Cluster headache OR chronic paroxysmal hemicrania

[rachel07]

Hiya, i will cut a v.long story short! Firstly, i had terrible headache 2 yrs ago (may 2005). I basically had burning stabbing pain in my right eye and a dull boring ache between attacks. They were headache attacks that would happened several times a day but worse on a night and in the early morning which wake me up from a deep sleep. I went to my doctors, they didnt have a clue what was wrong and said that it was sinus headache related. So i had several Sinus X Rays which showed up nothing (thank goodness) and i was on antibiotics for almost entire yr but no change, i still kept getting these strange headache attacks and in between attacks i would get this boring dull ache in between my right eye and top of nose. Then my GP referred me to ENT. When i saw the ENT, he simply said this isnt ENT problem but a nerve ending problem and said that i needed MRI scan. The NHS waiting list for MRI scan was 4 month since i was in so much pain and i wanted to get to the bottom of this and i needed to return back to work i went private and paid for MRI scan. I had my MRI scan at cheltenham and a report on my MRI scan was sent back to my GP in Bristol. When i went back to my GP to get the results, my GP couldnt understand the scan or the report which a doctor did in Cheltenham so referred me back to ENT! At this point my headaches were getting better which i found even more strange so i waited for another ENT appointment. When i went in December 2005 to see the ENT, my headaches were gone which i found strange since i was only taking amitriptyline on a night but i didnt really care why they went as i was just so pleased to have my normal life back and no headaches. I saw a lady at the ENT, she said that it was neuralgia and to keep taking my amitriptyline so thats was it and what i did. Until, then in Nov 2006 and Feb 2007 the headaches returned so i went back to my GP & they increased my amitriptyline, headaches went away. However, they returned in June 2007 and since then i have had these headache attacks daily so back i went to my GP in June 2007. This is then when my new GP told me that i had cluster headaches and she read the whole report to me, i just didnt understand why i didnt get told this in 2005 or 2006. My question is how did this doctor is Cheltenham diagnosed Cluster headaches without seeing me or asking me questions but just by looking at my MRI scan? Since June 2007 i have been treated for cluster headaches (Oxygen, Sumatriptan nasal spray and amitriptyline) by my new GP. My new GP was getting concerned since she couldnt get me in cluster remission so referred me to neurologist. Therefore, i saw a neurologist oct 2007  and asked me several stuff etc. They are unable to look at my MRI scan which i had done in Cheltenham as for some reason my GP practice has lost it so i had another MRI scan and a CT scan done this week on the NHS. For some reason this neurologist cannot decide whether i have Cluster headache OR chronic paroxysmal hemicrania so has ordered me to have several blood tests, CT and MRI scans and other investigations etc. Im just waiting to get results. My question, is why does this neurologist think i have Cluster headache OR chronic paroxysmal hemicrania? The neurologist gave me some indomethacin to try- which work wonders! Within a few days i have no pain, no dullness, no attacks and i could even close my eyes and there wasnt a single no dull ache. The stuff i was taking for cluster headaches, never made me pain free unlike the drug indomethacin. HOWEVER, i started to vomit and had severe nausea (24 hr nausea) after the 5th day of taking this drug, so the neurologist took me off then and put me back on oxygen, nasal sprays & amitriptyline but this doesnt kill the pain unlike the indomethaci did. However, im not sure it was the indomethacin that made me sick and gave me 24 hr nausea as i think it that i come off my amitriptyline too quickly. Please can you help me and explain what is going on! Any advice/ info will be much appreciated. At the mo, im just waiting for my next appointment with the neurologist is less than 2 wks away but im in so much pain, im losing hope. MANY THANKS.

[Alec312]

Hi, I just wanted to say that I suffer quite similarly to yourself. For three years now I have suffered with a constant dull head pain behind my right eye and above my right ear. This often flares up into an attack of pain beyond imagination. I have been in A and E 3 times in the last 10 days with attacks. The treatment they give ranges from morphine to tramadol to high-flow oxygen (although clearly they can't give me such strong painkillers regularly). I take pregabalin daily and have almotriptan at the onset of an attack and tramadol when it worsens etc. etc. (don't want to bore you). I have tried about thirteen preventative medications and none have helped. It was only a few weeks ago in A and E that a doctor finally diagnosed chronic cluster headaches (or fittingly 'suicide headaches'). Like yourself I have had MRI scans and CT scans to no avail. Tommorrow, however, I have an appointment at the London Migraine Clinic. Google them and look at there web-site. I am hoping that they will be able to help me. One final thing, I know how much it hurts.

[LifesAHeadache]

Another excellent response - just wanted to thank you for answering questions.  You are one of the most knowledgable - I am not as well versed as you are but know enough to know good advice.  Again, well done.

Also, are you in the UK?  Why did it take four months to get an MRI?  The CD's are great but not all facilities gave them in 05.  Now they come with executable programs to pull  them up on your laptop in very user friendly form.

[jcverive]

Most likely the MRI showed nothing significant, so your diagnosis was essentially based on the fact that cluster headaches typically affect the eye, and can wake you from a deep sleep. Chronic paroxysmal hemicrania is a fancy, shorthand way of saying "ongoing acute attacks of pain in one half of the skull".

Since indomethacin and amitriptyline were effective in reducing or eliminating your pain, you are probably suffering from a neuropathic pain syndrome. Other preventive meds worth trying include Neurontin, Lyrica, Keppra, Cymbalta, Tegretol, Trileptal, and a host of others that a good neurologist or pain doctor can let you try.

[xavierR]

The moral of the story is to get a copy of any private scans on a CD which you can copy as many times as you like, so you can always keep a copy yourself. Cheltenham charge £22 for a CD but uk-radiology (http://www.uk-radiology.co.uk) in neighbouring Hereford give you the CD free and charge less for the scan too.
Cluster headaches can't be diagnosed on MRI. MRI is to exclude other causes of symptoms.