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        Supporter's Corner >> Supporter's Corner >> Frustrated
        
(Message started by: SweetMelissa on Jun 7^th, 2006, 10:49pm)

Title: Frustrated
Post by SweetMelissa on Jun 7^th, 2006, 10:49pm

Hey all,

I am totally frustrated and stressed again. My husband who is madflash is going through a rough patch right now and we aren't dealing with it well.
He started a new med about a week ago today, for the first day he experinced the usual side effects from med (don't know the name right off) and then the next morning woke without a CH for the first time since he was 17 years old (now almost 49) this continued for 3 whole days. We were on top of the world, we thought we had finally found the magic pill to kill the monster. Only the next day to be thrown back into a tailspin again. We thought for the first day that ok, it's only one day. But we are now working on 5 days with CH again.
I was feeling so happy for him, and so free with the thoughts of leaving the house without meds, without worries, and that he could be normal. Only to be let down in hard and rude way. Now I am frustrated for him and for us, for what we may have lost due to this med not working. I am trying to not let myself get too upset, in case they magically work again (not holding my breath.) I don't know how to deal with the let down, for him and for myself. He's been somewhat moody the past few days ( I believe this to be a side effect from med and from the stress and let down of it not working) and I do not blame him for it at all. I try not to start anything and I try to be patient but I feel like I am letting him down in a big way.
I am dealing with my own stuff right now too, left my job of one year three and half weeks ago, I have no money coming in and they are trying to screw me around bad. I've been on two job interviews this week and waiting for work from them, and I am due to start school in 2 months time. I just want this med to work so badly for him and I am praying so much that it does. I want him to be rid of the monster and to feel well so that he can do what he wants to do, and not be controlled anymore by this damn monster.
Sorry for the long entry but I really really needed to get this off my chest, because I just don't know what to do right now. It's very very frustrating and a big downer that this is not working they way we were hoping it would, and there is so much going on right now on top of it, that it makes everything worse.
Anyway thanks for listening. I am glad you guys are here :)

Sweet Dreams

Melissa

Title: Re: Frustrated
Post by Margi on Jun 8^th, 2006, 12:22pm

aw, big hugs, Melissa. Been there, walked in your shoes, darlin.

One of the toughest roles we have to play as supporters is that of coach. When our sufferers make some progress, we are cheerleaders and we feel the elation of their victories. Then, when they suffer a let down...we have to be there to hold them up and urge them to keep plugging along. We have to not show them our own personal frustration because that can end up making the sufferer feel guilty that they're causing US pain, on top of all the pain they are going through. It's a vicious circle, isn't it? A circle with no end and there are no easy solutions to this problem, I'm afraid.

It's really important to stay on top of what meds he's on...You are his researcher, his advocate with the doctor....it's one of the few things we can do to help, really - is to stay well-informed and know the side effects of meds, the dosages, how long it should take to show effects, etc. From your description, I'm guessing he may be on a prednisone taper? Not many other cluster meds offer immediate relief like that, nor do they stop working so quickly - like pred can when the downward taper begins. Pred can also lead to some pretty horrific mood swings too. IS it prednisone, Melissa? It's nasty stuff. :( Pred really can give a few days break and that's the time most folks introduce a preventative such as verapamil and/or lithium. Most preventatives take a while to get into the system and start working, so that's why they give pred so that the sufferer can get an immediate break.

Is he using oxygen or any abortive meds? I'm sorry, you've probably already posted about his regime, but I haven't been keeping up here a lot lately.

Again, big hugs and remember to take time to take care of you, too, ok?

