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   Author  Topic: Joys of the night  (Read 2232 times)
Ungweliante
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Joys of the night
« on: May 19th, 2008, 9:52pm »
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It's 04:38 in the night and I'm up. Yeah, another attack. I just tried 100% oxygen administered through a high-quality CH mask I ordered all the way from Denmark at 10 liters / minute and it did absolutely nothing for the attack.  
 
I've also been munching 120 mg of verapamil per day, which led to incredible bloating and constipation and had to be discontinued. 9mg of melatonin before bed did absolutely nothing for the attacks either. Current treatment is 1200mg of valproic acid per day, at two 600mg doses...and the effect is, you guessed it, nada, zero, zilch, nothing. Been taking it since 12th of this month, 900mg per day since 6th day and 600mg since 26th of last month. I mentioned lithium to the neuro I've been seeing and he seemed kinda apprehensive. Apparently it's "bad stuff". At least the neuro is really sweet, and would prolly prescribe it, if really necessary.
 
So far the -only- thing which is helping is steroids. I seriously need to find something that works. I really really do. Like perhaps stop eating and sleeping, seeing as those two things seem to be major triggers for these attacks?
 
...sigh. I hope I didn't depress anyone with this.
 
Rosa
« Last Edit: May 19th, 2008, 9:55pm by Ungweliante » IP Logged
Brew
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Re: Joys of the night
« Reply #1 on: May 19th, 2008, 9:59pm »
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on May 19th, 2008, 9:52pm, Ungweliante wrote:
I mentioned lithium to the neuro I've been seeing and he seemed kinda apprehensive. Apparently it's "bad stuff".

Then your neuro is a sweet idiot. You should give it a try. Either by itself or in combination with verapamil. Many here have found it to be a magic bullet, myself included.
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Re: Joys of the night
« Reply #2 on: May 19th, 2008, 10:47pm »
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Hi, and sorry you are getting hit. This is just me but I needed 480 mg Verapamil daily, the lower doses did nothing, but my CH's backed off once I went to 480 mg daily.
 
I hope you find what work's for you, and the o2 must be taken at the very first sign of an on-coming hit, and at 15 LPM to saturate your system ASAP!
 
With Verapamil, you will need a fibre cereal, trust me on that one. Keeps all moving. Wink
 
    Barry Smiley
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mezza
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Re: Joys of the night
« Reply #3 on: May 19th, 2008, 11:58pm »
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Hey  
 
sorry you're still suffering!  I hate that uncontrollable kind of feeling-  
 
I too like barry had to increase my verapamil to get the desired effect.  I take 660 mg a day.  I am now tapering off the bedtime dose - and still no hits ( had some shadows last week but none this week)
 
Seems like brew said that perhaps a combo of meds with effective doses might do the trick-  If i needed to take lithium - I'd do it if helped with my pain- seems like enough people here are taking it and found it to be very effective  
 
Sounds like its time to revisit the doctor to get a better plan going!  Hang in there
 
kelly
 
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Re: Joys of the night
« Reply #4 on: May 20th, 2008, 6:30am »
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Hi Rosa,
 
120mg of Verapamil is a pretty low dose.  I had to switch from the sustained release formulation to the regular release type.  Then I slowly went up by 40mg a day to get to my current 400mg / day which is very effective.
 
On the constapation front, try Mirilax.  Not sure what it's called out your way.  It's not a laxative, is very mild and works like a champ to keep the plumbing moving.
 
http://www.miralax.com/default.html
 
Lithium is scary for any Dr that isn't used to perscribing it.  We clusterheads only need half what they typical bipolar sufferer needs.  The complication for the Dr and you would be the blood work needed to check your levels.
 
Take a copy of Dr Rosen's article back with you next time.  Maybe it'll get the conversation headed in the right direction.
 
http://www.plainboard.com/ch/chtherapy.pdf
 
Good luck...
 
-Dennis-
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thomas
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Re: Joys of the night
« Reply #5 on: May 20th, 2008, 8:44am »
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on May 19th, 2008, 9:52pm, Ungweliante wrote:
10 liters / minute and it did absolutely nothing for the attack.  
 

 
You need more O2 15-25 lpm.
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Re: Joys of the night
« Reply #6 on: May 20th, 2008, 11:01am »
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Rosa,
 
I'm so sorry you're hurting... hughughughughug
 
Wishing you PF time asap,
Sanna
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Linda_Howell
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Re: Joys of the night
« Reply #7 on: May 20th, 2008, 12:46pm »
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  I'm with Thomas, Rosa.
 
UP...that 02 to at least 15 lpm.   That could well be the reason it isn't working for you.
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Re: Joys of the night
« Reply #8 on: May 20th, 2008, 1:07pm »
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We in here know about the 15lpm recommendation, but unfourtunately, the Finnish guidelines do not. According to the brand new guidelines in here, oxygen is (finally!) included, but at 7-10 lpm. Sad
 
Sanna
 
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Ungweliante
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Re: Joys of the night
« Reply #9 on: May 20th, 2008, 4:24pm »
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Well, I'm now on topiramate. Gonna taper valproic acid down and topiramate up at the same time, up to 100mg per day. Hopefully it'll help. I also got 5mg nasal zolmitriptan sprays.
 
on May 19th, 2008, 9:59pm, Brew wrote:

Then your neuro is a sweet idiot. You should give it a try. Either by itself or in combination with verapamil. Many here have found it to be a magic bullet, myself included.

 
on May 19th, 2008, 10:47pm, barry_sword wrote:
Hi, and sorry you are getting hit. This is just me but I needed 480 mg Verapamil daily, the lower doses did nothing, but my CH's backed off once I went to 480 mg daily. With Verapamil, you will need a fibre cereal, trust me on that one. Keeps all moving. Wink

 
on May 20th, 2008, 6:30am, DennisM1045 wrote:
Hi Rosa,
 
120mg of Verapamil is a pretty low dose.  I had to switch from the sustained release formulation to the regular release type.  Then I slowly went up by 40mg a day to get to my current 400mg / day which is very effective.
 
