Chronic Migraine & Headache Sufferers

I thought I’d start a thread for support and possible solutions. I’ve been medially diagnosed with New Daily Persistent Headache (NDPH) and/or chronic migraines. Every day I wake up, then continuing throughout the day and when I go to bed, I have a headache. Basically, I’m never without a headache. In fact, I can’t even remember the last day I didn’t have a headache (I keep a daily headache chart). The intensity of my headache fluctuates as I tend to be worse when I first wake up and then it varies throughout the day with no apparent rhyme or reason. As I type this I have a level 5 out of 10 headache (with 1 being barely a headache and 10 being a trip to the ER or throwing up).

So I’ve been suffering for about 8 years and have gone through just about every possible test, doctor, specialist, holistic treatment, medication, device and procedure related to headaches and migraines. Unfortunately, my years of doctors and tests haven’t identified an underlying cause or any possible solution. I have come to the conclusion that I have a chronic condition that I’ll just have to live with for the rest of my life (just turned 42). I manage my condition through medications (abortives) that usually keep my headache in check and typically are able to prevent my mid level headache to rise to a full blown level 9 or 10 migraine. Though I still tend to get these full blown migraines a few times a month.

Surprisingly, due to either adrenaline or distraction I don’t suffer on the bike. In fact, being OCD about training and racing has served as a nice distraction from my chronic condition. It allows me to put my focus and energy into something I’m passionate about, which has been a life saver.

Anyone else out there suffering from chronic Migraines and Headaches and what has worked for you?

Thanks,

Fellow migraine sufferer here too! I get 3-5 headaches/week. I’ve tried every class of prophylactic, and none have been effective. The only solution has been a migraine treatment - Imitrex. Thankfully, that works, and I can stave off most headaches if I catch them early enough.

Exercise is unfortunately one of my triggers. When my HR goes up, my headaches commence. My most recent neurologist visit has me exploring caffeine reduction, ad it’s had some positive benefit. I’m curious to see what others’ experiences have been!

1 Like

Warning: Potentially controversial answer. :slight_smile:

This topic is dear to my heart. I was diagnosed with vestibular migraine a few years ago. Essentially I had 24/7 dizziness, trouble walking, messed up vision and hearing, etc. All caused by migraine WITHOUT headaches.

Neurologists had me try a few preventative medications. They worked somewhat but the side effects were horrible.

We then tried a ketogenic diet. It’s been a total game changer. I’m off all medication and I have migraine attacks very infrequently now. Have been on this diet for over 2 years now.

Let’s talk about TrainerRoad for a bit. This diet is somewhat limiting. I am effectively doing SSB 1&2 over and over as the higher intensity workouts are quite difficult.

I really DO NOT RECOMMEND this diet for anyone not needing to do it for medical reasons. It’s not fun. And for cyclists, it puts a limit on the amount of vo2max sessions you can do (in my experience).

This stupid diet has given me my life back and if that means I’m a bit slower on the bike then I’ll take it.

6 Likes

If it works it works, thanks for sharing. I’ve always believed that diet has a huge impact. I’m not there yet to trying such an extreme diet, I love racing XC, but I will keep that in mind. Thanks.

My dad was a frequent headache sufferer, he was then diagnosed with Celiac Disease and once he changed his diet his headaches went away.

I am also a headache sufferer, though I don’t think mine is related to diet. I get more tension headaches that stem from the neck. Headaches are tied to stress for me but also (and more commonly) if my neck is in an akward position (slept wrong, was lazy on the couch all day, held my head up on a bike for 5 hours) for too long I get a headache.

I’ve been trying to do more neck strength if exercises and tension relief. I’ve stopped taking medicine because I was too reliant.

1 Like

I’ve dealt with migraines my entire life. I was in my late teens before I was officially diagnosed (grew up broke you know, no medical insurance. This is America…) and throughout my military career I’ve kept a lid on it through self medication and treatment (it can be a career ender for us). I’m interested to see what information gets posted on this thread.

