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        New Message Board Archives >> 2005 Cluster Headache Specific Posts >> What would you do?
        
(Message started by: sgarner on Apr 13^th, 2005, 6:19pm)

Title: What would you do?
Post by sgarner on Apr 13^th, 2005, 6:19pm

I am a chronic for about 2 years. Have been using 02 with varied success. New Neuro about 5 weeks ago placed me on Depakote. I have had some diahrea but the worst side effect is that it makes me so sleepy during the day. I own 2 companies and the main one is an P & C Insurance that I mostly can run from the house (with the help I already have at the office). The Depakote really seams to have lessened the pain intensity of the headaches but I fear the side effects (current, know and unknown). Here is the problem
My wife will not even stay at home during the day (she doesn't work) if I am there - she thinks I should be working. Should I drop the depakote or the wife?
She sent my best friend over today to talk to me today about "coming to work and not staying at home". I am wrong. Do these bouts wear you guys out after one to where you sleep untill the next one? What do you your wifes do for you? or to you?

Currently on about 500mgs of verapamil a day and 2 500mg time released depakotes and night and 02 for the bad ones as well as imitrex

Title: Re: What would you do?
Post by maffumatt on Apr 13^th, 2005, 7:03pm

I would go to work, come right back and watch my house for awhile and see who drives up.

Title: Re: What would you do?
Post by Kris_in_SJ on Apr 13^th, 2005, 8:44pm

Hi sgarner,

I would start by suggesting she visit this site. I would encourage her to read the info here and on the links which might better help her to understand your situation. I would also encourage you to have her read the Supporters part of the board. Perhaps she could vent and get some insight.

My husband and I are both self-employed and both work from home for the past few years. It was a HUGE adjustment for both of us. We have our offices in totally separate areas of the house, which helps. Fortunately, we both know that we both are working.

Next, I would say ... talk to her, talk to her, talk to her. As long as you're "bringing home the bacon," what is she afraid of?

Hang in There!

Kris

Title: Re: What would you do?
Post by LeLimey on Apr 14^th, 2005, 3:37am

Hi S! Nice to meet you even if it has to be here. I'm going to play devils advocate for the moment. Some people are terrified by illness, she could be imagining allsorts, refusing to accept that "only a headache" can debilitate you like this (of course WE know better!) She could be imagining up all sorts of nasties that you "could" be suffering from and scaring herself silly. Some people cope by burying their heads in the sand and refusing to accept anything is wrong. You know her best, none of us know her from a hole in the wall so you truly are the only one who can possibly guess at her frame of mind.
It IS the hardest thing in the world to be a supporter. To see someone you love going through this much pain and being damn near helpless to rescue them must be just awful. I know I'm far "happier" with it being me suffering than I would be watching him.
I'd suggest you sit her down and talk to her about it. Maybe even get your neuro to explain it to her at your next appointment.
Meanwhile.. we have a fantastic, truly awesome section for supporters here where they can talk to each other, vent and give/take advice. Getting her to come and look at this board as well as the supporters board is a brilliant idea and I am sure it will help her come to terms with it.
Regardless.. WE will support you and help you here anyway. Pull up a pew, sit down and join in, I promise you won't regret it! Let us know how you are getting on, have a look through the archives and the medical info etc on the left. Have a look at the kudzu threads on the medications board, they might be of interest to you. There are LOADS of options.. its just a matter of finding what works for you .. and you will!
Let us know how you are getting on okay?
Regards
Helen

Title: Re: What would you do?
Post by Marta on Apr 14^th, 2005, 6:36am

Hi,

I'm not going to repeat what the others have said.However, the amount of Verapamil you're taking sounds excessive to me. I stopped taking mine because it made me absolutely useless and I was only on 120. I couldn't walk, think or do anything really.

Just an idea

Good luck

Marta :D

Title: Re: What would you do?
Post by don on Apr 14^th, 2005, 7:46am

Go to work and hire a a private eye.

Title: Re: What would you do?
Post by marty on Apr 14^th, 2005, 8:32am

Hi

My advice to you, is that since you obviously can sleep between hits, do so. If that means staying at home and working from home, that is what I would do. Sleep deprevasion is my greatest enemy when in cycle, if I could get more sleep I would deal with the hits better.

As said before, we don't know where your wife is coming from or what kind of person she is. More than likely, there may be other issues that are at play.

Maybe she could get a job. Then she would not have to worry so much as to where you are..?? You see, somehow this does not make sense, unless it is her way of pushing you (in a positive way) back into action as you used to do before the CH.

As to 2,500 mg of Depakote... No wonder that you are sleepy.. You may even experience balance problems, Jill did at a 1,000 mg of Depakote (Jill is chronic - I am episodic).

The way I look at life with CH is that I am number one. Because if I don't take care of myself first (sleep, food and other basics) I can not take care of anyone else. So, if I were in your shoes right now, I would (if it feels right) stay at home and run the business from there. I would also encourage the wife to go to this web site and check it out.

