In March I starting experiencing pain in my right eye off and on for several weeks, I saw an optician who conducted extensive tests who told me I have perfect vision, and my eye was healthy. He wrote a letter to my doctor querying cluster headaches.

I was put on Rizatriptan, to no effect. Eventually wore off. Although I was in pain, it was manageable, although the medication had no effect.

Two weeks ago the same pain has started, stronger than the last time, although still manageable. I can't quite work out a pattern to it. Sometimes I have had it several times, although today it has been just once (so far).

I have seen an optician who again said my vision/eye was perfect. I have seen my doctor twice, this time I have been on Frovatriptan. Which wasn't working. and last week I was put on Rizatriptan again, combined with nepraxon. I am still getting the pain.

Doctors have called it trial and error.

I have to emphasise, that whilst it causes me pain, it is not excruciating, although it is effecting my everyday life.

My questions are, is this what happens at the very start of cluster headaches establishing itself in your life? Should I expect it to keep coming back and just getting worse and worse over the following months, years with the same gaps between.

Will the pain just keep to this level and I'll always be in this limbo?

Or something else altogether.

Any suggestions, help anything would be appreciated. I want to get to the bottom of this.

Also I get a blocked nose on one side.

I am also in the UK, and have spoken to Ouch UK, who said it sounded like shadowing

Can someone expand on this for me, Im not sure at all

Shadows are low level pain which may linger after a full Cluster attack.

Having tried two effect abortive meds for Cluster and receiving no benefit, it's time to by-pass your local doc and move to a specialty clinic for headaches. The OUCH group can advise you on how to make this move.

Possibility that you have a cluster-LIKE headache: one of several conditions which appear to be headache but which are not headache in their basic processes.

Print out the followin and ask your doc to consider the need for more diagnostic work.


Link to: cluster-LIKE headache.


Section, "Medications, Treatments, Therapies --> "Important Topics" --> "Cluster-LIKE headache"

chantelle,

What you are experiencing may or may not be CH and it is crucial you see a headache specialist.

If the two triptans you took was not in a quick-release form (either shots or dissoluble wafers) than it's no surprise they didn't help. If they were than it's a bit suspicious they didn't help, although everything is possible with CH.

You should consider trying more simple abortives, such as strong coffee or an energy drink, hot/cold pad, low dose melatonin etc. Also, make sure you sleep, eat and drink enough and on time, and do not consume alcohol until you have a definitive diagnosis. 

And even if it is CH, I strongly recommend taking blood tests. Ask specifically for vitamin D, calcium, zinc, HDL and hormone tests. Having the tendency to CH is probably genetic, but many times the onset of a first cycle is due to another problem, such as some kind of a deficiency that can be solved rather easily.

Good luck! 

I echo the need for a good doctor and DX.
In the mean time, read the oxygen info link to the left and follow the directions EXACTLY. This may be your quickest way to relief while the docs get it all worked out. It saves lives, and can't hurt if it turns out to be something else. Print it out and give it to your doctor. If he is hesitant, simply state "What do you want me to do, just suffer while you do more trial and error? This is what works best for the most people with CH, and it will not hurt me to try it."
Wishing you the best.

Thanks for such fantastic response's.

I'm abit at a loss as to what to do. I am going to ask for a referral to a neurologist I think. Maybe to just put my mind at rest tat I don't have some underlying condition.

Is it possible to have cluster headaches whilst not being in excruciating pain? Will the pain get worse as I get older if it is cluster headaches? (I'm 22)

Also, it cluster headaches more common in people who suffer migraines anyway? I never used to suffer with migraines, (as far as I know) although during this pain I have had a couple of actual migraines.

I took some Rizatriptan earlier, and the pain went within about an hour of it starting. This was around 4 hours ago, and it has come back again. Im not in agony, but I can't concentrate on anything when I do have it. I get a blocked nose on the same side of the pain, I can't follow conversation, I'm a university student, and I can't concentrate on my studies when I have it.

I'm just at a loss.

