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Strange changes in migraine

  • By Maybeso

    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.

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  • By Nancy Harris Bonk Moderator

    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

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  • By Maybeso

    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?

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  • By GardensatNight

    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/

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  • By Maybeso

    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?

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  • By GardensatNight

    This gets better. Stay here and keep talking to us. We’re all in the same slightly leaky rowboat :).

    I’m really sorry you’re going through this. I have been homebound for the last year (all man-made light triggers a migraine, so I’m stuck in my house unless I want a week-long migraine… and the normal drugs don’t work for me so we have to get IV infusions to stop them) so I understand the battle with depression and hopelessness. Do you talk with a counselor? That helps me immensely.

    Please don’t give up. Migraine is a tricky disease, and it’s hardest at first when you’re kind of hit with everything and it seems like it will never get better. It’s a process of figuring out your triggers and avoiding them and sometimes it takes time before you start to see improvement. When I first turned chronic, I cried for a month straight. I understand where you’re coming from. Also, please know that just around the corner are these promising new migraine drugs called CGRP. Have you heard of them? They’re supposed to come out some time this year and the people who have participated in the trials (some of them even sicker than I am) had really good results.

    With the diet, some foods are worse than others (cheese, yogurt, wine, etc are generally bad for a lot of people, but some foods aren’t a trigger for everyone.) From the ones you named, seeds don’t trigger me. I eat a ton of them. Sunbutter is a great substitute for peanut butter. Fresh seafood is fine, too, as are any fresh meats except like organ meats. You just have to avoid processed stuff. Dairy is bad for me, but not for everyone. I can have butter as long as it’s real salted butter (ingredients: cream, salt) not the unsalted kind which is full of MSG–major trigger, or margarine–also can have MSG. Whole milk is better than low fat. Cheese and yogurt are usually triggers because “aged” anything tends to have migraine causing chemicals.

    The other thing to consider, is that maybe it isn’t your diet. You mention there are other triggers. What other triggers have you noticed, and is there any way to cut down on your exposure to them or change your routine so they are minimized?

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  • By Nancy Harris Bonk Moderator

    Hey there Mayeso,

    We’re hear for you and understand how you feel. I know I’m not alone in saying having multiple chronic illness is frustrating and frankly hard to cope with sometimes. From experience I can tell you managing multiple chronic conditions is not easy. And even when we think we have migraine disease managed, there seems to be a temporary set back, that seems to be the nature of the disease, falling on a spectrum.

    Please don’t lose hope – there many things that can be done in order to live our best lives with chronic illness. However, if you feel you need extra support, or need to talk with someone immediately here is information that will help; http://migraine.com/blog/migraine-crisis-help/.

    Anytime our body is out of whack, whether it’s due to a cold, virus, diabetes or other things, a migraine attack may occur.
    If I may, it sounds like it may be time for a new dietitian, one who have experience with migraine disease AND a new doctor to treat migraine attacks. I know how daunting finding new doctors can be, I’ve searched for plenty of doctors over the last 22 years! There are doctors who are experts in treating migraine disease and headache disorders because they are board certified in headache medicine, which is different than being certified in neurology. I’m currently seeing my 5th true expert and think I may be getting somewhere. When you get a minute here are two articles that detail how these doctors are different and how to find one; http://migraine.com/blog/how-are-migraine-specialists-different/
    and https://migraine.com/blog/really-find-headache-specialist/.

    GardesatNight brought up a great point – there may be other triggers in addition to certain foods. In fact some people aren’t triggered by food at all! Other common migraine disease triggers include (but are not limited to) irregular sleeping patterns, changes in the barometric pressure, odors, lights, fluctuating hormones, skipping meals and dehydration. I know if I get too much or too little sleep, and/or skip meals a migraine attack will be on the way. I hope that makes sense.

    Set backs are hard, I get them and have finally realized they DO happen. Things get worse, and then with time, better.

    I’ll stop now, please let me know you are OK and what you think.

    Nancy

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  • By Maybeso

    I have a therapist. But she’s an hour away and I haven’t managed to keep an appointment in months. Between the cost of getting there and the migraines, I don’t know I’ll ever keep an appointment anymore. There isn’t anyone closer, either, who specializes in trauma related problems. Or that I’m even remotely comfortable with. Or that seems competent. The last time I worked with a therapist in town, I ended up over-medicated to the point that I lost 5 years of my life in a drugged stupor. She put me on a high dose of inappropriate medication that exacerbated my condition, and made me a zombie. So, effectively I don’t have a therapist.

    No, I didn’t know about those drugs and I probably won’t be able to afford them anyway. I have Medicare, but the insurer for Part D that I have doesn’t even like approving diabetes medication. And I’m dead broke otherwise. No job and no prospect of getting one.