Another problem that I have with being in cycle is that I become an ass.... My ex-wife "fled" the house when I got hit as well. I was not violent or anything like that, just not a very nice person to be around.

Marty

Title: Thanks
Post by sgarner on Apr 14^th, 2005, 10:59am

Thanks for the input. I was trying to say 1 was taking (2) 500 mg tablets for a total of 1000mg (but they still made me sleepy.

I once was having chest pains at 1:30 am and she said she heard me rumbling around for my Nitro. She said she thought it was in the Cabinet and rolled back over to sleep.

This was a year after I was having an Kidney Stone Attack at 6:30 AM. She said why don't you call your mother. I hate to wake the children up at 6:30.

Title: Re: What would you do?
Post by vig on Apr 14^th, 2005, 12:34pm

and then again, some people just make crappy supporters....

Title: Re: What would you do?
Post by bellarains on Apr 14^th, 2005, 12:49pm

Sgarner,

Sorry, I am new here and can't offer much in the way of advice on meds, but I did want to pass along some obviously much needed sympathy your way.

I was in labor for 32 hours, had natural childbirth, and my son weighed in at 9 lbs. 10ozs. and that pain was no where near as severe as these headaches are. Tell your wife that. Maybe she can relate to that. If so, then tell her to imagine doing that every night for long periods of time. If she can't have some sympathy after that, the woman has a heart defect, and she might need to see a doctor ;)

I hope you find what works for you soon, and you get some relief. I am episodic, and can not imagine being chronic. Bless you heart. Wishing you PFD&N.

Lori

Title: Re: What would you do?
Post by Racer1_NC on Apr 14^th, 2005, 12:51pm

on 04/13/05 at 19:03:23, maffumatt wrote:

I would go to work, come right back and watch my house for awhile and see who drives up.

I believe this suggestion to be right on target........

Bill

Title: Re: What would you do?
Post by PCMCCK on Apr 14^th, 2005, 1:17pm

Assuming the best, that your wife, like so many other people, think that CH is like a normal HA and that we are a bunch of psychosomatic crybabies, I would have her read the posts on this site and also suggest some marital counseling for the both of you-I do get the impression that there are other issues going on in the relationship. You ARE working and making money so I don't understand why your wife wants you out of the house...suggest the counseling to her, as there obviously are problems in the relationship, even if just related to CH. If she doesn't want to go, then go for yourself. It might help you cope better with the effects of CH and also might give you some insight as to what is going on in your marriage.

Title: Re: Thanks
Post by LeLimey on Apr 14^th, 2005, 2:43pm

on 04/14/05 at 10:59:29, sgarner wrote:

okay I take back my thoughtful caring post from earlier.. thats uncalled for! Never mind S.. we'll all be your supporters here :) Vent away if you need to, we know where you are coming from hon

Title: Re: What would you do?
Post by pubgirl on Apr 14^th, 2005, 9:33pm

on 04/14/05 at 06:36:23, Marta wrote:

Marta

That amount of Verapamil is not excessive at all. 240mgs is the recommended start dose and many sufferers take up to 1000mgs a day. 120 mgs usually doesn't work, so it sounds like you were just one of the unfortunate people who get side effects from low dosages and have to stop before they ever get to prevention level.

Wendy

Title: Re: What would you do?
Post by don on Apr 14^th, 2005, 9:41pm

Quote:

However, the amount of Verapamil you're taking sounds excessive to me.

Low end end of barely effective.

I take 480 Mg a day.

Title: Re: What would you do?
Post by pubgirl on Apr 14^th, 2005, 9:50pm

r.e. what Don says

Sgarner, I know you weren't asking for advice here about medication, but despite what Marta says, it may be worth investigating working on getting your Verapamil to prevention level for you rather than "layering" drugs.

Some people find that the Normal release Verapamil, taken in smaller doses throughout the day can work well if the slow release one doesn't. The suggested regime here is that you have an ECG (very important) then increase your dosage by 200mgs every two weeks, with an ECG at each increase to a theoretical maximum daily dose of 960mgs. When prevention is achieved, the dose is held at that level until the sufferer believes the cycle (if episodic) to be over, then it is tapered down to nothing.
There is also strong evidence posted by Floridian that people who get night breakthroughs should take a higher dose before bed.

Might be worth a try as we have found that many people who think Verap is not working are having the medication dosed and managed incorrectly

Hope this might help

Wendy

Title: Re: What would you do?
Post by BobG on Apr 15^th, 2005, 1:10pm

This is a kinda Dear Abby/clusterheadache column.

on 04/13/05 at 18:19:53, sgarner wrote:

I am a chronic for about 2 years. rumbling around for my Nitro. Clusterheadaches and you take nitro? Whoa...bad idea. Nitro will trigger an attack big time.

My wife will not even stay at home during the day (she doesn't work) if I am there - she thinks I should be working. Should I drop the depakote or the wife? The wife

She sent my best friend over today to talk to me today about "coming to work and not staying at home". Best friend?......hmmm. I'd watch this guy real closely.

