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        New Message Board Archives >> Medications, Treatments, Therapies 2005 >> Hi new to the site and the wife of CH suffer (M)
        
(Message started by: WifeofCHSuffer on Jan 24^th, 2005, 3:26pm)

Title: Hi new to the site and the wife of CH suffer (M)
Post by WifeofCHSuffer on Jan 24^th, 2005, 3:26pm

Hi my husband was diagnoised last year with CH only after suffering for about 2 months with what all the docs though was chronic sinus infectins. Finally his regular doc said he should see a neurologist for CH. That was the long road to where we are today. He suffered with CH for almost 3 months before cycle broke. He did not have any headaches during the fall but our weather in SE MI has been crazy. One week is a high of 8 degrees the next week it is 54 with 7 days! We get snow, then it all melts then we get warm, then cold again. It is no wonder he is suffering so much, I as the wife can do nothing for him but be there and try and comfort him when he is in pain.

Everytime he gets a headache, sheer panic sets in that this is the start of the cycle but then it goes away for a few days only to return. They are now getting to be every day, his neuro put him on Vermphil, which did nothing, so back on the Topomax again to ramp up to 100 mg by the beg of Feb. Right now he is taken his meds regularly but he is getting really bad headaches.

His abortion meds are replax which help within 1/2 hour of the on set of a bad one.

Are we missing something here? No O2 helps, no other meds help.

Please tell me this is normal for a CH suffer. I don't know what to do for him, I feel as his wife I should fight the fight for him! I don't know what to do I hate to see him suffer, my son who is 4 1/2 yrs old does not understand what is wrong with daddy and mommy is 6 months pg and can't exactly take off with our son and go away for awhile while my DH suffers his attacks.

Cathy

Title: Re: Hi new to the site and the wife of CH suffer (
Post by miapet on Jan 24^th, 2005, 3:44pm

Cathy,
*hugs* I'm not sure what other medications your husband has tried? AND, on the o2, what kind of mask was a he using and was it a high flow valve? I believe it needs to be able to be set at about 15 lpm with a non-rebreather mask (if possible). If he used canulas that would cause a problem and if the o2 was flowing at a high enough rate that would also cause a problem (meaning it would lower the odds of working).

You truly are your husband's best advocate. Read all there is, ask questions, and go to the doctor loaded for bear. I think most of us supporters can send any doctor or nurse into a quivering bowl of 'yes ma'am / sir' in short order if they aren't giving our CHer what they need *g*

Take care of you, the little one, and the almost one.
Feel free to message or email me!

*positive light and energy*
miapet

Title: Re: Hi new to the site and the wife of CH suffer (
Post by WifeofCHSuffer on Jan 24^th, 2005, 3:52pm

Re: the O2 is was a nasal thing. It did nothing for him. I don't know how much of the O2 he did but it did nothing for him.

My husband has been on Vermaphil, Replax, Topomax all to break the cycle and predisone. I don't know what else to do for him and try to be supportive and just be there when the eposide goes ono but my son freaks out because daddy is crying and it is hard to be there for him and my husband at the same time. Most of the time my husband wants to be alone anyway but I hate to leave him alone because his face gets so red and his BP and heart beat so fast I am afraid he is going to have a stroke! [smiley=huh.gif] Is that possible?

Title: Re: Hi new to the site and the wife of CH suffer (
Post by Margi on Jan 24^th, 2005, 3:52pm

Cathy,
Miapet says it very well here - you ARE your hubby's best advocate. And she's exactly right, chances are if the oxygen didn't work for him, it was probably because of incorrect delivery method (as Mia says, high flow rate and correct mask - most doc's don't prescribe it that way ::))

Only thing I'd add to Mia's words are that if your hubby does prefer to be alone, respect that. Even if it just means being in another room in the same house - give him his time and distance if possible. And don't be offended by that. Keep your lil guy busy during the attacks and one thing one of our gals here did when her kids were little might work for you. She kept a box of "cluster toys" that her kids were only allowed to play with when she was having an attack. That way, it gave her a break and her kids knew that they would get some "special" toys when Mommy couldn't be at her sharpest.