2 Likes

I’ve been a migraine sufferer since my early teens, as is my father. My triggers seem to be changes in sleep patterns and chocolate. When I have them, they are absolutely debilitating, with extreme nausea and vision issues (aura). I have a prescription of Imitrex injections that are AMAZING (I’m actually not a fan of needles but I’ll take it - the nausea doesn’t allow me to keep any oral medications down). I have an episode about once every 10 days, I would guess.

My migraine issues are probably exacerbated by the fact that I also have low blood pressure which I inherited from my mother (my doctor freaks when he takes my blood pressure). I found long ago that regular exercise helps me a lot with my migraine frequency, and the injections help manage the rest.

I feel for you, OP - having chronic migraines SUCK. My doctor recently recommended that I try a daily migraine preventative and I was actually in the process of scheduling an appointment to give it a try (I don’t know the name offhand, sorry). Is something like that a possibility for you?

2 Likes

My wife has been a sufferer for along time. Just recently the doctor put her on aimovig (sp). That was three months ago and in that time she has had 5 headaches. Might want to talk to your doctor about it.

1 Like

Thank you for the suggestion. I also just went through 2 months of Aimovig treatment as well. It was recently FDA approved so it was the newest thing for me to try. Unfortunately it did not help at all.

I’m currently being treated by MHNI (https://www.mhni.com) which is highly respected in the field of headaches and migraines. I even did their 12 day in patient at the hospital treatment, where they bombarded me with medical procedures (spinal tap, blood patch, facet blocks) and every medication that was safely possible. The hope was that they’d leave me with some answers. All for not though. I kinda came out of that pretty depressed. I didn’t want to be the chronic condition guy the rest of my life.

At the moment my docs are running out of suggestions and new drugs, though there are a few things left for me to try. I feel like such a guinea pig. I basically take Issometheptene Mucate every day (sometimes twice a day) to keep my headaches from climbing into full blown migraines. Then I have some “big guns” to use if my head is about to pop off.

I think what makes it so difficult is that no one can see I’m suffering. I look healthy, fit and 100%. I’m such a good faker… I don’t want others pity. So I carry this burden so my family and friends don’t have to. It sucks!

1 Like

Have you tried Botox?

My neuro spoke to me about it. We never tried it but I hear it’s incredibly effective for some migraine sufferers. I think it can be administered in a way which doesn’t make your face look like a fish.

3 Likes

Yes, 4 or 5 times over the years with no luck. Worse yet, it didn’t make me look any younger :thinking:.

1 Like

Came here to suggest as much, but you saved me the trouble! A lot of neurological problems are starting to look like brain fueling crisis (tbi, dementia, migraine, seizure). Great to hear your medical team at least proposed it, and kudos to you for the courage to try it.

3 Likes

So my answer might be biased because I’m a physical therapist…buuuuuuut, have you tried seeking physical therapy?

Most commonly, there are tension headaches and migraines. I’ve treated several patients with many of the symptoms listed but posters above. It may be beneficial to just try it. What could it hurt?! Specifically, I would search for a PT who is OCS certified (meaning they specialize in orthopedic conditions).

It also saddens me to say, there are good and bad therapists out there. So do a little research before going to the one closest to your home.

Lastly, if you do see a good PT, you’re likely going to hear things about your posture (especially on the bike), as your neck is in slight to moderate extension on the bike and most likely you don’t sit upright that frequently. Hear them out, really try it. Put the effort into it that you would put into your TR workouts.

1 Like

Migraine for about 15 years now, 2-3 times a week on average. Triggers are coffee, alcohol and sleep habits (too much or to little) i use triptanes (maxalt, imigran) which works very good for me. Pain usually gone after an hour. Fortunately i live in a country with free health care.

