Our community of experts (many who have dealt with chronic migraine or headache for many years) got together to give our best advice to those who have been newly diagnosed. The question was...
What advice would you give to someone who has been newly diagnosed with migraine, cluster, chronic daily headache, etc?
Here are some of the answers received, generally starting with the most mentioned. This was #4 in our series of community questions.
I was actually surprised to see this as #1, but it was mentioned over and over as the most important thing people did. Keep a diary - symptoms, medications, treatments, monthly cycles, what you eat - the more detailed the better.
Here are some comments that people made:
Keep a diary of all your experiences prior, during and after the attacks. Some of them may not seem to correlate to the condition at a first glance, but in my own experience they always are, so don't assume that some weird feeling has nothing to do with the condition. Describe every little thing that happens to you. ~Patricia (Brazil)
Have a migraine diary. Record, food, weather,cleaning products,head injuries,allergies to fillers of migraine medication. Record causation, and when did they start. Cycles... ~Marlene (Australia)
Keep a health journal/diary, so that you can look for triggers and possible patterns or trends. Include pain intensity, medications used, doctor appointments, etc... This can be helpful for both you and your doctor(s) during your treatment. ~Jamie (USA)
People mentioned iPhone apps, paper diaries, and spreadsheets - whatever works for you. Here are some links to get you started:
Many, many people mentioned the need to do your own research, and be your own advocate. Your doctor cannot possibly keep up with all the research on every condition for every patient. You're responsible to find information (and that's why this website is here!).
The best advice for someone newly diagnosed is to be an active participant in your own treatment. Inform yourself as much as you can by reading and researching... ~Kim (USA)
Be your own advocate- educate yourself- read current books, articles, websites about migraine and pain management... Kathleen (USA)
This may sound trite at first, but coming from people with years of pain behind them it has credibility. Sometimes people who are newly diagnosed think that they will go to the doctor and be prescribed a pill, and that will be the end of it. But it usually doesn't work that way with neurological diseases such as migraine.
The first thing I would say is.... I'm sorry :(, it's a terrible way to live, but I think everyone needs to find out what works for them, I have been down a very long road been on 60 something different kinds of preventive medications over a time of about 15 yrs ... I am at the best I have ever been now ... I would say you have to keep trying until u find what works, it's VERY difficult, can be very depressing, u r in for a long haul u just can't give up and keep pushing until u find what works best for you... ~Cheryl (USA)
Don't give up. Keep trying. Inform yourself, arm yourself, educate yourself, help yourself. If at first you don't succeed, try, and try and try again. Take it all in and make the best decision(s) based on your individual migraine patterns. If things are working with one doctor, try another... one medication, try another.. Keep reading everything you can get your hands on. The more educated you are, the more you can help yourself. ~Kala (USA)
There were quite a few related comments about finding a doctor. For example:
Find a really good doctor that understands your condition and is willing to help. ~Kim (USA)
If you aren't under the care of a neurologist who specializes in migraines (maybe you were diagnosed by a regular PCP or something) then find one, even if you can only see them once a year... ~Gayle (USA)
...there is a way through it! Keep hassling your doctors to get the answers you need when you don't understand something, keep asking questions!... ~E-J (New Zealand)
The first piece of advice I would give to this person is to find a migraine doctor who truly understands what you are going through. I'm not just speaking in terms of the physical, I mean some one who understands the daily struggle we go through. The pain, nausea, vision problems, isolation, and for some even depression. All of these issues need to be addressed. A migraine isn't just a headache and most people don't understand that... ~Darcy (USA)
No, migraine triggers are not just a myth. Finding them and avoiding them has helped many people.
However (our community emphasizes), they may not be what you think. They're not just a handful of foods. And they're different for everyone.
The best treatment is prevention. Drugs help manage the pain. But it important to uncover the underlying triggers for your condition (eg. poor sleep, high stress, dehydration, visual strain, stiff neck etc.). That puts you in control and allows you to take an active role in your own management/recovery. It took me a long time to understand this - preferring to rely solely on my many Dr(s). But when I did figure it out, I got my life back from chronic migraines. ~Carl (Australia)
...You also need to know what can trigger your migraines. Research will help you know common culprits. Keep careful track of everything you eat, your sleep cycle, your eating patterns, and even the weather and how you feel. For me, different triggers actually trigger different symptoms... ~Trista (USA)
My daughter was diagnosed shortly after I was and my advice to her was to make a diary of what she ate and also to watch and record weather conditions. I had figured out before being diagnosed some of my food triggers but found many more as well as weather. She has found that weather was more of a trigger for her than food. so everyone is different and it may take a while to get them under control. It took me a year to really feel that I'm boss over these monsters. ~Joan (USA)
For more information, read Migraine Triggers: Track them Down
Since migraines are not fully understood and there are many different triggers which vary from person to person, I would recommend trying as many SAFE remedies that you can. You never know which remedy or combination of remedies will work best for YOU! Start by trying the natural treatments... ~Jesse (USA)
Many people wanted to shout out a warning about rebound headaches, in particular rebound caused by taking over the counter medications ("painkillers"). Self-treatment using these types of drugs can be a recipe for worse pain down the road.
Be VERY CAREFUL of over the counter painkillers. They are EXTREMELY dangerous. I have suffered with chronic headaches - diagnosis depends on which doctor I've been to that week - and NOT ONE of them mentioned the dangers of addiction to pain killers and rebound headaches. I have now just gone through a week of hell detoxing from them, and can finally start trying to diagnose my headaches again. When you have a rebound headache, it is impossible to know what is "real" headache, and what is rebound. If you don't know what a rebound headache is, just Google it, there are many excellent articles on the subject. Whatever you do, DO NOT OVERUSE over the counter pain medication. ~Debra (South Africa)
Although the advice seems to be obvious (particularly for those with migraine), this went beyond just "go lie down". We all need to make sure we're getting sufficient sleep as a preventative, not just sleep when we're already suffering from raging, flaming pain.
This also relates to schedules - keeping a regular sleep pattern is very important.
Also see: Getting to sleep with migraine
Frequently people wanted to remind you of this - you're not alone! Many people are suffering with you, have been down the same road, and are willing to offer support.
This was an interesting one that was mentioned frequently. Talk to your family, coworkers, boss, friends - help them understand what you're dealing with.
Have your family and friends aware that you have been diagnosed. and they need to be educated just as you are. Having these people aware that these are painful and understand what the symptoms are, is one of the best things that can help you. ~Dash (USA)
Make sure your doctor and significant people in your life take migraine seriously, and understand how it affects you. Educate yourself and your family! (And take care of yourself!) ~Susan (USA)
...Come up with an elevator description of your illness—a 20-second description of how you're affected. The best description of a chronic illness I’ve seen is the spoon test. It allows others to see your limitations in an understandable manner, rather than as a slacker or hypochondriac if they aren't sympathetic. ~Kathy (USA)
Here are a few that didn't make the top 10, but were still common responses:
For more tips, check out these posts from Headache and Migraine News: