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Does MAV ever get better? Don't want to be stuck like this


#41

No problem. I recognise the problem of communication over just written text can miss out some additional cues as to the way in which the words were intended. It’s quite a skill to write an opinion in a way that guarantees it won’t be misinterpreted. I still need to learn that one! :slight_smile:


#42

I think we all need to learn it, lol


#43

And yes, I fully respect each experience is personal and we know our own bodies best. Each one of us is armed with a wealth of experience that is impossible to communicate succinctly to others over a public forum in a way that would quickly and fully bring someone up to speed on their particular case. Occasionally it’s worth revisiting an assumption though.


#44

I just found this article and wanted to share it, about unresponsive headaches.

And another here: https://www.pharmaceutical-technology.com/comment/ean-congress-2018-refractory-migraine-problem-prevention/


#45

I should add that as discouraged as I might feel about the illness, I know that it is important for me to not give in to despair and to fight the depression. I owe this to myself and also to the people that care about me and to the person I live with. I can be sick and still a decent person to be around, if I try. There is a way to live without being fixated on one thing all the time: I watch TV, read books, follow sports teams, read about things that interest me on the internet, listen to music. You might call these things distractions but that word gets a bad rap: they are the things that get me out of the rut of thinking about myself all the time—“distractions” are key to fighting addiction and compulsive behaviour (also something I am currently dealing with) and I think it works the same with depression—I start to read a book and before I know it an hour has gone by and I have enjoyed it. It is not what I want—I would like to be at work, doing something meaningful and earning a living, or doing hard-core workouts or the advanced yoga classes I used to love—but it is better than an hour spent crying.

I would also tell anyone who is suffering the same thing I tell myself: that it’s ok to be angry and sad but there is no debate about whether I am going to carry on living—I don’t have to be happy or hopeful, but I do have to keep going. Buddhism teaches that things will always change: not necessarily in the way we want or expect, but they will change. So even if my present experience is not what I want, it will be different at some point, not necessarily “better,” but different. And even that can be enough motivation to continue on.


#46

I agree about distractions But that’s really hard during times where you are so ill you can’t read, or watch tv, or do anything but lie with eyes closed and your own thoughts, waiting for the severity to subside again.

It’s been important to me to recognise that my depression and anxiety are literally symptoms of the migraine caused by chemical imbalance, so i will feel those feelings no matter what, i can’t think myself out of them. But i can stop fuelling those feelings with negative thoughts and worries, thus reducing the severity of it.

I still cannot accept a life of being like this, because i want to live rather than just survive, and my dizziness prevents me from living. But i can challenge my worries that are mostly “what if it never reduces in severity? What if i have to live like this” by telling myself that there is no indication that that will come true. There is every possibility that i will find treatment that does reduce the severity and restore my quality of life, especially since i am referred to a headache specialist who can do things my gp and general neurologist can’t. There are treatments i have not tried yet and it does not mean i will have to live like this and accept this.

Ironically, being an active member of forums and online groups made my mental health worse, rather than help, mainly because i can’t find the answers i want (mainly, knowing someone else has been exactly where i’ve been with the exact experience and yet got better, because migraine is highly individual and i won’t find someone exactly like me).

I know this is rambling but hopefully sharing these thoughts can help others who might also have them.


#47

Yes distractions require a base level of functioning. When symptoms are bad they are irrelevant.

That’s where the medicine and diet comes in for those that are able to use it.


#48

I think once i am able to find a treatment that begins to increase my level of functioning, i can begin to apply the methods if coping that everyone talks about. Being more active, being distracted etc etc. Until then i’ve just got to hang on and try not to be negative.


#49

Hmm… reading your last post regarding the negativity and such, I do believe it’s warranted for this condition because it’s not the typical condition where they can simply throw a pill at it and you’re all better-- it’s constant trial and error.
To be perfectly honest, the reason I haven’t trialed any meds is precisely what you went through which I fear… and not the fear of before taking it, but having to endure that crap sensation. Your anxiety kicks up greatly and you just wait for that 8 hours or however the half life of that med will wear off so it eases back down. That’s personally why I’ve taken the holistic path and every day gets a little better with time, but most people are able to find comfort in meds.
I live in New England and the constant pressure changes and in/out of snow recently has been testing me at random times but I still manage to be alive day to day (piggy backing off your surviving but not fully living)…

What I realized most and I’ve been seeing a lot in movies lately are connections to people have helped me through pressing times of depression from having this day in and day out. Having people you can talk to, not just about this or even about this, but people who genuinely care about you(family, friends, or even the board members, etc). It takes your mind off this condition sort of but it solidifies a sense of hope in your mind and that you’re not alone even though this condition makes you feel very very alone.