On the constapation front, try Mirilax.  Not sure what it's called out your way.  It's not a laxative, is very mild and works like a champ to keep the plumbing moving.

 
The problem is...I've always had a problem with constipation and just 120mg of Verapamil per day made things go absolutely out of control. -Nothing- moved whatsoever. The neuro thought that discontinuing Verapamil at that point was the only sane thing to do...I had already taken maximum doses of Miralax and Laxoberon, two types of laxatives, together, in the span of two days.  He would have also wanted to admit me to a clinic to flush the stuff out in the span of several hours. I think he is very sweet, as neurologists go Smiley As things went, the clinic didn't have the necessary equipment for that and when I discontinued Verap, things normalized themselves in a couple of days.  Thanks for the ideas, though Smiley
 
on May 20th, 2008, 6:30am, DennisM1045 wrote:
Lithium is scary for any Dr that isn't used to perscribing it.  We clusterheads only need half what they typical bipolar sufferer needs.  The complication for the Dr and you would be the blood work needed to check your levels.
 
Take a copy of Dr Rosen's article back with you next time.  Maybe it'll get the conversation headed in the right direction.
 
http://www.plainboard.com/ch/chtherapy.pdf
 
Good luck...
 
-Dennis-

 
I always take the articles with me, by the way. Some doctors find this offensive, but this doctor appreciates it a lot. He was still quite apprehensive about prescribing lithium. He said that it would have more severe side-effects and I would have to be very careful about it. According to him, topiramate would be a much safer and altogether a much better choice if it works.
 
I asked him about Topimax having the "dopey" effect and he said that it would usually pass within a couple of weeks of using it.  
 
on May 20th, 2008, 1:07pm, sandie99 wrote:
We in here know about the 15lpm recommendation, but unfourtunately, the Finnish guidelines do not. According to the brand new guidelines in here, oxygen is (finally!) included, but at 7-10 lpm. Sad
 
Sanna
 

 
on May 20th, 2008, 12:46pm, Linda_Howell wrote:

  I'm with Thomas, Rosa.
 
UP...that 02 to at least 15 lpm.   That could well be the reason it isn't working for you.  

 
on May 20th, 2008, 8:44am, thomas wrote:

 
You need more O2 15-25 lpm.

 
I already tried gaseous release O2 at 15 liters per minute, although I had a lesser quality mask then. It seemed to lower the pain a bit, it came back in just a couple of minutes. Now that I have the liquid oxygen, I also have a high quality oxygen mask from Headachemasters.com The valves seem to work well, no air that I exhale seems to go to the reservoir bag. I guess I need to try this stuff still a bit better, but at least the first time I tried it the stuff didn't work. It was one of those nightly attacks, which escalate quickly and it's SO annoying to get out of bed, dead tired...maybe I should have been quicker, though gocrazy
 
But yeah, the valve of the gaseous release form oxygen bottle reaches 15 liters per minute. The liquid oxygen reservoir is 14 times larger, but only has max 10 liters per minute release speed. The gas company promised to call me about this the minute they get better valves for the liquid oxygen reservoirs.
 
Other than that, there weren't really any problems with the release speed of oxygen from the gas company Smiley  
 
 
on May 20th, 2008, 11:01am, sandie99 wrote:
Rosa,
 
I'm so sorry you're hurting... hughughughughug
 
Wishing you PF time asap,
Sanna

 
 
on May 19th, 2008, 11:58pm, mezza wrote:
Hey  
 
sorry you're still suffering!  I hate that uncontrollable kind of feeling-

 
 
on May 19th, 2008, 10:47pm, barry_sword wrote:
Hi, and sorry you are getting hit.

 
Thanks. It really does mean much hug Sometimes it's difficult to stay strong when the beast comes around, over and over again...
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Re: Joys of the night
« Reply #10 on: May 20th, 2008, 4:47pm »
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You know, the binding effect that verapamil has - lithium can have a slightly opposite effect. You should at least ask to try it by itself.
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Linda_Howell
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Re: Joys of the night
« Reply #11 on: May 20th, 2008, 8:55pm »
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  Quote:
According to the brand new guidelines in here, oxygen is (finally!) included, but at 7-10 lpm.  

 
Hmmm.  O.k. Sanna and Rosa.  Are you saying that you are not able to even GET a regulator that goes to 15-to-25 lpm in Finland?   Or are you saying the the guidelines your country imposes are what you WANT to follow.?
 
If it were me.....I'd say screw the guidelines and do what I know will work to relieve me of pain.  The people making those guidelines,  I am certain don't suffer from CH.  
 
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