Chronic Migraine & Headache Sufferers

Fellow migraine sufferer here.

I’ve suffered from migraines since I was a child, as did my father, my son, etc.

I found a migraine specialist who was life-changing.

I’d recommend finding a really good migraine specialist. My doc gave me research to study for everything he had me try. He explained different things work for different people, so we were on a journey to find what was the most effective to increase the amount of headache free days.

When I found my doc, I was suffering daily headaches. First thing he did was have me stop taking over the counter medication daily to treat headaches to break the cycle of rebound headaches. I learned by constantly dosing myself with exedirin, Advil, etc., I was causing constant headaches.
When I stopped taking over-the-counters, a level 10 migraine followed. With my specialist help, the frequency has been more manageable with some of the preventives others have mentioned and triptans for emergencies.

The specialist also had me change my diet to eliminate all artificial sweeteners (I used to drink diet soda), coloring, and msg. He recommended a healthy diet with fruits and vegetables and moderate daily excersize. There were a few other things he had me try.

Sounds like basic stuff, but a made a big difference for me.

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Thank you @AndrewL, that’s interesting because I do have several bulging discs that were identified. I had a head trauma (knee to top of the head playing football) that gave me a temporary (15-20 seconds) of feeling paralyzed. It went away quickly and I didn’t have an immediate headache. However, years later when doctors where trying to determine an “incident” when my headaches started, I always refer back to that head trauma that happened around the same time my headaches did, but I couldn’t ever directly associate the two. Also, I remember some early PT (not very good) where they were pulling on my head, which I believe was decompressing and separating my spine, I always felt that PT made my headaches (and neck pain) worse ever since. However, that personal evaluation was done years later and I never could definitely correlate the two.

So what exact type of PT should I be looking for and what type of specialty?

My personal bias is a McKenzie credentialed PT. When I say cervicogenic headaches need upper cervical decompression, this is less like pulling on your head and more like prolonged postural modifications. Whatever the issue, headaches of cervical origin have a typical referral pattern and can be reduced while you are in the clinic. Don’t settle for hot packs, ultrasound and massage. Mechanical treatment whether self performed or manual are the answer to this form of headaches.

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It’s been a couple weeks since my OP and I see my migraine specialist tomorrow. Anyone have anything to add or share that I may ask my doc?

One of my aunts was also suffering from migraine, it was unbearable pain that she was getting because of a headache. I feel so helpless, as I can’t do anything for her instead of taking her to the doctors’ place. She has no Son/daughter, I am the only child our family has. Many of the times feel guilty for not taking proper care of her, due to my daily hectic schedule. So, when I discussed this problem with one of my friend’s dad, he suggested me to call caregivers or elder lawyer NJ who are capable of taking care of elderly people at home.

My wife suffers ocular migraines and amitriptyline stopped them overnight, her mother also suffers migraines and amitriptyline seems to have stopped them as well.

My wife also has NDPH and has had for around 5 years. She’s tried a lot of the same things as I read here with little success. However about a year ago she started having a very specific Botox treatment. She had previously heard Botox may work and had tried a local cosmetic version but this had no effect. However being treated by a specialist at UCLH in London Uk she had a specific protocol which has been great. It involves around 30 small injections/doses around the forehead, temples, and in the hairline of her neck.

It’s taken her from her persistent 4-6 down to a 1-2 and it lasts around 3 months. If you’ve tried a more general treatment I’d urge you to push for this if you can find it. In the UK I believe this is the only hospital providing it - my wife has to travel to London every 3 months to receive treatment.

NDPH is so horrible and it’s so hard for others to comprehend how little is know and how there isn’t a cure for many, but we have to believe there is at least a treatment that will help out there for everyone.

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I’ve been through 3 rounds of the medical Botox for migraines. Really glad it worked for your wife but was unsuccessful for me. Worse yet, I didn’t look any younger, lol.

