Hello again

As you will have probably read my husband is recently been diagnosed this these horrendous things (we are still waiting for the (just in case) MRI results tho), but I have a question for other supporters.

The past few days my husband has been particularly bad. I am generally always with him when the beast attacks and he likes it that way. I do as well as half the time he's trying to either trying to pull his ear off, poke his eye of our is hitting his nose (so much so he's made it bleed before), or banging his head on the wall pretty hard, so I stop him as he'll do him self some damage.

His attacks unusually don't last that long, only about 15 odd mins but that's long enough for us.. and he doesn't do a dance as he gets vertigo with the pain (I read this is normal in some people) so he just rolls around the bed, floor or where ever he is.

Problem is I have to go to work, they are really good and I've taken quite a lot of time off with my husband, but I can't take too much, but I feel so bad leaving him.

Yesterday he had a really bad hit when I'd gone and managed to rip up our bed sheets and hurt his ears, eyes and nose..not badly, but I could have stopped him if I was there.

So my question is what do you do? Do you have any suggestions of the best way of handling this? Should I leave him..? Do your people damage themselves? What do you do?

Thanks for any help!
Bex

Hi Christy.

He's currently on verapamil (240mg), he started on 80mg but they've been up-ed.. they seem to work at first then stop.

He's got docs appt on monday as will run out of pills but MRI results aren't due til tues/wed..! I'm not sure if the set ups the same over there, but he went to a hospital to see a neuro and now been referred back to GP who;s prescribing him stuff, but waiting from letter from neuro about MRI. It's all very confusing and a very long drawn out process.

I'm hoping the doc with give him something, they've been on about injection before.. must mean imitrex?

Well hopefully he'll get that.. he says he'd hate injecting him self.. but also says he's chop any part of his body off if it'd make his head stop hurting!
Altho.. I don't actually think he'd manage to inject himself?! He can barely do anything whilst being attacked.

I am in the UK!
How about you?

B wrote on Nov 6^th, 2009 at 9:54am:

If he's around a normal weight, 240mg is still somewhat low. I weigh 200 lbs. and I take 480mg/day.

B wrote on Nov 6^th, 2009 at 11:04am:

An ECG before and during is probably a good idea as it can mess with the heart rhythms if too high a dose is prescribed. Verapamil (480mg/day) combined with Lithium (900mg/day) is the magic combination for me.

I agree with everything that has been said. Although it is different for everyone.
If you are going to see your doctor make sure you get a prescription for some Imitrex and Oxygen. If he is too scared to give himself needles then imitrex also comes in a nasal form (get the larger dose). The nasal doesn't work as good as the needle but it will do the job just takes longer.
Good luck!

Quote:

This is the most important advice of all. It's vital that you are ready for whatever is thrown at you.

You can't hit a curveball if you're hungover.

I am a sufferer and a supporter.  I am not familiar with anyone being so destructive.  I have found that the calmer I try to stay, the better the results can be, though it is sometimes difficult to do.  Kind of like Lamaze when you are in labor.  My husband does not rearrange his schedule according to my headaches unless something else is going on with me like medication side effects that we are unsure of, or to tend to something in my place that has to be done if I am unable.  Also, he is just a phone call away if I need him. 

My family has lived with clusters for many years through the generations with 10 of us affected (7 still living).  I have had the good fortune of seeing firsthand that it won't kill you and it will pass.  We have all been functionally successful and treat it as an unfortunate, but normal occurrence that happens from time to time to some of us.  We all know there will be a few weeks, especially the middle couple of weeks of the cycle, that it will be worse and we will need more support and encouragement.  We treat it no differently than the 2 family members who have horrible kidney stone attacks chronically.  But most of all, what I am trying to say is that we see each other go on with life and take charge of our situations.  Each of us has a different pattern of headaches, use different medications for them, have different triggers, and see different doctors for them and that makes us feel empowered over them.   

It might be better for you and your husband in the long run if he takes responsibility for his headaches by reading on this site, getting a plan of action by having a doctor he can depend on to get the right medications/treatments, and learning to give himself injections if that is the treatment chosen.  It should give him a better sense of control, and sometimes, that is the greatest help after a good doctor and a loving supporter...as you seem to be.

Good luck!

The reason my daughter, Lisa was strapped down in the ER was because she kept beating herself and was black and blue. I hated this but I get why they did it although it was wrong. They were trying to keep her safe. What Joni said about lamaze is so true. Once she could get a breathing pattern down it was easier to stay in control and o2 worked faster. When I stay with Lisa I time the o2 and tell her when 5 min. is up. She knows it's almost always over in 10 so it helps her to endure the remaining. It's hard not to have anything to help with. You can try redbull or any drink with heavy caffeine and taurine. It doesn't work for everyone but is worth a try. Also when Lisa used verapamil she was given an ekg everytime he increased 80mg.

Good luck with all of this. As many have said it will get easier as you find some things to help cope.

Charlotte

My daughter is 24 and also asthmatic. Part of her therapy was biofeedback where she learned breathing control. It really helped to understand it when she developed CH. I have said to her it's going to be a piece of cake if she ever has a baby because she has the lamaze part down already and knows how breathing can alter the pain and make it more manageable. 

Charlotte

Get high flow oxygen and let the tendency to breathe hard and fast work in your favor! It actually works better when you hyper ventilate.

Hi B,

Your husband's actions sound very much like my father's when his headaches first started. I was very young, but I do remember him doing very similar things to what you describe (banging the head on the wall, tugging at the ear etc.) The only thing I can really say to this is that as terrible as it sounds, eventually my dad realized that all of those things do nothing at all and he stopped doing them. At least in his case this self-destructive dancing / minor rampage around the house was just to keep his mind off of his headache, and he quickly realized that just gave him things to hurt over after the headache finally subsided. Hopefully your husband realizes this soon as well, as it's really just no help at all. As for your O2 delivery, I wish you both the best of luck! That was the first thing we tried for my father 20 years ago, and all it amounted to in the end was a VERY large pile of unpayable bills, at points in the ten's of thousands of dollars (insurance wasn't the best back then for us I suppose). However there do seem to be a very good number of sufferers on out there that this helps greatly. I hope you guys have better luck than we did.