HazBaz

Hi all, Been a long time. I am currently 4 years in to a cluster free period! My longest in 12 years. Last episode was in 2018. Touch the woodiest wood that ever did wood. Been struggling with my mental health though. And the doc has suggested propranolol for anxiety. My question is, will the sporadic dosing of 10mg of propranolol only when needed, possibly trigger off my CH? Any word on this? Thanks.

Any experience of scuba diving with clusters? Does it trigger attacks? Is it safe with CH?

Works for me. Lessens frequency, duration and intensity, at relatively low doses compared to some. I take 80mg IR 3x daily and 240 ER 1x daily when in cluster. So 580 total a day. Terrible constipation and other 'normal' headaches are side effects. At higher doses my heart doesn't cope too well, so regular ECG monitoring is a must at dose change. I also still get hit. At least once or twice a day. They are just less unbearable and relatively easy to abort with O2 it seems.

Amen Roadie. Another U.K. sufferer here who experiences all of the above.

I had 4 teeth removed (including 2 wisdom teeth) because of misdiagnosis of CH as tooth rot. My CH started before that, and I’d had no dental work on that side before that point. Seen more dentists in my life than any other healthcare professional. Got a checkup this afternoon actually!

I take 1000mg of paracetamol and 400mg of ibuprofen to take the edge off shadows... not sure if it works or not. As FunTimes says, a strong cup of coffee does well.

When I stopped smoking weed (heavily) aged 25 due to anxiety, my CHs started that same year. Took years to be properly diagnosed. Stopping smoking tobacco 2.5 yrs ago has lessened the frequency/pain of the cycles. Well, until this week... Everyone is different... with some common shared triggers/experiences. Whatever works is worth working with.

Last cluster was in March/April. Nice little 3 weeker. Brought under control quite fast with verapamil. Got another one. Started about 5 days ago. Brutal. Awful awful shadows... almost feel like full blown attacks. Almost... Odd, because i'm usually an Autumn and Spring kind of guy! Getting me some of that sumatriptan tomorrow. Looks like a new form of injector... although could be the older style. Comes in a smaller box than the Sun Pharma epi-pen ones. Back on the vit d. Maybe its time I started busting... Anyway... its 3:40am here. Not sure i'm going to get any sleep with this sheet going on. Ah well. Its the life we lead. Ta. 'Nice' to be back again so soon.

So... back on 240mg ER verapamil plus 80mg in the morning. 20000ug vit D. No naps, alcohol, chocolate, processed meat, refuelling the car, woodwork, painting, going back to sleep after waking. For how long, I don’t know. any new treatments, salves, chants etc that I should know about?

Hi all, long time absentee. 2.5 yrs cluster free. Off verapamil for 18 mo. Just changed doctors and was bragging about being CH free for so long... hit me like a ton of bricks just before the snow hit in the U.K. a few weeks back. Hello Spring Time! after a remission you forget just how painful your CH is. I would say I’m happy to be back.... maybe I’m just happy to have the support network I’ve relied on several times still be here, and with the same (and lots of new!) faces. heres to you all! HazBaz.

Yup. Thunderstorms set me off a treat. I am at ONE with the skies!

I had a nap the other day = fine. Today= brutal headache after about an hour. Took the micky. Paid for it. Although I think my cluster is winding down. Come on summer proper... Hurry UP!

;D. Yup. And pretty good to keep you going through a heavy sesh as well. Not that id ever do anything like that. :

In trial phase. http://www.gwpharm.com/other-targets.aspx

Oh... And this is just to tide me over until my fruit cakes are ready... As I'm in cluster now, and verapamil is only just keeping the flipping flippers at bay. No napping, alcohol, chocolate, cheese, filling the car with fuel, processed meats and seemingly, exercise also. Not had that trigger before, but OK!

Yeah. Probs. I want to order a bulk pack, so would like advice on syringe size/needle gauge from anyone who knows about splitting doses, or has insulin dependent diabetes even. It's a minefield of huge, nasty looking syringes and long, deep, thick needles out there... I would want something comparable in length to the auto-pen, so I don't go too deep and hit an artery or anything. Plus, the shorter and finer the better. Long needles are FREAK-EE. Can't even look when having blood work done... Wuss.

So many good teeth. So much waste. So much money. So little help!

Can anyone recommend an appropriate syringe size/needle gauge for splitting the 6mg auto-pens of imitrex? The needles must be comparable in size to the AInj. ones, but possibly a little finer to make the whole process less horrible. Thanks.

I'd love to ask my doctor for dronabinol just to see what he says... Sativex is what we have in the UK. And it's licensed only for use with MS patients. Pretty sure its tightly controlled and restricted, and unlikely to be available for anything else... But we'll see. I might ask just for fun. . Or ask my neuro (who specialises in MS) next time I see him.

Summer 2012 I attempted to quit smoking (whatever number attempt that was). It was the summer I was properly diagnosed with CH. I thought the nicotine patches I was using were the cause of my 6-8 attacks a day. And brutal ones at that. But, last time I tried to quit using patches in cycle, nothing. It's all very hit and miss.

Hmmmmm. It's not that bad... Yet. Hopefully it stays that way. But my heart goes out to your friend CHS... I'm experiencing NOTHING close to that and it's very unpleasant. Thanks for the sentiment!

New symptons! YAY! Getting A LOT of trigeminal activity at the moment. Stabbing pains mostly on my cluster side. Makes it worse if and when I touch my face.... The clusters themselves are back under control. Verapamil to thank for that. And not drinking. Typical when the sun is absolutely stunning in the UK this week! Does any one else suffer from trigeminal neuralgia during clusters? And if so, how do you mediate it/reduce its effects? Thanks. H.

You just need a good GP. The GP you have is either not informed/lying about not being able to prescribe O2. Bottom link in the OUCH FAQs: https://ouchuk.org/faq#n84 Mine didn't even know he could prescribe O2, until I showed him the info from CB/OUCH that said he could. It was rapid from HOOF sent off to O2 delivery for me. No more than 5 days. I know that's ages when in pain, but once you have it, depending on supplier, you should be able to get refilled tanks within 12/24 hours. Just keep an eye on the gauge and preempt needing to order. Some GPs are strangely resistant. Probably a cost/risk/benefit thing. But some are very understanding. Once you have a 'scrip ask to be assessed by an O2 nurse and get the GP to refer you to an oxygen clinic. Then you can ask the nurse for ambulatory cylinders to carry with you in the car/work. Keep pressing the GP. Go as often as possible and inform them that your quality of life is minimal. Keep asking for O2. Provide as much info. as you can (some docs know very little about cluster headaches). Good luck. You'll get it eventually.