Headaches/Migraines HUGE topic here. Share what works/doesn't
 

Many of us suffer/deal with/hunt/beg for solutions to our headaches and migraines. Here's what I've done so far and what has worked and what has not.

Had 3 migraines in 42 years prior and 4-5 headaches a year (with sinus infections). I have had either a headache or migraine daily since not too long after my accident. Usually between a 3-4 on pain scale. As I move up to 6-7, I welcome other pain as a distraction-haven't done anything to myself. At 8,9, I have DARK thoughts. I share my pain level with hubby and he knows what it means. I'd say I haven't hit a 10 because in my mind that's: Get me to the hospital because I will hurt myself!

I've been diagnosed with occipital neuralgia, vestibular migraines, neck issues, and I think I have ocular migraines too (will be addressing that with eye dr).

-For me I use gallon size bags of frozen peas about 1/2 way full. They conform to my neck or head nicely and stay frozen well. Currently have 3 bags in the freezer. I prefer this over heat. If I have a migraine I have peas on top of whatever else I do.

-My vestibular doc in Chicago is great. He started me on Topamax. Wasn't on it very long (3 months). Neurologist didn't agree with it and took me off. I did experience facial numbing, lost 10 lbs, but did not notice a change in H/M.

-Neuro did 2 sets of nerve blocks in his office. (Steroids-finally started eating) The pain from the nerve block as he did it was a wonderful distraction from the migraine. Sadly this helped 40% for 6ish weeks. Second set worked for around 4 weeks. He then sent me to a pain specialist.

-Pain specialist first did shots in my neck (can't remember exactly what it was but it helped 50%ish in neck).

-Neurologist sent me for head and neck therapy. Felt great while I was there. She did gentle manipulations on head muscles and bones, and neck. Loved when she put pressure on both sides of my head and did manual traction on my neck. All of her movements were gentle. A few hours later I would have wretched migraines that put me down an entire day. I'm on break from this therapy now. Not sure if it will continue.

-Neurologist sent me for nerve ablation for the occipital neuralgia with pain specialist. For my doctor it's a three step process for each side. First starting with the X-rays and my symptoms he determined what nerves to burn. Appt. 1 starts with numbing shots next to each nerve in neck on left side. Not fun, but quick.

For the next few hours at home I pay attention to the pain and let him know what percentage it helped. If it is high enough (40-50%ish for me) he would do it again to see if that same response was attained. This helps him know if he has the correct nerves. There are two weeks between each shot and follow up appt.

Then the burn. I took .5 Xanax for the procedure. I did not want sedation with my fog/dizzy brain. The burn starts lower in the back by those nerve roots. He inserts a large needle while watching it on real time X-ray and numbs each nerve root. I had five numbed on each side. Ouch! Then the procedure. Large needle with burn ending inserted on nerve root. He burns for around a minute. Repeat for rest of nerve roots.

Painful procedure. It took me 6 weeks to recover from the procedure. The first week hurt the most. You do feel a burning, and the needles go through tissue, muscle, and it aches for weeks. Lots of peas! Healing from the second procedure now.

Relief: migraines have dropped from nearly daily every month to 10 a month. Headaches still here daily, plus if I over-stimulate my vestibular system as I am doing now, my headaches can turn into migraines. Should give me anywhere from 9-18 months beautiful relief. WOULD DO IT ALL OVER AGAIN!

-In between pain blocks, my vestibular doctor put me on Keppra. I lost 1/2 my hair. He took me off. No difference in H/D. We decided to wait to try anything else until I heal from the nerve blocks. Then I will know whether or not the vestibular med works.

-My issues are listed below. I try to work at prevention a lot. No caffeine, vitamins, flax seed oil, brain food, ear plugs, full coverage sunglasses, breaks, avoidance, naps, a routine, stay on a sleep schedule as much as possible (I do get insomnia and work hard to not freak out about it), do thing good for my soul, do things for me that make me happy, let myself breakdown and cry when needed and then move on, pet therapy at home, positive family time, trial and error (life IS therapy), go out early in day, don't over-plan, visits with neuropsych 3-4x month, no alcohol, find hobbies, short walks, chair exercises, good pillow for neck support for home and car, edit as I think of more...laugh!

