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Title: Neil's Handy guide to his CH experience Post by Neil83 on Aug 9th, 2006, 9:38am So I thought I would start a place where I could share previous experience and current trials. You may have to be patient with me as I can forget things from time to time and at a later stage may go back and add something (hey am a dumbass :D) Heres the vital information about the history of me any headaches. Age: 22 Height: 6' 1" Weight: 14st Medical history: No major problems, family heart problems, very few sick days fro school and college. Started suffering: Winter 2003 Trauma: Motorbike accident in April 2003, which caused back and leg problems There is no real pattern to my headaches I get them all year round ranging from a few random weeks of nothing then a few months of headaches. We (me and my family) have been investigating CH's after the doctor diagnosed me with them and we have been trying to find causes and cures, so far we have found out the following, (please remember this works for me, however it is not 100% with myself and my not work at all for anybody else, but if you are lost you can try the following) Causes Diet is vital - We found out there are good foods and bad food, main due to fat and carbohydrates. Good foods: Pasta, Bread and Cereals. Vegetables. Some fruits (oranges and strawberries are great) There are some snack food that is good for you Walkers new (sunseed oil) crisps are ok to eat. Big tip is Organic food, Tesco have a huge range of great organic food. Green and Blacks chocolate (if you want to snack) Holland and Barretts (or the American equivalant), have some great food such as Japanese rice crackers and Panda Licorice they are great for those that want to enjoy a variety of food. Other foods are still under investigation. Bad Food Chocolate Crisps Sweets Basically any food with too much fat, carbohydrates, sugars or chemicals in it Bananas are bad for me too Other causes: Heat - to cure sit near a fan or in the shade Too much light - Cure with shadow Lighting - Make sure lightbulbs are 40Watt and for lightin fittings with more than one bulb, get very low wattage (don't include energy savings bulbs cos they use less watts but actually give out the same so if it says 12w it is actually about a 60w) Sitting too close or for too long near computers or TV's - cured but either not sitting too close or for too long, or you can try turning not just the brightness down, but also the colour and sharpness too. Thinking - Yes you read right, thinking too much or trying to solve complex problems is a cause. The best thing to do it to solve things but dont try so hard, cos you will get there in the end (simple things such as use a calculator rather than trying to do sums in your head will prolong pain) Polution - Air polution is a big pain in the ****, the problem is you don't know it is there, you have no way of working out what is a nice level and there is ery little you can do. If you are driving, put the fans or AC on rather than opening your window (unless it is a very hot day) Just a few other tips I have discovered that help me: Try to arrange your bed room so that you bed will not have the sun shining on it, when the curtainsa are open, as this is your haven and sould be kept cool, also if the sun shines through your curtains and onto your bed while the sun is rising, it wont be good for you. Fans and air conditioning are great and you should place them where you are most of the, for me I have one on my desk in my study, it blows most of the time to control the air flow and temperature Just to get back to a diet, you should aim to wake up at the same time everyday even if its 11am or 1pm make sure you dont change your pattern too much, along with this if you aim to eat food at the same time for example (breakfats at 10am, lunch at 2pm, dinner at 7pm) there is room for change with food, but if you are going to be eating dinner later, just have a snack at 7 (things like japanese rick crackers, panda licorice, walkers crisps, fruit are good for snacks) and finally Alcohol, the big question should you shouldn't you. I say yes with a but. Take note of the day and the surroundings, if its a hot day dont even risk it, if you are having a cycle don't bother. If you are having an ok time, taking your meds or whatever, had a good diet and everything else is fine, then why not have a few, but be sensible. Oh yes as a very very final thought and thanks for bearing with me so far. WATER - is brilliant, avoid too much tea and coffee (by the way tea contains more caffine than coffee and so is worse for you) You may want to by a range of products to dilute water, cos it get very annoying after a while drinking nothing but water Anyway if you are reading this part it either means you have skipped the good stuff if so go back you naughty scamp or it means you have read it all, if you have WOW! you deserve a medal Thank for your patients, more too come soon (Oh no I here you cry) Neil |
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Title: Re: Neil's Handy guide to his CH experience Post by seasonalboomer on Aug 9th, 2006, 10:14am Neil, That's a lotta info. I'm glad you seem to be finding all of these patterns for yourself, but many of your assertions are counter to what most Clusterheads consider commonly accepted information. It may be worth reading a bit more around the site. Much of what you are describing here with regard to diet and behavior (and excuse the obviously American metaphor) is akin to the ritual and routines that a baseball player does in the batting box. I'm not totally dissing them if they seem to help you, but having spent many years dealing with CH, I've found it best to focus on those behaviors that either trigger or abort my CH. If I didn't my whole life would be about managing my CH and I choose to only let it affect my LIFE in those areas that have a TRUE effect. Life is simpler when you can truly identify what triggers one and how you can get rid of it. Piling all kinds of extraneous do's and dont's just doesn't get it for me. Good luck. Scott |
