Hello everyone. My Name is Marc, and I recently stumbled across this site. I am 26 years old and I have been suffering from cluster headaches since about 2004. The first one I had was debilitating, it was horrible. I was just at the gym and on my way home and then it started, such a strange feeling, I started to drive home. The drive home was bad, the pain came on very slowly and luckily I got home just before it got bad. I collapsed on the floor in agony, my right eye had swollen over and so it begins....

I wont tell the whole story as everyone here knows how it goes, pain, embarrassment, unsureness, people thinking you have a strange migraine, (even though I am also a migraine sufferer and told them that the pain is totally different, stabbing instead of aching) but finally last year I was correctly diagnosed, as I came out of my last cycle.

The problem I now face is that the CH are changing. in previous cycles, although difficult to deal with, the CH's were at least dependable, I knew when they would come on and could prepare for them, but the last cycle and most definitely this one, have been been eratic. Previous cycles the headaches would come on at around 11:00am or 9:00pm, but my last cycle, they came on at sifferent times, mostly around 4-5PM, but some in the morning, some in the evening and some in the middle of the night, although 4-5 seems the most likely time, they were 50% or more random.

That was about 16 months ago and at the beginning of April, my cycle started again, but this time even more strange. Firstly since my current cycle started, the headaches have all been of very low severity, still debilitating of course, but I havnt had one really bad one (we all know the bad ones) secondly, there has been no time pattern. Thirdly I have had a lot of PFD, this is the most unusual thing, since during my previous cycles (usually lasting  around 8 weeks) it was unusual to get PFD's maybe 1 day per week might be without a CH. This week I have had maybe 2 days were I had a CH, same triggers, heat/exercise, but no where near as often as usual and I can comfortably exersize 3 times per week without the fear of a CH, and then when I do get one, it isnt too bad.

So basically im wondering if anyone else has noticed something similar? either the timing of the headaches, or the freqency or even the severity? what does it mean ect? Thanks in advance.

The great joy of Cluster is that it can be a crapshoot re. our experiences--timing, site of pain, intensity of symptoms, even response to our best meds.

There is almost no useful data to support the notion that these changes have any useful predictive value or implications.

The best single action you can take is to be working with a doc who has training/skill in an area of medicine which is far more complex than is recognized.
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LOCATING HEADACHE SPECIALIST

1. Search the OUCH site (button on left) for a list of recommended M.D.s.


2. Yellow Pages phone book: look for "Headache Clinics" in the M.D. section and look under "neurologist" where some docs will list speciality areas of practice.

3.  Call your hospital/medical center. They often have an office to assist in finding a physician. You may have to ask for the social worker/patient advocate.

4. START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE; On-line screen to find a physician.

5. START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE Look for "Physician Finder" search box. They will send a list of M.D.s for your state.I suggest using this source for several reasons: first, we have read several messages from people who, even seeing neurologists, are unhappy with the quality of care and ATTITUDES they have encountered; second, the clinical director of the Jefferson (Philadelphia) Headache Clinic said, in late 1999, that upwards of 40%+ of U.S. doctors have poor training in treating headache and/or hold attitudes about headache ("hysterical female disorder") which block them from sympathetic and effective work with the patient; third, it's necessary to find a doctor who has experience, skill, and a set of attitudes which give hope of success. This is the best method I know of to find such a physician.

6. START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE NEW certification program for "Headache Medicine" by the United Council for Neurologic Subspecialties, an independent, non-profit, professional medical organization.
        Since this is a new program, the initial listing is limited and so it should be checked each time you have an interest in locating a headache doctor.

You say you have been diagnosed, so I'm curious as to what kind of treatment you are currently undergoing. I'd advise you to look through this forum as there are tons of really knowledgeable folks who have a lot to offer. I'd also suggest you read up on o2 and the Vitamin D3 regimen as it seems to have helped quite a bit of people, including myself.

I've had some cycles where the headaches came almost always at the same time, and others where they came all at different times. Such is the nature of the game.

japanzaman wrote on Apr 23^rd, 2012 at 9:49am:

You say you have been diagnosed, so I'm curious as to what kind of treatment you are currently undergoing. I'd advise you to look through this forum as there are tons of really knowledgeable folks who have a lot to offer. I'd also suggest you read up on o2 and the Vitamin D3 regimen as it seems to have helped quite a bit of people, including myself. I've had some cycles where the headaches came almost always at the same time, and others where they came all at different times. Such is the nature of the game.

treatment was sumatriptan in tablet form (I never got oxygen because I was reffered to a different doctor at the end of the my last cycle, and only after the cycle was finished did the doctor diagnose cluster headaches). This cycle started at the beginning of April and I have been on holiday since then, and so I have no treatment right now. I get back home on sunday so I will arrange an appointment to see the doctor and get some treatment, I have never tried oxygen so hopefully it will help.

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

Do take a second and read this link, it'll give you the details to use 02 correctly. I abort in about 6-8 minutes, beats the old 90 minute rides! ;)

Joe

Triptans in tablet form are way to slow for CH relief.  If you are going to use a Triptan insist on injectables or at the least nasal spray. 

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE is my recommendation. 

