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

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

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.

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.

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.

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


doesn't everyone's?

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

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

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 . . . .

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. 

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


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!

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!

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.