Hello Kate, and welcome. It seems as if you are caught between two neuros, and in my opinion, it's a shame you ended up with the one you have. I'll try to address some of what you are asking below.
kate1968 wrote on Feb 6th, 2013 at 5:37am:Hi all
I am 44 years of age and have recently stated with severe headaches. I went to my Dr and he discussed CH - referred me to neurologist - the original neuro i saw was helpful and agreed CH, then she went on maternity leave and passed me to a new neuro.
You need that headache specialist you mentioned. When a neuro has little to no experience with CHs, and that's most of them, the treatments are more than useless, they are depressingly useless.
thing is i am struggling to get the new neuro to take me seriously, he seems to have a great downer on CH and doesnt seem to believe in them, preffering to say its migraine, has anyone else come across this?
CHs were originally thought to be a subset of migraines, but now are understood to be a primary headache. That means they are not caused by anything else but rather are their own little beastie.
i have been referred to a headache specialist and hope that this might work out better
i have been told by the new neuro to stop all pain relief medications with the exception of propranolol which he has prescribed to prevent the headaches
has anyone experience on how well this will work?
Well here we agree, mostly. The pain meds won't help a cluster. They are too slow generally, and do not address the actual attack. Propanalol is an old remedy that is not much prescribed anymore because for the most part it doesn't work. It may do wonders for migraines, I don't know, but not for clusters.
the thoughts of no meds for pain relief fills me with dread, the times i have a heachache i quite literally am incapable of all rational thought and reason.
Yup; that's how we all feel
he has asked me to keep a log of headaches but i dont really know what info to keep - has anyone any examples of a headache log please
A headache log is a good idea. It should be a simple diary of your attacks: date, time, length, measure of intensity on the KIP or pain scale, and anything you did to try and abort the hit along with how effective or ineffective it was
sorry for the long post, just desperate for some help
thanks
We know, and it's why we are here.
Here's a suggested approach to take when asking for a doctor's help:
1. Find a good headache specialist-this is imperative. In the long run, you want the specialist.
2. Start a prednisone taper (starting around 80mg/day), a bunch of us found good relief this way while waiting for a longer term preventative to kick in.
3. Start a preventative working up to a high enough dose to be effective in treating CHs, like 240mg/day verapamil increasing as directed up to 960mg/day. Other preventatives include Topamax, carbomazapine, oxycarbomazapine, and more. Pay attention to the doses-often we hear I tried that but the dose was too low to be effective.
4. Get an effective oxygen setup: a nonrebreather mask and a regulator that will go up to 25lpm along with a 3 liter bag. See optimask.
5. Get effective abortives, like imitrex injectables-pills are too slow-or Migranal nasal spray, it's an alternative to triptans. I use both.
6. Keep a log or journal of your attacks, and learn to use the KIP scale at left. This may help to identify some triggers for you. Some are fairly common to all of us, like alcohol, but even that isn't universal.
It's a long list, but it returns to you the power needed to manage the beast. Good luck and God bless. lance
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