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Melby

(Member)
From: South Penrith
2 total posts
Currently suffering :(
Hi there, I'm Melanie, I'm 39 and I live in Sydney

After 2 months of pain and being angry at my neurologist, I was told by another doctor today that I could have cluster headaches. What to do? I know, I'll find a chat room! So here I am.

My headaches don't really fit the "cluster headache" bill entirely, but they are a misfit for everything else too.

I'll keep it brief (unusual for me!)

* Headaches started early November, out of the blue.
*The first one was really intense stabbing pain over my right eye which came on suddenly, then disappeared about an hour later, just as quickly
* The next day, I had about 5 attacks - coming and going suddenly, about 45 min to an hour. They were different this time - pain above the eye still, but more consistently at the back of my head. Right side at first, but now just as much the left or both at once.
*The doctor said it could be migraines, and gave me elitriptan to try - it did nothing.
* He suggested occipital neuralgia and said to try physio - if anything, that made it worse.
* Panadeine forte - nothing
* Tramadol gave me some relief.
*The neuro (who I am seeing about something else) said it was migraines - even though I have none of the nausea, light/sound sensitivity blah blah blah. He put me on propranolol
*The pattern continued, but finally after about 7 weeks, I had my first day without painkillers.
* Cool - the neuro was right, and the propranolol was working.... Until.....
*After 3 weeks, they suddenly came back.



I never bought the migraine thing anyway, I could find nothing anywhere to say you could get migraines 4-6 times a day, every day, for nearly 2 months. So when this other doctor said it was maybe CH, off I went to google....

Some of it fits, and it certainly fits better than anything else I've come across. But:

* The pain has only ever once woken me up at night
* It only gets to about a 5 or 6 on the "kip" scale
* It's often bilateral at the back of the head. (But the sinus-type pain and the pain over my eye is always the right side)
* I have never had that "hot poker" feeling in my eye. The pain is around my eye, not in it.
* I don't get a droopy eye - or not that I or anyone else has noticed!



So I'm really not sure. I'd love to get any opinions or experiences of CH that don't quite fit the bill?

I should also add that I had a neck X-ray and a contrast CT scan after the headaches started. There was nothing unusual there. I had an MRI in June after my vision started going weird, and it turned out I had Optic Neuritis, which has a very high association with multiple sclerosis. Hence the neurologist.

I'm seeing my own doctor again on Tuesday, and I'm going to ask for a referral to a different neurologist to get a second opinion.
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Dusker

(Member)
From:
769 total posts
Currently suffering :(
Hi Melanie and welcome
I was in the middle of writing to you and lost my post!!
Was going back and forwards between screens trying to be smart.
The main gist is this--seeing another neurologist for a second opinion is the best decision you have made.
Whether you fit the picture of CH or not is irrelevant. Suggest if you have not already had a good read of the information on the left do so before you see him/her. Also read about Prof Goadsby--there is a link to him on the front page where Roger is "talking" to you. Familiarize yourself with some of the CH jargon.
Whilst waiting to see another neurologist if you have not already done so, start keeping a good non emotive head ache/pain record. Date, time of day, what doing, any catalyst (eg what eating) score, medication, how long, etc etc. Keep it simple. Preferably a chart style. Something the Dr can see in one look. They say a picture says a thousand words; paint a picture for the neuro. Mine was blown away!
What are you currently taking for pain now.
Suggest you try oxygen to see what effect it has on the pain.
Melanie, whatever the pain is caused by--needs to be investigated--you need to be assured that there is nothing "nasty" causing it. (The greatest relief I had was to find that they could find nothing wrong! There were no lumps or bumps in side of me that should not be there! I had no life threatening illness--they had proved that. I did not have any sinister disease or polyneuropathy. Sure I had a wonky neck, I have had neurosurgery in the past, but I could get on with living--but I did need help in managing the headaches and pain.) Help I got, help you need.
I note you had optic neuritis--has that resolved? And suggested occipital neuralgia and physio. Again, a very clear description of your pain and headache record may help your new neuro. Explain what the pain is, where it is, duration etc.
Key message--be proactive (which I think you are already) get to that new neuro, clear picture of your current situation--with a where to from here approach.
Good luck and keep us posted.
Heather
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Ben

(Member)
From:
327 total posts
Currently suffering :(
Hi Melanie,
One important thing to remember with CH is that your body can't read text books. You may fit several criteria of CH whilst others are absent. No two individual cases seem to be alike. Research on the internet will only get you so far. There are no confirmatory tests for Cluster Headache. We cannot yet see, measure or quantify a cluster headache.
It is not a text book disease and may have many variations in presentation.

In 30 years of CH I have never had a droopy eye either, but I get an "aura", an anomaly almost exclusively associated with Migraine alone. So I don't exactly fit the criteria either. Your headaches may not have yet reached the level of intensity that denotes the "Hot poker in the eye" type feeling. Let's hope they don't.

