Living with Chronic Migraines

By chimamalko

1 min read

I am 21 years old and I have suffered with chronic migraines since I was 13. I felt alone until I found this website and read all of your posts, to be honest. I have such great family and friends around me, but as much as they say “we know how much pain you’re in,” they just don\'t. I don\'t want them to know how much pain I am in, I would not wish the pain of living with chronic migraines on anyone.

I have tried a number of medications. Pain meds, prevention meds, herbal meds, Ibuprofens, etc. Nothing seems to take the pain away. The pain is not the only bad part, its the weakness and feeling of hopelessness that comes along with it. It is like there is nothing you can do except live in fear of your next migraine attack. I cannot plan anything in advance because I never know when one of these suckers are going to come next. Besides the actual pain and the feeling of hopelessness, did I mention there is nausea, eye pain, light and noise sensitivity as well?

You know what is even worse than having chronic migraines? Having to explain to the know-it-all people around you that claim to know what you are going through and how to solve the issues better than yourself. “Drink water, you aren\'t hydrated enough!” or “You need to fix your sleeping schedule and eating habits” or what about “Are you exercising enough? Not drinking too much caffeine?” I\'m sure all of you have heard one, if not all, of these before. Sometimes I just want to snap and super sarcastically say “NOPE NEVER TRIED ANY OF THAT, I LOVE BEING IN PAIN EVERYDAY.”

Ugh. I hope all of you find some sort of cure soon because I sure hope I do. I can not keep living like this. It has been 8 years for me and I do not know how much longer I can deal with this all.

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intricatepurple Member
This scenario sounds so familiar to me as well, know that you are not alone in your struggle. Stay hopeful and #staymigrainestrong.
debbieleq Member
I think that you are a part of a great group here who feel the same way. You are not alone.
Holly Harding Moderator & Contributor
Hi there, <inline-mention user-id="3701257" username="chimamalko"/> - I'm so glad you shared your story and how you are feeling. I'm also relieved to see <inline-mention user-id="3805651" username="debbieleq"/> and <inline-mention user-id="3861196" username="intricatepurple"/> chiming in to support you. They are providing great examples of exactly what you spoke about: the wonderful way that this community can serve to help decrease the sense of isolation that can so often accompany migraine. We are definitely here for you and you are not alone. Everything you raised is so normal and makes all the sense in the world in terms of feeling frustrated, fed up, exhausted and saddened. It sounds like you have been navigating this disease for some time now, so what I'm about to say, you've probably already heard- but I'll still mention it just in case. I just wanted to be sure you having considered working with a migraine specialist, rather than a neurologist, or general doctor. Migraine specialists are the best trained to help you manage this complex neurological disease - especially when you are dealing with chronic migraine. <a href='https://migraine.com/blog/the-mrf-directory-of-headache-and-migraine-specialists' target='_blank'>https://migraine.com/blog/the-mrf-directory-of-headache-and-migraine-specialists/</a> I will also add- as a fellow chronic migraineur, who has had migraine for 39 years, chronic for 16, the journey is indeed difficult and nonlinear. Some days (and years) we find ourselves in a place closer to acceptance and other days infuriated or deeply sad. When we are in it for the long haul, it can be very helpful to put resources in place to help manage the ups and downs. I, for one, am a big believer in the importance of making a relationship with a therapist/counselor so that when those lows come along, that relationship is established- and then reaching out for help is easier than trying to find someone and set up a whole new relationship when we are in the midst of sadness/hardship. There are also online support groups worth searching for and joining- <a href='https://migraine.com' target='_blank'>migraine.com</a> has an active facebook page related to our articles worth checking out. Lastly, you mentioned hoping for a cure. I'm not sure about that, but there has been some major movement related to the treatment of migraine. If you haven't already, it is worth checking out Gammacore (<a href='https://migraine.com/?s=gammacore+' target='_blank'>https://migraine.com/?s=Gammacore+</a>) and CGRP (<a href='https://migraine.com/?s=cgrp' target='_blank'>https://migraine.com/?s=CGRP</a>) -- two very newly FDA approved treatments for migraine. You didn't mention Botox- (<a href='https://migraine.com/?s=botox' target='_blank'>https://migraine.com/?s=botox</a>) -- but that is also FDA approved for chronic migraine. I hope some of this information might prove helpful. In the meantime, please know how happy we are that you are a part of our community. Please stay in touch with us about your journey-- we are thinking of you.
charisa Member
I sympathise with you as i have migraines as long as i can remember... i would recommend you bowen therapy as it helped me a lot. It hasn t eliminate the beast but it weakened it greatly...
chefpat Member
Chimamalko, Thank you for your post. I can totally relate to you. I have heard well meaning thoughts and advice from all kinds of friends and family on what their theories are that may be causing my migraines. I went to a Neurologist who did CT Scans and MRI's and was diagnosed as having Intractable Migraines. I have been prescribed every drug that they had at their disposal with no help at all. None of them even took the edge off of the pain. No one seems to understand how bad the pain and discomfort is, waking up and trying to go to sleep with a headache is just aweful. Late last year I became a MMJ Patient, CBD has helped me greatly to manage the pain during the day, and THC just before bedtime knocked me out and I now sleep through the night without waking, (that alone is a blessing), this was not even possible before. I hope that you too can find some relief to what you are going through. Best of luck to you in your search for relief from the pain.
debbied Member
Ugggg. Someone at my mother’s funeral told me all I had to do was stick my head in a cold shower. Ah, NOPE! I usually end up on the floor of the shower. Once I was at the gym and a migraine was coming on fast. OMG, I ended up on the gym shower weeping. I used to feel hopeless when all the medications and lifestyle changes didn’t help. Then along came AIMOVIG. I actually am doing very well on it. Instead of being awakened every night at 3-4am with a migraine. Depending on where I am in my monthly cycle for AIMOVIG. Sometimes at the tail end of the month or at the very beginning bad weather cannot be beaten. I have a very understanding headache specialist who says I can have all the Percocet I want. Yes, drug test every 6 months but so what. I’m not taking anyone else's medication. There was one two week period where I needed one every day because the weather was horrible. I’m guessing with the AIMOVIG I’m down to1 or 2/ week. I’ve been taking opioids since I was in my 20’s for occasional migraines. Only 35% of people get addicted. That means 65% don’t. I don’t get anything out of the Percocet except pain relief. No high like others on one Percocet. When I don’t take the Percocet for a head banging, sobbing, screaming suicidal cluster migraine I’ve ended up getting hauled away fby the police and ambulance to a the psych facility twice. AND YOU DON’T WANT TO BE THERE! They try to give you a psych diagnosis even when you were “ crazy with pain.” But this post reminds me to get a note from my doctor in the event that I ever need to go to the hospital. A cocktail of fluids, imitrex and phenergan won’t work for me.