Do these bouts wear you guys out after one to where you sleep untill the next one? No, but I can't speak for anyone else.

What do you your wifes do for you? or to you? For me? She stays away from me during the attack. She doesn't like to but I prefer it that way. To me? She supports me and keeps informed about my condition.

Title: Re: What would you do?
Post by Gator on Apr 16^th, 2005, 4:38am

Quote:

Posted by: sgarner

My wife will not even stay at home during the day (she doesn't work) if I am there - she thinks I should be working.

I once was having chest pains at 1:30 am and she said she heard me rumbling around for my Nitro. She said she thought it was in the Cabinet and rolled back over to sleep.

This was a year after I was having an Kidney Stone Attack at 6:30 AM. She said why don't you call your mother. I hate to wake the children up at 6:30.

Should I drop the depakote or the wife?

Dude, sounds like it's time to upgrade to a more compassionate model. :-/ Then check into adjusting the med dosages. Also check into the Kudzu thread.

If you gotta have it, you gotta have it, but CH + Nitro = bang bang bang

She sent my best friend over today to talk to me today about "coming to work and not staying at home".

I would SOOOO be suspiscious of this. I'm thinking I would be leaving and coming back later to see who was visiting.

Do these bouts wear you guys out after one to where you sleep until the next one?

Nope, but I suffer from severe bouts of insomnia. After a hit I may be worn down, but I find it almost impossible to lay down. Fear of another hit, I guess. I mean, I was hit two and a half hours ago at 01:00 and here I still am.

What do you your wifes do for you? or to you?

My wife is there for me 100%. During an attack she fetches my freezer pack or a new bottle of O2 when I drain the one I'm using, fills syringes, gives injections if I'm being hit too hard to do it myself. She keeps me from hurting myself when I'm at an 8 working on a 9. Afterwards, she rubs my neck and shoulders and my head. In between hits, she won't let me get down on myself. She notices when I am spiraling downward and she does her best to catch me and bring me back up. She goes to neuro appointments with me when she can, which makes sense as she sees things I don't and is able to help the doc get a fuller picture of what is going on.

If not for my wife and this website, I honestly would not be here today. If nothing else, at least you have this website now, I guess. Sad. Truly sad.

Title: Re: What would you do?
Post by Karla on Apr 16^th, 2005, 8:24am

If you are having side effects from the depakote I would ask to try a different medicine. However, They all seem to come with their own set of problems. You are right to feel exhausted after an attack and want to sleep in. I was so worthless durring and after an attack I went on SSDI. That may help you and show your wife how serious this condition is.

Title: Re: What would you do?
Post by samsara on Apr 16^th, 2005, 5:08pm

Wow sgarner, I am sorry to hear of your un-supportive "supporter". I cannot imagine having to deal with a "call your mother, I'm too tired" attitude during something like this.

My husband doesn't exactly understand these HA's, and he has a tendency to think things are never as bad as they appear... but he does not ever let those feelings come into play during an attack. He trys to help however he can... which during a cluster I ususally just want people away from me. So he keeps himself and the kids away from me. He will fetch whatever I ask for, and then keep everyone away and take over running the household until I am ready to participate again.

As far as being wiped out after an attack, I have never felt that way before. I feel calm and relieved sometimes, but never sleepy. I would be inclined to blame that on your meds.

I will say that when I was taking verap, I found myself to be a lot more layed back and jello like than I usually am. I think it is because mixing low BP with a BP med = even lower BP... not good.

Anyway, I would follow some of the others advice and have your med routine evaluated. Nitro causes horrible headaches in most people, nevermind what it would do to a CH sufferer!

And your wife... I don't know what to tell you there. I would say there is a whole lot going on there that you may not be aware of. All her issues, by the way, don't ever let her make this about you cause it aint. I'm a chic, I know how we are.

Good luck and PF wishes...

Title: Thanks for all the help guys
Post by sgarner on Apr 17^th, 2005, 12:02am

I am going to try the Kudzu.

Title: Re: What would you do?
Post by clarence on Apr 17^th, 2005, 12:24am

Glad to hear you are going to try the Kudzu, but, please take into consideration the fact that we do not know all of the side effects of it, or the possible interactions with other medications.

Look at floridian's original post, as well as his Kudzu page at his website:

http://www.med-owl.com/clusterheadaches/tiki-index.php?page=Kudzu&PHPSESSID=5ee23e54b4ba420a1145ad81fe7ec18d

Also, Wendy just posted that it seems in the UK there were a couple of serious incidents with med interactions with Kudzu. That thread is in the Meds section

I am just saying that, as with any meds, you should take the potential effects into consideration.

I have had relative success with Kudzu. I haven't taken it with Imitrex, but I had very few negative effects with Kudzu and Verapamil. I did taper off the Verap soon after starting Kudzu.

Anyway, I hope you get some relief soon, and I especially hope that you can sort things with your wife. I feel for you bro.

Casey