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        New Message Board Archives >> 2005 Cluster Headache Specific Posts >> Is this a Cluster Headache
        
(Message started by: carol2000 on Sep 6^th, 2005, 3:42pm)

Title: Is this a Cluster Headache
Post by carol2000 on Sep 6^th, 2005, 3:42pm

Hi,

18 months ago I started with intense pain behind my right eye which caused right sided headaches. Dr's told me it was tension...but offered no help. I lived off pain killers and anti inflammatory. Then my right eye started to become swollen and puffy below lower lid. The pain is constant I have just learned to live with it. I do not go out because I can't cope with lights, I have become very photo sensitive. I went to a neurologist 2 months ago and she said it sounds like cluster headache, but last Friday, I got an episode that lasted about 15 minutes, where the outter vision area was distorted and colourful shapes, mainly triangle and zig zag downward shapes. After this I got a right sided headache with extreme nausea. I called her back and only today she got back to me and she said, oh, like I said it is a migraine. I don't faeel safe becuase I battle to get hold of ehr when I need her, so maybe want to stick to my Dr who is always available. she said I must get imigran which I took 50 mg this morning, I had nausea and right side head again woke me up. I felt fine most of day, but now I am getting nausea again and can feel right side of head, behind eye starting up again. I am so tired of the pain, I just need to know what I am dealing with. My eye is puffy and the pain I control with pain killers and anti inflammatory, just to ease it, but it is always there, and why did the 50mg imigran not help. Did I need to take more. My Dr wants me to try Trepiline and Topamax. Does this sound like migraine or cluster headache. Thank you

Title: Re: Is this a Cluster Headache
Post by Chillrmn1 on Sep 6^th, 2005, 3:47pm

Carol,

Try taking the "Cluster Quiz" located at the left sidebar. This may help narrow it down for you. This quiz is a very good diagnostic tool.
Bob

Title: Re: Is this a Cluster Headache
Post by Karla on Sep 6^th, 2005, 4:01pm

Its a rough call. You may have both migraine hense the araura and cluster headaches hense the eye puffyness and running etc. Good news is time will help sort this out but in the meantime you use basically the same medicines to abort the ha. Imigran, zomig, maxalt, amerge, frova, migranol, midrin, etc. Imigrin comes in three forms shot, nasal spray and pill. The pill takes up to an hr to kick in. The nasal spray and shot work in under 10 min generally. Zomig also makes a nasal spray which should be fast acting as well. Also ask for oxygen see link to the left <== for oxygen info. That stuff saves and aborts many ha for many people with no side effects.

topamax is a good medicine to try and start with. If you get no relief ask to try verapamil(calan) and you may have to go to a high dose 900mg+. If that doesn't work lower the dose of verapamil and add about 900mg of lithium to it. It may help. This combo has offered a very high success rate. Proprananol, elevil, thorazine, etc. are mostly migraine meds but have had some limited sucess with treating clusters so... Just be a guineea pig and use a trial and errror attitude and eventually you will find something that works.

Title: Re: Is this a Cluster Headache
Post by carol2000 on Sep 6^th, 2005, 4:26pm

Thank you so much Karla for your wonderful information and help. I really appreciate it. Bob, thank you too, I will take that quiz right now :) I am so happy I found this website being with other people who actually understand what we go through....real comforting :)

Title: Re: Is this a Cluster Headache
Post by lionsound on Sep 6^th, 2005, 5:42pm

Hi Carol! :)

I have CH and Migraines (and ice pick HA too), it is totally possible you have more than one thing going on and sometimes they are very hard to sort out.

If you like your reguler doc that's wonderful, but I still would recommend you go to a knowledgeable neuro to help you sort it all out. Some meds prevent different kinds of HA better. Like Karla said...A lot of the ones to abort them are the same. If you are uneasy with the neuro you saw ...see another. Just because they say they know about Headaches or CH doesn't mean that they do. And you're right....t you want your docs to be reachable.

You deserve good care! :) read, read , read around this place and keep chatting with us so we can help you!

Be well and pain free,
lionsound

Title: Re: Is this a Cluster Headache
Post by Kim Y. on Sep 7^th, 2005, 6:58am

Hello Carol [smiley=hug.gif]

Sorry you have a reason to find us but glad you did. You have gotten a lot of good advise. Read Read Read....Welcome

PFDAN.....Kim

Title: Re: Is this a Cluster Headache
Post by arloweangel on Sep 16^th, 2005, 11:16pm

That sounds a lot like my husband's symptoms. He was diagnosed with CH last year.

