An interesting thing happened yesterday. I was dreading the boat cruise that we went on for 3.5 hours between 530-9 PM - because he usually uses oxygen during that time to ward off a shadow/cluster attack. But...nothing  . He got the shadow soon after getting home though (late) and the full attack in the night.

Just 2 weeks ago, a similar thing happened. An important work party 5-10 PM - the attack was just starting at the end and we called a cab right away.

We otherwise we have avoiding going out during this cycle due to dh being tired all the time, and wanting to be close to O2.

It's making us wonder about the timing/triggers.

Is the home a trigger somehow? Indoor allergies? There are allergens - probably dust mite issues in the bedroom due to old carpet, and there are 2 guinea pigs with hay in the lining room (probably some mold associated with wet hay).

Or is dh getting stressed at home? There are stressors too - talking about CH, rowdy kids, etc.

I'm not offended at all maz. Thanks for being honest.

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That makes sense to me. I really appreciate the information and experience that is shared here.

He insisted that cold packs wouldn't help him but when he actually tried it, they helped!

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Thank you, I appreciate the support and understanding very much.

Mike NZ wrote on Jul 25^th, 2014 at 8:22pm:
Yup. He's there  . I think that's why he is having trouble problem solving here - something he's normally great at.

Today he actually had an attack during a meeting at work. It's been rare that he's had attacks during work hours this cycle and in the past. He had to leave an walk around until it subsided. When he told me about it he just looked so hopeless. After dinner he had a shower and went straight to bed.

Five days into the supplement regimen and it feels like things are getting worse, not better .

Very useful perspective Brian. Of course, I never talk to dh during an attack. But...it feels like this cycle has taken over our lives in a way that I never experienced before. I am recognizing more and more that dh is coping with this 24/7, not just during attacks. I don't think he was prepared for how the pattern has changed for him. There's nothing he hates more than feeling out of control. He is not a fan of needing others either.

I'll hand him supplements and try to give him more space.

I think there's still a lot of denial for dh. Today he seemed so happy after dinner because he hadn't had an attack all day. He settled down and started watching a music concert DVD. The attack started at 9:30 PM. He said he was hoping it wouldn't come, that he was just trying to enjoy himself. He sat there clutching his head, not heading for the O2 until it got really bad. Then he had tough time settling it down - sometimes sobbing with the pain.

His whole day is work, and pain management. There is no time or energy left for enjoyment, relaxation - even today he was working an extra contract.

Hard to watch.

Thanks Maz. You truly are the voice of experience. I'm sorry you're going through a cycle . It sounds like you really have found ways to manage it though - it sounds like managing is the key here.

Dh's stressful work life really is a big part of the problem here. He's an associate in his firm now and the buck stops with him when clients have needs. A key employee quit and dh needs to clone himself several times over.

He ended up having two attacks yesterday - one hit at 9:30 PM, then he went to sleep when it settled down, then another hit a while after he fell asleep. Then he had an allergy attack in the middle of the night and "couldn't breathe" (nose issues) and woke up with a sinus headache.

Triggers are hard to identify. Hot baths seem to be a problem - but he hasn't been doing this cycle that as it's summer. He drinks a lot of beer, but he tried doing without in previous cycles and it didn't seem to make a difference. And he's had attacks before having a beer during this cycle as well. You can drive yourself crazy trying to figure out it. This morning he says that relaxing might be a trigger  .

Yes you will drive yourself crazy trying to figure it out. I don't try any more - I just roll with the punches.

In the early days I didn't have the correct meds and when I was in cycle I was 24/7 either in pain or afraid of the next one, or worring about the cause, or panicking to get important things done between attacks. I would wait for an attack, get through it, and go shopping the minute it had finished in the hope I could get home again before the next one. I was scared to go out, scared to meet up with friends - so no social life, not even a coffee,I didn't see my only grandchild for weeks because I didn't want to frighten her but she thought I stopped loving her and didn't want to see her any more.I was scared to go to bed and even more scared of getting up the next morning and facing another day of misery. FOR THE REST OF MY LIFE.  I was in a very dark place and I will admit I contemplated the unthinkable on more than one occasion.