Title: Re: Frustrated
Post by SweetMelissa on Jun 8^th, 2006, 1:54pm

Hi Margi,

Thanks for the post. It's great knowing that there are people out there that understand this monster and that you can talk to in a moment like this. I really am greatful for finding the site and being able to use it. I hadn't been posting but with this latest thing I just needed somewhere to go and so I turned here, knowing that I could vent and go on.
To answer your question the med he is on Clonidine 0.1 mg 1 tab two times a day. This is the drug that we just started and we thought was the magic bill. He's been on it about a week and half I think now. I loose track of the days so easily right now. The other drug that he is on right now is Mirtazapine 30 mg which he takes at bed time. He started this one with 1/4 for a week, then a half a pill for a week and then 3/4 for a week and then the whole pill now.
He has tried pred and nothing, he's been on verapamil and the lithium before too with no results. We are always on the look out for new meds and he has a great neruo right now. We are thinking to ask the neruo to up the Clonidine and see if that does anymore for him. It's still been a rather frustrating week, I don't think the weather has helped either. We are getting a lot of rain here and it seems to be adding to it. Thanks for the suggestions, and I am always on the look out for new things :)

Again thanks for being there :)

Melissa

Title: Re: Frustrated
Post by Margi on Jun 8^th, 2006, 3:09pm

Hi Again, Melissa

ok, I did some research and found out what you probably already know. Clonidine lowers blood pressure (like verapamil) and Mirtazapine is an anti-depressant. Has he only been on the Mirtazapine for 4 weeks now? Some clusterheads have noticed an increase in cluster activity after starting an anti-d and some have had some pretty bad reactions to them, making them poor candidates to be on them (my hubby included - he just can't take them).

You do have to be careful though, if he decides he wants to stop either drug it's real important that he doesn't stop either one of them suddenly, he'll have to taper back down off both of them if he finds they're not working for him.

IS he using any abortive meds, such as imitrex/zomig? How about oxygen? Oxygen, when delivered properly through the right non-rebreather/clustermasx mask at a high flow rate (more than 8 litres per minute), is an absolute Godsend for clusterheads.

I'm so sorry to hear that he's getting hit hard again. How's he sleeping? Looks like the clonidine should be helping him sleep at least. I see that it's recommended for migraine prophylaxis but not specifically for cluster (not all that uncommon that cluster doesn't get mentioned in these internet drug sites though, no biggie).

Has he (or would he) look into any of the alternative treatments for cluster (shrooms, seeds, kudzu)? He would have to detox off meds first if he wanted to try that route, but the alternatives really are helping a lot of folks find a good cluster management program. Just a thought.

Hang in there, gal.

Title: Re: Frustrated
Post by Redd715 on Jun 8^th, 2006, 3:45pm

Margi,

Have I told you lately what a great person you are?

[smiley=hug.gif]

Pegg

Title: Re: Frustrated
Post by SweetMelissa on Jun 8^th, 2006, 7:49pm

Hi again Margi,

Hubby has been on the Mirtazapine for 2 months now, I just mentioned the intro dose and how we started it. The second drug Clonidine has only been a week and half so far. We are hoping this one starts working again as it did in the first few days, but not holding our breath on it. We don't understand how it could have worked so well for two or three days and then bang they started again. We are confused with that. Hoping to get some answers next month from Nero to see what is happening. Hubby actually has two Nero on the case. Primary is Dr. McKelvey and secondary is Dr. Cook both here in Halifax/Dartmouth. This is on top of the family doc as well. We are looking forward to talking to Nero next month to find out what happened.

As far as other drugs, he is making me a list to post to the site so that you can see what he has tried. In the time that we have been together he has tried a number of things that have not worked, or made him ill from side effects. One being Imitrex, which did nothing to the headaches at all. That was a very frustrating couple of weeks. We have tried several anti d's only to have them not work as well. Mostly taking those to help sleep. Even that not great as he gets bad attacks at night and is up most of the night with them. He also tried zomig and found nothing with that as well.
As far as O2 he had to use too much and made not difference. It seems that his body just gets use to whatever we try and then it doesn't work. He get headaches every couple hours so O2 would be very hard to do, especially if we are trying to go out. We are both very active people and try to maintain that as much as possible around the CH.

He sleeps in burst right now, mainly due to the CH cycle that has started. The med is helping some but he sleeps more during the day then at night.

We have been checking into some herbs and things like that from drug store, but haven't tried yet.

