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Stopping clusters

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#1 Mon, 10/02/2020 - 11:56
Last seen: 1 year 6 months ago
Joined: 05/02/2020 - 22:34

Stopping clusters

Hi, I am new on the forum, diagnosed 12 months ago but suffering for longer.  I am currently in the middle of a cluster, I have been taking steroids to help, however have had to stop those due to diabetes.  I do have the injections for the attacks but what else can be done to stop clusters?

THank you


Mon, 10/02/2020 - 23:40
Last seen: 4 years 4 months ago
Joined: 03/02/2020 - 00:35

Hi Helen, 

I am new to the forum but,  not to cluster headaches... I was diagnosed about 10 years ago and have been through many different options after starting with sumatriptan injections for aborting attacks and verapamil for prevention.
  After my experience, it's pretty straightforward for me.  There are only three things that will stop an attack without fail ... sumatriptan injections (best) sumatriptan nasal inhaler second)  high flow oxygen (third).  

I used verapamil for prevention quite successfully, however the downstide that some people may not be aware of is that the very high dosages required to have a positive effect do reduce your cardiovascular ability greatly in regards to fitness and exercise.  
I was a professional cyclist for many years and I am very in-tune to my body and its ability, so when I discovered how tired I was and how much the dosage I took( 700 -900 mg per day) impacted my performance and physical ability I decided to try other preventive options which unfortunately all failed to work for me. I tried prednesilone, topriomate, lithium, melatonin, an Ocipital Berve block, but after many months trying all of these out and suffering through it all I ended up throwing in the towel and going back on verapamil which I still use today and cycle on and off depending on the cluster cycles that I have.

Sorry for the long winded answer, I guess what I was trying to get across was how reluctant I was to use the first line of preventative medication (verapamil) because of the serious downside in exercise performance... but at then end of the day it works in preventing or reducing the volume and intensity of attacks and is better than any other options for me. 

I wish you well Helen and hope you get the support and medication you need.




Wed, 04/03/2020 - 13:04
Last seen: 3 weeks 5 days ago
Joined: 26/02/2014 - 14:26

Hi Helen,

You cannot stop attacks ever happening again as sadly there is no cure, but as Graham has pointed out there are a lot of treatments that can help.  What has your a Neurologist suggested for you?

take care


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