First post looking for advice

[Steveo]

Apologies if this makes no sense as it's 7am Sunday and been awake since 5am Friday so I'm running on empty just like my o2 which ran out 5 min ago
I'm 6 weeks in to this cycle now and not had one day pain free, I've lost 10kg in weight as not eating properly and tried every over counter pain relief including oral morphine and tramadol. 
The zomig nasal spray and o2 help but not every time doctor won't give me more spray for 2 weeks only got 3 day supply left. 
I've got 2 holidays planned in may Vegas and Greece Im considering canceling both but will loose and £ks if do 
About to order some cbd oil (got to do research on what kind)
I've ordered everything for d3 regime as well as some melatonin.
Also got a friend looking in to getting me some prednisone so I can do some sort of taper myself as can't get appointment at docs before I go
Anyone got any other idea on how to tame this even if just for a few weeks so can enjoy my holidays 

[CHfather]

Sorry you're in such a bad way and a tough spot, Steveo.  From what you've written, I'm assuming you have no access to a doctor. 

I'm kind of gathering that you're in the UK (although the times in your message aren't consistent with that).   If that's where you are, what about getting truffles from the Netherlands?  I think they'll fill a mail order, or maybe you would have some way of getting them directly??  (Assuming that you don't have any resources among your acquaintances for busting substances.)  If you're not familiar with busting, it's using psychedelic substances, potentially at subpsychedelic levels, to treat CH.  You can read about it in the numbered files in the ClusterBuster Files section.  You would have to be off the Zomig, but it sounds like that might be going to happen anyway.

In the short run, when it sounds like you have practically nothing, you could try drinking an energy shot, such as 5-Hour Energy, at the first sign of an attack.  That can reduce the severity of an attack, or sometimes even abort them.  In the future, you might consider asking for injectable sumatriptan instead of the spray.  With most injectors, you can split the doses and make the stuff last longer.  (If you've been using the Zomig with most attacks, it is probably making your situation worse, with rebounds, etc.  Ultimately, of course, you want to be as pharma-free as possible.)

[Pebblesthecorgi]

Immediate suppression for high priority events is problematic because most require a bit of conventional medication and all the yucky side effects.  Prednisone oral with taper is at the top of my list 60-100 mg a day for 10-14 days then taper down by 10mg every 3 days til done.  Mix in some Verapamil up to 1200 mg a day until 10-14 day pain free and pray (and I mean Pray) for you bowels to move.  Energy drinks (caffeine) may help.  Antihistamines Benadryl 50-125 mg at night and Claritin 20-40 mg during the day.  Amerge (nartriptan) is a long acting version of imitrex but need an Rx but you can use daily for the duration of your trip.  May get rebounds after.  This situation sucks and I have been there.  The advice presupposes no medical problems and access to medical care.  Best to you

[jon019]

Hi Steveo sorry for your probs.  Advice above good.....Jus b careful u don't throw so much diff stuff all at once you'll never b sure what worked!!    Best  Jon

 

 

 

 

 

[Steveo]

Thanks for the replies. I am in uk I had originally wrote the post on a Facebook forum this morning and didn't have energy to write it again hence why times are out of sync

prednisone taper does sound the best option I just need to try and get in my gp which is a task as next appointment is after I go away. Or ask a 'friend' to see if he can get some 

[CHfather]

Well, for most people pred taper only works while on the taper, and sometimes/often only at the higher doses (not while actually tapering down).  Its principal purpose, as Pebbles suggests, is to tide you over until verapamil can kick in.  If you can't get to a doctor, hence can't get verap, the effects of the pred might wear off before or during your travels.  Sometimes the pred will kick the cycle, or the cycle will be ending anyway, but we have story after story here of only temporary effects from tapers.  The best option is to get to your doctor and get proper prescriptions for everything . . . but that sounds like it might not happen, and even then, it's possible that a sensible doctor won't prescribe verap if you're going to be traveling for a while, since verap needs to be monitored in early stages.  I would still seriously consider busting if I were you.

Not to add to the bleakness, but I suppose you might know that air travel triggers attacks for many people.  At least, be sure you have energy shots/drinks with you on the plane; even better, small amounts of some busting substances placed under the tongue will help abort attacks (though of course having them at the airport is a bit risky).  Too damn bad that the UK banned rivea corymbosa seeds -- but you could probably also get those from the Netherlands, too.

Try to make arrangements for O2 in Las Vegas (and Greece, if possible).  Check with your O2 supplier there, because they might be able to make arrangements for you.  At the least, bring your prescription with you and maybe you can get it filled by a supplier in LV.

[urs Brasil]

...All the best Stevo and later or so put an eye on Bob's "Hyperventilating O2", very nice if O2 supplies come to an unexpected end.

 enjoy your trip, thumbs up for sure