The beast is back after 4 pain free years. Just as horrific as before. No worse no better just f…ing crazy sore. Btw I convinced my insurance to allow me 50 vials per month of .5 ml Sumatriptan and they agreed with a copay of $99. I live in Austin Texas now. Hi fellow sufferers. I guess I’m back

G'day,  Howard,  and welcome back for all the wrong reasons.  Many of us here know exactly you feel after such a long time believing you'll be CH-free forever,  only to have the bastage sneak up from behind and wallop you where it's going to hurt the most.

Happily things have continued to progress here at ch.com with even more tweakage to the Vit D regimen which continues to show great results as a long-term preventative.

The  oxygen info  button on the left side of your screen remains as important as ever,  along with the CH-specific mask available right here,  and the rest of us mug survivors are always here to help where we can.

All the best because we care,

Brian down under.

Hi guys,
Cluster guy in Melbourne AU…
This is strange, my headaches have also just returned (May 2022) after a 4 year absence. Unfortunately they are about 300% worse than they used to be. I’m getting 4 headaches a day, 2 of them really bad ones.
Have been taking the Vit D regimen for 2 months with no relief.
Started 5 day prednisolone this morning.
Waiting til late September for an appointment with my neurologist, currently being supported by GPs.
Using oxygen, imigran, maxalt, but the headaches are winning, and getting worse.
I really need some kind of intervention.
If anyone can think of anything I should be trying, please reach out.
Peace and love, d

G'day from Cairns and welcome to the club no-one wants to join.

With your oxygen,  do you know most CHeads start at a minimum 15LPM and commonly go up to 25?  Your choice of mask is also terrifically important with the non-rebreather being the weapon of choice.  We can help with a mask designed just for us.

With Imigran,  the tablets have proven to be of very little use to us.  They were designed specifically to be slow release for use in migraine but we need something that works far, far more quickly.  The Imigran nasal puffers offer some relief but the best by far is the auto-injectors.  There's also some excellent tricks to get best results at the lowest cost.

How up-to-date are you with the D3 regimen?  There are tweaks being made to it all the time and there's always different ways to use it depending on personal circumstances.  I'll ensure the current info gets to you shortly.

Other than that there's always ice-packs,  though as a Melburnian you need only walk outside,  and many people swear by Red Bull,  of all things,  chug-a-lugged at the first hint of hit.  Tastes awful,  I know,  but who cares about that if it works just a little bit!

Better days must be ahead,

Brian up norf.
0406 068 295

Hey Brian, thanks for reaching out. It’s invaluable to be able to speak to others who know what this is all about. Even with family support it’s an incredibly lonely affliction.

Started 5 days prednisolone on Saturday morning and was headache free all Sunday and Monday. Just had my first headache now, Tuesday evening, so I think I’m getting used to the steroids. We’ll see how the rest of the evening goes.

I have a 25lpm regulator and a good supply of oxygen.
I have shiploads of Maxalt which works for me to see off the lesser headaches.
I find if I take 2 x imigran 100s at the onset that will kill quite a few headaches as well.
I use the nasal spray when I wake up with a monster already settled in and I need quick relief.
But there are some headaches, usually the very late night ones that are just untouchable and just deliver 90-150 minutes of the most intense… well, you know…

I think I’m up to date on d3. 10k D3, 3 fish oils, a mature multi, 3 x magnesium and K2, please let me know if I’m missing any recent developments.

It’s funny, I do use ice packs to some effect, and lately I have been spending lots of time outside usually between midnight and 3am. It’s like 2 degrees out there but I don’t feel a thing.

I saw a clip on YouTube, a NZ physio who believes facial massage of the trigeminal nerve worked for him, so I’m going to see my physio shortly. Leave no stone unturned I reckon.

Tried to post the YouTube link but was disallowed.

Thanks again for reaching out mate
Daniel
0433 914673
danfan9@gmail.com

Ps will give the red bull a try too🤮

26dollars wrote on Aug 2^nd, 2022 at 9:15am:

Ps will give the red bull a try too🤮

Interestingly,  some lists include headaches as a possible side effect.  Either way it has something to do with the caffeine/taurine mix that makes it worth a try for CHeads.

Sorry to hear of your travails with the beast.  There are lots of good people and good ideas here, so you are in the right place.  As you cast about for treatments, give some thought to sleep apnea (especially if you suffer from night time hits).  There is a small, but growing body of research drawing links between CH and sleep apnea.  In my own case I am now more than 7 years CH-free after having my severe apnea diagnosed and treated. Something to discuss with your neuro for sure.   Best of luck to you.

H.O.P.E.

Hold On Pain Ends.....im living proof.
Pain free wishes.