Cluster Migraine! Help!

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Smithy4
New Member


Date Joined Nov 2010
Total Posts : 2
   Posted 11/22/2010 6:41 AM (GMT -7)   
Hi, I'm a 36 year old male and have suffered from migraine attacks from about the age of 5 years old. Until my late 20's these attacks were manageable (so far as is possible with migraine!!) with about 2-3 per year. However, from my late 20's through today, my migraine pattern seems to have changed. I now go through phases of weeks (4-8) where I can experience anything upto 3 per week, all with the same symptoms as my bi or tri-yearly ones of years gone by i.e. eye aura, headache, then (sometimes) nausea. The symptoms have always remained constant. After this, what I refer to as "cluster period" passes, I can go for the same period of weeks without experiencing any attacks, and life is good.......then they come back again! I've gone through a number of preventative and reactive drugs from my GP (Pizotofen, immigran etc etc) in the past, but generally I still experience these attacks flying under the radar of all medication! I've also had a brain scan carried out (no abnormalities found), and had numerous appointments with my GP and neurologists about this, but I'm just told "you're a sufferer!!" I lead a particularly active lifestyle, so sitting or lying at home prone with these awful things doesn't sit well with me. I've done all the food/activity diaries etc to see if I can pin down my "trigger", but the bottom line is that all of these things are a constant throughout my "cluster" attacks and the time when I am not experiencing any, thereby making no sense of trying to pin the blame on any one thing! I'm going through one of my "clusters" presently, and have decided to write this post as I'd be interested to hear if anyone does, or has experienced this type of migraine?? Any chat/help is good help!! FRUSTRATED! confused    

Annuk
Veteran Member


Date Joined Jan 2006
Total Posts : 1308
   Posted 11/23/2010 2:18 PM (GMT -7)   
Hi Smithy4,

Welcome to Healing Well. Sorry to hear you are having a rough time! I am no Doc but it does sound like Migraine. I suggest you see a Neurologist, especially one who is a Headache Specialist, as they are best placed to diagnose and treat you correctly!

I have had Migraine for just under 40 years, and over the last 20 years has turned Chronic (chronic - attacks occuring more than 15 days in a month). So I know how debilitating it can be. I also have a rare form of Headache, which for me can be worse than Migraine, called Hemicrania Continua and I am in pain 24/7 with attacks of very severe pain most days.

Can I respectfully suggest that although it is a comfortable terminology for you, that you try not to refer to your attacks as 'Clusters', as there is also a headache called Cluster Headache and the term could become confusing!

But, just so we are completely straight here, can I ask how long your attacks last for individually, and other than the eye aura, do you experience any other symptoms alongside the headache attacks? For example, does your eye droop or water etc?

Please see a Headache Specialist , you won't regret it!!! Let me know how you get on!

take care

Ann
Co-Moderator of the Migraine/Headache Forum

DX: Hemicrania Continua, Chronic Migraine, IBS, Allergic Rhinitis and Heart Murmur

Meds: Imigran Injections, High Flow Oxygen, Mebeverine, Lansoprazole, Nasonex and Clarityn

Smithy4
New Member


Date Joined Nov 2010
Total Posts : 2
   Posted 11/24/2010 4:08 AM (GMT -7)   
Ann, thanks for responding, and also you have my fullest sympathy for your condition Hermicrania Continua - that sounds just awful, and kinda puts my condition into a bit of perspective!!
I have been diagnosed some 20 years ago as being a migraine sufferer, and as I said previously, have spent alot of time with docs and a few neurologist appointments also (scans etc). However, I've not specifically asked for a "headache specialist" when asking my GP to refer me for consultation - perhaps I will now - thanks for that. My previous neurology appointments did not last very long at all - again, simply told "you're a sufferer, continue with your GP's medication!" Frustrating!
Re your comment on "clusters" I do realise that there is the "cluster headache" condition which is a different beast, but I'm not sure how else to explain the pattern of the migraines occuring in their frequency and in a confined time.....and then disappearing?! If anyone knows of the a proper terminology here, I'd be glad to hear of it?
Re my symptoms, they are generally very consistant, and I don't experience the watering/drooping eye which you mention. Basically, I have med's stashed everywhere so that when I feel the onset of one (aura) I get some pills into me asap, as if I don't my headache and nausea are unbearable! Generally my aura can last for 3/4 - 2 hours, almost always starting as a small blind spot in the centre of my vision which enlarges into an arc of jagged flashing electrical looking lights, which works its way into my peripheral vision, and then out of sight (generally the attacks alternate to either side of my vision - no specific "one" side for all attacks). As the aura disappears the headache kicks-in very quickly unless I have taken med quickly enough, followed approx 1-2 hours later by nausea. I have experienced pins and needles down my arms in isolated cases. The effects stay with me for anything up to 48 hrs, with the first 12-24 spent attempting to arrest the headache pain - the nausea, when it does occur, generally passes after about 2 hours. The trouble I'm having with the frequency of the attacks is that they have been occuring in about 48-72 hr cycles when they come in their "clusters", leaving no time at all from recovery of previous!! Aaaahhhhhh!! I think the person who comes up with a cure for these god-forsaken things should be knighted..... immediately!!!

