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Baffled with this "migraine", Can anyone relate to these symptoms?

Does anyone get migraine in this form or am I alone with these symptoms?

I get the visual "auras", but not frequently. That's about the only classic migraine thing without which I think everyone including me would be stumped.
I think that clue in itself was the only thing that made the neurologist diagnose me with migraine.
Because my symptoms which have gone on since 2018, are too vague and not really migraine-like. Yet when I get them I seriously wonder if I have some kind of undiagnosed terminal illness. They make me feel so bad.

I don't get perfect life, punctuated by a few days of a distinct "migraine attack", which passes off back to ordinary life until the next one hits.
I don't have to lie down in a darkened room or get blinding head pain. I don't have to avoid light, sounds, smells or noises. The sun doesn't bother me, though it can be a bit dazzling for my eyes sometimes. It isn't linked I don't think, with my symptoms.
Instead I get a situation where one thing blends into another for weeks and sometimes months on end, before I get a period of time where I feel quite okay again.

The symptoms I get (apart from the visual displays)are:
*Attacks of bad diarrhea, and in between, days of bowel movements usually being a #5, then complete bowel normality for no apparent reason (not food related) for a number of days, most often 3 or 4, but that has run into weeks.

*Gut pains like severe trapped wind which passes off in an hour or two. Passing a lot of wind after waking, which has absolutely no scent but there is a LOT of air comes out.
Lower abdominal distension which comes and goes

*A weird flu-like "malaise" when I feel drained and exhausted, and honestly like I don't have long to live. No fever during this.

*A feeling of random vague nausea which comes and goes at any time of day (not food or hunger related) This can come and disappear. Often relieved by a one hour walk outside, or sometimes having a pee!

*Muscle and nerve spasms in arms, sometimes hands, lower back and neck.

*"Twinges" over right eyebrow which causes teeth on upper right to be over sensitive. This has sent me to the dentist many a time, and she has told me all is well after a thorough exam and X ray.

*Completely going off my legs at times. I get a weird creepy weakness, which seems to come all over me (hard to describe) and centers in my hips area, then my legs turn spastic. I have to go to the ground and just sit there and wait 2-3 minutes and I can stand and walk again.
That most often happens in the first two hours after getting up in the morning but has happened just before going to bed. Not at other times.

*Dizziness and unsteadiness.

*Feeling like my head is in a box, and that my hearing has faded. When I talk my voice seems muted or echoes in my head.

*Sleep disruptions for no apparent reason.
*Irresistible sleepiness after food, usually dinner at 6. That comes and goes.
*Exhaustion sometimes.
*Strange brain fog, the main symptom of that is completely losing track of time. 3 weeks feels like 48 hours in my memory. I mess many social things up because of it. Otherwise the brain fog causes extreme stress if I have to do mental work when exhausted. Particularly MENTAL work. Even when exhausted I could force myself to walk 5 miles without stress.

I exercise well (daily walks in fresh air) I eat as healthily as possible owing to gut problems I have had to modify diet though.
Of all these things, the gut issues are the most troubling. Tests show my gut is normal. The stool is not offensive at all, no blood, mucus, undigested food, odd colour etc. Stool doesn't float and isn't greasy.
The diarrhea attacks are dreadful. They hit out of nowhere at any time.

For four years I have had this. It started out of nowhere. I haven't wished to take drugs so far, nor were they offered to me. Sometimes herbs help the diarrhea, sometimes it's too strong for anything I take. Painkillers are useless and even irritating for my gut.

Can anyone relate to this list of symptoms?

  1. There are stomach migraines. My teenage daughter started out with ones that made her throw up a lot but no headache. The GI Dr said there are two types 1- makes you vomit and 2- cause diarrhea.

    1. Thanks for sharing. It's so important for people to know they're not alone. How is your daughter doing? Have you seen our information on abdominal/silent migraine:
      Wishing you a low pain day, Nancy Harris Bonk, Patient Leader/Moderator Team

  2. Yes, I have heard of abdominal migraines, and maybe that's the kind I get...I don't know really. But I do get mild head pain too, and some vestibular stuff. But the worst is the guts!
    I am sorry your teenage daughter has the vomiting problem. That must be so hard for her. I hope that there is a medication which can help her?

    1. Thank you for reaching out and sharing your difficult journey with us. I can hear how frustrated you living with so many varied symptoms.
      Some of the things you've mentioned can certainly be associated with migraine however, only a qualified doctor can tell you for sure. I do wonder if it would be a good idea to see an expert who specializes in migraine? I'm not sure where you are located, but that may be a place to start.
      I hope today is a good one and look forward to hearing from you,
      Nancy Harris Bonk, Patient Leader/Moderator Team

    2. she graduated to head ones.

  3. Thank you, I know it would be a good idea, to see a migraine specialist. I already did see a neurologist but no treatment was suggested, just a diagnosis and a CT scan to make sure nothing else was going on.

    I have kind of held off doing that for a number of reasons. One being that I don't want the drugs and side effects (so far anyway) Another being that I live in a really remote location with no one like that nearby, and to see anyone would be some kind of long drive.Or even a nightmarish train ride with umpteen changes and little sleep before I go. I can't sleep if I have that anxiety about travel the next day. I also get the IBS symptoms unpredictably, so that hasn't made me want to get up and go anywhere so far. All in all, these things have not made me able to travel anywhere.

    I have been seeing a homeopathy practitioner nearby, and I was making some improvements but had a bit of a crash recently in the way I feel. Maybe because it's Spring. Worse in Spring.

    1. I hear you. It's not uncommon to see an uptick in symptoms when the seasons change, and a change in symptom patterns - I sure do.
      My fingers are crossed the homeopathic doctor will have some answers for you,
      Wishing you a low pain day, Nancy Harris Bonk, Patient Leader/Moderator Team

  4. Hi. It sounds like you have a lot going on. That's hard. <3 I can't give you medical advice for your own safety, but I have some general thoughts. First, the brain fog, dizziness, nausea, tingling and even diarrhea can all come with migraine. Something that jumped out at me is how many stomach and GI-related symptoms you have ... there is a condition called abdominal migraine that is common in children but can occasionally occur in adults as well:

    Beyond that, I wonder if our sister site for irritable bowel syndrome might be able to offer you resources. That's not to say you have IBS, but I'm sure they can relate to a good number of your experiences and could help you with tips or how to talk to your doctor. Their website is

    Have you talked with your care team about this? I'm curious to know their thoughts and what options you've already pursued. We're here for you! -Melissa, team

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