Don't forget to check out our supporters' section here, too.

edit - I just read your post. Cathy, if your hubby prefers to be alone, please do that. Make a deal with him - when he's not having an attack - that he will PROMISE you that he will call you if he needs you. Stay within earshot but let him cluster alone. You could be making things worse for him by being there with him. Seriously - I know that sounds bad, but you could be adding to the guilt he's already feeling because of this stuff. He's seeing how scared you get and he needs to know that you're there for him, strong as ever. OK?
And, if your doctor is sure that it's just cluster he's dealing with - no other underlying conditions, no - he's not going to have a stroke or a heart attack with a cluster attack (unless meds cause it).
Revisit the oxygen therapy. Please.

Title: Re: Hi new to the site and the wife of CH suffer (
Post by WifeofCHSuffer on Jan 24^th, 2005, 4:04pm

I just am scared that with the pain/pressure he has that something bad will happen. I know it won't but it freaks me out.

I usually leave him alone but at other times he is crying and begging me to get it to stop and it is so hard to stand by and hold his hand and tell him it is going to be okay, when I know it is not for awhile. I try and just be there for him and when he wants me to be away from him then I am. I don't get offended, my husband and I very good friends and communicate very well. I don't have a problem with this at all. He feels bad because we can't be close and I really don't care, I would rather have him here with me is the most important thing.

I will start looking for some things that my son can do when daddy is having a bad headache, that is a great idea.

Title: Re: Hi new to the site and the wife of CH suffer (
Post by Margi on Jan 24^th, 2005, 4:11pm

ok, here's an idea for you Cathy.

Watch the clock. You probably know, on average, how long his attacks last. Count it down for him. Let him know he's only got 15 more minutes to go. 10. 5. Should be gone any minute, hon. You'll get through it, you always do. Shouldn't be much longer. That kind of stuff.

There have been times when my husband has needed me there with him too and I've done that for him. He says it helps him to remember that this pain will end. Hearing me say he's only got 15 more minutes of it seems to give him more strength.

One thing about the oxygen though - is it really forces them to calm down and breathe evenly. THAT is huge in cluster warfare. If they lose their cool - that old b/p escalates and so, in turn, does the pain.

Try laying an ice pack (or frozen peas) on the back of his neck at onset. That also helps to stay calm for some folks here.

Talk to him when he's not getting hit and ask him what he wants you to do. Having a little one seeing Daddy scared just rips my heart out too. Been there. It's just a tug-of-war on old Mom, isn't it? BIG hugs, Cathy - lots of us here have walked in your shoes and sometimes those shoes hurt like hell.

Seriously - getting him to calm down is the best idea. It's probably the hardest lesson my hubby ever had to learn. But it's made the world of difference for him and his pain has decreased vastly since he's learned it.

Again, please re-try the oxygen. High flow rate (must be higher than 8 litres per minute) and non-rebreather mask. Inhale at onset. Beg, borrow or steal some but give it a try. Even if you make a deal with your fire deparment - they might let you try theirs. Worth a shot.

Title: Re: Hi new to the site and the wife of CH suffer (
Post by JoeS on Jan 24^th, 2005, 4:35pm

Quote:

the O2 was a nasal thing.

We should emphasize that O2 through the nasal canulas does not usually work. Please have him retry the oxygen with a proper non-rebreather mask (medical supply place or local hospital should have one). When used right at the start of an attack, it has worked well for many a CH sufferer.

Best of luck,
Joe

Title: Re: Hi new to the site and the wife of CH suffer (
Post by Gator on Jan 24^th, 2005, 9:03pm

Hi Cathy. Welcome to our little corner of the net. I'm sitting here reading your posts and my heart aches for you. I am a clusterhead and I see how my own wife suffers while she tries to help me through the attacks. The words do not exist to say how I feel about you who support. I don't know what I'd do without my wife.

Listen to Margi, she's been supporting a hell of a lot longer than I've had CH. There are quite a few supporters that frequent this place. Hop on down to the supporters board and have a look around there.

Despite all the brainwashing you've had that doctors are all knowing, they aren't. There are relatively very few who understand CH well enough to treat it effectively. You and your husband need to read everything you can get your hands on and learn about this disease and what works. The links to the left are full of good info. Visit the OUCH website as well.

Check you messages. I have sent a list of links to more information there.

I am so sorry you even have a reason to be here, but you could not have found a better place for information and support. These people are the best. They have definitely saved a life or two with their compassion and concern for their fellow sufferer. If you ever have any questions, just ask. The only stupid question is one you didn't ask. If you don't want to ask in an open thread, you can use the Instant Message service of this board to ask me or anyone.

Again, welcome to CH.com. Get that husband of yours to come on in and say hi. We'd like to meet the lucky guy who has someone like you in his corner.

Gator

Title: Re: Hi new to the site and the wife of CH suffer (
Post by Kris_in_SJ on Jan 24^th, 2005, 9:24pm

Hi Cathy,

Read whatever it is Gator sent to you. You'll learn alot and I would have probably sent you the same things.

There are a number of sufferers in Michigan. I'm just across the state from you. I'm a sufferer currently out of cycle. Don't quite know what I'd do without my husband/supporter. If you ever need to talk, just PM or email me for my phone number. We're here to help in any way we can.

Many hugs,

Kris

Title: Re: Hi new to the site and the wife of CH suffer (
Post by WifeofCHSuffer on Jan 24^th, 2005, 10:09pm

Great ideas everyone thank you so much for the tips/tricks and so forth. It is great to have a place to come to for help. I felt so alone until now on how to help him through an attack. Every day he has a headache we think okay is this the start of the cluster or is this just another migraine that his suffering through. It is awful.

He is getting more and more frequent attacks on one side traveling all done his face and into his neck. I just hope we can get the right course of treatment soon and the Topomax starts working. The neuro did not call him back today so hopefully tomorrow morning he will get a call from him with the next course of action.

I will mention to him about the Imtrex shots maybe that is something he can try. I know some of the meds he tried did not touch his headaches at all. Relpax seems to be the wonder drugs for him and for the most part work within 30 minutes of the onset of a migraine.

Do any of you find that sugar is a big trigger for your CH? DO you have a tirgger?

Again thanks so much for helping me and being here for me, I really appreciate it!

Cathy

Title: Re: Hi new to the site and the wife of CH suffer (
Post by ccbiggsoo7 on Jan 24^th, 2005, 10:45pm

Cathy we feel for you and believe me we know what you are going threw. Jan and feb are always my worst months due such extreme weather changes here in St. Louis. 60 one day 10 the next. Definately get the imitrex, and read the trex tips here. This is a godsend for a lot of us here. Topamax did nothing for me, but the lithium, verapamil combo works wonders for a lot of us. o2 helps but you got to start it at first signs of headache. The nose piece the doc gave you is a waste of time and o2 get the non rebreather mask. I would be more than happy to send you a free trial of the trex if for some reason your husband can't get in to see the neuro. soon. I luckily have great insurance and have a pretty good stockpile on hand. Make sure I get them refilled every month wether I need them or not. No such thing in my house as getting caught short when I need them. Been there and done that. Prayers!

Title: Re: Hi new to the site and the wife of CH suffer (
Post by WifeofCHSuffer on Jan 25^th, 2005, 10:05am

tried to send you an email but I am new to this site and not sure how it all works so.....

I would love for him to try this and he said he is open to anything at this time. I would be truly grateful if we could get a treatment from you. His neuro still has not called him back, I am just a little less than understanding right now over this. He is a CH suffer not just some headache person. Hello he is reaching out and you are not willing to help?! UGH!

Let me know what you need from us and thanks again!

cathy

Title: Re: Hi new to the site and the wife of CH suffer (
Post by Margi on Jan 25^th, 2005, 10:20am

Good Morning, Cathy.

OK, here's where you CAN help him. Sharpen your teeth, honey, and call that neuro's office yourself. DEMAND that he been seen a.s.a.p. Tell them that he is nearing the end of his rope and so are you. Find a way to catch their attention and don't let some Hitler-wannabe receptionist blow you off.

Print out the information in the oxygen button to the left, here and anything else you need from the medications pages. Verap/lithium combo is a very popular preventative route, and get him some imitrex.

There's precious little we supporters can do to stop their pain - but, hell - this is where we can shine. Don't wait for that return call. Make a pest of yourself until they will see you. And go with him to the appointment if you can. Take your lil guy if you don't have a babysitter. This also helps to impress on the medical professionals that this isn't just an affliction that affects the sufferer - it devastates the entire family.

Go nuts, Cathy - here's where you can find a vent for some of your own frustration.

We'll expect a full report, of course. ;)

Hugs and courage prayers being sent to you.
Margi

Title: Re: Hi new to the site and the wife of CH suffer (
Post by WifeofCHSuffer on Jan 25^th, 2005, 11:12am

You are so funny! The neuro and I have a good relationship and he is a very good doc. I am giving my husband until his lunch hour to call and then if he does not, I will call.

Last year when he was on the Topomax and was so depressed i called the doc myself and told him what was going on with my husband and he said it sounded more like depression than anything else. I just about lost my top, I said I have been a prisoner in my home for four months dealing with his headaches, the cluster broke and now you are telling me he sounds like he is clinical depressed, are you "f" kidding me?! The doc made an appointment for him the next AM and we found out that some people who take Topo become depressed. He is back on it now and I am his advocate for the depression and when I see it starting he is going to back down the dosage to see where he can be with the headaches and the dimishing depression.

Like I said being pregnant I need this like I need a hole in the head!

I will update this afternoon with the latest! ;;D

Title: Re: Hi new to the site and the wife of CH suffer (
Post by WifeofCHSuffer on Jan 25^th, 2005, 2:34pm

So yesterday husband was off all day left a message to have the doc call him at home if not he would be back at work today, left both numbers. What does the office do today, call him at home to discuss Topomax. :-/HELLO! I said i was going to be at work today!!! Okay so i am very upset now.

Husband calls and talks to the nurse who said the neuro wants me to bump up the Topo to 50 mg twice a day, starting tonight. :o Does that seem okay?
[smiley=furious.gif]

Title: Re: Hi new to the site and the wife of CH suffer (
Post by Gator on Jan 25^th, 2005, 3:02pm

Despite the brain dead office staff, it sounds like the doc is prescribing the way a lot of people here have had. There are lots of people Topamax has helped once they found that magic number.

You will find that what works for one person doesn't work for someone else and vice versa.

Use Google to find info about Topamax. It is a good idea to look up any med that is prescribed so you will know what to expect with side effects and drug interactions. If you find something that doesn't sound right, talk to your doctor and pharmacist. They may have accidentally overlooked an interaction. Doesn't happen that often, but...

Hope things get better for y'all, soon.

Gator

Title: Re: Hi new to the site and the wife of CH suffer (
Post by Kris_in_SJ on Jan 25^th, 2005, 8:05pm

Hi again Cathy,

Just a note for future reference. We have a private message system here that's very useful. If you want to send a message to a particular person, just click on his/her name wherever it appears on a post. At the bottom of the screen you'll get the option to "send this member a private message."

I only mention it because Imitrex "disposal" or transfer needs to be done privately and should never be discussed openly on the board. We need to stay legal.

Hugs,

Kris

Title: Re: Hi new to the site and the wife of CH suffer (
Post by BMoneeTheMoneeMan on Jan 26^th, 2005, 10:15pm

Cathy, I have found that O2 and Imitrex do help greatly. It is a good idea to demand them from the doc. Be assertive and tell the doc that your hubby's suffering intensely.and the CH is impacting his life and his family.
I have found that meds do help, not painkillers though. You just have to find the right one by trial and error and stick with the ones that help. I think that most of the people here say that Imitrex injections help them beat the beast quickly. There is a high probability that your hubby will get relief from it.
You wives are great! My wife has supported me tremendously and it means a lot.
PF wishes to all
BMonee

Title: Re: Hi new to the site and the wife of CH suffer (
Post by jillybean on Jan 27^th, 2005, 10:25pm

Hi Cathy,

I am the wife of a ch sufferer also.

I identify with your struggle to get doctors to understand the level of urgency necessary.

Tests next week. Referrals and another 2 weeks for an appointment.

Sometimes I just want to scream.

"Don't spin us out the door and forget about us!"

I have three boys who get upset to see hubby in pain too. Mine are a little older than yours.

Has your husbaqnd tried melatonin to sleep? I am ashamed how long it took me to decide to try it. The first night provided long absent zzzzzzz's for him.

Best wishes.

Jill