In my experience, I have had nearly all of the text book presentations at one time or another, sometimes described as "Classic text book CH" right through to vague interpretations of Migraine or other organic headaches. My headaches constantly change and evolve their patterns, triggers, severity, duration and reponsiveness to pharmaceuticals. My many varied diagnoses and treatment regimes over the years reflect this.

To me it looks like you may unfortunately have CH. But you need a specialist diagnosis. GPs are GENERAL practitioners and despite their best intentions they are not specifically trained to identify and treat CH. Upon expressing my frustration with GPs, on one occasion a specialist once put it to me that a GP SHOULD NOT have specialised knowledge of CH or any other rare condition for that matter.

In defence of GPs, referral systems are put in place to get you (the patient) in front of a specialist who is extensively trained to deal with specific areas of medicine. A GP would be neglecting the very nature of General Practice itself if they had their head inside every medical text book, indulging in educating themselves in every new specialist area. Their general patients would suffer for it. So would their general practice.
That's why we have referrals and specialists.

I hope you have had some basic tests to rule out any other possible causes.
Your Doctor should take basic precautions and send you for a CT scan of your head to first rule in or out any anatomical anamolies like a tumor or aneurism.
Pathology tests can help to rule out some other possible causes, like organic types of headache or meningitis etc.

I don't like to speculate. My advice would be to seek referral into a Hospital system, perhaps to a Neurologist or a Pain Management Unit. Here you will find the experienced specialist care you may need.
If things get real bad, you can jump the waiting list by presenting at Accident and Emergency in a public hospital. You should get access to a Neurologist or other specialist care within 12-24 hours if you are patient and persistent.

Remember - I am not a Doctor, seek medical advice!!!!

I hope I have helped.

Cheers, Ben.
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Melby

(Member)
From: South Penrith
2 total posts
Currently suffering :(
Thank you Ben, and also Heather, for your replies.

I just came out of what was probably my worst attack ever. It lasted 2 hours. I took 2 mersyndol forte and a bit later, 2 neurofen and they did nothing at all - which I knew they wouldn't, tried it all before - but I had to do something. In the end, I put music on as loud as I could, and danced and sang.... stupid, I know, but it was a distraction that I knew would hold my attention. My poor neighbours! At one stage, I even put the vacuum cleaner on as well to try and mask the sound of my horrible singing!

This one was all in the back of my skull and into my neck, on both sides. But I always seem to get stabbing pains around my right eye and sinus-type pain that starts on the right but often goes to the left too, a while before the attack. it's bearable, but within a couple of hours, the headache is there. My attacks never come during the night (except once), but I had been napping when it hit this afternoon.

It makes me feel crazy that I'm sitting here feeling no pain at all. Not that I'm complaining, but it makes me wonder if it ever happened at all - not literally, because I know it did, but to think I went from all to nothing.

I saw the GP during the week, and he strongly suggested I stick with the neuro I have, at least for the next visit (which is Tuesday). Now that I have a diagnostic suggestion to put to him, I'll give it a go. When I last saw him, I hadn't been on any beta blockers, and didn't have the knowledge that the cycle would pass and then come back again after a few weeks, exactly the same sort of thing, indicating that the beta blockers didn't work to get rid of what he thought were migraines.

Heather, yes my optic neuritis has resolved - my vision is still slightly blurry on the right side (the affected eye) and the colours still slightly washed out, but after nearly 8 months since it happened, that is probably the best that I will ever get to.

I had an MRI when the Optic Neuritis struck, which showed only the lesion that caused it, but also slight prominence of the ventricles and subarachnoid spaces (borderline atrophy). I don't know if that means anything to you guys, but it could be significant in the potential diagnosis of Multiple Sclerosis. I had a CT scan and neck xray after the first cycle in November, and there was nothing unusual in those. I tell you, I would absolutely be crxxxing myself if I hadn't already been in the clear there.

Oh and I was in the middle of an attack when I saw my GP, he tried oxygen but only (I think) 5-6L/hr (??) and with a regular mask, so I wasn't surprised when it didn't do anything.

I'm stuffed after the mersyndol (and probably the dancing too.....) so I'm going to go have another nap.

