I have been suffering from CH since I was 18 , thats oh about 13 years now. Last Year I was diagnosed with Thyroid Cancer, ( add another log to the fire right?) . Sine my surgery to remove my thyorid last May, I have been getting sort of "mini" clusters. The shadows, runnny nose, etc all the same, even the pain is the same, however, thankfully less intense. More like a 6 or 7 on the scale insead of a 10 + like usual. They come and go over month or two, last about 2 weeks, then are gone again. my neuro seems utterly confused too. Luckliy they have been gone about 3 months or so, but now I think I am about to start my "regular cycle " of full blown CH's, the shadows are more intense these last copule days, and its right on schedule ( end of July, beginning of August every year). My question is , has anyone ever expeienced these "mini" clusters like I call them? and what did your Neuro treat them with, the only thing that works on my CH's is High levels of Pred, but cannot be on it for extended periods of time as you know, so Im kinda sol if they start up again. Benn using Zomig nasal spray, but as everyone knows insurance will only pay for 6 every 26 days , Yeah like Thats gonna Last! I would love to hear if someone has any ideas, Thanks.

Your doc can intervene with the ins co to get more Zomig. See material on the OUCH site (left) on how to do it.
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Curr Pain Headache Rep. 2001 Feb;5(1):55-9. 


Premonitory symptoms in cluster headache.

Raimondi E.

Catedra de Neurologia, Facultad de Medicina, Universidad Nacional de Rosario, 9 de Julio 3826, Rosario 2002 PKP, Argentina. raimondi@cablenet.com.ar

Cluster headache is one of the most excruciating headaches affecting human beings--especially the male sex. Most of the cluster headache cases are of episodic nature, with active cluster periods lasting generally between a few weeks and 2 or 3 months. A still undetermined percentage of patients report nonpainful sensations preceding the onset of the pain attack for a variable period of time. If occurring only a few minutes or a few hours before the onset of pain, such symptoms are called prodromal. When occurring for several days, weeks, or months before the pain, they are termed premonitory symptoms. The author believes that premonitory symptoms have not been properly diagnosed and emphasizes the need to investigate their presence, because by knowing them advances can be made in the understanding of the physiopathology of this particular cephalalgia. Furthermore, it can also allow the physician to be ahead, by giving preventive treatment and stopping or diminishing the intensity and duration of the pain attacks.

Publication Types:
Review

PMID: 11252138 

Are you having any treatments that were to improve your white blood cell count (Nuelasta?). My father, who had been cluster free for years, had the sudden return of his clusters right in the middle of his cancer treatments after getting the Nuelasta. And, like you said, not exactly a pick-me-up kind of thing to heap onto the treatments.

My uneducated theory is that it increases the white cells but also decreases the red cells that carry the O2 to your system. The reaction is then soothed by O2. Unlike healthy person clusters that stabilize after treatment, my Dad's seemed to come back again and again after the O2 was removed.

Scott

MANDY2SHANE wrote on Jul 17^th, 2008 at 8:44pm:


Hi Mandy,

Been through THAT battle. Zomig is my rescue med when the O2 doesn't work (oh and Wired, an energy drink with 344 mg caffeine and 3000 mg of taurine).

Long and hard slog but worth it in the long run. What the insurance company "needs" is a pre-authorization letter from your doc (hopefully a neuro). I initially went from 6 to 12 Zomig NS per month (but only for 5 months per effort). I think I'm FINALLY beating them down because I recently got that up to 18 per month for a yr (with the support and pre-auth letter of forementioned doc). Same copay of $20.

Yup, you can call me lucky, but it came from HARD work. The insurance co fought me EVERY step of the way (including denying O2 authorization for a while). Get pissed, get REAL PISSED. Give them no out, best question is: so, you are presuming to alter (deny) the prescription of my own physician, and you haven't even examined me? What kind of medical practice is that? Please advise on your justification. I await your reply.

Get everything you can in writing. Record FULL names of everybody you speak to there. Be a pain in the ass-they are being WORSE...

Note: I claim no expertise, As IssacNewton said, "I stand on the shoulders of giants". Linda H being one and several others. Go to the OUCH website. Don't give up, clusterheads are VERY persistent...afterall, thanks to DJ, we're HERE and kicking ass...

Best,

Jon