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Title: Re: Neil's Handy guide to his CH experience Post by serendipity on Aug 9th, 2006, 10:18am It's always so interesting for me to read about others' experiences with cluster headaches. You and I are very different, by the way. For instance, caffeine seems to help my CHs. As a matter of fact, the very first neuro I ever saw prescribed a drug called Caffergot that actually worked pretty well, despite some very unpleasant side-effects. It was LOADED with caffeine. I'm not sure if they even make the stuff anymore, though. As far as diet goes, I'm a huge fan of healthy eating, but for the life of me I haven't been able to tie in any specific foods with my CHs, either as preventatives or triggers. About light sensitivity, I have none. Light and sound are never triggers or intensifiers for me. With regard to the alcohol...that's a huge, resounding NO WAY. If I so much as take communion at church I'll get a cluster headache, and no amount of prophylactic medication will prevent it from happening. However, it seems like you have spent quite a bit of time testing out what works and doesn't work for you, and that's a very good thing. Gaining as deep an understanding as you can of your pain, how to avoid it, and how to best deal with it gives one a sense of control and at least SOME predictability. I think that's one of the most important tools in dealing with any kind of pain. Best wishes to you, and welcome! |
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Title: Re: Neil's Handy guide to his CH experience Post by Neil83 on Aug 10th, 2006, 5:03am It is weird that different things affect different people. Then again when you have any other illness, syptoms do differ and not everyones body is the same. I dont drink alchol much at all and there are some drinks like beer that really trigger me so I avoid it and I only drink little amounts of what i do drink I know some people disagree with finding out triggers and listing dos and dont, but its what I have been encouraged to do by my medical team (6 professionals) and we are keeping a day by day diary. To be honest before I started doing this, I had no clue what was a trigger and what was bad for me, but after investigation and preventative techniques I have gone from 2 a day to 1 a week, so it works for me. As I mentioned in my previous post it may work for me but not for anyone else, as all bodies are different and I did feel a little shut out by some comments to my reply, but hey thats why we post on these message boards to get a reply. |
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Title: Re: Neil's Handy guide to his CH experience Post by serendipity on Aug 10th, 2006, 7:18am Neil, I'm sorry our comments weren't more welcoming. I know how you feel, but you have to understand that your information is quite contradictory to what many, many people have experienced with cluster headaches. It's not unusual for different people to have slightly different symptoms, but you seem to be describing a completely different breed of headache. Of course, I'm not a doctor, but I would strongly suggest that you click on the "Cluster Traits" link to the left and read that information. Also, would you mind telling us a little bit more about your pain (how long it lasts, how severe it is, and if there are any other symptoms)? Getting a good diagnosis is extremely important, and if what you're experiencing flies in the face of what the experienced CH sufferers here have learned about this syndrome, it may be time to think about getting a second (or third, or fourth) opinion. Just my two cents, of course. |
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Title: Re: Neil's Handy guide to his CH experience Post by chewy on Aug 10th, 2006, 8:05am If your looking for a simplistic journal format to start with click the link. You can expand on it as needed. http://achenet.org/resources/diary.php |
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Title: Re: Neil's Handy guide to his CH experience Post by sandie99 on Aug 11th, 2006, 4:32am Hi Neil! Welcome! :) It's brilliant to see that you and your family have worked together in trying to figure out what helps with your ch and what makes it worse. Fantastic! Personally, I swear by a healthy diet as part of dealing with ch. That means eating loads of fruits, vegetables, fish, lean meat, rye and wholegrains. No alcohol, no sugar (besides Red Bull which is my painmed) and as little salty snacks as possible. And, as a Finn, it makes me smile to see Panda licorice on your list. I live in Finland and in Jyväskylä (Panda's factory is locaded in my new homecity) where that licorice is originally from! ;) If you get sick of eating the kind you can get from UK, let me know and I'll send you some. :) Good luck & let us know how things are going. Same things do not work on all of us, but everything one figures out can help others as well. Wishing you PF time, Sanna |
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