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Miss Diagnosed

(Member)
From: Myocum
2 total posts
Currently suffering :(
Well after years (approx a decade) of being treated as a chronic sinusitis sufferer I find out today from an ENT surgeon that my sinuses are fine and I am more than likely suffering from cluster headaches.
I have been reading information on the internet and yes I must say my symptoms match up to those given in regards to this diagnosis. Extreme eye pain, always on my left side, can last for days at a time and seem to come in groups for a period then go. I also get sore teeth and a very painful neck on the affected side, does anyone else experience this? And what are your ways of treating the problem? These headaches cause me to have numerous days off work which irritates not only my boss but myself and the nausea I experience is dreadful also.
Any information would be greatly appreciated.
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Roger

(Admin/Moderator)
From: Burpengary
258 total posts
Not currently suffering :D
Hi,
Welcome to the site!

You might not be getting Cluster Headaches. Nausea is rarely a symptom, and I've never heard of sore teeth being a symptom either..

Does the eye water and the nose run only on the side that the pain is?
Does it come at the same time every day for weeks on end and then vanish for weeks or months at a time?

How long does the pain last each time you get it?

I would suggest going to a neurologist to get a proper diagnosis. Ask her/him if it could be Cluster headaches, as there might be something else going on that needs to be diagnosed professionally..
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Miss Diagnosed

(Member)
From: Myocum
2 total posts
Currently suffering :(
Hi, thanks for the reply. Well i have to answer no to a few of those questions you've asked. I get the severe eye pain, which I also feel in my nose, but I tend to wake up with it and it can last anywhere from 1 day to 3 or longer. My neck always hurts usually as much as the headache and I nearly always get the nausea, so I may take your advice and see a neurologist. I would love to finally get a correct diagnosis and start dealing with this problem. It really affects my working life and at times relationships.
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Roger

(Admin/Moderator)
From: Burpengary
258 total posts
Not currently suffering :D
Yes, definitely get it looked at.
If you had the pain of a cluster headache for 1-3 days without a break, well, you'd end up in hospital after 4 or 5 hours of it, because I doubt you be able to tolerate any more than that without some medical intervention.
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Henry

(Member)
From: Sydney
4 total posts
Currently suffering :(
Hi Miss Diagnosed,

Thank-you for sharing,my name is Henry and i totally relate.. as i was finally diagnosed with Chronic "'Miganous Niralga"' by a leading Sydney neurologist (or more simply put CH) approx 6 years ago.. before that i too thought it was a sinus problem and actually had my sinuses cut out on my cluster side(right side) and to my dismay my CH were back the day i was relapsed from surgery

I affirm all your symptoms to be true and correct to be here you are one of us.. i too have pain -like a skewer/hot poking behind your eye,feels like sinus pain but is in the brain, and goes all way down my right side,neck and shoulders, my right sinuses feel like they are swollen.. when they are not,my teeth always go numb on the right side,it is in the brain pain behind the eye that is indescribable,sometimes my right eye is too painful to touch..The headache is constant like a cyclone that is always there(accept in the lulls) and then comes the big wind gusts that knock me over for a few hours ..then it drops back to just the cyclone and this can go for days..it is called chronic...there is perhaps a few days relief over the period of a month.I have to keep moving to avoid the pain..can sit still

there are people on this site that will tell you that this is not possible nobody has cluster headaches like these.. apparently their version of cluster headaches is the correct one ..that is their story and true for them... mine is like yours, mine is the story of chronic sufferer and i share to your symptoms

I often feel nausea in the midst of a cycle..when i was younger i would throw up mid headache,this happens to me less as i get older

I have tried over 20+ supposed medications and their side effects from desril to lithium to oxygen etc etc...unfortunately Nothing worked .....
Most times.. i bear it till it gets too bad then retreat to the bedroom top pace and groan ,i take 2-4 panedine forte to dull the impact..and if that doesnt wotk take 3-4 more yet i am acutely aware of the consequences of opiates and their pitfalls...it seem panedine is the lesser evil for me today
My wife has my diet regime for me,and i am also going to stop using my Bluetooth and try to be away from radio waves (this is just an experiment as my CH have been getting worse since using my Bluetooth but who knows if this is the culprit.. possibly not helpful)

I am acutely aware of smells.. and if a solvent is within 500 meters i can smell and can be triggered,i cannot sit on a perfumed bus or enclosed spaces ,my wife cannot use standard cleaning fluids as they are a triggers,hot days full of physical work are triggers, bed to be present for my family sometimes regardless of how i am feeling

i don't(cant) smoke, don't(cant) drink alcohol, coffee is a huge trigger for me haven't had coffee for years,chocolate is a trigger,but relapse in frequently to my demise,hams and salamis are lethal for me and so goes the list..
The change of seasons is the worst trigger.. knocks me flat,or a big low pressure system
Or recently it also has been viruses i pick form the kids(i have a daughter 6 and boy 4)this year has been a killer as each moth presents a new virus and a new onset of CH
I have no solutions for you to say keep coming back here, as it is wonderful not to feel alone, to be able to have a voice and most of all read and listen and relate,it has truly helped me to read others stories,although i should share more often..,just reading has helped me immensely
I have suffered these symptoms for over 40 years now and unfortunately for me it is getting worse i have little to cling onto but when i read your story tonight i felt i was not alone again. Thank you and please stick around

P.S be aware that most G.Ps basically know nothing of this and if you ask them they will probably google it in their surgery to find out what you are talking about...probaly refer you to a neorolgist..keep your chin up and know you are not alone
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