Started with CH's over 10 years ago and suffered terribly until I started on Prednisone and Verapamil. I still got headaches but not as bad or frequent. My cycles usually lasted 6 weeks but this cycle began in February and is still active.  I have been taking 20 to 30 mgs of Prednisone and 320 mgs of Verapamil and decided I needed to start weaning off the Prednisone and of course the headaches became more frequent. My doctor convinced me to start oxygen which I did 2 months ago. It is helping but I am now getting anywhere from 3 to 4 headaches every night. Naturally with this constant interruption of sleep I'm like a zombie most days.  I guess my main question here is since I am using the oxygen and aborting the headaches before they become full blown is that what's causing the multiple attacks every night?  I weaned down to 5 mgs of Prednisone and 160 mgs of Verapamil.  What do I do now?  Increase the pills or what?  I am at a loss and honestly thought the oxygen would solve my problem but instead it has made it worse.  Any help appreciated.

Hello Lucy,

The verapamil at 160 is too low to have much beneficial effect...at least as reported here over the years. The sweet spot seems to be 480 mg/dy in divided doses...immediate release type vs extended release. Some...like myself, went WAY higher...to over 1000 mg/dy. Also had some success timing doses to expected hit times. When stepping up the dosage  it should be in stages and an initial ECG taken then compared to later ECG's at higher doses (verapamil can effect heart rate....which is reversible upon discontinuation.) If you do increase dosage...be sure to eat lots of fiber and mucho water (which is a good idea anyway) as it can be constipating ....

Good on reducing the pred...you really should eliminate entirely...the long term effects are nasty squared. It is intended....in typical protocol...to break a cycle with a 2 week taper...while the verapamil takes effect....

A Doctor that would insist on O2 seems to have it together...many of us had to FIGHT with ours to get an O2 script....lots of wailing and gnashing of teeth...and firing of incompetents. Which causes me puzzlement re the continued pred AND the LOW verapamil....that's not standard. Perhaps your overall health or blood pressure preclude?

Have you read the Oxygen thread on the left of the screen (yellow highlight) START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

I used to get hit 8 times per night (once per hr). Had best results by setting up O2 rig right next to bed....one turn of the regulator and slap on(what I hope you have) the clustermask available here (a Godsend). Lights OFF, eyes CLOSED, no thoughts other than BREATH...slow and deeply and rhythmically...no anger or thrashing or swearing...remained as close to still asleep as possible. When the hit was over (usually only 5-10 min to abort) I could be back to sleep in seconds. On the way to work instead of anger at lost sleep would rejoice in the 4-6 hrs I got (previously much less than that).
This is one of the crueler aspects of CH....sorry you have to go through it.............


and you should consider the vitamin D3 regimen. (I will try to attach link later)

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE  

it's a bit intimidating...start at the end and work your way back...hoping batch or someone will direct you to a more user friendly thread....


Best

Jon

Thanks, Jon for the info. I will indeed wean off the Prednisone completely and increase the Verapamil.
I will make it a point to read the link and oxygen info.
Thanks again for your input ...

LucyBee210 wrote on Nov 18^th, 2017 at 3:25pm:

Thanks, Jon for the info. I will indeed wean off the Prednisone completely and increase the Verapamil...

Certainly it's good info, LucyBee, but as Jon says it really should be done in consultation with your doctor - especially where the ECGs are concerned,

Bestest always,

Brian down under.

Long term use of Prednisione can have significant side effects, including damage to joints. This is why for CH it is used for only about 7-10 days to act as a good preventive whilst a better, long term preventive is given time to build up to an effective dose.

last cycle I had lasted 9 months. I often felt the 02 kept them handing on. I wanted to try to just take the hit all the way through just to see if it would play them out for the nite, but I couldn't last more than 30 seconds.

Be Well
Coach Bill