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


#21

Ok, and just for reference, I started on 5mg of Topirimate and yes I could feel even that low dose. I am super med sensitive as well. It takes a long time for my body to understand how a drug feels and be able to accept the effects it has on me. It’s not a conscious thing, its just the brain-body reacting. Good luck!

FYI, I use this scale for microdosing:

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High Precision Jewelry Scale
More health accessories here

I just weight the full pill as 100% and then break it into pieces to get fractions of a dose. NOTE: you cannot do this with extended release (ER) pills!

James, probably should put that one in the recommended products.


#22

Very cool device!


#23

Thanks for the suggestion!


#24

I so empathise with you, I recognise myself in a lot of what you’ve written, the sheer despair, the sadness, the hopelessness.
I’ve been dizzy for 8 months, which I know, seems very little compared to you.
Two things I was thinking of as I read your post:
Have you received counselling? Not in the way of CBT, to reduce your symptoms, but more, an empathic listener who accompanies you in the process of grieving. A humanistic / person-centred counsellor would be more suited for that. I’ve started counselling a few weeks ago and have been finding it helpful. I’ve also been known to ring the Samaritans (helpline for people in psychological distress, free in the U.K., 116 123 I believe), as I’ve hit rock bottom so many times over the past 8 months… I really believe that a sort of grieving process needs to take place - traditionally they say you go through disbelief, anger, and depression to reach some kind of acceptance; this means you actually need to feel depressed for a while, cry, be sad for what you lost, let it all out. (This is what I do when I ring the Samaritans, I prefer not to share my despair too openly with my family and friends as it scares them). Over the past month or so I’ve noticed a subtle shift … a bit like what Gidlabu describes… that I’m not always so sad any more, that I’m starting to enjoy some things in life again, even if very dizzy.
Second thing that came to mind is the idea of pacing, which is often taught to patients struggling with chronic conditions - the idea is that inactivity is harmful to the body, even if it feels better because there’s no pain / triggering of worse symptoms. So with pacing you build up a manageable activity level while accepting to trigger some of the symptoms - in the long term the body grows stronger and less quickly triggered. To pace myself I divide my day in plenty of little slots of activity (simple things but all of themselves either necessary to survival, or looking after my son, or fun for me/ self-care). Around these slots I rest. So when I pick up my son from school (half hour walk), I rest before and once I’ve given him a snack we lie down and watch a bit of tv. Although I feel rubbish moving around, I still move and still get to do things.
I haven’t found the cure for my dizziness yet. I’m hopeful, reading the recovery stories, but like you, I struggle with despair at times. MAV is a pretty horrid, cruel illness… but we’re alive, and we need to find ways to live with the dizziness.


#25

Thanks @gidlabu for taking the time to write this down. I could have written some of this myself.


#26

many here have had good results with venlafaxine. It is most definitively going to get worse before it gets better when starting a med. I believe words matter and I don’t call mav a horrible thing or condition. It is a human condition. Instead of fighting the symptoms, acceptance might help rewire the brain. I would def take on the advise of getting some type of emotional help/ counseling / therapy, to take it all out.


#27

Very true!


#28

Hi again

do you tolerate NSAIDs like aspirin and ibuprofen or diclofenac? these are not preventatives but for some people (including me) high-dose aspirin or diclofenac can provide some relief when bad attacks are ongoing, and can even abort attacks. I’m not recommending particular drugs - you should always check with a dr if you haven’t taken them before - but for me, before I found a preventative that started working, diclofenac was a saviour as it gave me a few hours of near normalness on bad days, and gave me the hope that there must something out there that could give me longer-term help. it also gave me confidence that this was something migraine-related, and not ear-related, as i didn’t see how a couple of aspirin could make a bad inner ear better for a few hours. they also helped with other related issues like photophobia and tingling/weakness in legs that i used to get with the attacks.

