I was wondering if anybody could shed some light on whether or not they find their migraines to have changed in their 30’s?
I’m just coming out of a lengthy relapse (I hope) and I’m still migraining but now I have a new symptom that is really uncomfortable and a little disorientating. My hearing seems to be lower in my right ear and there is almost a feeling of hollowness in the left. I can hear but there is a definite change in feeling between the two. I had this for a very short time whilst housebound a couple of weeks ago but now it seems to have appeared again along with yesterdays migraine aura, I’ve woke up this morning to the same… it’s almost like when I’m speaking it’s too much for my ears and they feel sensitive to the sound of my own voice let alone any outside noise.
Mine definitely changed at 37 - classic to vestibular. Urgh
Leading up to this, I found them actually less intense. Probably because triptans worked so well. I was triggered by perfume and hormones only. Now… it seems more trigger it.
I wonder what the 40s hold … eek!
The hearing loss is interesting. At my worst, I had muffled hearing - and could hear my own voice when I spoke. I had ear fullness badly.
I wonder whether you could investigate meniere’s. This might have begun and might explain things. I know hearing loss is common with that.
We must draw a distinction between “Meniere’s” and “Endolymphatic Hydrops”, they are associated but not synonymous.
If you don’t have persistent low frequency hearing loss then it’s probably not Meniere’s. Meniere’s also typically includes the symptom of “roaring tinnitus” during attacks … this isn’t a typical “MAV” symptom …
I would therefore add though … look into Endolymphatic Hydrops … sometimes called “Secondary Hydrops” as it is due to an underlying condition to be identified. It’s the diagnosis I received twice when looking for further opinions beyond my initial oto-neuro when frustrated that nothing made sense.
There is a good chance that the ‘muffled hearing’ is temporary, reversible over pressure in the inner ear dampening the vibrations of the oval and round windows.
Imho, be very wary of:
diabetes and blood sugar issues
hypertension
chronic stress and anxiety (which it is thought can lead to “renal fatigue” and knock on effects)
driving ear problems
I fear “migraine” is a dead-end that only involves further pill popping …
Absolutely James, I don’t have this ear problem all the time, it’s literally just started with this last relapse. I have been having much better days, my vision seemed to have cleared up but yesterday a roaring migraine with this intense sensitivity to noise and a distinct change in my hearing, with some (fullness which I get often) hopefully it will sort itself out like It did yesterday. It’s forever changing… but these days my migraine pain is so intense and I never even used to get headaches. I’m finding neck pain to the be the worst of all.
I am going to mention Hydrops to my Neuro - she wants to see me in a month or so to see how I have been getting on. Thank you for that
Oh dear… just when you think migraine couldn’t possibly screw you over even more it goes and gives you fresh new symptoms to fear! Worst of all the pain for me in my 30’s - is the Ajovy doing anything for you yet?
I have thought about having a hysterectomy literally because I don’t know how to help my body try and recover from constant migraine! I’ve started the mini pill so having to see how that pans out. I thought I was onto a better stage but this has ramped up now! It’s always something.
We must draw a distinction between hearing and balance, whilst at the same time recognise they involve the same organ.
If it’s hydrops you might not know you have it, because the hearing is not the only thing it can upset, the rest of the time it might just be messing with the vestibular senses and not affecting hearing. It might also fluctuate which is the reason the brain might get irritated. It might be at healthy levels some of the time, but its the fluctuation which will confuse the brain, as the sense will change response over time to something the brain is not expecting.
Don’t get too hung up on ‘hydrops’, but I would make sure you are:
checking blood sugar
blood pressure for signs of hypertension
resolving any stress or anxiety in whatever way you can - at one point I saw a therapist
I am actually on a drug now daily for my ADHD which should hopefully help any stress stimulation that my brain cannot filter without the meds. I do feel much more calm and able to focus more.
I’ll start checking my blood sugar too… I don’t do this
Thank you for your information James - it’s really helpful
Your Neuro will probably laugh at my suggestion, I fear, as it sounds like such a dramatic word. But if you actually look into the physiology you realise how interconnected and delicately balanced parts of the body are, especially the inner ear which is so central to the symptoms.
I think it is fair to say medicine is frustratingly inadequate at solving our chronic issues presently, so it is important to keep an open mind and try to conservatively cover all the possible bases.
Imho, there is no harm in making sure you have healthy blood sugar management, blood pressure, heart, and reasonable stress levels. Nothing good can come of any of those things being off kilter.
I am not sure whether that would be a good idea. You will get induced menopause and for me, my problems started at menopause. Please get some very good advice before you take this step.
I’m sorry to hear that Springer, I think it’s difficult to decipher for me personally. It all started for me when I was 18 so I guess you could say that would coincide with my fertile years of course but I don’t think it’s primarily the reason ( for me at least) not sure I’ll ever find out tbh
I know, such a mystery. Do you think there may have been a particular trigger at all for you when you were 18? Or did it just hit you one day out of the blue? I’m getting another hormone profile tomorrow, let’s see if any light is shed then!
I do remember when I was maybe 12 going to this evening class at a church and I was always running around like crazy and I remember I had a very weird moment, I can’t remember 100% but I think I told my mum I felt dizzy and strange all night. Not great with rides either that make you dizzy! Then woke up one day with horrendous dizziness that was horrific and I haven’t never been the same since, person or equilibrium! It took so long for me to get diagnosed as I have ms too so that’s what they thought were causing the dizziness but it was MAV all along.
Ah Kirsty, you’ve got a lot going on haven’t you, especially with the MS too, and you mention ADHD. I wonder how all these things interact. Sounds like the signs were there from earlier on. Sorry to hear it took you so long to get diagnosed! I remember being fobbed off with stress and anxiety for ages, or just shrugging of the shoulders!
From my research I’ve also noted that a lot of the medicine might actually be contradicted in that it can potentially exacerbate the underlying physiological issue, if it were recognised as such.
The only answer is, of course, to somehow eliminate stress and that includes somehow not getting stressed by the condition either. Easier said …
James I absolutely agree, childhood ADHD undiagnosed, a father who was very ADHD lots of trauma and I was very traumatised as a child, stress was an everyday occurrence and to be very honest I don’t know how it didn’t happen to me sooner. It was only when the stress lifted and I moved out of home I got I’ll. I don’t think that is a coincidence!
You joke, but that is quite literally the plan I have put in motion! At the moment I’m feeling a bit stressed about flare ups making me isolated in the middle of the Worcestershire countryside and not being able to drive!
In all seriousness, when its all ready, I am hosting a MAV camping weekend - minimal stimulation, maximum relaxation and peer support. I am a psychotherapist by the way, so hopefully can be trusted
Also Kirsty, you wont believe how many clients report coming out of a perpetually stressful environment and immediately getting an autoimmune illness. Its like the body can be in survival mode until it gets the chance to relax and then turns on itself because its so used to being in constant survival mode.
stress relief and live off the land…