Hi,

I am very new here and have read around a lot and am hoping now for some thoughts/insights from people with more knowledge than myself.

Yesterday at the Dr's I was told she felt I was getting Cluster migraine (which I presume to be cluster headache). I have been a migraine sufferer for many years since adolescence, sometimes a few in a week, sometimes months without and the occasional humdinger- including being rushed for a scan in the middle of the night as I was presenting like i was having a bleed. Now even though I am only nearly 42, it appears I have entered menopause. Since January, I have been getting episodes of what I thought was dry eye associated with menopause, my doctor could only go on what I was telling her until yesterday when she saw me in the midst of what I had thought was dry eye episode. This is what happens.

It always begins through the night when I am "grabbed" out of sleep by an excruciating pain across the surface of my eye- it feels like the front of my eye is being peeled off- this is only ever in one eye, the left one. My eye looks red raw, my eyelid swells and droops and my eye just about spits water- my nose also stuffs up on that side. I have a fairly high pain threshold, but I could yell out with the suddenness of this. It sometimes will settle within 15 minutes, other times longer and it may happen another 2 times through the night. If it happens as I am waking up in the morning- it takes much longer to go away, will weep and sting for hours and i find it difficult to concentrate on anything. Even when the severe sting settles, I am left sensitive on that side and very drained. Sometimes it happens every night, sometimes I make it through the night only to have it flare as I wake and sometimes I have no episodes for a few nights at all. I have no pain in my head, temple, neck except for stiffness which i attribute to getting older) and sometimes aching over my left top sinus after a particularly bad eye attack. Until yesterday i hadn't taken anything as I hadn't thought of it as yet another form of migraine. I was prescribed Indocid which took the edge of the eye pain yesterday (I was in a longer episode) This morning I tried one of my Imigran nasal sprays which I have for migraine (my Dr had suggested this) and I had pretty good relief within 15 minutes. My eye looks clear, isn't weepy, my nose isn't running but i still feel as though it is sitting there.

I know you guys can't diagnose, but is this reminiscent of cluster headache at all? could menopause have triggered them? I had been on sandomigran since January which I am stopping now- could that have contributed? I did enjoy the decrease in migraine while I took them, but haven't enjoyed the weight gain!

Any thoughts would be greatly appreciated. I have a referral to a neuro and will make an appointment tomorrow, don't know what kind of wait there will be though.

Thanks in advance for any help
W96

It's possible to have elements of both conditions at the same time. Just another example of the complexity of the headache and why we need to work with a headache specialist whenever possible.
--------------

Curr Pain Headache Rep. 2007 Apr;11(2):154-7. 


Cluster-migraine: does it exist?

Applebee AM, Shapiro RE.

Given C219B, Department of Neurology, University of Vermont College of Medicine, 89 Beaumont Avenue, Burlington, VT 05405, USA. robert.shapiro@uvm.edu.

The nosological boundaries between cluster headache and migraine are sometimes ill-defined. Although the two disorders are distinct clinical entities, patients sometimes present with clinical scenarios having characteristics of both headache types, but either do not fully meet International Classification of Headache Disorders, Second Edition diagnostic criteria for either disorder or have sufficient symptoms and signs to allow both diagnoses to be present. These occasions provide diagnostic challenges and include what is variously described as migraine-cluster, cyclical migraine, clustering episodes of migraine, cluster with aura, or atypical cluster without autonomic symptoms or severe pain. Patients with symptoms overlapping cluster headache and migraine likely reflect the inherent clinical variability in each of these two disorders, rather than distinct diagnostic entities in their own right.

PMID: 17367596

Thank you to those who have replied. I had to go up to the Dr's in the midst of an episode today as Imigran hadn't really touched it (I will admit that i took it way late as I was waiting for it to ease) The Dr got another Dr in to check that what she felt was likely to be the case (as she said- she hasn't actually had a patient present with one). He was convinced- I was denying- along the lines of, but can't it just be something wrong with the surface of my eye- while my eye and nose were dripping like a leaky tap. Anyway, they put me on oxygen and injected me with something (have forgotten the name but like really strong aspirin) and stemetil. When things were manageable I was allowed to come home and rest, which I have done. It is still not perfect and in danger of ramping up again as my eye is feeling scraped and is leaking somewhat but not as bad, so I have just used another spray of Imigran as I need to try and do some teaching this afternoon. How do people cope with this? and is it usual to have one go all day? The only good thing is I have no head pain with it like with migraine. But 2 sprays of Imigran in a day? that will soon add up....

