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        New Message Board Archives >> 2006-2007 Getting to Know Ya Posts >> How much I rely on this site 
        
(Message started by: Icey on Apr 9^th, 2006, 9:06am)

Title: How much I rely on this site
Post by Icey on Apr 9^th, 2006, 9:06am

I Haven't been here for a while , due to personal family reasons . After my doctor starting me on verapamil this week the first place I wanted to come was here It's part of my life ! .. Thank you so much for still being here ,it's kept me sane

Debbie

Title: Re: How much I rely on this site
Post by chewy on Apr 9^th, 2006, 12:24pm

Welcome back.

What dosage are you taking? First try at the verap.?

Title: Re: How much I rely on this site
Post by Icey on Apr 9^th, 2006, 12:48pm

Hi Chewy ... Just a low dose it seems ,compared to what i've been reading some ppl are on , just 40 mg 3 times a day . Maybe they start you on a low dose on purpose ? Ive done the beta blockers thing before tho propranalol ,so I'm hoping to get some relief from the verapamil

Debbie

Title: Re: How much I rely on this site
Post by Richr8 on Apr 9^th, 2006, 6:41pm

Best of luck. The Verapamil seems to work for me after a pred taper knocks the beast on his butt. I'll be looking for an alternative to the Pred next season. I'm not going back. It's too hard to crawl back.

Title: Re: How much I rely on this site
Post by RichardN on Apr 9^th, 2006, 10:09pm

Hi Icey

When I came here (2/02), having 6-8 attacks per day, Verapamil and 02 were the first things I tried (thanks to copied info from this board). I too was started on a low dose . . . . don't exactly recall . . . and after tapering up to 240mg I had my first PF day in a VERY long time (had three that night, but it was a great day) . . . .got up to 360 mg and then reduced to 240 maintenance dose.

Many here take MUCH more and in combinations with other meds such as lithium.

I stopped the Verapamil about a year and a half ago due to decreasing blood pressure and other medical problems . . . . BUT, for whatever reason (Wish I knew but I really don't care), I have been mostly PF for many months now . . . . the few (compared to the past) I have I'm able to abort with the 02.

Do you have oxygen?

Oh . . . . if you haven't already been warned, many have some trouble with constipation (I did), especially as you taper up . . . . but it's not a problem to control with diet/softeners.

Hope it works for you soon

Be Safe, PFDANs

Richard

Title: Re: How much I rely on this site
Post by Icey on Apr 10^th, 2006, 8:46am

Richard .. yeah I have oxygen , never really helped me tho .Just hopin the ol verampamil will kick in ,I'm not a new sufferer so ive been there done it with diff meds .Just so glad I can look here and go to my doc and ask for what you guys take , my docs not clued up on CH . Must admit I suffered all those years thinkin I was the only one too , till I found you :) ( what a god send)

Title: Re: How much I rely on this site
Post by LeLimey on Apr 10^th, 2006, 11:15am

Hi Debbie!
Its Helen, how are you doing? I've been wondering how you were getting on and its really a joy to see you posting again.
What have your doctors said about upping your dose of verap? Have they done an ECG yet? You should have one on commencing verap, one after ten days and one after every increase in dosage.
I can send you the Queens Square verap increase recommendations for your doctor if you like? Most people don't seem to see any benefit from verap until they get to a dose of around 480mg or higher. Please note I didn't say everyone! That seems to be about the mean though although some are on as high as 960mg a day, it's a case of go until you get to where you need to be.
Have your doctors said anything about a prednisolone taper while the verap is kicking in?
keep checking in, I've missed you!
love
Helen

Title: Re: How much I rely on this site
Post by Richr8 on Apr 10^th, 2006, 12:25pm

on 04/10/06 at 08:46:51, Icey wrote:

.. yeah I have oxygen , never really helped me tho .

I don't want to be a pest, but have you tried the O2 as prescribed here at greater than 15lpm wih a non rebreather mask (clustermask)?

Many have reported success after increasing flow rates and switching masks. I swear by the stuff although I had mixed results with the 7-10 lpm and rebreather mask prescribed by my neuro.

