Oh, poor you Maz! That sounds brutal.  Watching my husband, the dread of the pain is almost as bad as the pain himself...it's like a huge psychological cringe  .

I hope you get more O2. It's amazing how much dh is going through. We don't even know if the insurance will pay for it yet  .

We're on the southwest coast so our summers are mild.  High of 25C today.

But dh is having a tough time with his allergies. Yesterday, he started violently sneezing within minutes of coming home. Then the CH hit half an hour later. His armchair is near the guinea pig cage which gets cleaned and bedding changed once a week. Even though all the windows are open, I am still wondering if there could be an allergy trigger with the hay, the animals themselves, or possibly some summer mold on the hay? And maybe the allergy trigger is a CH trigger? He rarely gets CH outside the home.

With your weather I hope you are drinking lots of water with enough electrolytes too!

Thanks for your support. I hope your husband is there for you.

I don't know. Maybe we could board them out for a week? We live in a 1000 square foot apartment and the bedrooms are too small for their cage (which is the size of a small bed). I guess it's worth it huh?

Our bedroom has an old gross carpet in it too. You vacuum and steam clean but it feels like it's never really clean. I wonder if he has allergies to things in the bedroom and living room since he seems to get headaches in those places the most. Hmm...

maz wrote on Jul 31^st, 2014 at 5:13pm:
Funny you should say that. My son got diagnosed with dust mite allergy so I learned a lot about it. We have a mattress pad and all of the bedding gets washed and sanitized (removes allergens) weekly in case that's the issue. But if dh has a dust mite allergy, apparently carpets are the #1 issue. We use a good vacuum with an allergy filter but still.

I started a thread about the allergy issue to get feedback about whether it's worthwhile putting a lot of effort into this particular project.

Jeez. I don't know how much a CAN$ is worth in English £, but that sounds like a lot of money.

I've never understood your insurance systems. It always seems you are covered for everything except what you've got, regardless of what it is.

Here, we pay our National insurance contributions, deducted at a set rate from our pay. Aged over 60s and under 18s don't have to pay anything. Unemployed are automatically covered the same as every one else.

When you need drugs you pay a fixed amount which I think is currently £7.10. Again under 18s, over 60s and unemployed get it free. All hospital or doctor appointments and treatment are covered with nothing extra to pay. The only snag is long waiting lists, so some people who can afford to will  pay to "go private", but no one is left without treatment.
I haven't paid for pills, injections or O2 for over 4 years. I've had appointments with specialists and surgical procedures - all covered.

We complain like hell about our NHS, but I think I prefer our system to yours. I'm on a low income and just wouldn't be able to afford it. I read a lot of posts from America, from people who are absolutely desperate for help and have to go without because of insurance issues.

feisty wrote on Jul 31^st, 2014 at 12:19pm:


Even without all the complications of CH this is an issue in its own right. Everyone needs to have time off to recharge. So add in CH as well and it is no wonder he is feeling burnt out.

He needs to address this too, which I know is easier said than done when everything seems to be going against you. He just needs to start making small, simple steps.

feisty, I've noticed in this string and other strings how many times you mentioned the animals in your apartment and allergies . Is there any way you can remove the animals and their cage/bedding from the apartment for a week or 2 and see if the allergy outbreaks stop?

Oxygen costs and insurance concerns... welder's oxygen is the same quality as medical oxygen.
Just don't mention it is for breathing. If they ask just say a friend is teaching you to weld. It comes in large tanks and smaller, more portable sizes.

It has been my belief that stress is not a trigger of attacks. It is the relaxing after the stressful period. Most of us get attacked during REM sleep. There's not much stress at that time of the night. Many get attacked 3 or more hours after the stressfull workday is finished. Holidays are relaxing times, or should be. So, stay stressed and never sleep. Ever.

So, this is day 12 of the supplement regimen, and I keep thinking: "THIS will be the day that things start getting better". No luck so far, though Batch's info shows that quite a few have to wait for 2 weeks or more to see results.

Dh started sneezing today in his office, so I'm starting to think it's just a pollen issue, not an indoor allergen issue.. He's been home all day but didn't have any sneezing or nose issues until 7:30 PM tonight. No CH yet.

