Beth,
So sorry you were compelled to write this. I can only imagine that your dear sufferer is not cooperating in participating in research and trying suggested treatments.

I guess it's kind of like the spouse of an alchoholic realizing they can't go to AA for their spouse. But the spouse can go to their support groups. Likewise, you can continue to count on us for supporter love.

I think some people just enjoy  being sick---almost like an addiction to victimism. Or they are just to weak to fight it.

Hang in there Beth. I know you love him or you wouldn't care. Hopefully he will come to realize that what you're doing to improve his life is really to improve BOTH your lives. Maybe then he'll be more accepting.

Christy

Beth - I can only imagine how tough it will have been to write what you wrote.

I also echo Joe and Christy's comments.

Bless your heart.  You are certainly in a bad spot. 

It's impossible to help someone who won't help themselves.

You've been a VERY proactive advocate for your CHer but you can't do it all.

Good luck, Sweetie....

I have not regretted the day I found you all!!!  I remember weeping, realizing that I was not crazy, wierd, alone, making excuses for my CHer, or afraid anymore.  That this thing was real and not just in our home!  I will keep learning, printing out information and putting it in "my" CH binder. One day he may pick that up first.  Get curious for himself, and find you!  This site is in our internet "favorites" too. 

I have always been the one to fill the medicine boxes for the week, but no more. He will have to do it.  This means he may not be continuing Batch'es regimen of D-3 and such, but....it remains to be seen. Don't know about any of you...but since he has been on that, his fingernails have stregthened, become smooth and glossy!  Our adult daughter asked him the other day why he was polishing his nails clear.  Ha ha! He said he wasn't and thinks it was one of the meds doing it.  I said "yep, probably the D-3" Dr. said that was probably right. He thinks he takes too many, but the Dr. did say that it wasn't hurting him anyway. I also had him taking Kudzu.  So, what happens if he doesn't continue it all....we will see. (Then I'll know if it really was helping) He does coffee, but wants no part of Red Bull or such either.  But, I still have the Opti-mask on stand-by...just in case. 

Thank you all for supporting ME! You have touched my life and you are all special people out there, fighting against this demon of a condition!!  I am an EMT and I have dealt with and seen a lot of things, but this one....well...you just sometimes feel helpless.  (Hence my nickname) Everyone phones me and asks me what they should do about this, or that....if I don't know, I suggest the Dr.! But with this...the Dr's don't even know what to do! (And I still don't feel qualified to help much. So I will direct anyone to you!)

You have done all that you can to this point.

Hello all.  I have been popping in, but not logging on much.  Things are going very slow, hard, and frustrating. I still have to drive him to his appointments, but I hate going, because I want to open my mouth and tell all.  I have intervened a few times as I was getting worried.  They increased his verapimil, but after few days, things began changing...an not necessarily for the headaches.  Finally, I suggested he call the Dr. and let them know the symptoms he was having.  They had him right in the next day.  He BP was very low, so they did an EEG. It was not "normal".  So then they did blood work to make sure he did not have a heart attack.  Negative, so that was good news.  Well, they figured his body could not handle the increased dose of the verapamil. So that came back down.  They then started him on Depakote.  He doesn't take any of his medications regularly, as he "forgets". He noticed his hands were drying, and peeling terribly with nothing helping, so he started taking some D3 again.  (about 6000 that I see..again, not regularly) He is stll on the dalaudid, but they are getting serious about cutting him back now.  He is not happy, as they "haven't given me anything to deal with the pain in it's place". He uses all 4 tablets for his morning (2-3am) dose.  Then he uses Imitrex injection for the second hit. (about 2-3pm) That is way too much of that also.  He has stocked piled it from before, but is just about out now.  He made the comment to me the other day that "I will be needing some ER trips in the near future".  UGH!!! He hasn't even tried to slow down his smoking (about 2 packs a day) They ask him, and have given him lozengers and such, but they don't get used.

And of course, like I have been reading with some of the other sufferers, the weather is NOT making things any easier.  We live in the snow belt and really have had no winter to talk about.  Two of our sons work for the state DOT on roads and have gotten only one night overtime this winter. 

There are times I feel bad for him, there are times I am frustrated with him and really don't care....then I feel guilty again, cause I know his pain is real.  But he probably has other problems on top of the CHs now.  <sigh> He really believes there is a magic cure out there somewhere.  That someone has missed something along the way. I try not to get his hopes up at all, and that many of you say that learning to live with CH makes for a more fulfilled life, instead of trying to fight it all the time.  (Easy for me to say huh?)

