Tell us about your symptoms and treatment experience. Take our survey here.

caret icon Back to all discussions

Strange changes in migraine

First off, I'm new here. So hi 😀

So, I've had migraines since I was a teenager, and am now 36. For a long time, they were fairly stable, but over the past few years, they've changed. I have to say that I miss the old migraines. The old migraines hit like a truck, but when they ended, they were done. Not anymore.
The first change was after I had shingles. I know, I was too young for shingles, but I had it anyway. It made things much, much worse. It went from every few months to every single month, sometimes several times. Then, after, I went on a certain type of birth control that was supposed to help with my PCOS. I stayed on that for a year, and it was a horrible, wretched year. It was pretty much pain the entire time and I was too worn down to even realize what was causing it. I finally went off it, and things weren't as bad then.
Last year, I was diagnosed with diabetes, so my diet has changed to a low-carb diet. I know it includes more migraine triggers now, but there's nothing I can do about that.
But the migraine episodes...they're just getting weird. I have these spells of ...weirdness. The best I can describe it as is pain that doesn't hurt. It's like all the horrible feelings and emotions that would come with severe pain, but the pain isn't there. Sometimes even the nausea isn't there. It's so, so strange. It doesn't sound like it would be that bad, but it's as hard on me as a regular one would be. The spaciness, anxiety, numbness, fatigue, all that are still there.
Does anyone know what I'm talking about with that? I would be hard pressed to even describe it to my doctor, so I just don't know what to say. If anyone knows what this is, is this normal? Does it have a name?
Oh, and my migraine triggers have changed too, and include waaay more things.

  1. Hi Maybeso,

    Thank you for your question and being here with us - welcome!!

    It's not uncommon for our migraine patterns and triggers to change over time, I know mine have. It certainly sounds like your have as well. There are four phases of a migraine attack with many different symptoms; prodrome, aura, headache and postdrome. Not everyone experiences every phase with every migraine attack. You can read more about these phases in this link; https://migraine.com/?s=phases&submit=Go.

    Migraine symptoms can be hard to explain - for sure! From what I've read, you've described migraine brain fog. Spaciness, anxiety, fatigue and more make up this fogginess. You're definitely not alone in experiencing this. This link has all kinds of articles on brain fog; https://migraine.com/?s=brain+fog&submit=Go.

    I hope this helps,
    Nancy

    1. Well, brain fog would account for why I wondered if I'm developing dementia. I think there is alot I didn't know about migraines. Maybe, since they are getting worse, I should see a specialist? If they get worse, do they ever get better? Or am I sort of doomed?

      But, the sensation I'm trying to describe is a more physical one. It makes me literally think that I wish I would die, because it's unbearable. But...what exactly about it is unbearable? I can't describe it.It's like pain that doesn't hurt. I know that doesn't make sense, though.

      Also, does anyone ever shiver when they're getting one? Or does it sound like I really need to ask my doctor what's wrong with me that might not be migraines?

      1. Having problems with temperature control is common during a migraine. I will go from being covered in six blankets (while wearing four layers... with the heating blanket on) and still shivering to being unbearably hot. Husband will ask if he should adjust the temperature in the house. I say no because who knows what my body will do in ten minutes?

        The diabetes and needing to adjust for that diet will definitely make avoiding trigger foods associated with another diet tricky. But I would still consider talking with your diabetes dietician to see if they could find things safe for you to eat on both diets. Kerrie Smyres has a great comprehensive list.

        https://migraine.com/blog/elimination-diet-foods-to-eat-foods-to-avoid/

        1. My diabetes dietitian is useless. I wouldn't call her "mine" anyway. I saw her once, when I was diagnosed with diabetes. She recommended I eat up to 60g of carbs each meal! There's no way I could do that and keep my blood sugar down. If I eat more than 20g per meal, it shoots up far past an acceptable level. Her recommendation would make me go blind and have kidney failure in short order.

          I feel like I'm trapped between diabetes complications and migraines as far as diet goes. What am I supposed to eat? If I can't eat seeds, nuts, dairy, fish...what is left??? That's what I live on, aside from vegetables. No pasta, rice, bread, beans, etc. No fruit other than blueberries. I worked so damn hard to get my blood sugar down and now I'm going to lose that battle because of the migraines.

          Tricky? yeah, more than tricky. I already gave up eating like a normal human. Now I have to give up more, and it probably won't even actually help, after reading more about people's experiences. Nothing actually helps, does it? It just gets worse, doesn't it? I was foolish to look for hope.

          I really want to give up.

          I already have anxiety and depression and PTSD to the point I'm on disability, unemployed and have lost contact with all my friends. I really question why I bother sticking around sometimes. And now, this. I had actually been making some progress with my mental health, and was starting to leave the house and go to the store and and even was thinking about trying to get a job and go back to school. I obviously shouldn't have gotten my hopes up.

          So, this won't get any better, will it?

          Please read our rules before posting.