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Cluster Headache Help and Support >> Getting to Know Ya >> Hello http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1343823139 Message started by Kasmorris on Aug 1st, 2012 at 8:12am |
Title: Hello Post by Kasmorris on Aug 1st, 2012 at 8:12am
Hi,
My name is Kevin and I am a 56-year-old male living in the South of England who has been suffering from CHs for 14 years. It took five years of bouts and visiting several general practitioners, two neurologists and enduring several CAT scans before I was told mine was a ‘classic case of CH’. (How long it would have taken if I had not had the classic unilateral pains through my right eye, lacrimation, redness of that eye, rhinorrhea from the right nostril, etc I dread to think!) In general, all of my bouts last between 11 and 12 weeks with up to 6 headaches each day which, when untreated, have lasted for up to three hours at a time but never less than one hour. (Worst day was six attacks and around three hours for each.) If I’m lucky then I have one bout a year, leaving me nine months pain free. If I’m unlucky then I get two bouts with just six months of normal life. As with the findings of the US CH survey, posted here, my bouts tend to occur around the months when the clocks change. And the most intense attacks come at around one-thirty in the morning. (Of course, this could be because I’m not awake to feel the aura and my body doesn’t hear the monster coming to shove a sharp object through my eye.) My older brother has suffered from migraine ever since he was a child and found that caffeine, stress and tiredness have been triggers for his headaches. My triggers seem to be the usual for CHs: air flights, alcohol, pungent perfumes, etc. As for treatments that I have tried, you name it I’ve been there from chiropractors to acupuncturists, to hydrotherapy, faith-healing and all that modern medicine has to offer. I find that about a week before a bout begins I start to get agitated (or rather, my wife noticed this). It’s a chicken and egg situation, does my body recognise that the beast is on its way or does the fact that I get grumpy and short-tempered bring on a bout? I have tried yoga and used relaxation techniques when my wife points out one of my agitated states, but I’ve found that the bouts still arrive. (Maybe I’m just not using yoga properly? Don’t know.) As far as coping with CHs: my method is to use nortriptyline and pizotifen each evening and then take two Co-codamol/Zapain every four hours during the day (8AM, Noon, etc) and alternate them with two aspirin (10AM, 2PM etc). I also have oxygen at home that I use for night attacks and Imigran, which I try use as rarely as possible. (That’s because I noticed it stopped the current attack within a few minutes, but the next attack was more severe and even more persistent.) The other method I use is the water treatment – thank you Margi and Mike!!! That certainly helps when I am at my drugs limit, as does vigorous exercise. (Working in a tall building means that I can trot down eight flights of stairs and then power-walk up them again two at a time, which means very deep breathing and a high heart rate as that can often bring an attack to a premature end.) The only other useful thing I can add is that I have found the Hay Diet to be beneficial, reducing both the frequency and the severity of attacks in a bout. A very quick summary of the Hay Diet is to avoid refined sugar and processed food and NEVER mix protein and carbohydrates in the same meal. A book of the diet was lent to me by my brother who found that sticking to the diet meant his migraines disappeared completely and it has certainly helped me, too. (Amazon sell the book for £4.99) Sorry this is so long, but once I started it all kind of came spilling out. Thanks for reading. PS. I don’t know if anyone’s pointed it out, but when the US research mentions that 55% of respondents had considered suicide and 2% had attempted it… one wonders how many people with CHs have succeeded and are therefore unavailable to respond to surveys? |
Title: Re: Hello Post by wimsey1 on Aug 1st, 2012 at 9:16am
Dittos what Bob said. Here's a summary of our collected wisdom, realizing that all of us have tried all of the non-usual means you describe to no effect:
1. Find a good headache specialist-this is imperative, and not clear to me from your post. 2. Start a prednisone taper (starting around 80mg/day) 3. Start a preventative working up to a high enough dose to be effective in treating CHs, like 240mg/day verapamil increasing as directed up to 960mg/day. Other preventatives include Topamax, carbomazapine, oxycarbomazapine, and more. Pay attention to the doses-often we hear I tried that but the dose was too low to be effective. 4. Get an effective oxygen setup: a nonrebreather mask and a regulator that will go up to 25lpm along with a 3 liter bag. See optimask. 5. Get effective abortives, like imitrex injectables-pills are too slow-or Migranal nasal spray 6. Keep a log or journal of your attacks, and learn to use the KIP scale at left It's a long list, but it returns to you the power needed to manage the beast. Good luck and God bless. lance |
Title: Re: Hello Post by vietvet2tours on Aug 1st, 2012 at 9:33am wimsey1 wrote on Aug 1st, 2012 at 9:16am:
That one is important. Potter |
Title: Re: Hello Post by Kasmorris on Aug 1st, 2012 at 9:45am
Thanks for the replies and the info guys.
My current oxygen supplier issues tanks with a regulator built in - which only goes up to 15lpm. Also, do you know anyone who rents out portable oxygen (if there is such a thing)? |
Title: Re: Hello Post by Bob Johnson on Aug 1st, 2012 at 12:45pm
We live in different worlds; we still struggle to speak the same language!
Best if you direct questions about sources of equipment, etc. to your support group. |
Title: Re: Hello Post by wimsey1 on Aug 2nd, 2012 at 7:46am
You know, I just read your post again, and I have to say, my goodness you're all over the place. From yoga to diets. We understand the desperation to find something, anything that will work, but...you need a better plan along the lines of what I posted above. You do know the current wisdom on CHs is that it is a primary headache (not caused by secondary issues) and probably the result of a deformed hypothalmus? Triggers are not causes, and most of what you list won't help in the least. Or rather it hasn't helpd the majority of us who are here. As for "portable" tanks, Bob is right. Start with whomever gives you O2 now and go from there. God bless. lance
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Title: Re: Hello Post by Kasmorris on Aug 3rd, 2012 at 9:28am
Hi Lance,
Yup I guess I am all over the place, but as yet there is no 100% guarantee that all CHs are caused by a deformed hypothalamus. (Why would they suddenly kick in at random periods of different people's lives and not happen from birth?) Of course most of the evidence points at the hypothalamus what with the clockwork timings of the attacks that incriminate it, but I have a lot of problems with my right shoulder and, what a specialist called, a 'snapping scapula' that started on the very same day that I experienced my first CH. Yes that could be completely coincidental but if I overuse my right arm or tighten/un-tighten a screw too forcefully then I bring on a bout of clusters. That is the main reason why I have concentrated a lot of time and effort in exploring other areas of medicine which concentrate on my shoulder - especially the rotator cuff. But thanks Lance I'll contact my 02 supplier. Stay well, Kevin |
Title: Re: Hello Post by Kasmorris on Aug 5th, 2012 at 5:31am
Hi Batch,
Thank you - some really interesting stuff there. I've tried the breathing technique and it helped a lot. Luckily I know a nurse who, when I got the oxygen, gave me a non-rebreathing mask so that helped. I shall be starting the anti-inflammatory regimen tomorrow, although with my own research I have already been taking the required Omega -3 fish oil for some time and have been using magnesium oil on my skin (which apparently absorbs more magnesium than taking tablets). However, I will switch it all over to the recommended doses on the regimen to give it the best chance. Thanks again, Stay well. Kevin |
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