Well, I have not forgotten about you all.Thanks for being there.  Love reading some of your quirky jokes, daily thoughts, and just things that make your life just as crazy as mine! I have been entertaining lately, which helps to keep me sane. I sing classic country, bluegrass and gospel.  If you like that sort of thing. We (my singing partner) just started a Youtube channel: earthangeltunez  We have a facebook page also: Earth Angel.  She plays the guitar, and I just picked up a fiddle last summer and am trying to learn.  But NO public performances yet (with fiddle I mean)! Yikes...at this speed, don't know if there will be any.  Ha ha
Take care all, until next time.  Beth

You remain his best hope not doctors or medicine.
Kudzu doesn't work well with other medications.
Your frustration is normal and so is his. You two need a break. Take some time and treat yourselves to some kind of recreation other than relenting over CH.
Shove the 02 bottle at him. Decide on one therapy and stick to it. You cant throw it all at once and treat this. Planning and timing. If he refuses treatments that may help him that is normal in some respect. He is beat down and dont care. Been there. There is hope and help. For you and him. Do not be discouraged. Abortive, transitional,and prevent. Decide on a treatment and stick to it. If it doesn't work move to treatment plan B. My heart goes out to you both.
all the best
the bb

2 quotes from Man’s Search for Meaning that came to mind reading your postings. I’m 39 pages into this book and this one will change me for the better, I can already tell.

“To suffer unnecessarily is masochistic rather than heroic.”
“Those who have a 'why' to live, can bear with almost any 'how.” 

What is his “WHY” in this life? Not just pertaining to cluster headaches but in the greater scope of his life. Because the cluster headaches are not the scope of it by a long shot. Suffering is not the scope. When he finds the answer to that, he will find his fight again. Help him find that if you can. Sounds like he needs to find why he should fight before can actually start to fight.

Sigh. It’s a hard fight to try to fix someone who won’t fix themselves. We have our hands to play though, as supporters. We aren’t spectators in this card game. H*ll, we’re even called out by name (alright not really) in Newton’s first law. “An object at rest will stay at rest or an object in motion will stay in motion until acted upon by an equal and opposite force…” Being an equal and opposite force is the thing I shoot for here. In the interest of full disclosure I will note it’s worded as an “unbalanced force” in some texts- make of THAT what you will! Haha!

YOU are not giving up here, you’re just adjusting your tactics. Keep doing that. Try. Try. And try again. But never give up. Never give in. And we’re only helpless when we’re dead.

Hugs to you and the row you have to hoe on this one. You know what I think causes cluster headaches? Excessive stubbornness! Haha! Well, maybe not. If that was so all us supporters would have it too!

People are thinking of you, pulling for you, all the world over. Add me, here in Texas, to that long list.

Keep us posted!

If he is taking anything he can find at random, I'd be strongly tempted to get rid of the stockpile.

Have thought of that. He would be raging! I'm not sure what he is taking for sure or if he is looking for stuff and not putting it back.  I know he would love to find more imitrex or DHE, or dalaudid.  Smoking like a chimney too! (Wish he would inhale O2 instead) Think I'm just gonna have to order some on my own and just sit the tank next to his chair.

Beth E wrote on Feb 9^th, 2012 at 7:31pm:


Better off raging than having issues from an overdose which with a random medication a could be pretty severe.

I recall a time when I was so frustrated with Joe because of how he was self-medicating. He carried around this insulated lunch bag. He called it his "dope bag". In it was about 8 bottles of different pills that he called his "dope". Our kids were small at the time, and he picked them up in the afternoon. You can imagine how I'd react when I'd see him "stoned" (as he called it) and know he drove my kids like that.

In a rage I called his doctor and asked for (demanded) an appointment consultation because I felt Joe was overdoing the meds. I used the words "dope" and "stoned". The doctor saw us the next day and tried to reprimand me for using such words. I told him - "those are Joe's words, not mine. It's what he says around my kids." Then I told him what JOe was taking, and how much, and how often.

The first thing the doctor did was explain to me what each medication did, and how it was ok to be taken together. He reminded me that they are medications, not dope or drugs. And he said Joe is not stoned, he is experiencing side effects from the prescribed medication.

Then he looked at Joe with his eyebrows raised and discussed timing and proper dosages.

It wasn't too long after that and we heard about O2 and lithium. Really made a difference for us. No more Joe waiting for feuorynl to kick in while he took God knows what with it.

I really hope your husband will come around some day and realize that there are better, safer and faster ways to beat this pain. Maybe the DHE would be good to get him a few days respite, and then once he's rested, he can be more reasonable with trying a different approach. It's got to be so frustrating for you. When they say "In Sickness and Health" and dont tell you about CH....well they really do push your will, don't they?

Hugs.

Christy