Thank you again for your responses. And, if you are still reading, for hearing me out


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Dusker

(Member)
From:
769 total posts
Currently suffering :(
Hello Melanie
Of course still reading!
Certainly the rate of Oxygen at the low rate would not have helped.
I hope you get some rest.
Understand why GP says to stay with same neuro but remember if not getting anywhere is still up to you to move on. Ben certainly has a lot of wisdom to add to your circumstances.
I am pleased that you are seeing your neuro on Tuesday.
In the meantime will be thinking of you.
I also try ice packs at various times, sometimes they help, sometimes they dont. Sometimes they help at different times.
Just know we are here for you.
Cheers
Heather
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Ben

(Member)
From:
327 total posts
Currently suffering :(
Melainie,
Something my Headache specialist and I strongly agree on. 900mg of "Aspro Clear" at the onset of an attack can be very effective. It must be a SOLUBLE ASPIRIN (as in fizzing dissolvable in water, to create a SOLUTION not a SUSPENSION as some other forms of non-soluble Aspirin do) - I suggest Aspro Clear from the supermarket, take 3 dissolved in a half a glass of water as soon as you feel an attack coming on. The sooner the better.

I have all the opiods you can get and the triptans, including Imigran imjections.
Imigran injection always works for me, but I will always go for the aspirin first - it is cheaper, easily obtainable, less damaging in the long term and can be as effective as triptans depending on the strength of the attack.
I have been using it for 30 years without a problem. I find it far more effective as an abortive medication than any other over the counter or opiod medication.

Aspro Clear is still one of the most effective treatment options available to me.
It is too often overlooked by GPs and Neurologists. I think it is dismissed as a weak or passive medication, because it is available on the shelf in any supermarket. The Doctors can't rule it out and say it doesn't work, because they don't fully understand the mechanisms behind Cluster Headache yet.

No-one fully understands how or why Cluster Headaches start. There have been some observations made about the pyhsiological changes that take place at the onset of an attack.

During discussions with my specialist I gained a limited understanding of some of the things going on in the brain during an attack. My limited understanding from my discussions is that there is a cone shaped piece of bone behind the eyeball. It has a hole in the centre through which your optic nerve runs. Apparently, usings scans and measurements, doctors were able to make observations along the lines that blood flow enters this area between the eyeball and the cone shaped bone and remains trapped there. More blood continues to enter the space between the cone shaped bone and the eyeball, but does not adequately flow out from this space, building up pressure. From my understanding, increased blood pressure around the eyeball results in the distention of tissues around the brain, pressure on nerves and subsequent head pain.

No-one can say for sure why this process happens and no-one can yet offer an adequate solution.
The blood thinning action and quick delivery of 900mg of Aspirin MAY have some beneficial effects in getting this blood pressure build up to drain away from behind the eyeball. It doesn't always work.

Be careful using Aspirin, it is contraindicated with many other drugs. There are many other heart, blood pressure, NSAIDs (Nurofen, Voltaren etc.), Benzodiazipines and other medications that conflict with the use of Aspirin. Make sure you do your research in relation to contraindications with drugs you may already be using. Long term use of high concentrations of Aspirin can cause gastrointestinal irritation or bleeding.

Consult with your GP and specialist on the use of Aspirin. Please, don't let them be dismissive of the drug. It can be very effective and is almost always overlooked as a CH treatment option. The worst that can happen is that you try it and it does not work.

If you are truly suffering bad CH then I suspect you are willing to try anything - most CH sufferers will. Give "Aspro Clear" 900mg a go, you never know it might help.

Remember, seek advice before trying it, I am not a Doctor!

Cheers, Ben.
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Dusker

(Member)
From:
769 total posts
Currently suffering :(
Hi Ben and Melanie
Sorry been "off the air" for a few days with another medical problem.
Interesting re the aspirin. Not for me I am afraid; but would encourage any CH sufferer to try anything that is within their medical capability that could help them.
That was indeed interesting reading Ben!
When my CHs are in full bloom as I call them; the upper and lower branches of my trigeminal nerve fire! The pain in my jaw is so intense I need no map to identify the nerve path way. My neuro was astounded. The pain above my eye and radiating into my forehead and to my scalp is what really gets me head banging! Surprisingly though the mid one actually around my eye remains the least effected for which I am totally and remain thankfully great full. Everything else can be a 9-10 whilst that branch can be a 7-8, amazing isnt it.
(I can also get headaches caused by postural/neck problems and the pain is very similar in my forehead, but extends across both eyes. The physio can actually bring the pain on by manipulation. My neck will be stiff during these periods, whereas when in CH attacks neck is not stiff.) just threw that in for interest.
For all my headaches, normal pain relief medication--including opiates--have no effect. Drowsiness which does not really help me as I fight it. Imigran remained my saviour during my attacks. I still take for other headaches. I continue on Verapamil and Topomax despite the side effects. I am hoping to reduce Topomax slowly. And I am hoping that the CHs stay away and allow me to live a normal life. If and when they do--well, to the battle again with vim and vigor I will go! With a lot more information and support that I did before!
So take heart Melanie, keep working at it, stay on the forum, keep your ears open and most of all your mind open.
Cheers
HeatherThis post was edited on 04/02/2011 at 2:52 pm
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