Jump to content
ClusterBusters
HazBaz

Back again so soon....?

Recommended Posts

Last cluster was in March/April. Nice little 3 weeker. Brought under control quite fast with verapamil.

Got another one. Started about 5 days ago. Brutal. Awful awful shadows... almost feel like full blown attacks. Almost...

Odd, because i'm usually an Autumn and Spring kind of guy!

Getting me some of that sumatriptan tomorrow. Looks like a new form of injector... although could be the older style. Comes in a smaller box than the Sun Pharma epi-pen ones.

Back on the vit d. Maybe its time I started busting... 

Anyway... its 3:40am here. Not sure i'm going to get any sleep with this sheet going on. Ah well. Its the life we lead.

Ta. 'Nice' to be back again so soon.

 

Share this post


Link to post
Share on other sites

Hi Haz...clubhouse is open...we kinda wish you weren't here so soon

...didja stop the verapamil after the previous cycle ended?   what dosage? what form: IR or ER?

...It's unusual for verap to work by itself quickly (depending on yur definition of quickly) w/o a Prednisone or Medrol taper...but could be. makes me wonder if that cycle was almost over on its own and you got good timing...

...do you have a "typical" cycle length?

...I'd go for the D3...good for ya anyway...

...how about OXYGEN?...it really is the primary and most accepted initial treatment for CH....

Best

Jon

 

Share this post


Link to post
Share on other sites

 

19 hours ago, jon019 said:

Hi Haz...clubhouse is open...we kinda wish you weren't here so soon

Wow... its great in here... love the decor! shame I can't have a drink.

...didja stop the verapamil after the previous cycle ended?   what dosage? what form: IR or ER?

Yes. I tapered my dose down from 320mg IR  and 240 ER a day, to nothing over about 3 weeks and the cycle had ended. I'm trying to limit long spells on the verap. as I was on it for 6 years solid (without a need), and my ECGs were going a bit wonky. Needed to start getting off it ASAP.

...It's unusual for verap to work by itself quickly (depending on yur definition of quickly) w/o a Prednisone or Medrol taper...but could be. makes me wonder if that cycle was almost over on its own and you got good timing...

Hmmmm... it usually works pretty fast for me... within 5-7 days i'm seeing a reduction in frequency and intensity. Never had steroids or 'medrol'(?) Not even sure what that second one is... usually just been ok with verap.

...do you have a "typical" cycle length?

4-8 weeks - once the cycle is under control maybe 1-2 attacks every few days. It has been 8 a day in the past. But its hard to recall, as I've just had a 2.5 yr gap. This is my 2nd cycle this year. Just had a very stressful 4 weeks doing my masters thesis. Stress isn't usually a trigger... but i'm older and I was very stressed... I usually just try to forget the last cluster cycle for obvious reasons. I used to keep a diary. But that fell off a bit. 

...I'd go for the D3...good for ya anyway...

Been looking at the D3 regimin. Looks good, but I need to scrape together £65 to make it worthwhile... I supposed you can't put a price on health and being pain free/reduced...

...how about OXYGEN?...it really is the primary and most accepted initial treatment for CH...

Yes. I have a tank. I under use it, as its been kept downstairs in the cellar... its set up right, but i've never aborted an attack using it. Its often too late by the time I start. Its now right next to the bed, because i've had an awful few days in terms of sleep/night time attacks. So i'll give it another go. Once it works, i'll be hooked and never stop using it!

Cheers Jon.

 

 

Edited by HazBaz

Share this post


Link to post
Share on other sites

Haz….

….I prefer a "chewy" stout myself....the anticipation of such frequently got me through a cycle in anticipation...I get it....

...fascinating re verap...have never heard of a COMBO of IR/ER....myself, went over 1000 IR (ER didn't work) in high cycle....480 in low....had never considered combining the 2 forms...gonna have to think about that (already thinking your Doc has some "out of the box" that thinking I'm liking...)

….which is why D3 makes a lot of sense....65 pounds sounds high....but I've got Costco where the whole smear is pennies a day... I'd still give 'er a try...

...Medrol is methylprednisolone...supposedly a turbocharged version of prednisone....an IV and taper of same stopped a cycle the same day for me ONCE....nada the next 2 times.....I don't do it anymore...the potential side effects scare me...

...stress, for me, was a prevent...it was the "come down" afterwards that blasted me....completely strange thing about CH...we're all the same...YET, all different...…...

….Zomig nasal spray (5 mg) has been my abort of last resort...for me doesn't pack the "wham" of suma….99% effective, 18 hrs "ch free",  and NO rebounds...'bout the same price (here)...

...OXYGEN saved my sanity and perhaps my life...I'd hit that FIRST...might eliminate ALL meds.... found it especially valued at night with wakeups every hour KILLED in minutes... and able to get back to sleep immediately....

Best

Jon

Share this post


Link to post
Share on other sites

Im usually a Oct-April cycle, but last years started a bit early didn't end till almost June!  About 2 weeks ago I started with minor cluster- IBP and Pepsi knocked out and went on my way, but about a week ago the big guys hit, had just started back on regime - at 5,000 units VitD ( when the pain stops I tend to forget to take things - so its low doses and every couple days or if I get trapped around tobacco) and builiding up levels, so they hit really hard, more like 9-10's.  Nothing quite like going through a bawling 3-cycle cluster in your 10 year-olds arms.  She was left home to care for me this morning.  When it finally ended we both fell asleep.  A boiling shower and nap later and I can tolerate light  now.  My older daughter is linking my hits to low pressure storms, and tells me we are in for a long early winter and I'd better prepare myself.  

No verap for me, first time almost killed me, took  9 months for hives to finish rising to surface.  Oxygen and I did'nt do well, after 9 month to get script for it!  Most drugs and I are not compatable and end result is I steer clear of them.  Research things before taking any more and dont' trust Dr's by and far as a whole.  Can't even recall what all I've tried.  Stress was more of a prevent for me as well, relaxing - far to painful!  20 years of migraines rolled into the last 18 yrs of clusters.  My memory scared from all the "tramatic brain damage" of headaches.  Right now I'm dreading tonight - when it hits again if can stave off till then.  Couple months build up to the big ones and know when they hit ends in sight.  But starting off with em, gotta find something..

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now

×