    I don’t know what to do about food. The changes we already made almost break the budget. There’s not much more wiggle room there for expensive food substitutes.

    You’re probably right about a dietician, but I think she’s the only one around. And I don’t even know if my insurance would pay for it. And what will she tell me? Follow what the American Diabetes Association says for guidelines? Yeah, if that worked there would be plenty of foods I can eat. But, those guidelines are probably better for non-diabetics and I don’t know how anyone would have a good a1c following those. My blood sugar would be over 200 constantly if I did, and that would cause complications pretty quickly.

    I don’t even know where I would find a headache specialist, or if I could get a referral. This is a rural area. The nearest town that might have one is an hour by interstate each way, and I don’t know if there would be one there.

    I know some triggers. Flickering lights, those damned bright headlights that became so popular recently, perfumes, aged cheese like cheddar, chocolate, nitrates, msg. There are probably others.

    The perfumes one is really a problem. I was so proud of myself that I was starting to be able to go to the store by myself again and do other normal human things, because my anxiety was getting better. And now I can’t. We have two stores. The local grocery, which just put in a huge display of nauseatingly scented bath products which makes it so I can’t go there. The other option is a Walmart, which is completely overwhelming for many reasons.

    And the lights. I was so proud of myself that I was starting to drive again. It had been literally years since I’d been able to drive because of the anxiety and the medication and it was so wonderful to have that freedom again. But, now, sunlight or headlights makes it so I can’t do it.

    I kind of wish I had never come off the medication that was keeping me drugged and housebound, since starting to have a life again and having it taken away again by something else is just not ok and I don’t know how to handle it. I was so happy to see the world again. Please, understand that for 5 years I was just…gone. Due to that therapists “help” And it took me a year to get off those meds and another to begin to recover mentally and physically. And to learn to deal with the diabetes those medications gave me. And now here I am, realizing what I missed and realizing at the same time that it will continue to be off limits and I will be fully aware of it this time.

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  • By GardensatNight

    I hear you on the driving/lights/sunlight problem. I haven’t been able to drive for the past two years.

    Can your husband get the groceries to avoid the Walmart issue? If you worked out the list so it was just once a week, would that be something he could do?

    Would your therapist that you like be willing to do occasional (even once per month) phone sessions rather than sessions where you had to drive to them?

    If you think you are light-sensitive, what kind of light bulbs are you using in your house? Fluorescents tend to be the most irritating. Some people tolerate LED and halogen fine. One of my neuro-opthamologists recommends incandescent bulbs (which my Walmart sells) because we perceive their flicker the least.

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  • By Maybeso

    Yes, I could have my partner get the groceries. That’s not a problem. But what kills me is that I was finally able to do it myself after having been a shut-in for so long due to mental health issues. I was finally able to help, to act like a normal adult again, to have some degree of freedom. And my migraines getting worse now is taking away everything I got back.

    Yeah, I guess I do have to go back to being locked in my house. It’s just worse because I am actually conscious of it now instead of being over-medicated to the point that I have virtually no memories of the 5 years I was on them. Psychiatric medications are probably good for some people, but they stole my life. And now that I was getting it back, migraines are stealing it again except it’s worse because I know it.

    I don’t think that over the phone sessions would work, as she specializes in EMDR, which means I need to be in the same room. It’s not quite hypnosis, but requires face to face interaction. It’s for trauma and PTSD.

    At least the lightbulbs I can do something about. I was actually thinking I should change them. They’re all CFL bulbs. I’m not sure we can afford to change them yet, but maybe next paycheck. I haven’t bought lightbulbs in 7 years since I’ve been a shut-in, so I don’t remember what they cost anymore. I can’t do anything about the kitchen light, since it’s one of those huge ones that uses the long tube bulbs and the landlady doesn’t want us touching it anyway.I don’t know what to do for light in there. There isn’t anywhere to put a lamp.

    I know I seem very negative. When I read things about people becoming shut-ins, it makes me desperate and scared. I was already a shut-in, for a different reason. I was starting to get my life back. Now I’m losing it again. I was starting to have hopes and dreams again. Now I realize that I should not have dreamed. Sometimes, the dark thoughts depression brings turn out to be true. I just don’t know how much more I am expected to bear.

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  • By GardensatNight

    I’m really sorry you’re going through this. I wish science had a way to fix this disease (well, all diseases) for all of us.

    The long bulbs are the very worst ones. Can you leave that one off, or is it too dark in your kitchen? Any windows? Incandescent bulbs are cheap, so that’s good.

    I hear you on the freedom. I miss being able to take my car and go out on the open highway with the radio on and that feeling you could do anything. I work with my doctors every month trying to get me better, and maybe one day that will be my reality again.

