hard to describe the feeling. but longing for understanding anyways...

hi i just made this account im looking to connect with fellow comrades dealing with migraine and vertigo/dizziness. i have vestibular migraine, have had for about 10 years and im 25.

this sucks. i have a strange feeling in my soul. an episode started for me today and will likely continue for a few days, although i am always open to the idea of my episodes getting better and shorter they often dont change much. i just started monthly avovy injectable so am hopeful. this is in addition to effexor, hydroxyzine, propanalol, pregabalin, and using devices such as truvaga, relivion, and cefaly. i wont list all the other things ive tried. haha! it feels dangerous to have hope sometimes, but without hope i dont feel like myself. i look in the mirror and don’t recognize myself when im having a migraine and vertigo episode.
i would like to connect with people who understand. the people in my life dont deal with this. i feel separate from them, like i have to separate myself. it is too painful to explain all the time to people who will never get it.
do you have the strange feeling in your soul too?

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@tiny Welcome to the forum! We’re glad to have you here. Everyone in this community is really friendly and eager to help. If you haven’t already, I highly recommend reading the Welcome Topic (Welcome to mvertigo!) and the posting guidelines (Please read this before posting). These resources will provide you with important information and guidance on how to navigate the forum effectively. Feel free to reach out if you have any questions or need support. Remember, you’re not alone in your experiences, and there are people here who truly understand what you’re going through.

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Hello, Tiny, and welcome to the club you never wanted to join. It just stinks, doesn’t it? You will find fellow-travelers here on this forum who understand your physical and emotional challenges. I agree that it’s difficult (often impossible) for people who don’t experience vestibular disorders to fully understand and empathize with our situations. And that’s probably true for many people who live with chronic health conditions and disabilities. You are so young that it must be especially discouraging. It sounds like you have a medical team who is supporting you, which is fantastic. I hope you have a friend or relative who acts as your advocate and helps you navigate the complex medical systems.

I know what you mean about having a strange feeling in your soul. There have been times when I just couldn’t figure out how and why I was supposed to move forward in life. But somehow I have. For me, my best coping mechanism is to focus on what I CAN do, rather than what I CAN’T do. I try to notice the beauty and love around me, to be grateful for the good things in my life, and to experience joy in the moment. With the help of competent, caring medical practitioners, and a heavy dose of patience, I have slowly but surely gotten so much better, and you will too.

Tiny, you might consider seeking out a mental health counselor who has experience working with people with disabilities (I once saw a counselor when my symptoms were totally out of control and she just didn’t get it – not helpful). And if you find yourself sinking into a dark place, please let your doctors and family know so you can get appropriate help.

Take advantage of this forum and the many resources it provides. There are other good websites that can help you stay informed, so don’t hesitate to ask for information here. You are not alone, my young friend. Welcome.

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thank you :slight_smile: i appreciate it

Welcome @tiny

These illnesses get us into a bad place, but there are also direct consequences of vestibular conditions we need to be mindful of.

One of my first symptoms was “depersonalisation” which immediately makes you feel like you are no longer you, but somehow looking down on yourself. It’s hard to describe. Many sufferers get these odd feelings.

Then on top of that you have to deal with depression, lack of hope, anxiety … it’s very challenging indeed!

As per @sfnative, do share these feelings with your care provider and do seek specialist help to specifically target any negative or difficult thoughts.

I hope the site is useful and brings you hope as significant recovery is very possible!

It is a difficult condition and l understand the idea of hope that something will finally work. For me the side effects of the medications were worsening the condition. On the one hand you try the recommended medications but then they always list dizziness as a potential side effect. My balance ENT consultant advised that for the vertigo none of the medications worked. The neurologist told me not to use too much medication as you get overuse headache. Have you tried magnesium and vit d to help. I think this condition is hard for others to appreciate as externally you look fine. Sending my best wishes and positive thoughts to you

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Amitriptyline eliminated my dizziness at a surprisingly low dose.

That said, imbalance persisted (this is not the same as dizziness).

