Hi everyone.  I find my self feeling helpless and not knowing what to do for my hubby.  The beast has been coming to visit everyday, at least 3 times a day, for almost a year now.  He hasn't had a PF day in so long.  I feel so bad for him and I just wish that I could take away his pain.  I spend so much time on websites researching looking for anything new that he may not have tried.  I'm grasping at any straw.  I go to almost all of his Dr. appointments with him and ask questions about things that I have read.  I wish that this nightmare would end for him.  I just don't know what to do anymore

Aww, Flipperlips, sweetie, you are there! That alone is a wonderful thing. I know it's  hard to watch him suffer..remember, it's hard for him to have you see him so vulnerable as well! The best thing you can do ...you've done! You're here, reading and looking for something tht might help. I have to ask you, is he using 02? Has his Neuro prescribed anything? Wht is his preventative, and what is his abortive? There is so much that could help, but, we need you to take a big breath of air, and hang on! Please answer my questions and lets see if we can help get him-and you squared away. I just bet you're a wonderful supporter,,and that is a good thing............

We're here!
PF wishes for your hubby
Hugs to you both!

Cathi

Hi guys.  Thanks for your words of encouragement.  My hubby does use oxygen.  His regulator only goes up to 8 so we have to talk to his neuro about getting a different regulator.  He has been diagnosed by a neuro.  He is on so many meds.  He takes so many meds.  Depression meds, anxiety meds, stomach meds.  He is on Verapamil and has Imitrex injectables and he also has Zomig.  The weird thing about the Imitrex is that while it may take the head pain away he gets body aches and lockjaw.  I know from reading many postings that this is not common.  He has had CH's for 15 years with this past year being the worst.  It seems to be getting progressively worse for him  He hasn't worked since November 2007.  He is in this vicious cycle of pain and feeling worthless.  I can tell when it's happening.  His left eye gets bloodshot and his left nostril clogs up.  I have now put his O2 by the couch becasue that's where he spends a majority of his time.  When he grabs for it I go grab the Imitrex.  Then I ask him if he wants some coffee, a Mountain Dew or an energy drink.  He has been crying more and more lately and it's because he says he's not taking care of me the way he should.  He hates it that I have to go off to work.  He's a classic, I'm the man and I should be providing.  I reassure him that he does his fair share of the supporting because he is my biggest fan.  I tell him all the time that it isn't about the income coming in, it's about supporting each other through the good times and the bad.  He sometimes tells me to leave him because I don't deserve to have to live like this.  I tell him that I love him and that I'm not going anywhere.  There really is no one better suited for me than him.  I just try to help him in anyway possible.  Whether it be running for the O2 or Imitrex or leaving him alone.  I could go on and on.  I'm so happy that I have you guys for a shoulder to cry on.  I shed so many tears that I don't let him see because I don't want him to know how much this affects me.  I try to stay strong for him.  It hurts so much to watch the one you love wiggle around in pain.  My pain is so mininmal compared to what he goes through.

Anyway, enough boo hooing from me.

My hubby is a verteran.  We are going to the VA pain clinic in Ann Arbor on Thursday afternoon.  He just went to the neuro there on Sept. 2 and they gave him Depakote and a lidocaine nasal spray.  It's too early to tell on those.  He used Depakote years ago and it didn't really help.  Our next neuro appt. is Nov. 4.

Thank you all for being here for me.  You are truly a Godsend.  I talk about it at work and with my family but know one understands.  

Jen

Thanks for the words of advice Cathi.  Phil has joined the message boards and he spends a lot of time on here.  I'm grateful that he did.  Before I was the only one reading and researching and now that he's doing it too we can tag team this beast.  I know there's no cure, but somehow someway we have got to find him some relief.  I know that I've come to the right place.  Supporters need support too and I know that I'm going to get that here.

