Dealing with chronic migraines

Hi my name is Jacob and I have had troubles with my health for most of my life. At first it was basic ADHD which affected me in school alot until I was diagnosed. It then after a good year, I almost failed 8th grade due to seizures that my principal thought I was faking. Afters years of seeing neurologists, they finally got it under control. Now to the main reason.

I started to get migraines in high school very badly and luckily at that point I would only have them if I went to school. So then after talking to the teachers and figuring out the best solution I dropped out of high school and got my GED. Everything was looking up until my third year in college.

This started in the middle of Christmas break. I had just gotten a phone number from a girl at school and I was very happy, but then my migraines started to come back worse then they had ever been.

At first it just started with the pain and for the first half of the semester I started hanging out with a good friend and when ever I was around her, the pain was basically non existent. During the weekends is when I felt my worse and I thought that I just had to much time to think. But after spring break I wasn’t hanging out with my friend has much and the pain started to be constant. Which leads to now.

I was in a Veterinarian Technology program and was really enjoying it, but then my migraines just kept getting worse and symptoms just started piling up. First it started with fatigue, then weakness, irritability, sensitive to light and noise, sometimes have visual disturbances. I was going to do an internship this summer ( 40hrs a week for 6 weeks), I can barely leave my room. When I try to I usually fall right outside my door. Then I started to get very depressed and trying to talk to my friend that helped before, but it isn’t working.

Which brings my to now. I feel hopeless and there isn’t much I can do with the pain being a 9/10 on most days and have had less then 5 migraine free days this whole year, which also makes me feel useless. So I figured I should start reading out and talking to people who knows what it can be like. Also hoping that someone has tips for coping with this.

Hi Jacob

Welcome to the Support Group. Sorry to hear you are suffering. I’m not a doctor but from the stats you give I think you should qualify as a ‘chronic’ case extremely easily. There’s no point in continuing to suffer at this level. Suggest you go immediately back to your medical providers for assistance. Short term there must be stronger abortive you can try and long-term it could well be you need some form of preventative to reduce attack frequency etc. If your normal medical provider cannot assist I suggest you ask for referral on to a specialist neuro-otologist or similar as soon as can be arranged. Meanwhile might be good idea to read the on site Wikis paying particular attention to lifestyle changes such as diet and sleep hygiene. As you are very symptomatic you will probably need to throw all options at this to try to gain better control. In addition to all the above research the Cefaly device. Lots find them very good for the pain. There’s a lot of options out here. You don’t need to suffer but you will need to be your own advocate, research for knowledge and push to obtain assistance. All the best with your journey.

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Thank you Onandon for your advice my healthy lifestyle has definitely gone down hill, so I will definitely try to improve it. For my doctors I see a neurologist and a headache specialist and am currently on amitriptyline 50 mg once daily same for venlafaxine 75 mg, with emgality 120 mg monthly injection. So for sumatriptan or rizatriptan hasn’t worked well for the migraines, so I probably should really look into change of lifestyle.

Hi Jacob, sorry to hear about your difficulties. Many of us have gone chronic for years, including myself but I’ve recovered almost completely. Looks like you are on some very good migraine medications, do you believe they have helped at all? Have you tried any anticonvulsants like Topomax? Botox could be another thing to try. Cefaly device is another good treatment without side effects.

Beyond medication, coping with all this is pretty difficult. All I can say is keep connecting with people like us and close friends and family. Try not to struggle too much, just keep trying new things and move forward a day at a time.

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So seems you only gave half the story, eh. From your script I’d assumed you weren’t medicated. As you are it’s obviously time to investigate the rest of the treatment package - lifestyle, diet, trigger avoidance etc all of which should give all those drugs more chance of success. You need to build a good foundation. Vestibular Migraine is a very hard nut to crack.

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