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Topic: Migraine or cluster? (migraine-cluster syndrome) (Read 528 times) |
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fred33
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Migraine or cluster? (migraine-cluster syndrome)
« on: Feb 18th, 2004, 4:00pm » |
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Hello,
I'm a newbie here, I'm a 28yo man. I was diagnosed with severe migraine 4 years ago, but it's getting worse, I can have 4 or 5 attacks a week, where I'm totally disabled. I had face pains all the time too (one ball behind the right eye and sometimes a kind of cylinder at the top of the left cortex). All my migraines have begun with eye and noe tearing and with these two elements starting to pound, then pulse and then.. inable to speak or hear, all the whole head pulses and I vomit a lot. Even if at first my "veins" are making me pace, I rapidly have to keep quiet in a dark "cocoon" and take a triptan (actually eletriptan), because every head move is like a knive in my brain.
(imagine what it's like when I vomit...  ).
My neurologist (after seeking ORL and ophtalmic examinations) said it's a mixed form of migraine, with elements of cluster explaining the residual face and head pain. Anyhow, treatment is the same. Both prophylactic and crisis medications are effective for me  after two trials only.
My prophylactic medication (pizotifen) doesn't exist in USA, is it right?
My triggers are vigourous cardio-training, too much sleep, pollen season, and alcohol (even a tiny glass of alcohol and BANG, but note that marijuana helps me to sit/lie still when I'm starting my migraine and doesn't worsen it)
Has anyone a strange kind of mixed headache or should I pass a MRA?
Your help would be welcomed.
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| « Last Edit: Feb 18th, 2004, 4:03pm by fred33 » |
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Edski_1
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Re: Migraine or cluster? (migraine-cluster syndrom
« Reply #1 on: Feb 18th, 2004, 4:11pm » |
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Out of curiosity, what are your answers to the cluster quiz? Explain any "odd" answers, seeing that your headaches seem to be difficult to categorize...
BTW, my CH seem to be somewhat on the edge between episodic and chronic...a very long cycle that suggests the chronic form, but other characters that suggest the episodic form. Everyone's headache unique it would seem...
And sure, it is possible that there HA's that mix some characters of both Migraines and CH...and there are similarities in treatments...
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pubgirl
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Re: Migraine or cluster? (migraine-cluster syndrom
« Reply #2 on: Feb 18th, 2004, 4:36pm » |
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Fred
I'm sorry but I really don't understand what your neuro is saying.
The symptoms you describe on the face of it are those of severe migraine (eye, nausea, movement etc). (I get CH and migraine)
Luckily I have found that triptans (I use Imigran and Zomig) and 02 work perfectly well for both CH and migraine.
I thought Pizotifen was available in the US, it is certainly on the survey list on this site. I found it was a good preventive for migraine, but did piss all to prevent my CH and it did make me sleepy and fat!
If there are no contraindications for you for Triptans and 02, I would use them without worrying which headache it is. I can't tell at the outset sometimes, so I just wack in the 02 and it goes.
Wendy
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| « Last Edit: Feb 18th, 2004, 4:37pm by pubgirl » |
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fred33
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Re: Migraine or cluster? (migraine-cluster syndrom
« Reply #3 on: Feb 18th, 2004, 4:51pm » |
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The cluster quiz result is pretty unclear: 4 yes in the non-cluster questions and 5 yes in the cluster questions... 
Am I in the right forum or should I be kicked out til a migraine forum?
P.S.: I never tried pure oxygen but coxibs (NSAID banned because of asthma), DHE with no result. In fact pizotifen is used as an orectic agent here, but I don't eat more than before and didn't gained weight (I'm underweight anyhow) -this time I'm lucky  -
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| « Last Edit: Feb 18th, 2004, 5:01pm by fred33 » |
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pubgirl
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Re: Migraine or cluster? (migraine-cluster syndrom
« Reply #4 on: Feb 18th, 2004, 8:10pm » |
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Fred
Nobody is kicking anyone  , but if I were you I would pray it IS migraine as it is SO much more treatable than CH.
I'm not sure if you are saying that Pizotifen works as a preventive for you or not. If you are still getting attacks, it doesn't sound like it is!
Why not do some digging around about other migraine preventives as an alternative, as the CH preventives are mainly pretty heavy duty drugs to avoid unless you have to take them.
There is a very good link on your left here (headache links) and also on the main OUCH website with some good ideas about other research you can do.
Wendy
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Samantha_Smith
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Re: Migraine or cluster? (migraine-cluster syndrom
« Reply #5 on: Feb 18th, 2004, 8:56pm » |
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Fred
Thanks for posting. For 15 years I (only) had migraines and tension headaches but a few years ago I started to get cluster ha's also. When the cluster ha's first started they had many migraine-like symptoms but over a period of weeks I developed full blown classic cluster ha's with all the bells and whistles.At first didn't understand what was going on or what I had!!!The cluster's started out as episodic but became chronic within about 3 months. It is possible for the nature, severity and frequency of ha's to change over a period of time perhaps that's what's happening with you.