Annuk
Veteran Member


Date Joined Jan 2006
Total Posts : 1308
   Posted 11/24/2010 5:57 AM (GMT -7)   
Hi Smithy,

I totally understand about what you are going through, especially finding a good way to describe the headaches that come in groups!! I get some of my HC attacks in what could be described as groups, but I have my own terminilogy for the lol which is '3/4 days events' lol!!! Yes, you are right when the attacks come like this and no break or very little break in between it is gruelling.

I should imagine you have tried most preventative medications and abortives, but have you tried Frovatriptan (Migard)? If you want a day when you have either no pain or reduced pain such as a wedding or other special event. You would typically take one a couple of hours before you go to bed, (even if you have no pain at this point) not only will you get relief through the night but as this med stays in your body for up to 26 hours, the following day is usually pain free or very reduced levels!

This can be very useful if used sparingly as in time Frovatriptan can lose effectiveness if taken too often, but wonderful for a pain break!!! If you are having a particularly rough patch again taking 2 Frova in 24hours for 3 days would give you a break, again don't do this too often as it can lose effectiveness!

Hope this helps!

take care

Ann
Co-Moderator of the Migraine/Headache Forum

DX: Hemicrania Continua, Chronic Migraine, IBS, Allergic Rhinitis and Heart Murmur

Meds: Imigran Injections, High Flow Oxygen, Mebeverine, Lansoprazole, Nasonex and Clarityn

samantha kailin
New Member


Date Joined Nov 2010
Total Posts : 3
   Posted 11/27/2010 4:11 AM (GMT -7)   
i hope that this will help you..i am also a sufferer of migraine and usually have them once in a month..
well~
now, i have controlled it and for 2 years i haven't get any migrains and i am overwhelmed..why not try what i have try..
 
when there is air in my stomach, due too too much gaseous drink..

cold drinks..drinking alcohol on empty stomach..drinking stimulus coffee,teas or pepsi..

affect the migraine..they usually trigger them when there's too much air in your stomach..for some ladies, they will experience migrain when they are having their period..cause that is the period where our stomach feels bloated..
i hope it will help..
 
good luck !!
 
 
since i have already write in my blog, you can feel free to look around~ hope it will help lot..the pain is really killing..

LdyJane
Veteran Member


Date Joined Jun 2008
Total Posts : 903
   Posted 11/27/2010 6:44 PM (GMT -7)   
Smithy; I do have cluster migraines; the expert in the field is Dr. Todd Rozen, now at Geisinger in Pennsylvania. I was fortunate enough to have him as my doc when he was at MHNI is Ann Arbor. Long story short; 3 week in-patient stay and they controlled the most severe symptoms of the clusters...the suicide pain that resulted in head banging, rolling on the floor..all of the stuff.

What I have now, is called a "cluster variant" I will have up to 9 headaches a day at times; I sometimes have eye/nose involvement, sometimes not. The HA last anywhere from 15-20 minutes to 1+ hours; the pain increases as the episodes return. The pain is still unilateral, although it feels as if the pain spreads the more the HA I have.

This year, my cluster period lasted almost 11 months. The last med that has helped is lithium; it has broken the cluster period. Have you ever tried oxygen?; a mainstay for clusters, it helps tremendously.

If you are able, contact Geisinger; they learned early on, that Dr. Rozen has a nation-wide following and they schedule accordingly. I still go to MHNI in A2, but I also go to Cleveland Clinic, they are also very knowledgeable about this. You may not have full blown clusters, but you may have the variant; if you're not getting the help you deserve or you're feeling like you're beyond your current doctors capabilities, look further.

good luck,
Janice
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