I have never tried triptans, but some people report relief from attacks with those, too.

but the big one for me, which you may have seen from my diaries on the site, was pizotifen. i had a terrible time on amitriptyline, but from about day 3 on pizotifen, i started to feel better. have you tried that? again, speak to your neuro or GP about it.

i have one other question: you mentioned (i think) that lifestyle changes had zero effect for you. do you really find there is no difference between, say, a day going through a shopping mall or a busy airport with striplights everywhere, feeling stressed and having had no sleep, compared with, say, a calm day at home or outside in a park when you are well-rested? for me, one is definitely harder to tolerate than the other (guess which). if for you there is a difference, then there is a “lifestyle” effect. if there is no noticeable difference in how you feel between different “lifestyles” of stress/chaos/tiredness/sensory overload/travel compared with calm/peace/quiet & predictable life, then maybe the lifestyle changes really do have no effect on you. But i guess they must have some effect, right? the lifestyle changes i made were to dial right back on the things that were clearly triggering my attacks more than other things - especially stress, travel, poor sleep, sensory-overload places with strip-lights, etc. cutting back on that didn’t cure me. but it did make me “less worse”!

good luck


#29

I agree Benzos are a very risky endeavor. Some Dr’s will prescribe them at low doses, some to take only during attacks. I take a very low dose of klonopin, and honestly, it has really helped. The problem is, even if you take them as prescribed, in low dose, they eventually stop working and you need more to get the effect. I’ve refused to take more when my dose stopped working after many years. Now I take it only when I’m having issues, and need to function at work. I’ve personally had no withdrawal issues with stopping my low dose.

A few other things I thought I’d mention- have you tried the hydrops diet? Very much like the migraine diet but also low, regulated sodium intake. Also, my Neuro has said that if one is non-responsive to treatments over time, other internal triggers (ex. TMDJ, cervical spine issues, hormones) and/or other diagnoses need to be explored.

Help for me has been multidisciplinary. Meds have not worked alone. I’ve had to exclude some foods. But even with all that in order, I still get flares. Physical therapy for my jaw has helped in the past. As does a burst of steroids when it starts to go chronic. I also have c-spine issues that are thought to be the trigger/source of all of this. It’s been about 6yrs for me, with periods of “almost normal”. My case seemed more like Menieres but my VNGs have been normal so they say it’s not Menieres.


#30

@MissMigraine , it can get better! I am proof of that. Am I :100: %? Nope.

Something I must admit now that I have found a great amount of relief is that when I joined this forum last fall and read James’s story (@turnitaround ) and his success with Ami, or many others success stories (I was desperately looking at the success stories)… I thought “well, they couldn’t be as bad as I am”.
I did! I thought that! :face_with_hand_over_mouth:

Now having found an incredible amount of relief over the past few months, some may read my posts and think the same thing! :raised_hands:t2: I have come so far and am so relieved (and eternally grateful) for the improvement I have had for the past 3 months. I am not healed, I have vast improvements to make… but I can say that MAV absolutely can improve over where you are today. :sparkling_heart:


#31

What treatment has helped you feel better @Naejohn


#32

Good morning Miss Migraine!
I am on 50mg of Amitriptyline. Started on it in December and have made vast progress since then.

I also take the following supplements (per day dosages below):
2 MegaFood - Turmeric Strength for Whole Body
2 Bio-Kult Advanced 14 Strain Probiotic Supplement
4 Vitamin B-2 (Riboflavin) 100 mg
1 High Absorption Magnesium Complex 500mg
1 Magnesium Glycinate Chelate 150mg
3 Qunol Ultra CoQ10 100mg

Have you supplemented at all along your MAV journey? Also, have you had your hormonal levels checked? I am convinced hormones play a role in MAV.


#33

I tried riboflavin but it gave me upset stomach. I currently take a probiotic and a multivitamin, both don’t help. Vitamins aren’t really recommended on the nhs in the uk and i’m tired of stuffing pills in my body like a guinea pig. I’d rather be tested for deficiencies than blindly taking supplements. They are really expensive.

I haven’t had hormones checked, another thing the nhs isn’t interested in. My periods are regular so it’s not deemed an issue. Although i swear hormones play a huge factor for me.


