Hi there,
I'm cyrus, 24 years old clusterhead! I was diagnosed with cluster headache last year, before that i was having horrible headaches and i was told i have migraine!

My cluster type is episodic, last year in November, i was treated as a clusterhead and by the end of February it was all gone for good! But about 2 months ago it came back and made me miserable again! Oxygen did not help me, pain killers do not help me at all.

Yesterday i visited a new neurologist and he prescribed "Prednisolon 40 mg" and "Verpamil 120 mg" and he said its the number one medication for clusters in Europe.

I don't know if they'll help me or not, I'm just tired, hopeless and in a lot of pain. I'll appreciate if any of you could suggest something else to me, medicine or anything that can help me...

An other thing is this year my cluster is different than last year, my eyes dont hurt that much and the pain is mostly on my forehead, top of my head and Temples...
also the pain forwards to my shoulders and hands...

Any if you experienced this shift of pain?

I hope all of you will be cluster-free soon.

Love
cyrus

Hi Cyrus, Sorry you had to find us, The pain area you
describe isn't typical of CH's. Maybe take the cluster quiz,
the link is to your left on this page, and see how you go.

Hoppy.

Hi Cyrus,
First of all, every one of us is different. Every episode we experience can be totally different from the one before, and even individual attacks can be different. It changes and changes so you never know what to expect.

You say oxygen has not helped, but most people who say that are not using it the correct way for CH. Most doctors know little or nothing about this condition, and prescribe it wrongly. You must have a flow rate of at least 15 litres per minute (more is better) and a non-rebreather mask.If you get either of those wrong it won't work. But if you get it right it will change your life.

Prednisone and verapamil are preventative drugs. Verapamil takes a couple of weeks to become effective, so prednisone is used in the short term as it acts quickly, but cannot be taken for long periods. The dosage tapers off over the 2 weeks and by the time your'e finished with it the verapamil should be working. However I think you need a much bigger dose of verapamil than your'e taking. Some one who knows better than me will hopefully come along and let you know.

The best abortive med is Sumatriptan ( may be called imitrex or imigran depending on where you live). I comes in tablets, which take too long to get into your system to be of much help, Nasal spray which is a little better, and auto injections which are an absolute life saver and will abort a really bad CH in a few minutes. The trouble is  - again depending on where you live, they can be expensive and therefore difficult to get. If you can get some while you are not in cycle it helps to spread the cost and you will be prepared for next time. But bear in mind you can only use 2 per day.  I stick with the oxygen at home and save the injections for when I'm out.

I'm sorry to tell you that CH is never gone for good. Remissions of several months like yours are typical for most of us that are episodic.

Don't waste your money or risk your health taking large doses of painkilllers, because nothing - not even morphine, will work for CH. Check up on your verapamil dosage, and get the oxygen right, and a supply of injections for any attacks that sneak through, and you'll find life a lot more manageable. Also check out these boards for info about the vitamin D3 regime that many of us follow and swear by.

Read all you can on these boards, because you'll find more knowledge here than any doctor knows, and knowledge is power. We all understand what you go through, so feel free to come back and ask questions, or just to rant if you need to. We all need to do that sometimes. Let us know how you get along.
Maz.

First of all i must say that i feel really good cause i found you :) I know the signs are not typical CH but just yesterday, a neurologist confirmed that it's my new episode of CH and it's different than last year ( which i had really red painful eye and runny noes)

Thanks a million times for the info, I'll talk to my neurologist about the dosage of verpamil. I would like to know more about D3 and how to use it.
where i live, we don't have so much sunshine here, it's mostly cold dark winter...

I'm really happy that i found you...indeed priceless...

All the best

Cyrus, The Verapamil dosage your on is on the low side
when it comes to treating CH's, the dosage that works
best is 360mg-480mg daily, and some folk go as high
as 900mg daily before they get any relief. Have you had
any X.rays done just to rule out any other nasties that
could be lurking.

Hoppy.

You have come to the right place for help and info.
Our vit D3 guru is Batch. He devised the regime and is one very clever guy. If you send him a private message and tell him about yourself he will tell you all you need to know.
Maz.

Hoppy I've had cat scan and MRI and everything seems normal (as the doc said). The neurologist told me to increase the dose of verpamin weekly, now i take 1/5 120 mg of it...

I thank you for being there for me.
cheers

Maz thanks again, how can i find this guy you told me about?  I'm new here and i guess it'll take me a while before figuring out how things work around here...

Regards

Cyrus, when the doc said to increase your Verapamil
weekly, to what daily dosage is he referring too. As
to the vitamin D3 regime, you can find it under
Medications and Treatments on the main board.
123 Days PF and I Think I know Why "Batch"

Hoppy.

Hi Cyrus
Just look through the boards here till you find a post by Batch. Just click in his nameand it will take you to his profile and a link to message him.
Maz.

Dear Maz I'll find it.

Have a great day

Cheers

Hi again Hoppy.

At the end it'll be 3 times, 1 and half of verpamil 120 mg. Is it too low?

Regards

Hi Cyrus,
Forgive me, but I'm a little confused. Is that 120mg of
Verapamil daily, or 120mg taken 3/day = 360mg daily.
If the latter then that's a good starting point.

Cheers, Hoppy.

Typically 360-480mg of verapamil a day will get good results for CH prevention, however for some people they need to go to a dose of up to 1000mg a day. When the dose of verapamil is changed it takes 7-10 days for the new dose level to become effective, so don't change your dose too quickly or you'll not know what level works for you.

And always work with your doctor when changing verapamil doses, especially as it is possible (more so at high doses) for it to impact the PR interval on an ECG trace which your doctor will be able to do. If this happens, it can normally be reversed by stopping the verapamil.