Jerry

Quote:

Triptans in tablet form are way to slow for CH relief.  If you are going to use a Triptan insist on injectables or at the least nasal spray.  Jerry

Thanks, I noticed the sumatriptan tablets tended to work if I took them early enough, like when I first felt the pain, or even occasionally as a preventative measure if I had a conference at work or something, but in general, Id say they were hit or miss at best. The doctors prescribed them to me when they were not sure what I was getting because apparently they can be used to treat CH and regular migraines.

I was once given injectables but I wont be doing that again. I had a bad attack one day and decided to try the injection. The pain from the CH was so bad I could barely focus on what I was doing with the injection, I managed to do it, and as soon as I pressed the button, the shock made me pull away. most of the medication dripped down my leg, the CH didnt go away, I started to feel dizzy and sick because of the injection, and I ended up with a big fat sore bruise on my thigh for the next 3 days. Ill stick with the tablets and 02 as soon as I get back, but I didnt know about the nasal spray, I will ask my doc about that thanks.

On a happy note, I have been pain free since I signed up to the forum  :)

Let's see: your 16, just got your license, had an accident the first day drving on your own. Gave up driving as too dangerous.

Trying to be subtle <bg>!
1. Should take any abortive med at the first sign of an attack developing. The longer you delay, the less effective ANY med will be.

2. Blaming the med because your first injection wasn't done correctly is missing the target. If you are anxious about self-injection, get the doc's nurse to show you and monitor you doing it. The cost of one injection is cheap compared to denying yourself the most effective abortive we have. You have too many years living with Cluster to not get full benefit.

Bob Johnson wrote on Apr 24^th, 2012 at 3:43pm:

Let's see: your 16, just got your license, had an accident the first day drving on your own. Gave up driving as too dangerous. Trying to be subtle <bg>! 1. Should take any abortive med at the first sign of an attack developing. The longer you delay, the less effective ANY med will be. 2. Blaming the med because your first injection wasn't done correctly is missing the target. If you are anxious about self-injection, get the doc's nurse to show you and monitor you doing it. The cost of one injection is cheap compared to denying yourself the most effective abortive we have. You have too many years living with Cluster to not get full benefit.

I never blamed the med, I just said I wouldnt be trying it again any time soon, because I had a bad experience. If the day comes when the pain is so bad that none of the other medications work, Then I will indeed follow your advice and consult the doctor regarding the injections, having said that, it makes more sense for me to ask the doctor to train my wife, since in a heavy attack, the first thing I think about is NOT the correct procedure for injecting myself. Callico was nice enough to inform me of the nasal spray which I will mention to my doctor. Hopefully this and the oxygen will suffice.

Marc, you have hit on a very vital piece of your weaponry in the war against the beast: supporters, in this case, your wife. We talk about the importance of supporters but you've nailed it. When we're in pain, and the pain is ramping up, the last thing on our mind (what's left of rational thought) is how to do what we need to do, and do it properly. Way back in my early days I wouldn't even let my family see me during an attack. That's changed. Since then, they know what helps and what doesn't, and are quick to assist me in getting to my abortives, or applying them if needed. Do consider working with your wife from the lowest level of abortive (say Red Bull or Monster chugging) to O2 to pills or inejctions or nasal spray. And the spray does work generally, it's just a bit slower. In Bob's defense, and I don't think you were doing this based on your reply, don't take anything off the table. You might not get around to some of the preventatives and abortives but just having a list of things yet to try can be a soul saver when in crisis. God bless. lance

wimsey1 wrote on Apr 25^th, 2012 at 7:34am:

Marc, you have hit on a very vital piece of your weaponry in the war against the beast: supporters, in this case, your wife. We talk about the importance of supporters but you've nailed it. When we're in pain, and the pain is ramping up, the last thing on our mind (what's left of rational thought) is how to do what we need to do, and do it properly. Way back in my early days I wouldn't even let my family see me during an attack. That's changed. Since then, they know what helps and what doesn't, and are quick to assist me in getting to my abortives, or applying them if needed. Do consider working with your wife from the lowest level of abortive (say Red Bull or Monster chugging) to O2 to pills or inejctions or nasal spray. And the spray does work generally, it's just a bit slower. In Bob's defense, and I don't think you were doing this based on your reply, don't take anything off the table. You might not get around to some of the preventatives and abortives but just having a list of things yet to try can be a soul saver when in crisis. God bless. lance

Thanks Lance, I have learned a lot browsing the website, hopefully i will help in the long run.

On a separate note, I had a very strange one last night, it was while I was watching TV, the headache came on very slowly, and didnt get very bad at all, infact I was able to watch the whole program, the pain was almost non existant (but it was there) lasted about 20 mins and then went. This was possibly the mildest CH i have ever experienced. My eye still went slightly blood shot and I felt slight pressure in my face, but was really strange, I have never experienced such a mild one.

Could be your cycle is winding down; could also be what we have called shadows...a real but mild attack. If they persist, don't ignore them. Aborting shadows is a good idea, not an encouragement to the beast. blessings. lance

Every now and then I get an attack that sort of ramps up, then dies off before becoming really bad. I wouldn't read too much into that, however, as the next one is usually the real deal.

japanzaman wrote on Apr 26^th, 2012 at 9:52am:

Every now and then I get an attack that sort of ramps up, then dies off before becoming really bad. I wouldn't read too much into that, however, as the next one is usually the real deal.

Wish I had read that before I got half way through a bottle of beer for the alcohol test :(

I do think my cycle is winding down though, been really strange this time though. Oh well guess ill know sson enough  :-?