Have you ever tried prednisone to break one of the cycles? (That'sa typical cluster med.)
The pacing around and runny nose sound like cluster-like, but the other symptoms (vomiting, seeking quiet room, etc) sound migraine-like.Sometimes ha's don't fit into a square box that you can categorize and label. Everyone is different. I'd urge you to become as educated as possible about the different types of ha's and their treatments. This site is a great place to start....glad you found it.
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west17m
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Re: Migraine or cluster? (migraine-cluster syndrom
« Reply #6 on: Feb 18th, 2004, 11:08pm » |
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I'm a bit like Samantha. I had migraines for about four years during puberty so I feel like I have a pretty good grasp on the difference in the pains. I will say, for me, the "shadow" phase just before onset or remission of the cluster headache does modestly resemble the symptons of migraine.
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JohnM
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Re: Migraine or cluster? (migraine-cluster syndrom
« Reply #7 on: Feb 19th, 2004, 2:04am » |
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Fred
Do you get headaches episodes that last a few months and then a long period of remission of 6-18 months? This seems to be the "normal" episodic CH pattern for most.
I have vomited on several occasions during past CH attacks. Usually only a few times in a cycle though when I get hit really, really bad (kip 10+). Fortunately imigran inj now stops them getting that bad.
I also prefer a dark quiet place to suffer in silence and do not feel the urge to pace, I just want to lie down. I do fight the urge to bang my head though as I know it does not help.
John
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fred33
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Re: Migraine or cluster? (migraine-cluster syndrom
« Reply #8 on: Feb 19th, 2004, 3:42am » |
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Well, I might well have only "strange migraines". I didn't noticed any cycling in their pattern. If it's the case I would be lucky  as far as I can understand the killing aches of CH (note that severe migraine attacks always make me think I'll die; either because of an hemorragea or because of me jumping down the window).
Oral corticosteroids are contraindicated except local sprays (Flonase®) for my allergy/asthma, because of my severe bipolar illness  ; I become manic and agressive at once with systemic forms (so have an antipsychotic beside, please). So, I never tried Prednisolone.
I'm interested in the "shadow phase" that precede and terminates your cycles. As west17 said, I might suffer only from these permanent "shadow phases" and not actually from CH. But it never ends without continuous pizotifen (tried nifedipine without success). What does it feel like, exactly?
I have the feeling that you all are quite familiar with "bipolar drugs" that I tried either without success or with untolerable side effects (bipolar-cocktails including: Li+ max level, valproate, gabapentin, lamotrigine, carbamazepine, oxcarbazepine -this one worked for migraines but not for bipolar-, benzos...etc.). So I can understand that you detest these heavy treatments... as I detest them also, but need them  .
I think I just need reinsurance for my strange migraines (are they as strange as I am?). I'm only afraid of these two aching points behind my eye and on my skull. Thank you for your warm welcome.
Compassionately, fred33
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| « Last Edit: Feb 19th, 2004, 3:50am by fred33 » |
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fred33
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It is a migraine-cluster syndrome.
« Reply #9 on: Feb 27th, 2004, 4:25am » |
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Hello,
I've seen my neurosurgeon last week to make the point on my low back surgery in april. He's used to make 2 hours appointments, (I think insurances here don't pay for more than 45 min.! So thank you doctor for your free visit!  ) I spoke about my strange headaches that had changed since about 18 months into this ball behind my eye and the autonomic features associated -this light pain is constant but can become awfull after "triggers" I've not identified yet.
He told me that one of his chief doctors had made a thesis about CH, and here neurosurgeons have to study neurology for at least 4 years, so he knows what he speaks about. He asked me maybe a hundred of questions and and made me draw my pain on a paper with a face, I've had a light attack during the appointment with my eye/nostril swelling and tearing  : I really suffer light CH WITH severe migraine, to his advice. My neuro -albeit not as precise- was then right, it's a cluster-migraine syndrome.
Here's a good pdf about "Sonderform Cluster-Migräne" for german-speaking people:
http://www.dmkg.de/patient/cluster.pdf
With all I've seen on this board, I wanted to try my Relpax (that I use to take only for severe migraine) for a cluster attack I've had a few hours after cardio-training: it works wonderfully after 20-40 min., even for the residual "ball"! But insurances accept to pay for 16 pills a month (it's a really expensive med!), so I will wait a bit for my pizotifen to work better at 2.5mg and will try to drink 2 l of water before cardio-training, as advised by the neurosurgeon.
Sould I take Relpax with less reserve? Time will say...
Thank you for your posts and good luck with your pain.
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Pinkfloyd
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Re: Migraine or cluster? (migraine-cluster syndrom
« Reply #10 on: Feb 27th, 2004, 9:24pm » |
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Fred,
Last I heard, magic mushrooms were legal in some parts of Switzerland...
you may want to check this out...
www.clusterbusters.com
any questions, just ask..
PF
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