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        Cluster Headache Help and Support >> Cluster Headache Specific >> Result of visit to Doctors
        
(Message started by: ferrie on Nov 10^th, 2006, 5:46pm)

Title: Result of visit to Doctors
Post by ferrie on Nov 10^th, 2006, 5:46pm

I went to the Doctors today to tell her I was heading into week 8 of my CH and was desperate for help. I told about all the things I had read here and at OUCH. She took out a few medical books and read them while I sat there. I asked about the Imigran injections, she said no to them (she said they were too painful.....please!!!! I have a headache that is beyond painful!!!) She didn't even flinch when I mentioned Oxygen. She said CH were notoriously difficult to treat but the Imigran inhaler might help. Then she said I couldnt have it as my blood pressure was too high, then she said it might be OK if she monitored my use of it.....she gave me a prescription for 6 of them, my question now is, Any tips on using it, dos or donts. I appreciate your time and replies. She also told me NOT to have Caffeine????

Julie

Title: Re: Result of visit to Doctors
Post by Giovanni on Nov 10^th, 2006, 5:52pm

If possible, get a new doctor. :o This one doesn't know squat about CH. The imitrex inhaler didn't work for me, but the injections did.

Good Luck,

John

Title: Re: Result of visit to Doctors
Post by davyp on Nov 10^th, 2006, 7:08pm

Hi Julie,

Your GP needs to look in her BNF (the GP`s prescribing bible) under Cluster headaches and she will see that the only licensed treatment for CH is imigran injections with a mention for high flow rate O2.

Your GP obviously looked up the cost of the injections and nearly had a fit when she saw how much they cost, but on the other hand you may find that the nasal inhaler works for you but i swear by the injections and i have a major phobia of needles and i am using them on a daily basis and if i can do it a untrained monkey could do it (shut it Helen ;;D ).

Dape :)

Title: Re: Result of visit to Doctors
Post by LeLimey on Nov 11^th, 2006, 10:33am

Dape I'm hurt, as if I'd insult untrained monkey's like that ::)

Julie, your doctor is getting a little mixed up on the caffeine question. For the majority of people with headaches it will make things worse as its constricting their blood vessels but for us, thats exactly why we want it and exactly why it works!
Caffeine is a vaso constrictor in the same way Imigran is and also Oxygen, its your friend NOT your enemy I promise!

Your doctor is blowing smoke about imigran nasal too. Its not the recommended drug for CH so she cannot deny you what the BNF states is the only licensed treatment in the UK. If she baulks tell her you'll appeal to the local PCT. They have no choice but to uphold your claim as it is in black and white in the BNF!!

Your doctor will be quibbling because of cost but, and I could be wrong, I've recently been told surgeries with high cost patients can apply for larger budgets because of them I don't know how and I know it will mean umpty ump bazillion forms for your doc but that's HER headache not yours - and it might give her a bit more sympathy for yours at that! ;)

We'll help you through this don't worry.
Helen

Title: Re: Result of visit to Doctors
Post by LeLimey on Nov 11^th, 2006, 10:35am

on 11/10/06 at 17:46:27, ferrie wrote:

She said CH were notoriously difficult to treat ...

All the more reason for her to prescribe the only licensed treatment wouldn't you think?! ::)

Title: Re: Result of visit to Doctors
Post by kcopelin on Nov 11^th, 2006, 11:12am

What Helen said ;;D Even the part I didn't understand.
Y'all have a serious system over there! :o Constrict those blood vessels! Have you tried Red Bull or other energy drinks-they help some folks.
Wishing you better medical care and PFDAN!
kathy

Title: Re: Result of visit to Doctors
Post by Richr8 on Nov 11^th, 2006, 11:17am

on 11/10/06 at 17:46:27, ferrie wrote:

gave me a prescription for 6 of them, my question now is, Any tips on using it, dos or donts.

Here you go:

http://www.clusterheadaches.com/imitrex.html

Title: Re: Result of visit to Doctors
Post by Melvyn on Nov 13^th, 2006, 7:14am

Hi Ferrie,

I had same problems with GP. Gave me minimal amounts of imigran and eventually tlold me I couldn't have oxygen or verapamil.

Tok LeLimey's advice and asked to see a neuro specialist. Just back from the hospital today. The neuro is writing to my GP to instruct him to prescribe verapamil and oxygen as well as imigran.

It took almost 6 months to see the neuro and I came out of cycle last week but I feel happier about my next cycle.

