I havent decided what to do about this. my episodes come during the day. I have all the classic symptoms and took the quiz. My GP is willing to give me o2 and meds but im hesitant. Should I wait for my next episode? Do episodes get progessively worse?

catlover wrote on Nov 23^rd, 2009 at 8:30pm:

I am new to ch, have had 2 episodes. Have had an mri which is ok. I seem to be getting migraines several times a week now. I havent decided what to do about this. my episodes come during the day. I have all the classic symptoms and took the quiz. My GP is willing to give me o2 and meds but im hesitant. Should I wait for my next episode? Do episodes get progessively worse?

ummm, migrains and clusters are seperate. just for your info.

if you're diagnosed with clusters, I would get the 02 and meds ASAP. don't wait till they come back; get prepared for WHEN they come back. 02 is safe to use, so theres no harm in arming yourself with it.

Episodes can get worse, get better, dissappear, go into remissions for years.
some episodic sufferers turn chronic, and go with little or no releif from the headaches. some chronic sufferers go episodic.
you'll have to wait and see for yourself. best of luck!

Hi B,
I'm in the UK too.  Although I'm a chronic sufferer, I recognise a lot of your worry.  My wife still worries terribly after 9 years of first ECH and then 4 years ago I went CCH.  Just go with your heart!  My wonderful wife doesn't try and stop me banging my head on our garage wall, but she has got me to put hardboard with loft insulation behind it on the wall I use.  She now knows that at least I won't fracture my skull!  She finds seeing me so bad very distressing, but we long ago threw away thoughts of Ambulance and A&E - you just lie on a trolley and wait for 3 hours.  Then the doctor finds out your CH and offers no treatment, other then telling me to contact my Neuro!
Second, you seem to infer that 'at least' you don't have kids yet is a relief.  Well I can only tell you from a CCH my viewpoint.  We have two great girls, one nearly ten and one very much younger.  They have no problem seeing daddy like I am, because it's all they've ever known and once they are able to be reassured that this is 'normal' behaviour for daddy then like all kids it's 'OK lets play!'.  The major strain would be on you, cos when I'm out of it, I'm pretty darn useless, but then once it eases to say a KIP 6 , I'm ready to get on with it again and give my wife a break and play with the kids etc.
Don't be surprised about two weeks for Neuro letter.  I'm under UCLH and two weeks would be amazingly quick.  My Consultant at the National Neuro apologised for the delay because she hadn't had a secretary for 4 months!.
Hang in there B, oh and I found it a great help when my wife finally opened up about how she felt - you see it's not just your partner living with CH - you are too and you make a CH sufferer proud that you carers agree strong enough not to just 'cut and run'

Hi exmed1!

Thank you for your reply!
It is reassuring!

We're now not sure if he's actually got clusters or not..

A few weeks ago I could not wake him in the morning, he had an attack the night before and the morning after its usually quite difficult to wake him but this was much worse.. he'd part open his eyes and let out a groan and that was it. He remembers none of it, but seemed none the worse for it when he eventually came back to life!
I couldn't get a GP appointment for him (bloody NHS), so out of desperation called the hospital to try get hold of his neuro.. but only got an answer machine.. so left a message.. eventually the neuro called!

Since then things are moving along and currently my husband is bouncing between the GP and neuro each week.. the neuro is not sure exactly what he's got as the pain usually only lasts 5/10 mins (the most its ever been is 25mins) and he was going practically unconscious after an attack, and sometimes just before as well.. only for 30 secs a min.. which noone on here reported..
One attack takes him out for the whole day, so he's signed off work at th mo.

The poor thing is on 460mg of verapimil now, which has lowered his BP and now he's falling over alot.. and on 6 tablets a day of an anti inflammatory..

Neuro thinks he may have Trigeminal Neuralgia (apparently anti inflammatory may help that), but his symptoms don't really match that either..!
None of the tablets appear to be doing anything.. except making him tired and have an acidy stomach, and he seems to be having more hits rather than less, but I don't think they are as painful, and he's not quite so out of it after..

But MRI shows nothing.. so we're at a loss..!  :(

(if any of this rings any bells to anyone please let me know!)

Sorry to ramble there.. but I haven't posted for a while..!

Again thanks for all the replies I am getting!

Bex

B
Has your husband tried indomethacin?

I have to ask too, is his neuro a headache specialist? Not all neuro's are and it sounds a little too like your husband is a guinea pig here.

Whereabouts in the UK are you?

I promise, I will try and help!
Helen

Has anyone considered BAM or basilar arterial migraine? I have been thinking of this since I posted a minute or so ago and just wanted to mention it. I know it's "considered" to be largely women who get it but, what do you know?! CH is primarily middle aged men and me (female) and my primary school age son can testifiy against that!

Basilar Arterial Migraine involves a disturbance of the basilar artery in the brainstem. Symptoms can include severe headache, vertigo, double vision, slurred speech, and poor muscle coordination amongst other things and one thing that is important to know about them is triptans are dangerous in this headache type.

I am NOT a doctor - I don't want you to think my opinion holds any "weight" for a minute, it was just something that seemed to ring a bell with some of the things in your post.

Hi Lelimey!

Thanks for your reply!
He's on indomethcin at the moment.. that's the antinflamatory just couldn't remember the name..!
I'm not sure if the neuro is a head ache specialist or not..? We're in Bedfordshire, using the Lister Hospital in Stevenage..

I have never heard of this Bam thing.. just did a quick google but not come up with much yet.. the pain he gets is similar to that of ch, (as in as painful as described here, and in same place) I thought the pain of migranes wasn't painful enough? I dont know tho.. open to any ideas!

Bex

Well if cluster meds and meds for Trigeminal Neuralgia aren't working - it may not be either! Indo will also rule out Paroxysmal Hemicrania and Sunct which are TAC group with CH, (Trigeminal Autonomic Cephalalgia's )

Migraine is a severe and debilitating condition. Some varieties and attacks may not be as severe as others but some are damn awful. BAM is a very intense pain from what I know of it.

The fact he has difficulty in recovering fro an attack would make me think it's possibly not a headache condition at all merely a condition with headache as a secondary factor. I'm very glad he's had an mri, that rules out a lot of more ugly stuff at least. A CAT scan might be a useful diagnostic tool too as they show different things to MRIS.

If he get's offered one, definitely take it! Has he had any blood work done?

Hello again!

Sorry for the delay.. I don't get on the computer really over the weekend! He had a CT when they thought he had something wrong with his sinuses before they finally decided on ch, but also didn't show anything.

Its strange his pain is very specific.. it lasts about 10mins, then he has about a 10/15 min break and then it comes back for another 8-10 mins. It very rarely differs from this.
He says his tablets are making him feel less "out of it" afterwards, but thats about it. The frequency of the hit is now increasing. He has at least 1 attack a day now, where as before it was a few a week. Usually just as he's going to bed (regardless of the time), then sometimes again when he wakes.
He's been signed off work, now on his third week, as he can't concentrate and is not awake enough.

I am still trying to do research into these BAMs but not coming up with much..

I hope the neuro has a brain wave on Thursday when we see him again and realises what's going on and gives him a magic pill and he's all better!
I just want my normal husband back!!  :'(

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Cheeky!! :D 
I have googled it.. but the info its giving doesn't help with the amount or duration of the pain..! Maybe I'm missing something?