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Showing all posts by "Maendeleo"

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Posted in Neurologist in Newcastle or Sydney?? on 03 Jan, 2018 - 4:04 pm

shrek_2226 said:

"Also, Associate Professor Alessandro Zagami is one of Australia's leading headache specialists and consults at Randwick and Kogarah. He is particularly interested in cluster headaches but unfortunately has a very unique bedside manner."

Have just visited Zagami, (on recommendation from queens Sq clinic in London which seems to be one of the leaders in CH) and understand the bedside manner comment! Appears to be just his way as seems pleasant enough after that. Was disappointed he wasn't interested in the vitamin D I've been taking to prevent it. His preferred method is GONB followed by verapamil.

Posted in Just started on 28 Dec, 2017 - 10:54 am

Hi Charlie
Sorry to hear you've been diagnosed with ch.

Im 37 and I get very tired and feel vulnerable, for want of a better description after attacks, being worse the stronger or more attacks I've had, even if I've been able to abort. If it's not aborted I vomit from pain too, which I don't think many others do.
I do continue working but have been lucky I can work flexibly and often with reduced hours.
I'm not sure you have ended your cycle if you still feel twinges, it's just preventing them breaking through. Did you get diagnosed by a headache neurologist? And are you being helped/monitored by gp for the verapamil? I don't know if they're side effects and can imagine you would be reluctant to try something different, but it might be worth taking a look at the other preventative and abortive meds out there.


Posted in Vitamin D high & Lithium interaction on 23 Dec, 2017 - 12:58 pm

Hi everyone,

Wanted to share my experiences as haven't seen this noted on any of the sites I've searched.

In brief...

1. Lithium appeared to disrupt my vitamin D. In addition to feeling awful from a low dose, the relief I found with Vit D was stopped while taking it and resumed when I stopped. Worth considering if you are taking Vit D without success.

2. Vit D levels are very high now, 343 nmol, & I continue to take 35,000 IU a day, but I'm reluctant to reduce dosage as worried attacks will return. Has anyone else had to maintain very high D levels to stay PF?

3. A very cheeky Christmas question.... I'd love a couple of drinks this Christmas, but alcohol has triggered me in the past. Does the Vit D disarm the triggers, or is that wishful thinking on my part?

More info if useful.

About me: I'm ECH, started about 14, I'm now 37. Luckily usually only get it every 2-3 years. Oxygen aborts cleanly (not sure if it is giving me rebounds, but I'd still use it if it was).

This Cluster experience: About a month ago it started up. I had tried the D3 regimen before but this time dosed up high 21,000 IU a day, moving to 35,000 IU, which amazingly worked - Batch is my hero! But I had started taking Lithium at the same time, which apart from making me feel all kinds of awful (nausea, loss of appetite, dizzinness/light headed, and extreme light sensitivity to *both* eyes) my attacks became more frequent and through the night when my pattern is for early morning attacks. Despite being a low /starter dose for lithium, I felt so awful I stopped taking it, at the time not knowing what I was reacting to. Within a day the attacks started to die down, and then back to attack-free days (small shadows excepted). When my D levels were tested, I came back at 260 nmol. I dropped down to 21,000 IU a day, but just 3 days of that and I could feel the shadows coming for me, so went back to 35,000 IU - sure enough had an attack a few hours later that night. I have stayed on this dose assuming the test was wrong, and went for another test 4 days ago - this came back at 343nmol. I'm reluctant to reduce again for obvious reasons but I have now been dosing pretty high for a month.

Any advice or similar experiences?

Thanks & Merry PF Christmas wishes to you all!