Coping with cluster migraines

EmilyJackCO

I'm not sure where this might fit... but this seems a starting point - feel free to move or recommend.

Recently, I have been suffering a recurrence of my cluster migraines and I am incredibly frustrated. So, I'm reaching out to see if anyone else has any good ideas on ideas on how to cope with the exhaustion and the pain. I don't take anything for them other than Aleve (I'm not supposed to take ibuprofen anymore for a while)... and I do find that if I can catch it during the auras - beet powder supplement may stop the pain from coming. This is the short version - please read on for backstory, or not.

I've had migraines since I was 7, so I've learned to live in spite of them. I try my best to not let the pain knock me down. I do change my behaviour slightly to account for them - ie: not playing video games when I'm suffering. That's about the only thing I change. Or I might not lift heavy that day, opting for lower weights and/or just cardio.

But two and a half years ago, they became much worse and far more frequent and lasting for weeks. I have a neurologist treating me in conjunction with my primary and he diagnosed me with seizure disorder and cluster migraines. I did well on Zonegran for a little over a year, but even an increase in dosage isn't helping yet. I woke up with one on Tuesday, only to have another one start right on top of it while I was doing my cardio. I went in last week, and Dr. N thinks that this relapse might be caused by the addition of Prilosec in April, but he's not sure - so I stopped it as well, but nothing changed (I have been moved over to another reflux med).

As it stands - I've done all of the elimination diets and found nothing that changed anything. I've been really stressed and lazy about nutrition for the last 6 months, and it shows. So, I am tracking in Fitbit now, 1700 cals/day. I am also trying to keep the foods simple, both for reflux and headache reasons. Both of my doctors have cleared me to continue my workouts as they stand. In addition, I'm keeping a written journal to try to track down anything that helps/hurts the progress I'm trying to make.

I'm looking for help in how to deal with the effect this is having on my world - or even just some support. Prevention isn't much of a goal, since I've lived like this for almost 35 years, trying everything that's come along. My goal is really new ideas on how to continue to function with the pain and fight back the drained exhaustion from the onslaught. And maybe share some of my experience that can help other sufferers.

jhawk70

Life long migraine sufferer here. I've done some of my own research and stumbled on keto eating and its benefits for neurological patients. Its been used to help treat people with epilepsy, alzheimers and chronic migraines. I've been following a very strict low carb (no more than 19 total carb/day), mid protein, high fat woe for about 6 weeks (in addition to my medication) and have seen improvement in my overall symptoms.

I would encourage you to speak with your neurologist about the keto diet. This may provide you with some relief. There are also some groups on facebook specifically geared toward keto for neuro patients.

Good luck!! I understand how painful life can be when faced with this.

EmilyJackCO

Thank you jhawk! I'm going back to my doctor on the 6th and will talk to him about this option. I have a big issue with carbs anyways, I'm trying to watch them, but ugh. He is a big supporter of not just medications for support and coping, so we'll see what he says. I appreciate this!

dawnmcneil10

My heart goes out to you, I developed migraines when I crossed into the range of turning 40 and boy do they knock you down. IDK if I'm the best to give any kind of advice but I have learned to keep track of foods and headaches for any kind of association. I cannot eat beef and have to avoid carbs, a friend of mine its chocolate, coffee and chili powder or other spices of the like. I wish you much luck finding a way to avoid them as often as possible. I have another friend that got a piercing to the ear which seems to have helped her.

slaite1

I've had migraines forever, and they've also gotten worse the last few years. I'm on a preventative, not sure if that does anything really. I also take a triptan, when it works it works pretty well for the pain. I still am drained and all the other effects. But it definitely does not always work. I've been considering bringing it up in therapy, maybe trying relaxation exercises or something. I'm pretty desperate obviously.

Anyway, I don't have an answer for you but wanted to extend my sympathy. I believe cluster headaches are supposed to be the most painful, and I can't imagine anything worse than the migraines I currently get. I think you have all the right ideas, tracking food, changing your activity and keeping an open relationship with your doctor. Their are headache centers around the country, if you can pull it off it may be something to consider.

RedSierra

I've had migraines all my life, but have learned to manage them so I only get one every few years (or if a storm comes in and the air pressure significantly changes).

I feel for you. My suggestions would be:

Google "rebound headache" since you are taking Aleve and possibly have taken other over the counter meds. Many headache-prone people are sensitive to meds and will get a headache when the med wears off, so you take another pill and can get into a headache/pill cycle. That happened to me years ago and no doctor was able to diagnose it -- the headaches stopped when I stopped all meds.

Make sure you are not getting dehydrated because that can trigger severe headaches.

Make sure you eat regular meals and don't go without food.

What about caffeine and food sensitivies?

tcunbeliever

Another vote for trying a ketogenic diet, particularly since your migraines are also epilepsy related.

keto info:
https://www.charliefoundation.org/
matthewsfriends.org/

keto and cluster migraine:
https://researchgate.net/blog/post/less-carbs-more-fat-ketogenic-diet-treats-migraine-patients
https://ncbi.nlm.nih.gov/pmc/articles/PMC4759386/

Treece68

I to have suffered with migraines for years. Some lasting weeks or months at a time. I have tried a lot of things.
I have recently been doing yoga, mediation and mindful breathing this has also helped me get through the days at work when I have been glutenated.
Yoga so many video's on youtube , mediation you can look into it but the best way to start is to sit down close your eyes and focus on one thing. I use trees blowing in the wind, but it is really whatever makes you feel calm and relaxed. Mindful breathing helps me a lot. Breath in through the nose expanding your diaphragm exhale through the mouth.
I can do yoga even when I am tired because you sit or lay on the floor for a majority and you stretch.
I have also found that when all else fails something that is legal in Colorado, Oregon and Washington helps a lot the slang for it is also something you cook out of.
Good luck.

257_Lag

True cluster headaches are awful! I had regular migraines all my life but ran into clusters in my late 20's. Absolutely horrible. It took about 8 weeks until I was properly diagnosed my a neurologist and another 4 weeks of Verapamil until I found relief. Had to stay on it for a year afterwards. Another brief bout 6 years later also treated with Verapamil. Now 12 years clear. I have no advice other than a good neurologists care but you have my deepest sympathy!

EmilyJackCO

Thank you guys for all of the wonderful replies. I found that I am actually allergic to beta blockers in a very bad way - so that was something we eliminated early on. As well as all food sensitivities, though some may have changed as I've gotten older. So I am eating simply and watching for possible interactions.

Ya know - my coffee shop is doing a weekly yoga class on Saturday afternoons that fits my schedule perfectly - I think I'm going to do that too. And yes, @treece68 - that is on the list if all else fails. This week has been so terrible. I actually a) did something on accident at work that could have gotten me fired and b) sent an email that was so garbled that my boss called me to see if I was ok and sure I was having a stroke. Not really all that funny as he was really worried, but it was, after I explained to him what cluster migraines are.

I am really grateful for all of the words of support, truly. My mom suffered complex migraines my whole life with her epilepsy... and on the one hand, I wish she was still here to commiserate, but on the other - I'm so grateful she's not suffering anymore either. So to know that we can make it through this does help tremendously. Thank you.