Title: Re: How much I rely on this site
Post by Icey on Apr 11^th, 2006, 2:45pm

Helen :) There ya go again ,always helping ppl ,you really are a diamond . Just to answer a few questions he didnt do an ECG , I just asked for them and luckily he just gave me them . I took one before bed , but missed the morning one just to see if I could . This is the strangest bout i've had looking back , started septemeber :-/ I was always episodic . I'm copeing at the minute . A few times i've had the phone number of ouch in my hand ,times it's too much ya know what I mean . I want to take the dose of verapamil at the weekend to see if I suffer side affects as I'm still working . Oh god , I don't know what i'm doing half the time . Helen .. I really do appreciate your help , really do . I felt a bit pissed off being adviced not to try the shrooms :( But life ay .. Anyway I hope you're well ? xx

Richard ... Thanks for your reply . Yeah Ive heard about those masks , maybe I should try them .. cause honestly I breath that oxygen and it seems to make it worse :-/ Well not worse I guess but I can't sit still , I have to throw the mask off n get up and move about I can't relax to it .. do you understand me ? .. I've been guzzling the ol red bull today . I'm happy I'm still only getting hit in the day ,one good thing ...... Thank you !

Title: Re: How much I rely on this site
Post by LeLimey on Apr 11^th, 2006, 3:41pm

Hi again Debbie,
one of the best things about a clustermasx is it comes with a very long "hose" so you can walk about (just don't do as I did and stand on it because - trust me - LACK of oxygen does NOT help! ;) )
I'd definitely give it the highest recommendation I could, especially given that you like to pace, it means you CAN be mobile and on O2 so you'll have the best of both worlds.
I know you were advised not to try the alternatives and that's okay, you do have other options. Verapamil is a med that alot of people have had a lot of success with so don't discount it okay? It will do you good but you do need to take it regularly so give it a chance.
Please go back and get the ECG, the nurse will do it, it'll take five minutes and honestly, the longest bit is having all the pads attached! (think baby monitoring when you were pregnant.. its almost identical!) It's nothing to worry about but especially given your other probs I'd really be happier if you got it done.
Don't forget that OUCH helpline number and don't forget I'm only an hour up the road from you.. if you need me I'll be there okay? (You've been warned! LOL)
Keep buggering on, we'll get there one day [smiley=hug.gif]
love
Helen

Title: Re: How much I rely on this site
Post by Icey on Apr 13^th, 2006, 3:48pm

Helen ... That mail nearly made me cry :-[

I hate being a pain in the arse to anybody . I had a shitty night last night so yeah I will try the verap . I wen't thru the old .. "Oh no not again" , as i'm propping up on that many pillows . I'll fight it Helen . It's much easier when you know you're not fighting alone anymore ... Thank you :)

Title: Re: How much I rely on this site
Post by LeLimey on Apr 13^th, 2006, 4:12pm

Debbie I usually find it easier to prop myself up on the sofa rather than in bed, once I fall asleep you can guarantee I'll wriggle until I'm not propped up anymore ::)
Knowing we aren't aone in this is, in my opinion, the best weapon we have. Knowing there are other's who will help us through thick and thin gives me at least the strength to keep going.
You'll get there lovey.. we won't let you do otherwise!
Remember too that I don't make offers I'm not prepared to keep - if I can do something I will!
Oh and just in case I miss saying it again... HAPPY EASTER!
love
Helen

Title: Re: How much I rely on this site
Post by Icey on Apr 13^th, 2006, 5:00pm

Happy easter Helen :) .. In fact happy easter to everybody ! I just had this good feeling ,I thought to myself yeah I'm not alone anymore .. it's ppl like you that make it so much easier . You was the first person I mailed and you've helped me ever since . You're there for everybody I've see it over and over . You're an angel Helen . I don't have suicidal thoughts anymore , I don't get so depressed , and that reason is ppl like YOU !

Title: Re: How much I rely on this site
Post by Richr8 on Apr 14^th, 2006, 3:08pm

on 04/13/06 at 15:48:38, Icey wrote:

I hate being a pain in the arse to anybody

Here? That's absurd! That's why we are here. Sorry you had a bad night. The recliner is my main battle chair after the pacing. Hang in there. Things will get better.

Title: Re: How much I rely on this site
Post by Icey on Apr 14^th, 2006, 3:49pm

Thanks Rich . Guys like you ,Helen and everybody else who's suffered that makes it that much easier to cope with .... from the bottom of my heart THANK YOU !