Have just been prescribed Pizotifen 1.5mg to take every night (as a preventative) and Frovatriptan to take when feel a i have a big attack coming? He didnt say if i should take it for shadows which i get either side of a cycle?
Am wary after reading about the Pizotifen!!
Still the dr will not auth 02  :'(

steph45 wrote on Dec 24^th, 2009 at 11:41am:

Have just been prescribed Pizotifen 1.5mg to take every night (as a preventative) and Frovatriptan to take when feel a i have a big attack coming? He didnt say if i should take it for shadows which i get either side of a cycle? Am wary after reading about the Pizotifen!! Still the dr will not auth 02  :'(

It's known as Sandomigran in the USA and some people report pretty good results using this drug for Migraines. Frova is the Triptan with the longest half-life, but has a poor track record here with CH sufferers.

Your Doc is taking one of many known approaches for treating Migraines. On the other hand, give them a try and see if this approach works for you. Just don't get your hopes up if you are suffering from the same form of CH's that plague most of us here.

When suffering from CH's we often have to become very proactive and work with our doctors to develop a treatment plan that is effective - as opposed to their "poking around in the dark" approach.

Best of luck and Merry Christmas!

Marc

I always prefer  "poking around in the dark" approach." OOPs wrong forums..  ;D

If he wont give you O2, find a new doctor.  O2 is effective, safe, and low cost.  If you show him the research and he isnt willing to try O2, then he shouldnt be treating CH patients.

Seriously, O2 is the BEST aborting 1st option and if he is shown that and wont try it, he isnt worth your time or $$.

Just my opinion.

Hi Steph, you really do need to be tough with these docs, go in armed with plenty of literature and a partially completed hoof, downloadable on here. If no good see another doc. It took me the best part of ten years to get 02 because i was to soft, now i have it its great and aborts most of my hits. I tried pizotifen last year but it did nothing for me, good luck and happy new year

hi Steph yes ive been on both pitzofen and frovatriptan neither worked on my chronic cluster headaches feel free to email me if you need some support i live in the uk also.Rich :)

Hi everyone - thanks for taking time to reply to my thread  ::)

I did go in to see the Professor with loads of literature/info etc but he doesn't specialise is CH even though he said he has treated 30 patients successfully over the last 10yrs (whoopi)
and that all the patients have been men and that sumatriptan tablets had been successful  in most of the patients with only one other needing a preventive medication blah blah.

I did ask him for o2 but he said he doesnt believe 02 to be successful in most CH sufferers and that most are "cured" by medications (oh yea he obviously knows f all about ch) he said it is highly dangerous to have in the home etc etc

I gave him a print off from a study recently completed by Dr. Peter Goadsby indicating that 02 is a excellent abortive treatment for ch - also told him about OUCH and this wonderful forum - he had a quick glance at it and said that you cant believe everything you read on the net.

Anyway to cut a long story short he is going to write to my gp telling him he has done all he can for me treatment wise and he his letting my gp know what he had prescribed and that if the medication he has issued doesnt help to ref me to see a neurologist ( Dr Nikos Evangelou) recommended by helen from this forum.

So for me its the a step in the right direction... i know in reality terms i am still talking at least 3/4 months (my gp is a ignorant/arrogant git) as he doesnt believe ch is such a problem, that its a painful "headache" but not has bad has migraines - says it all really   ::)

   

Sounds you landed in a pack of fools when it comes to CH.  :-/

Yes i know....i work in a medical practice myself & none of the gp's there no anything about ch (i asked for advice) they knew it was a neurological disease involving inflammation of the Trigeminal nerve - that it was like a migraine .......i  know, i know says it all really. That they leave it to the specialist to inform them of any medications the patients need has they would have no real idea what to prescribe apart from the obvious for migraines.

I work at a medical practice that has nearly 10,000 patients have we have none diagnosed with CH but a few with Trigeminal Neuralgia & Paroxysmal Hemicrania & SUNCT, not many when you think about how many patients we have.

So i guess its understandable they know little. I only know now because it affects me & my life   


Its a mad, mad world   :D

I have said before, I wouldn't wish this on my enemies....now, however I am not too sure...

I think I would wish the ignorant Dr's to suffer just one cycle of this, so they could see how it feels and at what lengths you go to just to find anything so that you can have relief.


Quote:

all the patients have been men and that sumatriptan tablets had been successful  in most of the patients with only one other needing a preventive medication blah blah. I did ask him for o2 but he said he doesnt believe 02 to be successful in most CH sufferers and that most are "cured" by medications (oh yea he obviously knows f all about ch) he said it is highly dangerous to have in the home etc etc I gave him a print off from a study recently completed by Dr. Peter Goadsby indicating that 02 is a excellent abortive treatment for ch - also told him about OUCH and this wonderful forum - he had a quick glance at it and said that you cant believe everything you read on the net.

that just almost infuriates me  >:(

Steph,

some more reading for your doc (PDFs):

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

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE
(see page 19 for CH treatment recommendations)

Why didn't the doc give you verapamil and/or corticosteroid as a preventive medication?

Frovatriptan 3 x 2,5mg/day works very good for me as a preventive medication in addition to the verapamil.

Hi, thanks for the above information  :) I have saved & printed off the info to give to my GP.

As you know its a long process to get the correct & right treatment. It is such a relief to know what it is but i was naive to think that it would mean i get the correct help straight away.

Bit i havent got this far to give up at the final hurdle!!!

If any Dr refuses a script for 02 for treatment of CH they should be disqualified, disbarred or whatever they call it in the UK (I'm assumming that is where yr from). I would file a complaint with whatever governing agency that is appropriate.

Hello Steph, sorry to hear you are having problems getting O2 prescribed! Are you seeing a Neurologist at your local hospital?

I was on Pizotifen before being diagnosed with CH and to be honest it didn't make a difference and made me put on weight! I also suffer with migraines too and they also did not really improve.

I hope you have some PFDAN soon x