Hey,

I don't really no where to start, so I guess the beginning would be a good place..

About 4 years ago (aged 23) I started getting really bad pain on the left hand side of my head, primarily around the eye and temple, the 'attacks' would last between 2-3 hours and would then wear off leaving me exhausted. I went to the doctor who examined me and told me I was suffering from 'acute sinusitis'. As I had no idea what was wrong with me, I went along with it.

The 'sinusitis' kept coming back, near enough every 6 months, with 'attacks' 4-6 times a day for about a month or so.
I moved to London during this summer and by the end of July, it was 'sinusitis' time again, I registered at a local surgery and went along to explain I had 'acute sinusitis'  and needed medicine, it was then that the doctor told me I had no sign of sinusitis and it was probably Cluster headaches, due to the timing of the attacks and the severity of the pain.

I was referred to a Neurologist through the NHS, was given an appointment in October, needless to say this was far too long to wait.
I ended up paying out a lot of money to go private.
This 'cluster period' started around the 20th July, it is now the 3rd November....and no end in sight....
I have tried loads of 'preventatives' that do absolutely nothing, the only abortive I have found that works 75% of the time are 'Rizatriptan Melts' but I am only supposed to use these twice a day....
I am literally at the end of line, I have no idea what is happening to me, why it is happening and when it's going to stop.

I only joined here because last night was by far my worst attack, woke up at around 1am, right eye was bright red, swollen and tears were flowing down my cheek, it felt like someone was repeated stabbing behind my eye with a red hot poker, I couldn't take any meds as I had already had 3 in a 24 hour period...
It ended at 6.30am....Never have I ever felt anything like this before, I was ready to take my life.

I honestly do not know how much longer I can live with this, when I ask the Neurologist how long this cluster will last, he says he does not know...

I haven't done a full days work since this cluster began, the bills are mounting up, and I'm starting to get really stressed, which probably isn't helping...

I don't know what to do....and help or advise would be really appreciated.

Thanks

Scott

Scott,

Sorry to hear what you are going through. It sucks.  What prevents have you tried.   It takes a while to find the right cocktail of meds to keep the beast at bay.  I take 720 mg of Verapamil daily, and it works most of the time.  In terms of an abortive, Have you tried oxygen?  A life saver for a lot of folks here.  Also, imitrex injections work for most people as an abort.  You are definitely not alone.    READ all you can here.  The information you find here will help you conquer the beast.  Best of luck.

Regards,

Malcom

Scott,

I'm a chronic and it is not the end of the world.  It just takes time to adjust and figure out what works and what doesn't.   The imitrex nasal spray never did a thing for me, but the injections stop a hit 90% of the time.   Get some samples from your neuro.  Verapamil does nothing for me until I hit the magic number of 720 mg. a day.   Keep reading.    I'm sure there is an oxygen pusher somewhere around here who will give you all the info you need.  Hang in there. 

Regards,

Malcom

Thanks for all your advise, not feeling as crappy now...

I have taken notes on everything and will be demanding that the Neuro puts me on O2 and gives me the injections, from what I have been reading both of these seem like  'first line' treatments, beats me why he hasn't put me on either beforehand, especially as I'm paying for it all privately as well....

How long do the injections take to have an effect?
I'm using Rizatriptan wafers and they can take up to 30 minutes to get the pain to stop, I also find that if I don't take them within a few minutes of getting the 'shadows' they do ditto to help.....a bit of a bugger when your being woken up at 1.30am with the beast beginning to attack...

How expensive is the O2?
I haven't done a full weeks work since being struck down in July, so money is very tight...
Are any of you from the uk? if so, is there any kind of benefit I can claim?

Your wisdom is very appreciated...

I haven't tried Lithium yet, is it a good preventative?
Can it not be dangerous though?.....

  Here is a list of meds for ch
Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or

hope the link works print it off for your dr.
Phil

Cheers Phil

They charge you to join!! WTF? There is a paypal button here to donate but that is optional. You just keep on fightin and we will help all we can.
Check out the tabs on the left and go to the meds board and gorge yourself on information. If you go back some pages you will find information on meds in your country. Its all there.
the bb

Seriously guys, thanks for your help and advice today.

I honestly had no idea how today would have ended if I hadn't found this site.

It's comforting to know that your all out there.

I would offer to buy you all a drink.....but I have already found out what happens when you mix the beast with the beer....

Does coffee actually help?

I drink 4-5 cups a day and still get violated by these attacks....

Hi Scott,
    
     Glad to see you are getting some good infor here.  I can vouch for the oxygen. I just got hooked up with O2 and much to my surprise, got immediate relief.

     I used to think caffiene was a trigger and stayed away from coffee.  After getting involved here, I drink coffee all day.  I'm not sure if it does anything but I just like coffee.

     Sounds like your doc needs to be "FIRED"

                                  Good PF Luck To Ya
                                          JPC

Looks like I better get some red bull in then....

Just one question....

I get really hot while having an attack....I mean cook from the inside out.
I'm not sure what effect coffee would have on this, as it is, I seem to have an attack at the slightest change in temperature, be it hot or cold, won't drinking a hot drink while sweating myself to death do more harm?

I've just prepared the coffee in the fridge and ice pack in the freezer, now it's just a matter of waiting.....I'm due one at around 9pm (uk time)...not long to go and I actually feel like I might be able to fight it now...