The latest I’m on is Cyclobenzaprine at bed time. So far so good cutting my daily headache level in half :crossed_fingers:.

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Some people experience these headaches for six months or longer. The causes of migraines are daily headaches and it is associated with head injury, overuse of painkilling medications, stressful life events. If you have a daily headache then consult with the doctor as soon as possible. Here are some of the tips to take relief from migraine https://www.everydayhealth.com/hs/understanding-migraines/ease-migraine-pain/
https://blog.astocare.com

Hi @MI-XC.
I’ve gotta say, that’s pretty shitty but I know you’ll get by as we humans are a tough bunch. My grandmother had chronic pain daily for most of her life and she lived into her late 80’s.

I get migraines for reasons unclear, but when I get them it’s after a hard training ride. They slowing die down over three days. Thing is, the next day I go out and train and same thing - I don’t notice the headache, or can’t (not sure). Post ride it’s back. Strange huh.

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I get Migraine attack once in a month or two and I feel like blowing my head off in one shot and end it once in for all, but you guys over here face it and fight it daily seriously hats off to you guys. Actually I was reading about an alternate option for triptans and I came across a new drug called ubrogepant, which is still under clinical trial but has a promising result and said to be better than triptans, not sure if it will work for Chronic Migraine.

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Have you guys try to meditate every day by 10-20 minutes and do yoga to get rid of stress?

I do meditate daily and it helps in other areas of my life and racing, but doesn’t reduce my headaches. Stress is not an issue for me.

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oh ok, I see.
You can also try to go to chiropractor to set your spine. Sometimes it helps.
Also… my friend got rid of migraine by bioenergy therapy-reiki.
That is all i know about how to treat it.

Lifelong migraine and non-migraine headache suffering male - now in mi-40s.

The game changer for me has been diet and actively working to get my systemic inflammation under control.

The lifestyle factors that people mention like stress, sleep and so forth are critical too - but I am medication free and have now been so for years as a result of diet changes.

First thing to cut:

  1. Gluten and grains - we don’t need whole grains to be healthy, and most of them are not healthy. The exception I make sometimes is to have oats, but if I have too many they elevate my blood sugar levels and that triggers migraine.
  2. Sugar - sugar is pro-inflammatory and most of the sports nutrition we consume is absolute junk. Ditch it and feel better. Honestly - I can’t say this enough, sugar is bad.
  3. Dairy - YMMV, but cutting dairy has been another game changer for me. Dairy is phlegm promoting, phlegm causes sinus headache, sinus headache leads to migraine. Boom. I do have very limited amounts of sheeps/goats cheese, but otherwise, give it up.

I would go hardcore with a clean, paleo style diet before resorting to hardcore and likely toxic pharmaceuticals - but, of course, YMMV. And of course, pharma might be needed in your circumstances, in which case, crack on. But I think diet and lifestyle change has removed 98% of my triggers - I get the occasional headache now and just deal, but once or twice a year is manageable. And that’s from having had dailies for years.

“The causes of migraines are daily headaches and it is associated with head injury, overuse of painkilling medications, stressful life events.”

Uh, no. While for men, head injury can cause migraines, women typically get them for different reasons, still not understood by medicine.

My wife and her two sisters get migraines and non has a head injury. They do not overuse “painkillers” and their headaches are not associated with stressful events. And to be blunt, that link from everyday health is useless to a real migraine sufferer. My wife used painkillers for years, but now does not. Result? No difference in her headache frequency or severity, except that now she gets zero relief. Meditation and lavender don’t do a thing when it feels like you have a spike going through your head. Nothing wrong with them, but it is no cure and doesn’t stop a migraine. Lavender does smell nice, as does peppermint oil.

If food exclusion diets/strategies help with migraines, great. It doesn’t help for most sufferers, but it is another blame the victim idea - they must be eating/drinking the wrong foods.

The medical community (and most men) blame migraines on the sufferer - who are primarily women. It is a medical condition, not a lifestyle problem. Thankfully, in the last 15 years the medical community has woken up to the problem. Some game changer medicines have appeared for a debilitating disease.

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Funny stuff, my wife says the same thing. It didn’t work for her, either, but apparently does for many. “Hey Doc, while you’re at it, how about hitting some of those wrinkles around my eyes?” For those unfamiliar, the Botox shot routine for migraines is about 32 shots. Across the forehead, the temples, back of the head, neck and shoulders. Hard to watch.

I’m a 15 years old dude and I’ve had a headache for as long as I can remember, and have recently been diagnosed with Chronic Daily Headache (CDH) which doesn’t really do it justice because I do literally have a headache 24/7

I used to keep a headache diary that I would write in during the day, rating how bad my headaches were, but focusing on them only seemed to make them worse, the only thing that I can do is try to ignore them.

I’ve tried normal headache medications, I’ve tried Beta Blockers, I’ve tried eye tests, I’ve tried acupuncture, I’ve tried cutting my schedule, but nothing seems to have any affect on the headaches at all and, as usual, the doctors have all said that there is nothing that can be done.

I am obviously still young and don’t want Botox or anything like that, and I am very skinny, so I’m not sure that dieting is a viable option. Does anyone else have any ideas?

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Sorry to hear and that sucks at such a young age. As a fellow CDH sufferer I literally feel your pain. Consider having your parents look into MHNI (https://mhni.com) this is where I go, or another migraine specialist institution. The options/solutions are numerous, so you’ll need a specialist that can guide you through. Your family doctor will be of little help once they’ve ruled out any mainstream causes. I’d start keeping a journal and file on everything you have tried, everyone you’ve seen and a list of procedures, medications and doses. This will help you over the years as you move from specialist to specialist. It’s a process that will take time, but you should be able to manage your headaches if a solution can’t be found.

Regarding your headache diary, I’d say continue with that and note what meds, foods, activities, etc. make it better or worse. You’ll end up being your best source of information because no-one will know you better than you on what helps your headaches. A food journal may be a good option as well and I’d recommend to try the Elimination Diet (https://www.webmd.com/migraines-headaches/migraine-elimination-diet#1).

In the mean time to help with the process, I strongly also recommend daily meditation such as Headspace (https://www.headspace.com). This has been a life changer for me with my headaches, in life and on the bike. Also, make sure you have a hobby you’re passionate about (cycling for instance) as it serves as a great distraction from the chronic condition.

Headaches is what you have, it’s not who you are, so make sure not to dwell on it. I’ve been dealing with CDH for over a decade, so feel free to PM me if you need anything further.

Over the past 3-4 years, I’d been getting increasing migraines - about 2 a month, each lasting 3 days. The day before I would be foggy, have problems articulating or remembering words, feeling down. Triggers were definitely alcohol, stress, barometric pressure changes, missing a meal - you never knew what would set it off.

I saw doctors, had my eyes checked - and became was increasingly depressed and stressed about keeping up on work and life. My last option was prescription medication, which I had really been trying to avoid. So I started a last ditch effort to try anything so I could get my life back.

I decided to try eating gluten free. 2 weeks passed, then 4, then a few months. I slowly gained more energy, stopped losing hair (super stressful for a woman in her early 40s - my hair follicles used to ache inside my head), and after 2 decades of being lactose intolerant, after about 4 months I could even eat cheese - pizza, lasagna, alfredo - without lactaid!. I’d been diagnosed with trigeminal neuralgia about 6 years ago with debilitating nerve pain in the left side of my face and head - and that pain has almost completely subsided. And the headaches went away. I’ve had one in the last 6 months since I stopped eating gluten, and it was only for a day.

This diet change has changed my life to the degree that I am looking to share this story with anyone who is suffering because I know how miserable life is when you’re in that kind of pain. Gluten may not be the reason for your migraines, but it is a relatively low cost, non pharmaceutical effort to try and see if it helps you.