dose anyone else suffer clusters if so please advice on treatmenrs that worked for u

[ladyflower]

[Charlotte_NMC Partner National Migraine Centre]

We have a really good factsheet on cluster headache. It details the best treatment as recommended in BASH and NICE guidelines migraineclinic.org.uk/wp-co.... Ouch - ouchuk.org/html/ are a charity providing support for sufferers.

We at NMC can provide you with consultations. We have a number of cluster headache patients who see our doctors. All the best!

[ladyflower in reply to Charlotte_NMC]

i am seeing my GP tomorrow, he keeps telling me its a migraine or sinus trouble but its nothing like either of them. a friend who suffers them and said it sounds the same, droopy left eye and stabbing pain on left side, starts with no warning in the night and goes then comes back in hours its been going on for 2 months. the Dr isn't very sympathetic he even suggested i need to drink more but i make sure i do as i get migraines if i don't. i don't think he has ever gad a migraine or cluster attack. if he is no help how much are your consultations. thanks for getting back to me

[023mjc]

Sumatriptan injections are the ONLY thing that works. The tablets help a little but they take too long to work. The injections take 5 - 7 minutes and clear the pain completely. Only allowed 2 per day though, so they have to be rationed. If I have pain all day I try to save one for the late evening so that I can get some sleep.

[VeraS]

I started to receive Botox injections for my Cluster Headache/chronic migraines (which I would get daily for 3-7 days, usually twice a month) back in the summer of 2013. It is 32 injections in the forehead, scalp, shoulders and neck. Not the most comfortable thing in the world, but compared to the headaches, it was like picking daisies. The doses are generally given every 3 months. The first set of shots were *wildly* successful for me, beyond even the doctor's expectations; I could feel the headaches trying to happen at their "usual" time, but it felt like...I don't know, things wouldn't expand or flow to turn it into a full blown attack. Additionally, I did not suffer the photophobia or auras. I would occasionally still get the headache pain, but it was manageable and often resolved with merely excedrin migraine (a first for me!). Seeing as 100 mgs of Sumatriptan, handfuls of Vicodin and every other med under the sun had done very little to manage the headaches (and often made them worse due to the stress of the various side effects, rebound headaches, fogginess, etc...), this was an absolute miracle to me. I dared to think I could finally get my life back and start actually making plans again, rather than be in this perpetual , debilitated maintenance mode of existence. I started thinking clearly for what felt like the first time in ages. Toward the end of the 3 months, the headaches got a little worse and by the time I was due for my second set of shots, I had a full blown clusterheache (though still not experiencing the auras and photophobia like I used to), so I was anxious to get my second treatment and went into the doctor with a rapidly worsening headache to get my shots.

MISTAKE.

Much in the way they don't quite know what causes clusters and migraines, they aren't sure how Botox works on them and it is still a relatively new treatment. When I got the shots, they felt different than the first time (i.e., hurt a lot more, there was some bleeding) and when I left the headache kept getting worse. Then it continued, for days. The best I can figure is that if the paralytic effect of Botox on certain nerves and associated muscles can shut down the migraine response, it's quite possible that getting the shots while I was in a full blown attack sort of left me in an "ON" position, so that there was potentially even few barriers to whatever triggers the conditions. After suffering for days with the headaches and accompanying symptoms, I asked my neurologist if this could have happened. She gave me "I don't *think* so", but basically she couldn't definitely say and another neurologist I consulted with said my theory could indeed be what was happening. I could find no studies that were specific to a person receiving the injections while suffering a full blown attack and seeing as how I had such success with the first round of shots, I basically have resigned myself to dealing with daily headaches of moderate to acute severity until mid December, when the last dose is due to wear off and I'm scheduled for another round. Because of the life altering success of my first round of shots, I'm going to continue with them, but I highly recommend to anybody interested in receiving Botox therapy, DO NOT GET THE SHOTS WHILST IN THE MIDDLE OF A HEADACHE EPISODE. The doctor will probably say it doesn't make a difference, but the truth is, how can they even know that when THEY don't even know how it works? I will update my (what is hopefully) progress after the next round of shots, because if they have the same success as they did the first time round for me, they may be of great benefit to other cluster headache and chronic migraine sufferers (and one that doesn't come with all the wonderful side effects and rebound headaches that every pharmacological treatment I have tried ).