    Another thing to consider is that if your home environment is constantly triggering you, it could make that car ride/store exposure what throws you over the top. Triggers stack up until you hit that invisible limit where a migraine attack starts. So if you “clean up” your known exposures one by one, maybe your brain stops feeling as prickly all the time and you find you can do that thing you really want to do, as long as you give up a few others. It’s a thought!

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  • By Maybeso

    We can’t find incandescent bulbs anywhere in town. Just halogen. Does halogen work? Yeah, the overhead light can stay off most of the time, but I have to turn it on to cook since the room is dark otherwise. That’s a good point about things stacking up and home and being pushed over the top outside. I’m more used to thinking about the outside being scary because I would have panic attacks there and not be able to function. Home was my only refuge from that and it was still really bad. So, I guess that attitude wouldn’t be completely out of line with this new problem. When the anxiety was really bad, I didn’t go out, but if I calmed myself I could go out for a little while. My anger about winning at one struggle (the mental health issues) just to have another, different one (the migraines) take me down makes it hard to figure out what to do or to feel hopeful.

    I’m making a doctor’s appointment tomorrow, but I don’t know what to say. She’ll ask how often I have them, but how often is one that never actually leaves? Is that just one a month, then? It’s not at all constant in severity. It waxes and wanes. But it never actually leaves. What do I say about that? And should I even attempt to explain the weird feelings?

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  • By GardensatNight

    Do you ever use e-bay or amazon? You could order incandescent bulbs on there. I’m not sure about halogen. Someone else would have to weigh in if they’re LS and that works for them.

    Do you keep a migraine calendar? That can be totally helpful both to notice patterns, and to keep track of how you’re doing. Usually headaches are counted in terms of “headache days” and often broken up by “severe headache days per month” and “mild headache days per month.” So if you’ve had one headache that’s been there constantly for the past month, and 10 of the days were severe, and 20 of the days were mild, that’s what I’d tell her. Explain all the weird feelings. To you they may seem bizarre. To the doctor, they will probably be ticking off boxes to come to the correct diagnosis.

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  • By Nancy Harris Bonk Moderator

    Hi Maybeso,

    Good to hear you’ll be seeing your neurologist. We have an article with tips for a doctors visit that may help; https://migraine.com/getting-help/six-tips-for-migraine-patients-at-your-doctor-appointment/.

    When I see my doctor, I usually have a list of 2 or 3 things I want to discuss. I think you’ve described what you feeling very well in your last paragraph, as GardensatNight said, say that!

    Best of luck and let us know how you make out!
    Nancy

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  • By Maybeso

    Ah, well, no not seeing my neurologist. I don’t have a neurologist. Just my regular doctor. She’s a good doctor, overall, but is a general practice doctor. But I didn’t make an appointment because it’s expensive and I don’t think it will change anything. What I would want would be a referral to a neurologist, which I won’t be able to make it to anyway, and can’t afford, so it would be wasted. Therefore, no point in going to the doctor, really.

    And since I can’t drive (again) now, I can’t go to my therapy appointments.

    So, I didn’t accomplish anything after all. Which is my new normal, I guess.

    Is it always progressive? Do chronic migraines ever stop being chronic? Is that even possible?

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  • By Nancy Harris Bonk Moderator

    Hi Maybeso,

    No, migraine disease isn’t always progressive, or chronic, and it’s totally possible to go back to being episodic! I know a number of people, who I don’t hear from anymore, who have gone back to episodic. Here’s one such story: https://migraine.com/blog/from-chronic-to-episodic-an-illustrated-journey/.

    What about your sleep schedule? Sleep issues can be a strong migraine trigger for some of us.

    Nancy

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  • By Maybeso

    My sleep schedule is a train wreck. I get alot worse with anxiety and depression during the winter, which makes sleep impossible at times. Right now, I’ve somehow ended up basically reversed. Staying up till 5 or 6 AM, sleeping till 1 PM. I’m taking Lunesta to try and sleep better, but if I try to lay down earlier, I just lay awake despite that.

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  • By GardensatNight

    Insomnia is a big trigger for a lot of people. My neuro tells it like there are chemicals your brain makes during those deep stages of sleep that ward off the migraines, and if you’re not getting a good 7-8 hours of GOOD sleep, your brain doesn’t have that protective cushion. One night of bad sleep can trigger a migraine. Night after night… you get the idea. So regular insomnia is definitely suspect.

    Another idea, they did a study that regular exercise (I think it was 40 minutes 3 times a week in the study) showed a reduction in migraine, although overexertion can be a trigger for some people. You may already be doing this, but I wonder if it could help with sleep patterns as well.

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