I've been getting allergies lately too - and I've never had them before. They say that climate changes is affecting allergenic pollen timing and profiles.

Haven't decided whether to go camping with the kids without dh next weekend (3 nights). He doesn't really NEED my help, but seems like the moral support helps him? Plus it is useful that I do all the cooking/errands/housework so when I'm away there's more for him to cope with. When I scheduled this camping it never occurred to me that things would be WORSE at this point.

Thanks Maz. I have mixed feelings about going camping without him, but it might be best. I'll see how he feels about it.

I don't think O2 camping would be safe, would it? I wouldn't have control over flame sources in a crowded family campground with campfires, camp stoves, kids running around with burning marshmallows, etc. I guess if we left the tanks in the car? My husband wouldn't have any privacy if he was using O2 in the car though. Hmm.

Could you leave it in the car and just bring it out if he needs it? I wouldn't leave the car in the burning sun though, or it may get too hot.

I should think if you only used it in the confines of your tent and kept it well away from any fires and stoves it would be fine. After all there is not much of it that will escape into the air as he will be breathing most of it. I nursed my mum for a while before she died and she had an oxygen machine in her bedroom. It was a very tiny flat with all rooms leading off a centrall hall, which was only about 4 ft. square. The bedroom door was right opposite the kitchen door and I had to leave all the doors open so I could hear and see her. I cooked in the kitchen on an open flame every day.I smoked too, although I did stand by an open window for that.  Obviously I wouldn't have done it in her room any where near the machine but I was fine across the hallway.

I assume all the fires and stoves will be outside the tent in the open air, and if you keep the kids out while he's using it,then he'll have the privacy he needs. And at night he could probably use it in the car as there would be no one around to see. You can stand guard for him.

I do hope he goes with you. I'm sure with care and a little careful planning you can figure out something workable.Even though the CH will take some of the pleasure out of it, I still think it would do him a world of good to be away from the office for a while and spend leisure time with his family. As i know from my trips away, you can still have a really good time. You mustn't let it completely take over your life.

Hi Hoppy
Yes I'm really getting hammered at the moment, day and night. I have not had melatonin this time around, but I did use it for my last episode and it didn't help at all. I was taking 12mg (4x3mg). So this time I didn't bother with it.

The O2 is great for kip6 or less,which have been going on for a couple of weeks now.But it's not helping the big ones at night. Maybe they have got too firm a hold by the time I wake up.

I was having 2 or 3 hits during the day, but through the night it was on the hour, every hour. I started taking a sumatriptan tablet at bed time as per your previous suggestion and that seems to have helped, and I am settling into a pattern now, of only 2 per night. I take a suma and a sleeping pill and go to bed appx 11pm. Get woken between 12.30 and 1.30 with a k5 or 6 which I take care of with O2. Then at 4.30 I'm woken again with a monster and the O2 won't touch it so I use an injection. At least having it this way I do manage 2 or 3 hours sleep where as with the all night k6s I wasn't getting more than a half hour doze.

I'm sleeping in the spare room at the moment so I don't disturb Len. I have my tanks and my "home pharmacy" close at hand and when it happens I just think " Oh, here we go again" and I get up, deal with it and go back to sleep. So I'm learning to live with it, and I keep reminding myself that it will stop eventually.
Maz.

So, for the first time in weeks, dh had a pain-free day yesterday! 

He was only woken by a small shadow quickly aborted. He did a few things differently last night. He didn't relax in an easy chair or bed until 3 AM - he worked on his computer in his office the whole time. He also had two rum and cokes in the wee hours (the caffeine?) - he normally drinks beer. It's a long weekend here.

So was it the caffeine (Coke)? Not relaxing? The regimen finally kicking in on day 14?

He's not happy/excited - doesn't want to get his hopes up...

10:50 PM. Stopped movie. It's back .

Me too.

Three mild ones in the early hours of this morning, Used O2 but no injections needed, and PF since 6.30 am. It's 9.15 pm now.

What ever is going on for your hubby fiesty, I hope it continues. You may get that camping trip together after all.