Hubby has tried everything that is on the list on the quiz. Some worked for a few days and some not at all. He has taken things that are not on the list at all. He has been dealing with this since he was 17 like I said and is now 48 and still dealing. I've only been dealing with those with him for 6 years now, not a long time compared to what he's been through. When he has his CH cycle it is all day long but when he is not in the middle of a CH cycle he wakes with one and then might have 3 or 4 more during the day. But the cycles are the worse for him, he goes 4 to 5 days before then end.

He also has stomach problems due to the amount of aspirin that he has to take due to the CH attacks with his cafergot. It's hard to see him suffer the CH attacks and the stomach problems on top of it. He is on stomach pills for that too. It's crazy. WE have had to fight to get those regular because no one likes people to be on them for long periods of time. It's all very frustrating.

It's frustrating to me to watch him go through this all day long, but I can not imagine how it must feel and how tiring it must be to him and his body. All I know is that all I can do is sit by and support him during and try to understand the best I can. When you get your hopes up as we did it is a hard let down to find something does not work. It's hard, and I am still glad to have somewhere to turn too. Thanks again, we just pray that someday there will be a cure for this monster and no one else will have to suffer anymore.

Hugs

Melissa

Title: Re: Frustrated
Post by Margi on Jun 9^th, 2006, 10:04am

Good morning, Melissa - how was your night?

You know, I've really learned to hate all the cluster meds. I honestly think they make things worse. Imitrex increases frequency of attacks, verapamil extends cycles, lithium rots your liver, prednisone rots your bones, anti-depressants turn you into a zombie....I could go on and on.

I totally hear you on meds stopping working, too. That's happened to my Mike so many times I've lost count. He and your hubby are the same age and sound like they've been battling the same length of time too. Mike is episodic though, not chronic. He goes into cycle usually in November. Last cycle lasted 9 months for him and we firmly believe it was because of cluster meds. He did this med-free for 20 years and he never had a cycle last longer than 2 months.

Oxygen has been a Godsend for MIke, though - he gets on it at the first sign of attack and can usually abort within 10 minutes. He knows that if it doesn't work in that time to stop using it. How did your hubby try it? What flow rate? What kind of mask? Or did he use the nose canules? Certainly worth another try on the oxygen - it's rare that it doesn't help clusterheads.

And...this is only my opinion and one that I would insist you talk to a doctor about before you even attempt it but....what about working to get him off all the meds he's on? Let his body reset itself and do a "cleanse". Then, maybe look at some of the alternatives out there?

Lastly, has he tried Gravol or benadryl before bed? It can get a clusterhead through the night without any attacks because it doesn't let him get into REM sleep which is where the nighttime hits happen. He can only do this for max 7 days because then REM deprivation sets in and it's not pretty. Just a thought for you though -you can get it in generic form at Shoppers, but you do have to ask the pharmacist for it.

hugs,
Margi

Title: Re: Frustrated
Post by MJ on Jun 9^th, 2006, 11:10am

on 06/08/06 at 15:09:29, Margi wrote:

Has he (or would he) look into any of the alternative treatments for cluster (shrooms, seeds, kudzu)? He would have to detox off meds first if he wanted to try that route, but the alternatives really are helping a lot of folks find a good cluster management program. Just a thought.
Hang in there, gal.

It works for me!

Hi Melissa

I too started CH at 17 and now 48. Its a rough road we walk but maybe even rougher for you, watching, waiting, hoping.

On the current med, being that some results may have been had, maybe try reducing the dosage or stretching it out to a longer period between doses.

My experience has shown that a point of overuse can make things worse and may be the cause of all other meds not working for me.

Perhaps there is an equalibrium or maintenance balance point with the meds that should not be exceeded. Though the dosages may seem small it may be a smaller dose still that actually works. Opposite of what one would think.

Mad Flash is a lucky man to have you by his side.

Like Margi says Hang in there your days will get better.

Title: Re: Frustrated
Post by Margi on Jun 9^th, 2006, 12:06pm

on 06/08/06 at 19:49:42, SweetMelissa wrote:

He also has stomach problems due to the amount of aspirin that he has to take due to the CH attacks with his cafergot. It's hard to see him suffer the CH attacks and the stomach problems on top of it. He is on stomach pills for that too. It's crazy. WE have had to fight to get those regular because no one likes people to be on them for long periods of time. It's all very frustrating.