#34

Understood. The B2, CoQ10 and Magnesium were all recommended by my Dr and are apparently recommended to all of his patients with MAV. He also mentioned hormones to me with in the first 5 minutes of seeing him. He is quite the expert in MAV, so no doubt in my mind that hormones are involved at least to a degree.


#35

I absolutely understand how you are feeling. There are many things that have “saved” others that seem to have absolutely no effect on me. I feel like MY especially difficult chronic migraine is clearly just a really hard case that responds to no treatment. But of course this cannot be true; others have had equally difficult or even harder experiences. And there are some things that have brought some improvements, no matter how minimal.

I often do have what I think you are describing, a sense of hopelessness that things will never improve and that I will be stuck in this horrible state forever. There are a lot of tears when that thought is in my mind. But then I consider some new avenue of treatment or some other kind of change and somehow my hope renews itself a little bit (guardedly though; my expectations are low but I enter each new treatment with optimism and faith). It feels like a little miracle when that hope comes back, even if it’s temporary. And it makes me a better partner and easier to be around.

I think what I need to try to find more consistently is a sense of acceptance that is not coupled with despair—things may be like this for a long time but that my life will be okay even if they are, and I can look for other treatments that might work as I go. This is hard, since there is NOTHING about my life that is acceptable to me now (I feel awful most of the time, can’t work, have no social life, am 50 pounds over my normal weight, plus marriage has suffered). But it’s so draining to be crying and grieving all the time. It is as though I have to learn to be okay with a situation that is in no way okay to me—my mind and heart are 100% against this. But I think it may be the only way to find an existence that is sustainable.

My new treatment thoughts, by the way, are potentially Aimovig (provided I navigate the bureaucracy over the next few weeks) and CBD oil, which I tried for the first time earlier today. Not sure how it’s working yet though my head does feel a little fuzzy and weird (in a slightly different way than normal), so if this message is gibberish chalk it up to the vape pen.

Wishing you a good day and some relief of some kind in the near future. There are many on this board who are walking the same road as you and empathize.


#36

I can agree with the super sensitive to everything feeling. I had a fallout with Claritin last summer (2018) that gave me all the “bad side effects” listed and the continousness for hours of agony where you want to just dispel it. I can fully understand how you felt each day with Ami continuing that dreadfulness building in strength (no pun intended).
I’ve almost had this condition for 2 years now. I had a slight remission for a good week and a half late Dec 2017 to early Jan 2018, but then had my eyes dilated and it kicked the migraine and tinnitus back on… then took an antibiotic for 2 days and it made my right ear switch up to now have issues alike my left ear… hoping for relief once again.
So I fully understand how you feel. Just remember, we’re all in this together and we’ll hear you vent it out and understand… and hopefully we all have our day where it goes into remission and stays away, even if we don’t have to take meds to make it go into remission (I was only doing vitamin B2 and D3 daily).


#37

@lsengarai just wanted to say thank you so much for this message because fijally you are someone who understands! I could cry just reading your message because it’s exactly how i feel. There is no part of me that can accept this condition. How can i accept being in bed every day unable to do anything at all. That’s not life, it’s survival. No offence to others suffering with mav but if you can’t manage to work or even move about the house doing chores etc, or aren’t able to read a book or actually have a shower, what is there in a life like this that’s acceptable? I do not want to be bedbound all my life, thank you very much. I do not accept having to spend a life like this because who the hell would want to live like this? I’m not physically well enough to attend regular councelling sessions, i spend about 4 hours a day with eyes closed, trying not to move, trying just to exist with the dizziness when it gets bad until it subsides to become more moderate and less severe. I try to focus on the possibility that i will not continue to feel this bad, that i will find successful treatment that allows me to have quality to my life that isn’t there right now and then i will be happier, i won’t always be bedridden. Because that’s the only life i can cope with, the only life i want to live. The fear of being stuck like this, in this severity, is something i just absolutely can’t accept with every fibre of my being, like you described. I just have to try to accept it until i do feel better. It’s the possibility that i might never feel better that scares the hell out of me. And it feels like a real possibility, when so far treatment has not helped and triggers are unidentifiable. Forums feel like absolutely everone gets better through diet, lifestyle, exercise or pills, and if they don’t work you’re doomed. Bit i know this isn’t true. Actually, diet and lifestyle only helps less than 50% of migraine sufferers. Not everyone is triggered by stress, inactivity, diet etc. Many migraine sufferers have triggers no one can identify. Stress management, sleep routine etc helps less than half of patients and so i am not a rare, doomed case. There are others suffering like me and there is hope, i have to remember that. The internet doesn’t reflect reality and i have to remember that those finding success through the standard treatments are obviously going to tell their story online, those finding it harder and more illusive are just not sharing their stories, or are still searching. There are many more people out there unresponsive to treatments than it seems online. I am not to blame for feeling this bad, its not my fault, i’m not doing it wrong etc. I have to find what works for me, not what works for others, what works for me. And i won’t give up until i find it, until i get my life back. I think it’s important to channel that absolutele misery and inability to accept this life as a driving force to fibd treatment, to not give up, to not accept that life will always be like this, because it won’t.

