My Life with Migraines: Any words of wisdom, or advice?

By kstout135

2 min read

Hi Everyone,

I am so thankful I found a place to share my story, with people who know what its all like. I had my first migraine on October 19th, 2013. I was in my college town in Dayton, Ohio. My parents were visiting me for the weekend. We were at the mall, when all of a sudden, I got a horrible headache. Naturally, we had no idea what was going on, so we went to the ER. While there I got a CAT Scan and IV medicine. The IV medicine left me feeling extremely out of it.

My next migraine occurred on April 3rd, 2015, Maundy Thursday. I remember because I was supposed to help with my church offering that night. The migraine began with numbness in my face, then the pounding headache, then the phantom noise in my ears. From there, I went to the ER, and got the CAT Scan and MRI, but no medicine. After the ER visit, I saw a really nice and helpful neurologist in Philadelphia over a six-month period. During those six months, I had daily migraines where I became physically ill pretty much on a daily basis. I would throw up so much, that after every time, I felt like I didn't have a body anymore.

While having a break from those migraines, I went through a period of several months during which I vomited, but also felt so exhausted, that sometimes I could not walk. Every time I stood up, I felt as if I was going to faint. That's because I have orthostatic hypotension. So, while I was still seeing my neurologist, I also saw an endocrinologist. It was determined that I had low cortisol levels. My mom, who is a nurse in Philadelphia thought I had Addison's Disease. But, after lots of blood-work and tests, I never got any definitive answers about that issue.

Now, my migraines are back. The nausea and pain are unbearable. I know we are not allowed to give medical advice to each other. However, with that being said, has anyone ever had a migraine with no headache, and just fatigue?

Thanks!
kstout135

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jean Member
Yes, no headache but fatigue. Sometimes so fatigued I have to lay down but often can't sleep. Other times fatigued but can function. This symptom usually doesn't last by itself. Other things accompany it. Such as I am having right now, inability to concentrate. Check this article out. <a href='https://migraine.com/blog/i-had-no-idea-that-was-a-symptom' target='_blank'>https://migraine.com/blog/i-had-no-idea-that-was-a-symptom/</a>
1. kstout135 Member
 Thanks Luna!!!!
kmh Member
I'm sorry to hear about your struggle. I have heard about migraines that do not involve pain, but I don't know very much about it. But please know, you are not alone - even though it may feel like it! I've had migraines for over 20 years. For me, it has helped to learn as much as possible about migraines. Honestly, knowing and learning about migraines gives me a sense of control, especially when my migraines seem very uncontrolled. Understanding my body, my brain, has helped. So I encourage you to learn everything you can about migraines. There is so much new research, for example, in genetic mutations, central sensitization, and the "gut-brain" connections. I wish I had better answers, but I can say that knowledge about migraines has helped me.
1. kstout135 Member
 Thanks Kellie! I really appreciate all your help! This group is so wonderful. It's the only place I don't feel alone. After getting home from work every night, I love getting in bed and reading the forums.I am interested in a lot of stuff I've read on the subject. Lately, I've read that Migraine MRI Scans show white lesions. I had an MRI last year in the ER, but the resident said there was nothing there. Well, of course not ha. I've also read Migraine changes brain structure, and may cause Alzheimer's. Thanks for all the info. I hope you're feeling well
Ann Margaret Member
I have been diagnosed with atypical migraines. I do not have much pain if any at all. I do suffer from ocular, abdominal and vestibular migraines. I often think pain would be welcome because perhaps I could take a pain-killer and not have to endure the other manifestations of this very complex affliction. I have tried everything known to man such as meditation, acupuncture, holistic formulas from the health food store, physical therapy, Elavil,the natural hormone Armour(I suffer from Hashimotos thyroiditis) and it's thought that natural Armour supplies T3 which the synthetics do not. Migraines are a comorbidity for thyroid disease and the lack of T3 was worth the trial. I've tried additional therapies but just wanted you to see how long, arduous and frustrating my journey has been. My doctor has suggested a headache group in either Philadelphia or NYC as a last resort. Since you mentioned Philadelphia, I felt compelled to respond as they may be the answer for you. By the way, my MRI shown white spots too and I was told they show up on migraine sufferers. I wish you good luck and hope your journey is much shorter than mine hs been.
1. kstout135 Member
 Hi Ann, Wow that is awful! I'm so sorry you have suffered so much. Have you tried Excedrin Migraine? That may help. You mentioned migraine is a comorbidity for thyroid disease. Maybe I should get checked or that. I wish you the absolute best of luck!!! 😀 Thanks, kstout135
katdan1026 Member
I have been diagnosed with vestibular migraines, but only after several specialists,lots of expensive testing, and multiple failed treatments. I don't always have pain with my migraines, but I do have violent vertigo, nausea and vomiting that don't stop for hours. Afterwards I'm so weak I fall deeply asleep for the next 4-5 hours(honestly, my husband says he keeps checking to make sure I'm breathing), then after I wake up the nausea and weakness last for 2 days up to a week longer. For a few years. I became almost a recluse, house bound, afraid to go anywhere because my attacks were so random with little to no warning that one was about to hit. I missed a lot of work and almost lost my job because of it, lost friends because of continually breaking plans when an episode hit. Even family members didn't get it. I went into a deep depression feeling like my life was over. But I'm was lucky enough to have a tenacious and stubborn ENT and Neurologist wouldn't give up, and we kept trying different treatments until we found one that worked most of the time. I'm not cured, but I'm at a point where the good days finally out number the bad ones. What I've learned and my advice to you is to never give up trying to get better, and make the most of your good days.
silverphoenix13 Member
One symptom migraineurs can have is called Aphasia. When this effects you - and it can even when you're not in the midst of a migraine attack - it results in short term memory issues, confusion, impaired motor function, issues talking properly, and decrease in general cognitive abilities. It's very similar to suffering Alzheimer's. From there, it's COULD increase your risk of Alzheimer's.