Hi Jen

In this thread, Jackie, Donna_H and I have all been in your shoes.  Jackie and I are both married to long-term clusterheads and Donna was a clusterhead who found sweet remission but then ended up having to support her son through it.  We've been where you are, we totally understand your helpless feeling.  it's a language only other supporters truly "get".  

You've gotten some great advice in this thread but I did see something in your post that concerns me.  You say hubby has Imitrex AND Zomig?  You know that he must NOT ever take both of them within the same 24 hours, right?  They are both in the triptan class of meds and mixing triptans can cause terrible outcome.

Also, the body aches and lock jaw with imitrex.  I know a lot of clusterheads swear by imitrex and it really does help.  My hubby used it for years, along with oxygen.  But the cost was just to dear for him - he had the same issues with residual pain and..."tightenings" as he called it - I would think similar to your man's lock jaw.  It's a vasoconstrictor, which means it slows down blood flow.  There was someone here a few years ago that took too much imitrex and actually shut his stomach down.  Horrific pain.  

I firmly believe that Imitrex causes some people (not all, so no need for anyone to jump on me here), MORE cluster headaches.  It certainly did for my Mike.  He has switched to Zomig now and although it doesn't act as quickly as Imitrex (he uses the nasal spray form of both drugs), it does work for him.  He went from 8 attacks a day in his last cycle using Imitrex to 2 attacks a day.  No, it's not a cure but you know as well as I do that if we only have to watch, listen and hate their pain twice a day as opposed to eight times a day...well, it's a start.

Food for thought, anyway and please please please don't ever let him do 2 triptans in one day.  Also, some of the anti-depressants out there can make things worse for a clusterhead as well...

There's also the route of the non-traditional meds and they really have had some amazing results for cluster folk.  There has to be a detox from conventional meds before the alternatives are tried but the RC seeds,  psilocybin mushrooms and kudzu have honestly given quite a few people their lives back.  You can read about the first two at Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or .  Great people over there who really know their stuff and will help you with each step.  My hubby has absolutely gotten relief with these methods in the past.

Hope this helps.

I do know that he shouldn't mix the 2 triptans.  I learned that reading here.  He got the kudzu and the rc seeds and we know that he needs to detox before using the seeds.  What is the best way for him to detox?  Should we talk to his doctor about detoxing?  Will they help?  I will help him through whatever needs to be done to try something different.  Obviously what he's on know isn't helping him.  I want him to have his life back.  I almost feel selfish saying this, but I want our life back.  I devote most of my time to caring for him and working.  I will let you all know that I took some me time yesterday and took a really long bubble bath and read my book while I was soaking.  It was absolute heaven 

Margi,

I thank God everyday that I found all of you cheerleaders and coaches.  You all are truly a God send to me.  I don't have anyone else to lean on but my new family here.  I should rephrase that, I do have others to lean on but they don't understand what we are dealing with.  You all do.  I never thought that I could find so much comfort from people that I don't know that well yet.  I'm hoping to get to know everyone more.  Please keep the advice coming, I need all I can get.

THANK YOU THANK YOU THANK YOU!!!!!!!!

Jen

Best of everything to you too Aussie. 

I gotta tell you guys me and my man just had a really good talk.  He told me that yesterday he went trex free.  But, he just got a really bad visit from the beast.  He sucked his O2 (even at his measly 8 lpm) and shot up with the trex.  He also swapped his nose with the lidocanine.  He's exhausted now, but I have to say I'm so very proud of him.  He pushed through and instead of laying on couch in exhaustion he is up and about doing some work around the house.  All of you that have responded to all of his posts (and mine) have really inspired him to not sit around and feel sorry for himself.  I can't say thank you enough to all of you.

I don't know any of you that well but I love you all.  You are the most wonderful group of people and I'm so glad that you have welcomed us with open arms.  I wish that we had found you all sooner.  You are the true definition of family.  No judgements and I love that.  My family is full of judgements.  I feel so at home here.

Only 2 more days until we go to the pain clinic in Ann Arbor.   

Chat with ya'll later.

Jen