#50

Thanks for the comments, i can completely understand you not wanting to take meds for fear of it making you feel worse. Luckily, they do get out of your system in a few days, but i admit that it was absolutely unbearable. What made it worse was the lack of understanding from others, as my experience seems to be rare. I took the meds way longer than i should have because other people told me to push through. I did not respond in the way most others do, and even now when i bring it up, i still feel that people invalidate my experience abd don’t really believe me, that i am exaferrating. Byt i know how bad it was and know it was a paradoxical reaction to meds, even if others doubt. I didn’t give up too early, i am simply sensitive to meds, as are many with migraine. The possible side effects from the meds are long and debilitating, i can understand anyone wanting a holistic approach. Unfortunately, my efforts with vitamins, diet, hydration, sleep etc has not helped at all. I very much want to try botox, or the new injectable drugs, or acupuncture, or cephaly devices, because there are less side effects since your body doesn’t have to metabolise them.

Thank you for your comments, it’s very supportive to feel ubderstood and validated. I also associate with the dread of making your symptoms worse. You’ll do anything to avoid it because it’s so horrendous, it’s like being poisoned. Because of the trial and error nature of treating mav, it’s really disheartening when things don’t work, especially when the meds that are meant to make you feel better, worsen the condition you are trying to treat. It’s the same with anxiety and depression, the meds used to treat it can make people worse. It makes you feel hopeless - how am i meant to get better if i can’t tolerate the treatments? Especially since western medicine is so centred around medication. When you don’t respond to treatment the way others do, or have different reactions, it makes you feel even more alone.


#51

Haha totally spot on with your statements. To add the invalidation and finding it rare for people who experience things; I’ve found it comforting speaking to women and people who are 50ish+ In age because they’ve had variants of either vertigo or the dizziness or tiny fragments (my hands and feet get super cold when I get migrainious) of what we endured in our MAV condition. If people can relate in a tiny bit with you then it forms a connection and it makes you feel not alone in this.
Granted, you have this forum which people have felt mostly everything you have, but speaking to people in person about the things you have and they also have experienced it… yeah, it’s a good feeling.
I’m actually very thankful for this forum cause I met a friend from Boston on here who has talked me through some real rough times and also about just every day life.


#52

This firum is mostly more understanding than facebook, i know that. Especially regarding having to cope mentally with this condition. Other people have the same thoughts and feelings in struggling to cope, and you know you aren’t alone, you aren’t a wimp, it’s completely understandable to feel depressed or anxious, when doctors don’t really understand what it’s like to live with. I don’t know anyone in person who has mav. Tge pharmacist at my local pharmacy had menstrual migraine, 2 weeks out of every month bedbound, she tried all sorts of meds, was put on the pill which made her worse. The only thing that worked for her was botox, she recommended it to me from the start. It’s reassuring that other people also fail with meds yet do find successful treatment.


#53

Another thing is, this condition just makes me feel so worn down. Like carrying an elephant. It’s mentally and physically exhausting, even when just lay down all the time. It’s relentless. After 2 years of it i keep thinking enough is enough, how much longer can i keep doing this, when will it end. Even if I do eventually find successful treatment it takes ages to truly work, and each thing has to be trialled for 3 months. It’s degrading.


#54

I just want to add to this medication sensitivity subject. It is something that is very real, and IIRC, Hain even acknowledges it on his site. I have been extremely sensitive to meds since childhood. I also did not suffer anxiety issues whatsoever until well into adulthood. I sometimes get side effects that have nothing to do with anxiety, such as a ruptured Achilles tendon from Levaquin. I will even get side effects to meds that never gave me side effects before, like amoxicillin. I also end up having to take very small doses of things. Even when they dilate my eyes, they use half the dose, and my eyes are still dilated 8hrs later!! I’m now trying effexor, and started as Hain recommends with 1/3 capsule (abt 12 pellets) and I was zinging, wired up, nervous and no sleep. It’s been like 3wks, and after backing off, I’m only up to 9 pellets! Lol!!! There are 38 pellets in the 37.5mg capsule and I don’t know if I will get there or not. The effexor makes me nervous and wired a bit, and slightly dizzy in a different way than MAV, but it is helping so far, even at this tiny dose. It has seemed to increase my tinnitus somewhat, which I’m not happy about but can live with.

I’m so sorry you are being so badly affected by this, and I understand your fear and sorrow. When I was 20 or so, I started getting fatigue, dizziness, muscle weakness, etc. I became completely bedbound and was tested for every disease under the sun. I was finally told chronic fatigue/ME/fibromyalgia. No treatment. I finally read a book on dysautonomia at the time. I eliminated as much white sugar as I could, took b complex and vitamin c, and forced myself to walk a bit… And it wasn’t much. Somehow, I got better after over a year bedbound. I honestly don’t think know if it was those things, or if whatever I had ran its course. I’m convinced most of us here have an aberrant nervous system that affects us many ways throughout our lives. I don’t know what the cure is, but I think we’re extremely sensitive to all forms of stress. There’s a book I read awhile back- The Highly Sensitive Person. It was an interesting read, and my teen daughter (who has actually been diagnosed with dysautonomia) and I both fit a lot of the descriptions in that book.


#55

Thank you so much! It’s very reassuring to read about the medication sebsitivity, thank you for understanding. Like i said, whenever i bring it up i feel invalidated by people who seem to doubt it (including my gp) and i questioned myself so many times, thinking i was just weak, a wimp, too easy to give up (even after spending 3 entire months feeling worse and worse, it wasn’t like i didn’t give it chance). I have since learnt that i should not judge my condition in comparison to other people who have mav. We aren’t all the same. One person’s success story does not work for another. What works for everyone else may not work for me but that doesn’t mean i’m doomed, or to blame.