I did use Melatonin - 9 mgs per day and found it great for stopping CH. Although if you want it you'll have to order it from stateside as not available in EU.

Best of luck and thanks for your advice LeLimey

Title: Re: Result of visit to Doctors
Post by Bob_Johnson on Nov 13^th, 2006, 8:22am

Yet another example of why this article is so helpful. Written by one of the leading headache doc in the U.S., it gives some authority to our requests for specific meds.
============
Here is a link to read and print and take to your doctor. It describes preventive, transitional, abortive and surgical treatments for CH. Written by one of the better headache docs in the U.S. (2002)

http://www.brightok.net/~mnjday/chtherapy.pdf

Title: Re: Result of visit to Doctors
Post by LeLimey on Nov 13^th, 2006, 8:29am

Melvyn what a lovely post all round, out of cycle AND armed for the next one, thank you so much for coming back to tell us :)
You're always welcome for help or advice or just to stick around and reassure others that there is light at the end of the tunnel as you just proved!
Here's hopin gyour cycle never returns
Helen

Title: Re: Result of visit to Doctors
Post by Melvyn on Nov 13^th, 2006, 12:26pm

Bob,

the neuro said he was up to date with everything on OUCH UK - I took along a copy of the Rosen article and gave it to him - he hadn't seen it. He asked if I thought it was wise buying and taking Melatonin - I told him that when the beast strikes you would eat your own grannie if you thought it would kill the pain.

Helen,

thanks for your kind comments - I will stick around - learn and help to underscore the help and support available here

Title: Re: Result of visit to Doctors
Post by jon019 on Nov 13^th, 2006, 1:48pm

on 11/13/06 at 12:26:25, Melvyn wrote:

. He asked if I thought it was wise buying and taking Melatonin - I told him that when the beast strikes you would eat your own grannie if you thought it would kill the pain.

You go Melvyn.

Maybe I'm sick or maybe just a clusterhead, but I found that comment hilarious. That just about sums it up!!!
I would love to have seen the Docs face.

Jon

Title: Re: Result of visit to Doctors
Post by LeLimey on Nov 13^th, 2006, 1:52pm

on 11/13/06 at 13:48:58, jon019 wrote:

Maybe I'm sick

Jon

:-X

Its sort of silly but Melatonin isn't available at all here, on prescription or off it.
HOWEVER.. it is something PG has an interest in at the moment, he is recommending a lot of ch'ers buy it online and try it. I think based on their results (his own patients) he may be able to get a trial off the ground at some point which would mean we could finally get it here. Keep going Melvyn, you're a pioneer for us Brits!

Title: Re: Result of visit to Doctors
Post by roy21302 on Nov 13^th, 2006, 2:05pm

If you want to buy Melatonin, go to--- agestop.co.uk you can order it on this site and it will be delivered withiin a few days. Just for info
cheers Roy :)

Title: Re: Result of visit to Doctors
Post by jon019 on Nov 13^th, 2006, 9:56pm

on 11/13/06 at 13:52:32, LeLimey wrote:

I was aware melatonin not approved in GB. Have never heard why. Any insight?

Yeah, I'm sick but I still think telling a white coat you would munch on grannie to stop this pain is funny and a damn good expressive way to get the point across.

Jon

Title: Re: Result of visit to Doctors
Post by Melvyn on Nov 14^th, 2006, 6:33am

Jon,

Melatonin is classed as a health supplement in the UK.

The bright sparks at the European Union got together a couple of years ago and looked at a whole range of health supplements and decided that people in Europe should not be allowed to buy them. So they were withdrawn, I think it was about a year or 18 months ago. prior to that you could buy Mel over the counter here.

Main reason given is that there is no data on long term use.

Title: Re: Result of visit to Doctors
Post by Beastfodder on Nov 14^th, 2006, 8:13am

Once you've got your GP up to speed and they can fill out the home oxygen order form (HOOF) it's door to door delivery.

Hi-flow @15 litres per minute is what's needed, ideally with a clustermasx.

Getting the right diagnosis is the best possible start - my GP referrred me for Sinus surgery a few years back!

Good luck

Title: Re: Result of visit to Doctors
Post by Gator on Nov 14^th, 2006, 9:58pm

While you are taking articles by Dr. Rozen to the doc, you may as well take this one, too. Justifies high flow oxygen use at up to 15lpm.

http://www.chhelp.org/mhni.html

Good luck!!!