Yes, that’s my experience. Vertigo was never controlled by medication, but the good news is that I have either compensated, or my vestibular apparatus has since recovered sufficiently for vertigo no longer to appear. I haven’t experienced proper vertigo in years! (touches wood!!)

I believe that medications have a role and for some they do help. However, l believe that they can hinder recovery because the system does need to compensate and readjust to a new normal.

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Yes, absolutely and some medication is worse than others in inhibiting compensation (e.g. Benzos!! :grimacing: )

I have to say I was fairly brave and came off medication well before my symptoms fully subsided and I believe it was that step that helped me make significant further progress.

That’s not for everyone though. I believe migraines may hamper or even prevent compensation, so if you don’t have those under control, medication to control them at a reasonable level is a good idea, because I believe progress with migraines is going to be very tricky.

Let’s be careful about implying that medication is to be avoided or stopped. While it may be true for some, particularly those with milder symptoms, it certainly is not for others. Visitors to this page run the gamut from experiencing mild (albeit scary) dizziness to daily, debilitating vertigo. For people like me drugs make the difference between maintaining my independence and living in an assisted living facility. Drug side-effects are something I gladly tolerate in order to live a normal life.

I have achieved relative stability and titrated off all medication in the past only to have the beast come raging back out of nowhere years later. I suspect I’ll take anti-seizure medications (which largely control my vertigo) for the rest of my life – for me the side effects are better than the alternative. I’m happy for those who have found permanent relief from VM, but many of us are not that lucky. Let’s always keep that in mind. Peace.

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I’m not implying, I’m saying.

Medication can and should be stopped if you don’t need it, and that was actually suggested by my oto-neurologist, who turned out to be right. She said “it’s not healthy to stay on these forever”.

There was nothing “mild” about my symptoms, I was literally visiting hell, just read my diary!

Medication is not acting as a cure here, it’s modifying the system to minimise symptoms, but it absolutely can go too far and affect compensation.

The taking of medication, especially long term, should be decided upon on a case by case basis in conjunction with your specialist care provider.

I totally accept some people prefer or need to remain on medication.

I definitely benefitted from coming off it (after 1.5 years)

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Maybe because I’m 73, almost 74, and this is a relatively new “condition” for me (5 years and counting), I feel the need to rush through the solutions whether it’s meds or something else. I’ve been extremely healthy my entire life and was enjoying the benefits of that. And now…I’m worried about my future. For me time is of the essence and if it takes medication to get me there I’m game. If I was younger I might have more patience but right now I have grandsons in CO I need to spend time with. Fear of vertigo is holding me back.

Benzos have their place in certain patients, and certainly don’t inhibit compensation in the dose ranges that are normally used to treat VM. The common threshold is 5mg diazepam equivalence, but that level is rarely achieved/prescribed from what I’ve seen from folks over here.

Whether or not they have a place in your treatment ultimately depends on what hidden subcategory of disease your vestibular issues fall into: I think there are people here with central nervous system vertigo and others with peripheral, and its impossible to differentiate which as they’re grouped under the same syndrome, and the same treatment “works” for each in terms of treating symptoms. Although for those with CNS vertigo, Benzos certainly not only treat the symptoms but also the underlying cause, which is likely why a lot of people who undergo consistent treatment with Benzos are able to come off of them after some time with their disease in remission. If “compensation” were the cause of their recovery, that wouldn’t add up.

Personally, I think the whole “compensation” thing is rather silly when it comes to vestibular migraine; if compensation were really key, then VRT would be the mainstay treatment for it, and there’s meager evidence for its use at best, and for many patients it makes them a lot worse.

The point of these prophylactic medications isn’t to mask symptoms, but to re-calibrate the underlying circuitry in your brain that’s causing the dizziness and nudge it ever so closer back to normal. These effects are persistent, although saying they’re because of “compensation” is probably inaccurate. Remember, this is a migraine disease phenotype – there is no “compensation” with migraine besides trigger management and gradual elevation of the brain’s baseline threshold to trigger migraine, which is accomplished by medication/lifestyle changes.

If your brain could achieve this itself through compensation, it wouldn’t be a disease. it would be a normal homeostatic feedback loop