I’m so sorry you also suffer from ME. A neuro-otologist suggested it to me because of my tiredness but he failed to realise chronic mav is a drain on your body. I since read that you can’t diagnose ME when there is another condition present that causes tiredness ss, such as migraine. I also don’t have some of the other symptoms, such as muscke/joint pain.

When my mav began 8 years ago, it came out of nowhere, lasted for 6 months then subsided. With no treatment. Who knows why? It came back 12 months later, lasted several months then went again. This happened every year. Until it came back 2 years ago and never left. The neuro-otologist told me that’s very typical of mav. I have no idea what triggers it or why it went away in the past but hasn’t now, even with treatment. It doesn’t seem to correspond with stress, sleep, food, environment etc etc. No common triggers except my menstrual cycle (although during those mav-free periods my menstrual cycle didn’t trigger me the way it does when i am in a mav flare up). That’s another thing people seem to invalidate - it must have the common triggers like food, stress etc and you’re just not finding your triggers well enough (even the Heal Your Headache book is VERY invalidating, stating that diet helps everyone and if it doesn’t you are just not doing it right). I personally believe that hormonal fluctuations could be to blame, even within “normal” levels that all women experience. We are just sensitive to them. Or that chemicals in our brains become inbalanced (maybe through no fault of our own) and that’s a trigger. Migraine is just so poorly understood.

Tyank you for your message, it really is wonderful to meet such understanding people here on this forum.


#56

Antibiotics cause flare-ups for me as well. Learnt recently the hard way. Sorry to digress from the original thread. But i wanted @Space_Cadet to know he was not alone in this.


#57

I just wanted to share another of my experiences in this thread…

For some reason, talking to other mav sufferers on fb made me feel as if i’m to blame for not getting better. Those who see improvement for doing a diet, and avoiding triggers, made me feel that i just wasn’t identifying triggers properly. There is a wide spread belief we all get better the same way others did and if we aren’t, we can’t be doing it right. Tyat attitude is even in the Heal Your Headache book written by a neurologist, and it’s on medical sites about migraines too. As if we are all triggered by stress, food and sleep and by changing that we should get better. If we don’t, we aren’t doing it properly. That attitude is one that upset me for a long time. I blamed myself. I blamed myself whenever i got depressed, thinking that must be why my mav never goes away. I blamed myself for not going gluten free or doing keto diets, for being inactive and lying in bed all the time - that must be why i’m not getting better.
But it’s not true. I’ve since read that we only know common triggers, but those don’t apply to everyone. That trigger avoidance is overated because you simply can’t live a proper life and avoid most of your triggers, it’s not possible. I felt depressed because i’ d read that the migraine treatment isn’t that effective and trigger avoidance is therefore the best thing. So i felt like i was never going to get better because i can’t identify or avoid triggers. I’ve also learned that food triggers only affect a measly 10% of migraines. Yet on the internet, everyone seemes to get better with diet. Most people seem to get better with lifestyle changes and trigger avoidance. You’d think 90% of migraines get better through lifestyle and diet when you read success stories on blogs and social media. But in actual fact its more like only 20-40%. So the internet really skews reality. In fact, those of us who can’t find relief are a majority, not a minority. We aren’t rare, severe cases who are doomed. We are a majority. I admit that most people get some relief from migraine preventative meds, but there are many more people who don’t than there actually seems to be.

I wanted to share those thoughts i had, and hope if others also feel that way, there’s some solace.

There’s an excellent interview with a migraine expert about how obsession with identifying triggers isn’t helpful, and you shouldn’t blame yourself. He talks about how triggers are not always identifiable and that thing you think is your trigger, actually isn’t and you would have had a migraine anyway.

https://migraineagain.com/change-is-what-can-trigger-a-migraine/

And this one about patient blaming:


#58

Sorry to probably ask again, but what’s the holistic path you’ve been doing? Thanks!


#59

Do you remember any of the lessons from the book about how to deal with being highly sensitive?

I have also pushed myself to be more active standing more and working out though I work at home and don’t care to do too much though I like eating out and may do that more (though most things trigger nausea but compromise). I feel maybe once I finish my PhD and do other hobbies this will go away though when I took months off it didn’t really happen; then again I mostly watched TV


#60

I don’t remember tips to “change” or “improve”, per se, from that book; it was more like tips to make life easier. There was also an accompanying book which was a “survival guide”. It was more about acceptance and choices to make life easier. It did address medication sensitivity, but not really health issues.

I have been forced by circumstance to continue working outside the home, and my Dr’s are hesitant to take me off work. I tend to see this in a negative manner, but I do have to acknowledge that it has probably kept me functional, and helped from a vestibular challenge standpoint. I know when I do hole up in the house for long periods, going out again feels worse. I have seen advice repeatedly to walk- as much as is possible. I try to have someone go with me cause I’m afraid I will get the tilting feeling (which happens to me randomly) while out walking.