Thanks for listening
W

You might wanna try 1/2 to 1/3 dose imigran injections as outlined in the imitrex tip: Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or

Using that method they don't add up so fast, and injections are the most effective form....


[/quote]

Thanks for the tip. At this stage I have only had Imigran nasal spray- maybe they come in a lesser dose if the full does is not required? I don't know if you can get self-inject here in Oz, but will ask if this keeps going.

Guiseppi wrote on Mar 29^th, 2010 at 12:21am:

See what I mean? Beer is a known trigger for so many victims of ch.com so I figure the more I drink, the less pain others need to suffer.

Do I get thanked for this? A bit of recognition perhaps? Nope, not a sausage.

Nevertheless I shall continue with my selfless quest and if you've any beer laying around the house that you want rid of, purely to avoid temptation, you need simply send it to north Queensland where it will be recycled into planet earth.

Otherwise, a headache diary is a real good move, as is watching for other possible triggers. Energy drinks and ice-packs are commonly used (though some of us use heat as well) and also consider an ordinary dose of panadol washed down with a serious cup of coffee. Just be warned that if two don't work then neither will ten and I speak from experience.

What part of Oz are you in? Just checking 'cos if it's SA then you can keep your beer in case the pipes need cleaning or you want to de-grease your engine.

Cheers,

B.

Well things have settled somewhat, although my eye is still leaky, it is not red raw, I get many twinges but not excruciating. I had a 2nd go on o2 at the Dr's where she also phoned a neuro (can't get in until the 9th June) who agreed with the CH diagnosis. My concern at this point, I am on 50mg of prednisone for 5 days (my last day tomorrow) Dr mentioned possibly tapering, but we didn't get into it, and now it is Easter. I should be able to touch base with someone on the Saturday. What kind of tapering is best to use? I am scared to suddenly stop and have it come back while DH is away, I couldn't possibly drive myself to the hospital for O2 if needed. I am also on Indocid 50mg 3x a day (though can you believe I forgot the middle day dose?) I know it doesn't seem to be what people are using, but it's what I have been given at this stage. I have been warned off Imigran due to possiblity of rebound with frequent use- again I know people may not necessarily agree with that, but that is what my GP has said at this stage, and she has been fairly on the ball so far. Any info on prednisone tapering would be appreciated so I can suggest ot when I touch base with the Dr on Sat.

Thanks all
Gina

For any course of prednisone tapering is very important. Abrupt discontinuation may cause complications, most commonly adrenal crisis (doesnt have to but may). It is a simple withdrawal reaction. The general rule most people follow here is to taper down by 10mg daily or 10mg every second day until zero.

Prednisone is a transitional treatment only and as Joe says, without prevent in place underneath, does little else but mask the symptoms, only to come back once it has been tapered off.

For many here the jury is still out there on triptans and rebound and if a risk of rebound exists, then, certainly in my opinion, it pertains to extended and very frequent use only. Many of us consider Sumatriptan a perfectly safe and very important first-line abortive. You will find that, after O2, it is the most frequently used abortive here.

I am not sure whether your diagnosis has now firmly established whether you indeed have CH, but if it has, I believe that it is important that you discuss preventative treatment with your GP. Prevents and Prednisone should start in tandem, so that, once you are off steroids, your prevents have reached therapeutic levels (most take 2-4 weeks to take effect).

With Easter in mind, perhaps a call to your GP may be worth your while to check whether it would not be better to start a prevent asap (Verapamil, Topamax, Lithium etc.) and rather than abruptly stop prednisone to extend it by a few days and to then taper off. This would give your prevents time to build up and your prednisone time to cool off.

Hi Gina
Welcome to clusterville, you'll get a lot of good advice here.
Anything I can help with ping me a PM & I'll get back as soon as possible, I'm not at home now & wont be for about the next 2 months & WEB usage is limited to when I can get to the Net cafe.

Cheers
Barry

Lord knows we love a happy ending around here. Sorry you had what sounds like a damned painful ailment, great news that it wasn't CH!

Joe

PS a quick reminder....you do NOT owe Brian any beer.