I missed this in your post. Aspirin for cluster? Well, I guess your hubby is living proof that all aspirin will do for cluster is eat holes in his stomach. That's about all it's good for in cluster treatment. He's also on cafergot? Wow. Sure sounds to me like he would benefit from a detox because I don't doubt that all these meds are counteracting each other and could very well be increasing the frequency of his attacks.

Title: Re: Frustrated
Post by SweetMelissa on Jun 9^th, 2006, 1:45pm

On the current med, being that some results may have been had, maybe try reducing the dosage or stretching it out to a longer period between doses.

HI MJ,

Thanks for writing. I appericate the info and insight. We have had some success today. He stoped his mirtazapine last night and when he took just the Clonidine it worked as of right now, he has not had a headache today so far. This is good and we hope it keeps up. He didn't like the effects of med anyway and I am just as glad that he is off the stuff.

We are working to find a balance with the meds and all.

Thanks I think I am pretty lucky to have him.

Melissa

Title: Re: Frustrated
Post by SweetMelissa on Jun 9^th, 2006, 1:48pm

on 06/09/06 at 12:06:16, Margi wrote:

He takes the Aspirin with cafergot when he has a headache, he also uses 222's as well when he doesn't take the aspirin. We are going to see if they are interacting, but he has cut down to almost no cafergot over the past few months. Right now we are hoping the Clonidine is going to do the trick now that it's not mixed with the other drug. He has not had a headache at all so far today.

Thanks for writing again. Have a great day,

Melissa

Title: Re: Frustrated
Post by Margi on Jun 9^th, 2006, 3:38pm

on 06/09/06 at 13:45:40, SweetMelissa wrote:

He stoped his mirtazapine last night

Please be careful....he can't just suddenly stop taking anti-d's - he's got to taper down off them. Please put a call into a doctor to get a taper schedule, don't wait for the appointment next month, ok? If he wants to come off the anti-d's, great - but urge him to do it safely please?

As to the aspirin, cafergot and 222's....I didn't even know you could still get 222's in Canada? The cafergot alone should be enough to abort the headache. To my recollection, there is codeine in 222's...that could be a real dangerous combination with the other meds he's on. Trust me, I know the urge to swallow as much ammunition as you can when a cluster hits is overwhelming and my husband has also gone this route. In the end, though, it does make things worse - your body just can't cope with that much chemical and, it's been our experience, that THAT is when cluster activity increases.

What happens if he just takes a cafergot and no aspirin or no 222? Does it not abort? If not, then please try to talk him back into trying oxygen. Aspirin or 222 will not touch cluster pain - he's just hurting himself by taking either one of them in my opinion. I know you said he's not mixing them but that stuff does stay in the system. How many cafergots a day is he taking?

I'm sorry for all the questions and I honestly don't mean to be sitting here firing orders at you. And I do truly understand the methodology by taking more and more meds to try to combat this horrific pain...but Mike and I have been down this road and the lingering side effects of some of these meds is just so much more of a hinderance and makes cycles so much worse than they have to be. Please try to talk to him about this, ok?

Hugs to you, Melissa - you're an awesome supporter and you're doing a great job doing all this research for him. Keep up the great work!! :)

Title: Re: Frustrated
Post by maffumatt on Jun 9^th, 2006, 9:29pm

You guys Rock!

Title: Re: Frustrated
Post by Ree on Jun 15^th, 2006, 10:54pm

Hi Margi... you are the best supporter.

One of Dave's doctors always tells him to boost the pain med or abortive with Ibuprophen for some reason it is supposed to make the pain med react faster.... worked for shoulder pain but he has never tried that with CH... I would imagine it would thin your blood more than you need.... sounds dangerous to me too...
any way keep up the great work.....love to you Ree
Sweet Melissa..... your husband is so lucky to have you. don't get discouraged. Breaking the cycle is key and you guys did it for a few days which means it CAN be done... keep believing..... be well Ree