Haven't been on side for long time this is our history. (haven't been sleeping for long time if doesn't make let me know)
Before Cluster Headaches.
Always had problem with left sinus (Blocked), Problem with left shoulder, Problem with left upper stomach
Beginning of 2005 
Sinus infection pain started. Taking lots of Sudafed
Went to ear and nose specialist. He decide he need surgery. But after surgery pain didn’t stop.
Another doctor decide he has allergies and start inject antihistamine injections. His condition got worst.
Beginning of 2006
Neurologist Henry Kranz diagnosed him with chronic cluster headaches. Puts him on Desiril, didn’t work, but doctor keep giving him higher doses.
Pharmacist refuse to dispense it because the dose was 12 diseril a day.
Found another neurologist Dr Billamore. His prescriptions depression medication Endep.
Didn’t work still getting pain difference he can’t get up.
Then we found cluster headache web side and asked neurologist for o2. Once he prescribed o2 we left him.
Tried magic mushrooms, partially worked. But couldn’t go without Zomig for 5 days, it was too painful. Also his stomach couldn’t handle it.
Had our GP Dr Robert Allen he decide give him natural medications for stomach and  Vit D, C, Magnesium injections.
For 1 year he was able to manage headaches with o2 and all gut medication. Then it stop working.
2009 or 2010
Found another nurologist ….
Verapamil and lithium, headaches was manageable. He was still getting 1 or 2 headaches a weak. But it wasn’t that bad.
Also we had Dr hill who prescribed testosterone, dhea as well.
Until 2013
Beginning of 2013 something changed Verapamil stop working. Sometimes it felt like he was getting headaches after he took the verapamil.
He start taking prednisolone, with 20mg of prednisolone he was able to eat anything and not get headaches. But every time try to get of prednisolone headaches come back worse. Last result we had to find another neurologist Dr jaques Joubert.
2014 July
He recommended radiotherapy on nerves. He told him he had patient who was suffering from chronic headaches had the procedure and got headache free.
Of course we jump into it. Unfortunately after that worse ever happened, headaches unstoppable. 40mg prednisolone still getting headaches. Imigran injections works only 2 or 5hr longest break he had 6hr. Covered with boils, cysts, acne which could be result of long term use of prednisolone and all imigran injections.
Still using oxy, does not work by itself. Imigran injection or Zomig 2.5mg. Still takes 5 verapamil and 2 lithium (Don’t thing has any effect at all).
Too tired, can’t keep sleeping schedule because all the headaches and medications. I am scared I am gone lose my partner from side effects of all this medications or he will end up killing himself. I can understand when he says his life is not worth living, because sometimes when I watch him in pain I wish I was dead. I feel hopeless, last 10yrs. All I can do run around get more medication and watch his pain.
(PS: tried 10000iu Vitd, fish oil, magnesium, zing, and more for anti-inflammatory regime didn’t worked). I know rebound headaches but how you can get out of cycle. (tried Topiramate for wk didn't change anything then indomethacin 100mg a day for wk same result.) Any recommendation? pls

G'day Sevim. We understand the pain and frustration, it can be awful.


Have a look at both the Royal Melbourne and St Vincent's because both have specialist pain clinics and both bulk bill.

Getting a bit of continuity into the treatment is so important to work out what's working and what's not.

Please let us know how you're getting on so we know how we can best help,

Brian up north.

Hi sevim,
  I feel your pain and there are those here that can at least understand what your going thru.
I see that your in Melbourne ?  I am as well
one of the best here is dr Hillary hunt at the Epworth centre in Richmond, she is head of nuerology and specialises in headaches and is brilliant with clusters
her office contact is 9429 3744
3 years ago I was at my wits end and she saved me, literally, after the witch doctors I was seeing.
im positive if you rang as told her of the desperateness she would do her best to see him.
she even has a standing order to all her patients that either run out of medication or O2, to head to the Epworth centre hospital and tell them your her patient and they will admit you in order to get the med's or O2 needed.
I agree with one of the last comments, you need to stick with one neurologist ! jumping around from one to another, until you find the right one, is not good, sometimes its a process that has to be gone thru to finally get the right med's etc etc.
for example, the d3 regime, did you get blood tests, before he started and titrate up with the loading doses then get another blood test to confirm levels ?  unfortunately, we have to go thru this process to get to the right levels, skip one of the processes and it was probably a wasted exercise.
but listen, please try dr Hillary hunt, I thoroughly recommend her...
I hope this helps
best of luck
colin

sevim wrote on Dec 20^th, 2014 at 4:03pm:


What do you think is causing the rebound headaches? If it's a painkiller then the only likely option will be to eliminate its use or at least drop it down to only 2-3 days a week at the most. Not easy I know (from experience).