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AndiD

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AndiD last won the day on August 9 2017

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  1. AndiD

    Help! verapamil and predinsone side effects

    240 verapamil is very low for CH - For years I dismissed Verapamil for being a waste of time, then finally saw a Cluster specialist who was able to up the dose. This dr maintains that there is a dose of Verapamil that will work for everybody - it's just that some unfortunately can't go that high because of blood pressure / other medical problems etc. Once I ramped up to 560 verapamil it was like a switch turning them off - and as CHFather said some people need up to 960. I have side effects of a bit of dizziness and lethargy, but after a couple of weeks they disappear - please persevere! Not sure what country you're in but UK GPs aren't able to prescribe the high enough dose so you'd have to be referred or just pay for a private appointment and been seen straight away. Good luck!
  2. AndiD

    Memantine / Namenda??

    I also tried it but after only 3 days I got terrible depression (which i never ever suffer from) so had to stop. If you can get past that though I've heard some good reports.
  3. Absolutely brilliant news. As I'm (very very luckily) not chronic I couldn't take part, otherwise I'd be willing to fly anywhere in the world to try and help. A HUGE thank you to everyone who's worked so hard to get this to where it is. Lets hope for some conclusive results
  4. AndiD

    recommended doctor list

    Dr Amir Al Din, Spires Hospital, Leeds, UK - considered an expert in CH for the UK.
  5. In that case spiny I consider myself very lucky to be relatively young and with normal blood pressure! Thanks for pointing that out. I still think MM are the way forward for those that can't do the high dose verapamil but for a cheap and not-too-awful drug I think it can be a lifesaver.. If you persevere and push that dose right up.
  6. Hi guys Just wanted to drop in with a little update. Having had the longest and toughest cluster cycle of my life which ended up in Hospital, I bit the bullet, got my credit card out and went to see a private Neuro specialist for a couple of sessions. For any UK people, the Consultant is prof. Amir Al Din at the Spires Hospital in Leeds - £200 consultation and £150 for follow ups - I did my research and he's considered an expert in cluster headaches. Quick background - I'm 35yrs old, clusters since 21.. Usually 1 to 2 4week cycles per year - coped with Oxygen and Sumatriptan. The doc told me that in almost ALL cases of CH, there is a dose of Verapamil that will "switch them off". I was dubious, as I've tried Verapamil a number of times before, but it never seems to have much effect. In his expert opinion, most people don't take anywhere near a high enough dose for a long enough time - GPs are only able to subscribe up to a certain amount and usually unwilling to prescribe the amounts needed. He was also very much against using Sumatriptan injections.. I'd become reliant on them and they almost certainly extend cycles. This time he put me on the course of high dose steroids while the Verapamil took it's 2 weeks to start working. (A standard procedure I'm sure most CH people have read about), but it's getting the Verapamil dose right that's key. I had to have a couple of ECGs at the local doctors surgery in the first 2 weeks while the dose was built up, and of course there's a few side effects (slight dizziness sometimes when getting up, easily out of breath, but that's about it). I'm now 2 weeks after finishing the steroids and on 560mg of Verapamil taken in 4 sets through the day (My consultant regularly prescribes up to 960mg for other people). It has been life changing for me - and I know it's not the cycle that's finished as I can still feel the occasional CH, but it just can't break through and never gets passed a level 1. Once I stop feeling them and know the cycle has ended I'll gradually decrease the dose until I'm drug and CH free.. and enjoy life until the next time. Anyway - thought it would be worth dropping in, just to say if you HAVE tried verapamil before but not felt any benefit, PLEASE try again as there does seem to be an eventual dose that will work for most people. Pain free wishes to all A
  7. AndiD

    Anybody tried Memantine?

    I can report that I didn't even make it passed day 2 of 5mg - deep depression set in almost immediately and worse clusters than ever. I've stopped and gone back to a proper attempt at Predisone and ramping right up the verapamil til the doc actually finds a dose that works. I WILL kill this cycle.
  8. AndiD

    Anybody tried Memantine?

    I went to see a private CH specialist consultant yesterday and he's prescribed me a course of Memantine Hydrochloride. It's a dementia drug off that apparently is getting good results for ch sufferers.. Anybody tried it or got any info before I start? - not a huge amount online about it in relation to CH.
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