Title: Re: Is this a Cluster Headache
Post by BMoneeTheMoneeMan on Sep 17^th, 2005, 8:42pm

Carol2000, i am not a doctor, but in my opinion it sounds more like migraines. Clusters typically dont come with nausea, and i have never heard of a CH sufferer having 'aura'. Aura is when your vision seems like tunnel vision, or you have trouble seeing at all. Aura is one of the symptoms of migraines.

Hope you get relief soon.
PF wishes
BMonee

Title: Re: Is this a Cluster Headache
Post by Ree on Sep 17^th, 2005, 9:06pm

on 09/17/05 at 20:42:25, BMoneeTheMoneeMan wrote:

I agree with you BMonee~ That is the exact way my Migraines present themeselves.... and the prism like aura is a type of Migraine also Ocipital Migraine... There are times when my eye also looks funny... My test to you is how long does the pain last? Difference being my 9-12 hour long painful, having to get out of the light time (Migraine)... compaired to 1-3 hour pacing watering eye, sinus congested,followed by dull painful shadow. (Cluster) LOL so Im not a doctor either... but I think you have Migraine there... not fun either... sorry ~~~ take care and Good luck ree

ps also I want to add you should find a neuro that will diagnos you the type of Migraine that I have can also cause stroke in some people so it would be a good idea to at least be aware and know the red flags..... ree
an interesting article to read http://www.news-medical.net/?id=6791

Title: Re: Is this a Cluster Headache
Post by unsolved1 on Sep 17^th, 2005, 9:50pm

Does not sound like clusters to me. The constant pain, nasuea, and the aura tells me it's not clusters.

Goodluck with finding some relief

PF Wishes
UNsolved

Title: Re: Is this a Cluster Headache
Post by Jonny on Sep 18^th, 2005, 1:17am

http://www.migraines.org/

Good luck to you!

Title: Re: Is this a Cluster Headache
Post by Jasmyn on Sep 18^th, 2005, 2:12am

Hi Carol, see you are from SA, where in SA do you live? I used to live there and now live in Mozambique.

Phone me if you like to talk. My number +258846694980

Because you say your pain is constant it does not sound like CH but go for a second opinion and do like the others say here do the cluster quiz.

Sorry for your pain and hope you find the answer soon.

Jas

Title: Re: Is this a Cluster Headache
Post by carol2000 on Sep 18^th, 2005, 8:28am

Thanks for all the help and advice here....wow :)
I have just been put on Treliline and Topamax by my Dr... the treliline knocked me, ;;D I guess I have to get used to it. My heart goes out to everyone here who has any form of headache....it's not funny living like that.

I have got so scared to even go out now, as I am getting them daily.

Try going up to someone in a shopping mall and explaining to them....... Hey! I see all different sparkling lights and weird patterns and I can't really see where I am going. My guess is they will run a mile..... ;;D leaving me trying to figure out where the door is alone.... and hoping I get home before the pain hits. Life just does not get better than that LOL

Thanks again for all your help..I really appreciate it.

Carol

Title: Re: Is this a Cluster Headache
Post by eyes_afire on Sep 18^th, 2005, 10:33am

Hi Carol,

Like Ree said, it sounds like you at least have a form of ocular migraine. Here's some info on it:

http://www.eyeguys.net/ocularmigraine.html

http://www.clevelandclinic.org/health/health-info/docs/3200/3266.asp?index=11253

--- Steve

Title: Re: Is this a Cluster Headache
Post by carol2000 on Sep 18^th, 2005, 5:26pm

Thank you for the 2 links Steve. The first one I went to is exactly how my aura looks.....identical :)

I am reading through it now.

Thanks again
Carol

Title: Re: Is this a Cluster Headache
Post by joey_the_grip on Sep 25^th, 2005, 9:58am

CH and migraine are often treated with the same meds. If you want a label call it a "Carol HA" until you have a need to distinguish. I've had episodic CH's for over 20 years. The more severe the pain the more associated symptoms I experience. I've had about a dozen 10's over the years. These cause me to vomit, I see bursts of light followed by tunnel vision and collapse. I realize most here do not think CH produces an aura but we are all individuals. I occasionally get migraine also, there is a difference, but I have little need to distinguish. They are both horrible.

Title: Re: Is this a Cluster Headache
Post by carol2000 on Sep 25^th, 2005, 1:34pm

Hi,

I am just resigning myself to the fact that I have this and have to get used to getting these headaches. ....intense pain, nausea, pain behind left eye..... not fair to us :)
My heart goes out to everyone who like me is a headache sufferer :(
I have learned now that at the first sign of the headache, I take migril tablets and pain killer. A few months ago, I had the same headache for weeks and weeks..... then I really knocked myself out with meds and broke the cycle.....