So I finally saw the Neurologist for my outpatient appointment this week. I took my mum along with me because my brain only seems to like to absorb half the information at the moment and it’s great to have the support. My dad also attends the same clinic because unfortunately he has recently been diagnosed with MS (we’re not related by blood) so it is hard for my mum to see her husband suffer with his functioning and me with the headaches (I always regret she ever saw me with the worst Cluster pain I have been in, hitting my head, screaming etc – I feel terribly guilty for making her feel helpless)

I saw a junior Neuro who was very well informed about Cluster Headache. He checked over my diary (6 weeks worth) and confirmed that based on my symptoms and other tests in the past that it is definitely Clusters. There are other symptoms such as extreme pressure, problems with constant throbbing headaches (assumed to be shadows), pain now on both sides of head and tinnitus which made me wonder if it was something else which can be sorted with medication (wishful thinking on my part I guess ::)).

As I am about 12 weeks in I was told that unfortunately it is a bit too late to knock me out of this cycle with prednisone steroids. But I have been given a high dose for 7 days to try and give me some relief.

I am also on Verapamil 40mg 3 times a day, if I am okay on them (with ECG check) they will start increasing the dose in the next couple of weeks. And I will be having the O2 as of next week hopefully too, one at work and one for home. The Neuro said that an older gentleman came into hospital last week with his Clusters and once he tried the Oxygen it aborted an attack which he has not experienced ever which was very encouraging.

Cannot wait to try out the Oxygen for those bad hits at night and in the mornings, it is getting very important now as the attacks are determining if I go to work or not.

Silly question I guess – but when an attack has been aborted with O2 do all the other symptoms stop right away too? (Watering of the eyes etc)

I can’t wait to feel like a human being when this all stops or even if I just get some relief. I also write a fantasy series with my partner and since all this started I haven’t touched it due to my lack of concentration and sore eyes and the sooner I get back to editing, the better (we were just going to agents with our first book too!)

Thank you for reading and understanding. This board is amazing. 

PFDAN everyone  :)

Yes...all the other stuff will stop too. O2 will set you free. :)
   When you get the first little sign of an attack,,,hit the O2 as fast as you can.
I am also on Verapamil, and it takes a little while to work, but once it does it is great.

Welcome :)           lorac

lorac wrote on Oct 1^st, 2009 at 8:22am:

Yes...all the other stuff will stop too. O2 will set you free. :)    When you get the first little sign of an attack,,,hit the O2 as fast as you can. I am also on Verapamil, and it takes a little while to work, but once it does it is great. Welcome :)           lorac

I like the sound of 'O2 will set you free' bit :)

Thank you!

Congratulations on what sounds like a good treatment plan from a Neuro that knows what he's doing.  Hopefully this will become the norm for all of us.

What flow rate were you perscribed?  Make sure they get you a high flow regulator that goes at least to 15lpm and a non-rebreather mask.  I'm not saying you'll need 15lpm to abort but you want the "head room" if you need it.

I have had a lot of luck with Verapamil too.

Now kick that beast out of your life  8-)

-Dennis-

DennisM1045 wrote on Oct 1^st, 2009 at 12:58pm:

Congratulations on what sounds like a good treatment plan from a Neuro that knows what he's doing.  Hopefully this will become the norm for all of us. What flow rate were you perscribed?  Make sure they get you a high flow regulator that goes at least to 15lpm and a non-rebreather mask.  I'm not saying you'll need 15lpm to abort but you want the "head room" if you need it. I have had a lot of luck with Verapamil too. Now kick that beast out of your life  8-) -Dennis-

Thank you Dennis - I hope that this becomes the norm everywhere too because from what I now know, I am very lucky to bump into a Neurologist right away who knew what he was talking about. He told me to educate myself as much as possible and go onto OuchUK which is how I found this website a little while ago.

I haven't been 'prescribed' officially yet. I have to wait for the hospital to send a letter asking my GP to then order it for me his end - but I will certainly take the info and experience from this website to ensure I get exactly what I need - I am so grateful for the help and support from this board.

The support and knowledge has stopped me going  bit crazy with all these HA's!

:)

JACKPOT!

lorac wrote on Oct 1^st, 2009 at 8:22am:

Yes...all the other stuff will stop too. O2 will set you free. :)    When you get the first little sign of an attack,,,hit the O2 as fast as you can. I am also on Verapamil, and it takes a little while to work, but once it does it is great. Welcome :)           lorac

what HE said...lol ;)