For me the headache sometimes disappear if i’m doing some hard intervals on the trainer.
I can also do my intervals after medication, but i have noticed that my performance is suffering a bit from it.
I expect you have tried triptanes? If not you should.

2 Likes

I don’t suffer nearly from the same degree of headaches that you do, but I have found when I do get bad headaches, training almost always helps. I suspect its in part related to vasodilation as well as hormonal changes with exertion.

There are many different headache types and triggers, so definitely not a one shoes fits all solution. I’m sure you have already tried them, but given that you improve with exercise I wonder what type of response you had from vasodilators like calcium-channel blockers (eg. nifedipine) or beta-blockers?

If you having a lot of associate muscle tension, I would second the vote for PT and also massage therapy if you haven’t tried already.

1 Like

You folks that have migraines are likely aware, that there is a big difference (in physiology, not necessarily intensity) between migraines, and all other types of headaches. Tension headaches are very very often misdiagnosed (or self diagnosed) as migraines, due at least in part to their often extreme intensity.

I say this not to diminish one or the other, but to point out that treatments, triggers, and indicators for them are very different. The preventative I take for migraines will not help your tension headaches, and the triggers I find for my own tension headaches (which are usually more painful than migraines) are completely different.

If you think you suffer from migraines, get in a study. See a professional, and get a real diagnosis, perhaps a second afterward, as many of the treatments can be disruptive to normal life on their own. And if you are actually dealing with a tension headache, there are far more effective ways to treat them than the meds usually prescribed for most common types of migraines.

2 Likes

Yes, have tried several physical therapists, deep tissue massages, acupunctur, postural alterations, cranial facial release and even dentists fitting me with bite guards (TMJ).

Regarding medication suggestions thank you very much @Kuttermax, @willywonka and @joeyfrench (those don’t sound familiar that I’ve tried) and the others that have suggested what has worked for them. I’ve taken/tried so many that I can’t remember all of them, but I’ll definitely bring them up with my doc so she can check my chart. @Kuttermax that’s a great observation that the ONLY time I don’t suffer is during exercise, there has to be something to that!

Regarding tensions headaches vs migraines I agree there is a distinctive difference. It’s my diagnosis that I don’t get tension headaches, but rather I have Daily Persistent Headaches that at times develop into full blown migraines.

1 Like

Unfortunately none of what you described is physical therapy. Cervicogenic headaches are typically postural/positional in origin and have very specific patterns. The interesting thing about them is the more you get the headaches, the more likely they are to occur. There is increased sensitivity in the oa-c1-c2 joints that need long term decompression. True cervical-related headaches are not typically of muscular origin, simple muscle related fixes do not apply. A good PT can reduce your headache in intensity and location in front of your eyes (literally).

2 Likes

Very sorry to hear this. Really glad you can bike with this condition. My wife is in a similar boat, but exercise doesn’t help or stop her headaches. Our first date was a mountain bike ride, but we haven’t done that in many years. Her last neurologist (male) has migraines and luckily for him, exercise helped his migraines.

My wife has also tried very drug available to no avail. We haven’t tried Amovig, but are trying Ajovy, another similar drug. She’s been on it for three months and it hasn’t changed the frequency or pain level of her headaches that I can tell, although she is still hopeful.

Sorry to hear MHNI didn’t help. I tried to convince my wife to give it a try 8 years ago, but for whatever reason she balked. Both her sisters get migraines, although neither as bad as her. Really crappy deal and sorry anyone has to suffer this disease. Like you say, “no one can see I’m suffering”. It would be much easier for people to understand if you had a bone sticking out of your skin.

The only drug that ever seemed to help, until it didn’t, was Topimax. But that had side effects and eventually either it stopped working or her headaches overcame its effectiveness.

Her neurologist prescribed the “Raskin Protocol” and she feels it break the cycle of a particularly bad headache, but it only addresses really bad stretches - not a cure.

Best of luck. I wish medicine would put as much research into migraines as weight loss or other self induced problems.

1 Like