I hope this helps someone. I've been trying to type this for a while now. If you have things that you've done that have worked or don't let us know. It may work for others or not.

If you have headaches/migraines get your neck checked too!!!

Wellness and peace,

Jace :)

Rather than the frozen peas, you can easily make a moldable ice pack. Combine 1 part rubbing alcohol (isopropyl) with 3 parts water in a freezer grade zip lock bag. It will freeze into crushable/moldable ice. Make 3 or so and you can alternate them between your neck and head and the freezer.

Curcumin (after a few weeks) eliminated my headaches completely, and they were terrible at first. I couldn't even move at times, and I had to have all the lights off.

I still have constant pressure in my head, but the headaches are gone. I guess the pressure could maybe be considered a headache, so I've noticed that rest, frequent breaks, and a full night of sleep help the pressure go away. I also can't handle much sugar. If I eat a piece of chocolate or something, my head feels like it is going to explode. On the days that I manage to avoid sugar, wheat, and dairy, I feel very good.

All I have are things that don't work, but maybe it will be helpful to someone.

-Massage: It felt good for about 5 minutes and then the whole following week was the worst experience I ever paid for. (I did this for a month straight and then gave up.)

-Pain Killers: I tried so many I can't remember, but a few of them made me dangerously depressed, others made me sick to my stomach, but most just did nothing. Advil works, but I had to start taking 800mg every 4 hours and that just isn't healthy so I gave that up except on very special occasions where I have to be able to function (such as this summer when I will be a bridesmaid in a wedding).

-Heat/Cold: both are triggers for migraines and relief just depending, and the relief never lasts long because if I use it for to long it becomes a trigger for another migraine

-Caffeine: It can be a relief, but now I am addicted so it is also a trigger, I have to drink a cup first thing in the morning and then it is relief for an hour or so and then another at noon, and then another around 4. Sometimes it feels better for a short time and then it makes it worse.

-Exercise: Anything that causes my head to jiggle or jostle in any way causes extreme headaches that last weeks. Also, anything that raises my heart rate or how hard I am breathing. So basically anything besides an easy walk is out. I believe that if I could just get through the pain for 2 months I might begin to see improvement from exercise, but I can't spend the rest of those 2 months in bed, so I can't try out the experiment.

-Rest: It is good to sleep or rest, but since we can't exercise too much rest can cause anxious energy which is a trigger. Also, the pressure of even a soft pillow is painful, I have to constantly wake up to switch sides so that I have a nice full headed headache in the mooring instead of a one sided headache. I know someone who swears that her memory foam pillow is magic, but it does not work for me, too much pressure.

-Reading: I have switched to audio books, but I have to listen to them on speakers not headphones.

-Drinking: Not drinking enough definitely causes migraines, but drinking enough does not stop them from occurring.

-Crying: a big trigger

-Computers: any bright screens hurt a lot, Inverting the colors on my computer and phone help, but pictures come over as inverted, so that is hard

-Sickness: I don't know if anyone else noticed this but I catch more flus than I thought one person could. I catch everything that goes around. And when I do, the pain escalates. I haven't found a way to stop this.

-Friend: The only thing I can recommend is to have a buddy who you can call or text every time it gets bad. You can use whatever you want, but I use a particular emoticon and the more of them that I text her the more she knows it is hurting. She also gets daily migraines, so she does the same to me when she is having a hard time. Almost daily one or the other of us is texting pain signals and it is just so nice to be able to tell someone and to know that they understand. We live 2000 miles apart, but we feel each other's pain and that is a invaluable gift. We make jokes about going to live in the mountains where the air is clear and eating only simple foods and having no stress or worries so that we could at least be alone in our pain instead of with all those around us who love us and expect more from us constantly. This is my best healing advice: Find a pain buddy who you can share every excruciating moment with so that you are not alone. To be alone is to fail.

So, My advice is:
1) Go see a doctor and make sure that nothing worse is going on.
2) DO NOT GET A 2ND CONCUSSION!
3) Find a pain buddy.
4) It is ok to receive help, other people like to help, it makes them feel good.

