Hi back Lolly
Welcome and being british is ok too.
the bb

You have a most useful group which you should join:  Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or

Explore one of these books. I'd suggest the first one if the cost is tolerable. Your Neuro would appeciate it since it's written by one of the better headache docs in the U.S.

MANAGEMENT OF HEADACHE AND HEADACHE MEDICATIONS, 2nd ed. Lawrence D. Robbins, M.D.; pub. by Springer. $50 at Amazon.Com.  It covers all types of headache and is primarily focused on medications. While the two chapters on CH total 42-pages, the actual relevant material is longer because of multiple references to material in chapters on migraine, reflecting the overlap in drugs used to treat. I'd suggest reading the chapters on migraine for three reasons: he makes references to CH & medications which are not in the index; there are "clinical pearls" about how to approach the treatment of headache; and, you gain better perspective on the nature of headache, in general, and the complexities of treatment (which need to be considered when we create expectations about what is possible). Finally, women will appreciate & benefit from his running information on hormones/menstrual cycles as they affect headache. Chapter on headache following head trauma, also. Obviously, I'm impressed with Robbins' work (even if the book needs the touch of a good editor!) (Somewhat longer review/content statement at 3/22/00, "Good book....")

HEADACHE HELP, Revised edition, 2000; Lawrence Robbins, M.D., Houghton Mifflin, $15. Written for a nonprofessional audience, it contains almost all the material in the preceding volume but it's much easier reading. Highly recommended.
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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)
 
Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or
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Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or
ALL NEW!! HEADACHE 2008-2009
The new 72 page Headache 2008-2009 is hot off the press! Click here to download the PDF instantly! (free)

If you would like a bound copy, send $12 (includes shipping) to
Robbins Headache Clinic
1535 Lake Cook Rd.
Suite 506
Northbrook, Ill.60062

OR call 847-480-9399 to use Visa or Mastercard.

The Robbins site is extensive and is worth exploring as you have time.

hi

thanks very much for the info, I've had a look at OUCH before coming on here and found both sites very useful


thanks

hi again, I've not been on the net a whole lot the past few months as my neurological disorder landed me in hospital a fair bit.

The last couple of weeks my headaches have been horrendous again and they are a bit different, they dont respond to the treatment I had for my neuro problem and they seem to come on exactly between 7:30 and 8pm every night without fail and last approx 2 hours and now my nose runs with them too and all I want to do is bang my forehead with my fingers/hands, although pressing on my head hurts. I never had my nose run before, I wondered if it meant I had a sinus headache. Ive just restarted verapamil again today so fingers crossed that will help as it did before. Seeing my neuro in a few weeks so will be able to tell by then if its working.



Lolly.

The runny nose, on the same side as the attack, is very common, as is a droopy eye on that side. Do talk to your doc about oxygen as an abortive therapy. Read the link on the left, "oxygen info" complete with pictures to show you how to use it. Been a miracle abortive for many of us.

Welcome on board, hope we can help you.

Joe

Hi! I see you're online - please hang about if you can - about to type a longer post!

Helen

hi Helen

thanks for your post, although Im in the midlands, my neuro is in London as he is an expert in Behcets which is the other condition I have. I have the neuro-behcets variety.

The attacks Im getting at the moment last approx 2 hours, they are not the same as the 'lots of short ones all together' that I was having before, although I am getting those too at other times of the day.

I have had sumitriptan and rizatriptan in the past which did nothing, but they were tablets so Im guessing they just took too long to work. I've been given the rizatriptan wafers this time, I know I've had them before as I recognised the packet when I got them, so I must have tried them at some point in the past, so hopefully this time they will help.

I'm seeing my neuro in 4 weeks I think so will ask him about other therapies. Since being back on the verapamil a few days it does seem to be helping, Im still getting the attacks every evening, but they are much less severe and never reach the peak they used to. I'd been describing it to my husband like being stabbed in the forehead with screwdrivers but I havent had one that bad for 2 days so I hope it stays that way.

I asked him about my eye during the attacks and he said it looks a bit sleepy and I remembered the skin feels tight under it sometimes it gets a bit leaky like my nose.

I've not heard of indomethacin, but will look it up and ask my doc. I am on a whole load of other meds, some mix ok, but will have to see what they say

thanks again,



Lolly

Ask your GP about O2 anyway- what do you have to loose?
If he says no call your neuro.

I have Rizatriptain melt- great for migraine but I would far rather have imigran nasal spray or an imigran auto-injector to hand for CH.
The speed of pain relief and the time it lasts was great.

The tightness of chest from triptains is worth chatting to your docs about. Like all drugs some suit some folk and not others and it can take a little bit of tweaking.
I am in the Midlands too but down a bit  but opted to be under BCH.
I am sure Helen can share more info on getting the best from the staff  at QMC.

Hope the Gp can help, let us know how you get on.

* I should have put my hot tea down before reading your post* 

In the UK the average GP will only ever see at most 1 person with CH in their entire working lives so it is not too surprising they are frankly ignorant of what it is and how it should be treated.

[There are some who are scarily pig ignorant on how to treat migraine!]

Glad you had enough fight to call your neuro ; good for you!
I had a few problems with my GP till they saw me having a cluster on Monday first time they had ever seen someone with one- now I get enough sumatriptain for the entire week and some spare in both nasal spray and autoinjectors.

Do what you need to to get through the weekend till you can call the neuro back and ask when he might be able to fit you in and post here if you need to yell cry or mutter over the price of red bull at tescos.

Now if I can think of a place where theres a starbucks open at midnight right next to a japanese oxygen bar then maybe OUCH UK could have a midlands meet up

hi lolly, sorry you seem to be struggling just now

can i make a suggestion, i think you may find it useful to give the OUCH (UK) helpline a call, you don't  have to be a member.

All you need to do is phone 01646 651 979, leave a short message and number we can call you back on (pref landline) and someone will call you back and talk through what's been happening, med advice and advice on what to do when you have "difficult" gp's

sandra xxx

Glad you have joined OUCH UK, Val and Mike have been really helpful to me on the helpline as I have battled with the fun and games over using sumatriptain injectors that backfired and sorting out home oxygen. They are good people.

Even more glad your GP has handed over the sumatriptain spray - I really hope it helps you and I hope he can sort out an urgent appointment with the neuro for you. Hang in there.
If the pain makes you cry at the GPs try not to feel bad about it because there are times that pain makes us just plain run out of resources and need a bit of a hand to keep going




[Cheat- get the local pharmacy trained so they always have a stock in or hunt down a 24 hour pharmacy as they often keep it stock as an emergency medication. ]