Sorry for this rambling post, i just wanted yo put my thoughts down and hope that message helps others with this condition. Thank you so much for your message, it really helped me and i can’t express to you how reassuring it is to know someone understands.

What you said “feel like MY especially difficult chronic migraine is clearly just a really hard case that responds to no treatment. But of course this cannot be true; others have had equally difficult or even harder experience” is the most accurate thing i have ever read about this experience and describes exactly how i feel sometimes. That fear of being unresponsive to everything, of being an especially difficult case and could end up being told that nothing can relieve symptoms is such a real fear. Ironically, the consultants NEVER made me feel like that. They acted like they had seen people like me a million times before and that this would not last forever, i would feel better. It’s being online that makes me feel worried, being amongst other sufferers and reading about migraine treatments that pretty much tell you that everything you’ve already tried is all there is available, but obviously that’s not true. The consultants have knowledge and expertise and treatments that are not written about online. The Internet only provides you with very general info about conditions and treatments. Consultants spend years, decades, studying and gaining experience through their work at how to treat patients. We wouldn’t pay them so much if all they knew could be googled.

Xxxx


#38

@Space_Cadet thank you so much for your message, its very reassuring to know someone understands. Its not helpful to be told being so sensitive to meds is “extreme” and am i sure it’s not anxiety? It’s a bit of an insult, if i’m honest. It’s very reassuring to know others out there gave reacted like me, are struggling like me, that i’ve not got it worse than everyone else, that others understand. Thank you.


#39

Hmmm … I think you’ve rather over-reacted to my statement. I was simply offering an alternate opinion. If you come to a forum to talk about your issues, then expect to get some varied opinions. I’d urge you not to so easily take offense and be careful how you interpret things. I gave you that opinion in good faith.

Anxiety is one possibility. Anxiety can have some rather significant effects on the body. This is well known. I’ve experienced anxiety attacks due to MAV so I know this from personal experience and it’s very common with this condition as it puts you physiologically on ‘high alert’.

A lot of people fear medication and this can lead to some anxious reactions to it. People are right to be wary of medication but some people’s reactions can be quite extreme to it based on simply the idea they are taking such strong substances and the fear they have of what side effects they may get.

Alternatively, you may well have had biological reaction to every single medication you’ve been prescribed. In that case you are very unlucky, but I am not qualified to say if that’s likely or not.


#40

“very unlucky” indeed. I think one aspect of MAV is how much it differs between us all and we get to know our own bodies and what impacts us and wgat doesn’t. Therefore, when others question that, or can’t share that sane experience because they haven’t had that physical reaction to a trigger, it can be very frustrating ajd feels insulting, when you know your own body and the very real physical reaction you had and you know it can’t be dismissed as an anxiety reaction because you know the difference, you’ve felt it. I know your motivation waa trying to be helpful and my feeling insulted is based on the frustration of having this condition and being misunderstood. So no hard feelings :slight_smile: