Haven't seen many new posts lately.  Everyone must be filling their summer up with great memories!  As for us, my Ch'er and myself, we are still living moment by moment.  We are building memories too...although shorter ones at a time, as PF hours are a blessing with three to four hits a day everyday.  We took our yearly daily trip to the Medieval Faire. Two of our grown children and their families went the same day with us to help make it more special.  It is such a blessing to see him smile, or enjoy something.  Even though we usually leave earlier than most, he will wait until his hit...then we get in the car and I drive.  I do most of the driving anywhere that he needs to be behind the wheel longer than 10 - 15 minutes at a time.  Chronic CH....who would have thought.  I continually try to find things to make life worth living for him. What kind of things do you families of sufferers enjoy doing?  Or...what "have" you been doing this past summer.  Just looking to continue new ideas and blogs to share, while reaching out.
Beth

Have you visited our sister site?

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Beth, I am not sure if we have talks about your husbands treatment program. Is he using oxygen? How about that and. Red bull energy drink at the onset? Also, have you seen the thread about the vitamin D3 regimen!

I am going to forward you an email about a special study in Pa.

Christy

Beth, just forwarded you that email I mentioned, and check out this link if you haven't:

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Thank you all!  I have printed out much information that I find.  I can't get my CHer on here yet at all.  But he knows I am on.  He is leary of trying things he has tried already...including O2 therapy. I told him it was done very differently now, but he just hears O2 and knows he tried it. He is very discouraged at this point.  He says he is "tired of taking meds all day everyday".  We have some Omega 3 fish oil in the cupboard, so maybe I will begin putting it in with his medications.  Possiby will pick up some D3 also.  I will mention this to his PCP and Nuero.  He hasn't had the D3, so possibly he will try that.  He loves being outside and stays active when he can.  If I could only get him on here to see for himself that he is definitely NOT alone with this in the world!!  You are all an inspiration to me.  It is hard not seeing the light at the end of the tunnel, but having friends to walk with you thru it, makes it much less scarey and lonely.

Beth we have heard many times about 02 not working, followed by success stories when revisited after reading our inf on proper use. I hope it will help your husband as well. You have thousands of members with testimonies on this site! Hope I helps and meanwhile we supporters are here for you too.

Christy

Hi Beth  :)

Phil and I have been just hanging out this summer...either in the pool or with friends in their pool.  It's too flippin' hot to want to do much more.  We can't wait to go home to Michigan next month to get a break from the heat.

O2 didn't work for Phil either at first.  We met up with some people that gave him so tips and he figured out what he was doing wrong.  Now O2 and energy drinks are his go to aborts.

Hope your sweetie catches a break soon.

I REALLY want him to try the O2 again this way!!! I will be mentioning all this at his next appointment.  If I just mention at home...it doesn't go far and we can't do anything about it anyway without the prescription for it.  I have mentioned energy drinks...I think I will just purchase some.  Ya never know, he may just pick one up on his own when he gets desperate enough.  Do you chill them? Keep them refrigerated or room temp? I see it is best to chug...maybe hard to do cold?  I never drank one at all...so don't know anything about them.  Are they carbonated? 

Also, some people have said that milk may not be the best thing to have a lot of.  Has anyone have any thoughts or experiences with this?  He drinks  a LOT of milk.  He says it calms his stomach when it gets upset. 

I believe I am registared for OUCH and Clusterbusters both now too.  I will just keep plugging away, reading, questioning, and praying. 

Thanks everyone!

Beth

Quote:

...we can't do anything about it anyway without the prescription for it.

O contraire. Buy your own from a welder's supply house. A lot of people on here do just that.

I'm getting the vibe from you that your DH doesn't really want to do much to improve his situation, and that you may be doing a lot of pi$$ing into the wind. Does he really want to stop hurting? If so, he's going to have to take a much more active role.

Hi there!  You are getting some awesome advice from these wonderful people. 

As to your original post, creating memories between the dance numbers is definitely a challenge, but as a Supporter, I have it to be a very exciting one.  My DH is also a chronic Sufferer, with an average of 4-5 hits a day.  I have learned to plan events around them, as well as always having his prevent (Redbull) available if I'm worried an event will run into one of his dance routines.

Our outings normally consist of things outdoors.  My DH becomes anxious if we are in a more public place (fear of having a hit with no escape from people who don't know what he has) so we tend to go fishing, take nature hikes, and overall enjoy the beauty that is our world.  Animals have always been my DH's biggest loves, so any time there is a new show in the local area, you can probably find us there, looking for the next baby to bring into our lives.

I may be one of the odd Sufferers, but I believe I have found the silver lining in my DH's repeated dances...he has allowed me to look at life and see the beauty that I would have otherwise passed by.  The joy he takes in the times between the hits is infectious, and is something I'm glad to be a part of.

Beth we keep Phil's energy drinks in the fridge...he told me drinking them warm would be like drinking piss.  I don't know how he knows what piss tastes like and I don't want to know either  ;D ;D ;D

Phil prefers NOS or the Monster Coffee Energy drinks.  I buy them at Dollar General...their a little cheaper there than the grocery store or gas station.

Akina wrote on Aug 16^th, 2011 at 4:58pm:

Hi there!  You are getting some awesome advice from these wonderful people.  As to your original post, creating memories between the dance numbers is definitely a challenge, but as a Supporter, I have it to be a very exciting one.  My DH is also a chronic Sufferer, with an average of 4-5 hits a day.  I have learned to plan events around them, as well as always having his prevent (Redbull) available if I'm worried an event will run into one of his dance routines. Our outings normally consist of things outdoors.  My DH becomes anxious if we are in a more public place (fear of having a hit with no escape from people who don't know what he has) so we tend to go fishing, take nature hikes, and overall enjoy the beauty that is our world.  Animals have always been my DH's biggest loves, so any time there is a new show in the local area, you can probably find us there, looking for the next baby to bring into our lives. I may be one of the odd Sufferers, but I believe I have found the silver lining in my DH's repeated dances...he has allowed me to look at life and see the beauty that I would have otherwise passed by.  The joy he takes in the times between the hits is infectious, and is something I'm glad to be a part of.

What a beautiful post Akina.....your sufferer is a lucky person! [smiley=hug.gif]

Joe

Beth, my husband prefers the sugar free Red Bulls. The sugared ones seem to be too sweet for him. He likes it over ice.  I get this for him as soon as I hear "Olivia" (his oxygen tank) clanking as he gets started on it.  I also have one of those refreezable ice packs (like has beans in it or something) that I get and just set next to him. Somes times he uses it, sometimes not.

We really try not to deviate from normal activities when he's in ch cycle. We just always take along the 02, imitrex and we keep a redbull in the car. Hadn't thought about the fact the redbull isnt cold, but he'll drink it in a pinch. (Jenn maybe he can tell you what piss tastes like!)

Unfortunately we have been known to leave events early due to a massive hit that he didn't get going on the 02 fast enough. Those seem to be less frequent, especially since he now has imitrex.

LOL Christy  ;D ;D ;D ;D

@Brew...at times I feel you're right!! Sometimes I get tired of trying to help when it seems he won't even help himself.  I just don't know if it is depression that has set in, and if so...that is just another illness as well, and until that is gone, he possibly won't attempt to either.  I want to be a supporter and not an enabler (sp?)  But of course, no one else around sees the pain side much, or the angry and depressed state.  He seems to rally enough energy if anyone else is around; to be pleasant.  He tries real hard when the grandkids are around, it is almost the only time I see him smile anymore.  I just keep praying he will get curious one day, and get on one of these sites....then maybe he won't seem so alone.

You've hit the nail on the head - We never feel as alone as when we are clinically depressed. Knowing that there are others who share our pain, and then being able to identify with them on a personal level, is what saves most of us.

Very few people find relief from true depression through chemicals. More often it comes from building relationships with kindred souls.

If he doesn't catch it with Imitrex, or has had too many, and takes pain meds instead, he will use an ice pack. I have a few different re-freezable styles also. Lately he has been taking more sleep meds at night, but still getting up with a hit!  His pain meds scare me, cause he has so much of them.  But he has also taken way too much imitrex also.  Right now, the headache specialist (neurologist) wants him to detox to begin trying updated treatments.  But we are now working with the VA only for the past two months, and everything must be done through them, or with their OK as far as paid assistance.  He will not see their neurologist (specialized) until Oct!  I will ask him if he would try the O2 again, the way you all have suggested.  I can purchase the O2 and the mask myself.  It is the least I can do.  I also just bought some more Omega 3 Fish oil and some D-3.  I am debating just putting some in with his meds and see how things go.  Now "I" am the one getting desparate. 

Has he tried melotonin? I am not sure of the dosage (but am sure if you search in the treatments section you'll find it). Many find if they take it before bed it will help them get through the night without getting hit. I think it has something to do with REM sleep or something, not sure.

I think, and I'm sure someone will correct me if I'm wrong, a lot of sufferers take anywhere from 9 - 18mg of melatonin. 

I agree that your hubby needs to get more involved with wanting to manage the pain.  Maybe you guys could sit down and talk it out.  Express to him how much it's hurting you that he doesn't seem to want to do anything to help himself or even listen to you or read the things that you print off for him.  Tell him that you want the person he is when the grand kids are around to be around even when their not there. 

Being in pain all the time sucks, but there are so many things that can be tried to help manage it.  It takes time to find the right combo, which can be frustrating in itself.

I'm glad that you're hanging around and still asking questions though.  Don't doubt what this site is doing for you as a supporter.  I know when I first came here, as selfish as this sounds, that it was about me.  Phil had been dealing with CH for so long by himself and hiding it from me that I had no clue what to do or how to help.  It was a relief for me to find others that could help me know what to do to help him.

He takes 4 Melatonin at 10 mg each.  Also 3 atavan. (sp) He is only supposed to be taking one of those.  Thanks everyone for your support too!  My prayer is that NONE of you has to dance the dance!

You're doing all the right things Beth. Hang in there. We are here for you, and him, when he is ready.

Quote:

My prayer is that NONE of you has to dance the dance!

Prayers are always answered - it's just that sometimes they're answered with a "no."

We all pray that none of us has to dance the dance. When our pleas don't exactly line up with God's intentions, it's good to have a backup plan - like preventatives and abortives.

Caution: 40mgs of Melatonin is an extremely high dose and may be dangerous. Forgive me if I've misunderstood.

I use 9mgs. The highest I've heard for CH, 26mgs.

Don

Hi Beth,

It always seems to be harder for the carer than the patient, as someone said in an earlier post. It seems that your husband does not want to help himself, it seems to me he has fallen into the routine that this will never go away and i cant be bothered anymore. Unfortunately if he keeps going down this path his depression will only get worse, i know as i have been down that path and it can be very scary.

With all the pain that your husband is suffering and it always looking that there will never be a light at the end of the tunnel, it is only natural that your husband will get very depressed and unfortunately all the anger and the mood swings that he is feeling always gets taken out on the other members of the family.

If you can get your husband onto this site and he can see for himself that there are alot of other people in his situation and that everyone on here is going through the same thing, he will find that there are always people here to listen to what he has to say, i hope that he will some day come on and have a look at all the alternative treatments that people talk about and that maybe there is one on here that he hasn't tried before and will be willing to have a go with. I would also suggest that he give to O2 treatment another go using the right method and see if he gets any better results with it. As they say it may or may not work but you don't know if you don't give it another go.

You mentioned that he was taking some meds but going over the recommended doses, you should make sure that your GP or Specialist knows about this as they might recommend something different and stronger to try and prevent the attacks. What else does he use to try and stop the pain once the attack has started?

Sorry for rambling on but i have been through this as the CCH sufferer and my family copped the brunt of all the crap that i was going through and it wasn't a pretty sight. My longest cycle was for 18 months and i had my ups and downs, but the pain was there 24/7 and it was harder on my family, so you as a carer must also make sure that you don't start forgetting about yourself.

Please remenber that i am not a Dr and that these are ony the thoughts of another sufferer, so i feel for you and your husband.

Hopefully we will be pain free one day.

Matt

An excellent post Matt and I totally agree with the contents.

The dose of melatonin seems to be very high. If this pattern is being repeated with other medication then it might explain a few of the problems with things not working as they should. I would certainly discuss this with his doctors. For CH we often take what are high doses, so going significantly higher has risks and impacts.

He is supposed to be on two 10 mg of Melatonin, and that's what I put in his medicine "bin". But he always adds two more on his own.  I get frustrated, but I don't say anything more about it anymore.  It doesn't make things any better.  I have purchased the O2ptimask, and am looking on Ebay for a regulator now.  He is a mechanic, so I don't think I'll have any problems getting O2.  But I may ask his PCP at the VA to prescribe, as without him working, it may be easier on the pocketbook.  I have bought the D3.  We already had Kudzu and Omega 3 that were suggested by his prior specialist.  But after a few weeks, he gets tired of taking all the pills if he doesn't see anything happening.  I told him he needed to give them time to work.  I have re-incorporated them into his med "bin" again.  Hopefully he will stick with it.  He has been on dilaudid for over a year now.  They are now attempting to slowly detox him from them, but without insurance, we cannot go to the specialist he has been.  So whatever the VA can do and will do, is all we have for now.  He will be seeing their neurologist in Pittsburgh in Oct.  Hopefully talking with them and giving them his records and all the information we have, things will progress better from there. 

This site, along with OUCH and Clusterbusters, is in the Favorites on our computer.  I am hoping that one day he gets curious and checks it out. 

As for me, I work full time, help my parents out also.  But I do take some time for my favorite hobby.  Music and entertaining.  I sing classic country, gospel, bluegrass..etc..  At times he will come along, but mostly he doesn't.  I do not take that personally, as I would not be able to run right off a stage, and do not want him driving with an attack!  I try to be home with him when I can, but I realize now, that men were made to be out of the home working, not at home full time.  There are times I wish I could trade places with him, but I know he would never wish that on me.  You all are a blessing!

Beth

Beth E wrote on Aug 20^th, 2011 at 10:19am:

He is supposed to be on two 10 mg of Melatonin, and that's what I put in his medicine "bin". But he always adds two more on his own.

Swap the 10mg tablets for 2 x 5mg, then let him add two more to make it the correct total.

Very good idea Mike, thanks.

Best of luck to you two. We understand what a hard road it can be.

Don