There is no real answer to the first question. Some ramp into CH, for me it was always the same from the first hit. The only difference is when I was young, I had a higher pain tolerance, I think. After finding oxygen, I simply did not have the patience to tolerate it, as I knew I could get rid of it. Another consideration, the meds you are taking, or maybe just something with your body chemistry, may be lessening the overall pain. Being in pain doesn't necessarily mean something is not making it more tollerable.
There is no connection to migraines, totally different animal. It does seem more common for us to get migraine like headaches in the in-betweens. My theory is all the stress and drugs from the CH.
Rizatriptan - takes an hour to work, lasts about three hours. Sounds like a typical reaction to the pill form. You need to understand the triptans are not a long term thing. They are used to abort a single attack, if they get you PF for a few hours, they have worked. The injections work in about 5-15 minutes, same duration of relief.
As for concentration and school... I managed to get through college with only oxygen. But then, once a hit was aborted (5-15 minutes), I would go hours before another would hit. I just had to keep an E tank in my car where I could quickly get to it.
Hope this helps.

Edit: The thing about oxygen and school... oxygen gives me clear headed relief, no lingering side effects to get in the way of performance. Sure I was running to the car a lot, but all those facts and figures crammed into my brain just fine and I got excellent grades.

dear chantelle - my advice: don't waste energy on being worried. A) because it doesn't help, and may even worsen your pain and B) because chances are you don't have a reason too.

Be assertive when you demand an urgent appointment with a HA specialist, "because I may have Cluster Headache, which is a sever disorder" etc., but you really don't need to get anxious about it. There's a very good chance you're NOT dying and that your headaches are treatable. Even if you suffer from CH - some people only get it once in a few years or even once in a lifetime.

There are at list a dozen relatively easy to treat kinds of headaches that mimic CH or have some similar signs. An expert would usually be able to diagnose and treat you pretty quickly either way. 

There is no relationship that I'm aware of between migrains and CH. I never suffered from any headache disorders prios to CH showing up in my late teens.

I echo the other sentiments above. It may very well be CH. CH in it's early stages, often doesn't present with the solid characteristics that are typically used for diagnosis. For the first 20 years I had CH, I NEVER had a wake up attack. In fact, if I felt an attack starting, and could get to sleep, I could sometimes dodge the attack altogether.

I mention all of that just to stress how critical it is to get a referral to a headache specialist neurologist. Headches are far too specialized of an area for most GP's to have any clue on. A specialist is your best bet at an accurate diagnosis and an effective treatment plan.

Wishing you speed on the diagnosis and some pain free time soon.

Joe

Thanks for everyone's responses. Yesterday I had two attacks, both in the late afternoon/evening. This morning I had one, taken some rizatriptan and I am pain free for now.

I am on the Rizatriptan wafers, can I rely on these to stop them altogether do you think?

chantelle wrote on Oct 14^th, 2012 at 6:10am:

I am on the Rizatriptan wafers, can I rely on these to stop them altogether do you think?

It's been helping to rid each individual one, that is its only job.  This is what you might continously expect:


chantelle wrote on Oct 13^th, 2012 at 5:28pm:

I took some Rizatriptan earlier, and the pain went within about an hour of it starting. This was around 4 hours ago, and it has come back again.

A headache specialist may be a good next step to confirm this first:


Quote:

I saw an optician who conducted extensive tests who told me I have perfect vision, and my eye was healthy. He wrote a letter to my doctor querying cluster headaches.

Please tell us where you live. Follow the next line to a message which explains why knowing your location and your medical history will help us to help you.

                       CLUSTER HEADACHE HELP AND SUPPORT › GETTING TO KNOW YA › NEWBIES, HELP US...HELP YOU

Guiseppi - what you said about your CH sounds REALLY familiar. I too had years of atypical hits before my first nocturnal attack, and some 25 years passed before I got the first textbook cycle. During the early years, falling asleep was my best med - it stopped the attack right away, even if I only slept for a few minutes.

The difference is that I also have migraines, and "transitional hits" with characteristics of both migraine and CH (such as KIP7+ pain AND nausea and photo-phobia). I guess like the rest of the population, some 15% of CH'ers (maybe a little more) also have migraines.