Good Luck!
Happy Easter!
~Margarite

For me, the first thing was tracking my migraines. I really thought I already knew my triggers, but this really helped me judge how much of what trigger led to a migraine. (For example, anything less than 9 hours of sleep increases my chances of migraine greatly).

Limiting screen time helps me, but in this world it's my only form of connection with many of my friends.

My physiatrist has been doing lidocaine injections in my neck every 6 weeks. This greatly reduced the number of migraines I have. However that last week before I get the next round is a real you know what.

NSAIDS typically don't help me a whole lot. However, I do a round of motrin and then a round of Tylenol 4 hours later to see if that helps. If not and I have to be functional later, I will give in and take a pain killer. This happens maybe once every few months. I try really hard to avoid them.

I have an ice pack my mother in law found on amazon that goes across my neck and shoulders. (I can also wrap it around my head :) It doesn't freeze solid so I can mold it as needed.

Hope you find some relief soon!

Thanks for the responses!

I am one month out from the ablation on the right side of my head for occipital neuralgia. I still have physical soreness and stiffness from the procedure. I am predicting 2-3 more weeks for healing. My migraines have decreased around 60-65% overall. My headaches around 50% ish.

I would do the procedure over again to relieve the migraines. It could last 4 more months or forever. Time will tell.

Oh how I love ice for the migraines and headaches. I made my own ice packs as Mark suggested, but in like the area covered with the peas and the weight. With migraines I cover my head with a dish towel, peas, and a down pillow. The weight on my head gives me comfort.

Oddly, at the dentist (I have missed 2 1/2 years with all life's events and I've always been a faithful 6 monther!) I felt much calmer with the lead vest covering me for X-rays. Felt less calm when they removed it.

Peace,

Jace

Prior to my accident, I worked with students with autism. Sensory issues are one of the main manifestations of autism. My brain injury is something I am actually grateful for in this sense, because I will be a much more compassionate therapist knowing what it's like to have the sensation of being overloaded by bright lights or noises etc.

Many kids with autism benefit from weighted blankets. It is a calming tool for many children. Ironically while staying at my parents, they have a spare bed that has a really heavy comforter on it. I love sleeping under that blanket!

I also enjoy in my yoga class, the last 5 minutes are just breathing, laying flat, with a weighted eye pillow. It really helps me to relax.

I totally get where you are coming from!

- Identify your triggers. If you don't know what makes you go off you won't be able to be proactive. My biggest trigger for my migraines (setting aside any concussion issues) is stress. Followed by allergies. Food never has been much of a trigger for me, thank God. But knowing this allows me to try to stay a step ahead of my pain.

- Find the appropriate medications. I have been on so many different preventative meds and pain meds. I'm now on 125 mgs of Topomax, which I'm fairly happy with, and Imitrex for pain, which does an okay job but my insurance pays for 9 tabs for a $10 copay so I'm staying put for now. Oh and I'm also back on amitriptylan, but that's TBI-related.

- Find a pillow you like. I have spent so much freaking money trying to replace my favorite pillow that's getting flat but I can't find anything I like as well so I'm still using it as my primary pillow, as well as my headache pillow. When this one finally gets too flat I'm going to be devastated.

- Get a pet. Obviously that's a tough one, depending on allergies and other people to worry about. But I have 3 cats and they all know when I'm upset and come to cuddle.

- When in doubt get thee to a dark room ASAP and sleep it off and don't worry about what others say.

That's all I can think of right now. I've had migraines for half my life and these are the first recommendations that come to mind.

SmillenEyes,

What is a weighted eye pillow?

Thanks,

Jace

weather as a trigger
 

What do you do when the changes in air pressure attribute to your migraines. I sustained a head injury in an accident along with neck trauma - I have been dealing with horrible headaches ever since. I have gone to every specialist and told many different things. I know the migraine type headaches i experience are far worse and onset seems to follow weather changes.
I was told migraines are hereditary but i dont have family history except a cousin who developed them after a head injury.

Does anyone else experience their worse headaches around weather changes?