It affected every one, not just me. During one particularly bad attack which lasted 16 hours I took every pill and potion I could find, to the point where I was overdosed on several different meds at once. I watched my husband throw away all his own (much needed) medicine so I couldn't take it, while my 40 year old son sat on my bed and cried like a baby. As I've said on these threads before, While my head exploded, my heart broke.

But then, I got sumatriptan (imitrex) and that made a big difference, although you can only have 2 injections a day and I was having up to 8 attacks. All the same, it was a big help. Then in february this year I got the 02. You can use that as often as you need to so it has transformed my life. I've used it 4 times today (10.30 pm now) and no doubt I will hugging the tank a few more times during the night, but now I look upon it as a recurring  inconvenience rather than a reason to do something terrible. I won't say it never gets me down because it does, but I pull myself together and don't let it consume me any more.

So, I have accepted that this thing in my head will never go away but I have weapons now. So far, since february I have won every battle. I don't worry and stress over it any more, and I don't try to figure it out, because all that stuff consumes your life. I just DO it, 20 minutes at a time, instead of all day every day. I deal with it when it comes and when it's over I go right back to what I was doing before, and try not to even think about it till next time. If I'm out I just go to the nearest ladies room with my injection, and if I'm home I listen to Meatloaf full blast while the O2 does the rest.

Yes management is the key and your husband doesn't need the stresses of CH on top of his job. He may not be able to control the stresses of work but he can control the CH with the correct management. I expect he feels sorry for himself - I know I did big time, but once he accepts that he can control it he will learn to live with it and he will get his life back. And you'll get yours.

Keep fighting and stay strong. You can beat it.
Maz.

Hi Feisty
I found this site and treatment because of someone like you, my wife.
I was stubborn and endured months of pain because of it.
She researched relentlessly and then put a firecracker under me.
I thank her for what she did and I thank you for what you are doing.
Stay strong, you are in the right place.
Alan

Thanks Mike, maz, shortstraw, blacklab . What some of you have endured  . Many CH sufferers have it MUCH worse than dh. That has been an eye opener for me - and scary that it could get worse.

Mike NZ wrote on Jul 27^th, 2014 at 5:45pm:
Yes, I wonder about that, although it seems like things have been high stress for a long time.

Mike NZ wrote on Jul 27^th, 2014 at 5:45pm:
That would be a good way to get my head bit off .

maz wrote on Jul 27^th, 2014 at 6:08pm:
Thank you for sharing your story. I can truly understand how a person could get there . I am so glad you have O2 now. It's not a cure but this cycle I don't see how dh could have gone without O2 and toughed it out without going to a very very dark place.

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Col, stubborn males have some good points too . I see you are working really hard on the supplement solution - that is awesome.

shortstraw wrote on Jul 28^th, 2014 at 6:19am:
Alan, I'm sure you're like my husband - you have earned the firecracker...and the loyalty from your wife.

I feel like I'm taking a lot of "air time" here on the forum  . I appreciate replies, but I don't expect replies every time I post. I just find it comforting to have somewhere to express my thoughts and feelings about this.

I use 15 lts per minute, but I don't hyperventilate.  It still works for me though. For what it's worth I do believe 15 is the lowest to get the desired effect.

Turn the dial up when he's not looking. 

maz wrote on Jul 29^th, 2014 at 1:34pm:


Just one step at a time, so there is a gradual transition?

Another awful night. Attack at 9:30 which was easily aborted with O2. Dh was dreading the next expected one, and stayed up late and refused to relax. Did that ward off one of attacks? Went to bed at 12:30 AM, and woke up with a really bad attack at 2:10 AM that he was not able to fully abort with O2. Stayed up until 4 AM 

This IS getting worse.

It's OK to whine. You should have heard me last night. We all whine sometimes and we  will always listen cos we know how it is.

I had several hits last night, one of them lasting an hour and a half but I've been pain free all day thank god, but I dread going to sleep tonight. I have just made an appointment to see my Dr (usual 2 week wait) to get my O2 supply increased because what they give me barely lasts. I sucked up a whole tank full last night and STILL had to have an injection. I'm going to ask if I can get a higher flow too, but I don't think it's available here.

Where in Canada are you. South of England here, and we're having a heat wave which doesn't help when you feel like s**t.

Keep fighting one day at a time, and telling yourself it will end eventually. I do hope your poor husband gets his camping trip. Sounds like you could both do with a break.
Maz.