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New here - non-typical VM

Hi All. Very happy to discover this forum to read about other peoples’ experiences. I’ll try to keep my story to the length of a short novel :stuck_out_tongue: I’m a 40 year old female in Australia.

After a stressful few months with a long term relationship breakdown and being unhappy at work I got what I thought was a sinus infection. I had facial pressure and congestion on the right side of my face but no mucus. I also had signs of anxiety such as tingling/weakness in the left arm, that feeling in my chest etc during particularly anxious moments.

After about 6 weeks with these sinus issues I developed short stabbing pains in the front/top right of my head. They only lasted a few seconds but were intense. On my worst days they were nearly hourly, but at least 4 times a day. I also had some pressure in the right side of my face. I went to the doctor and she prescribed a nasal spray and some antibiotics to try if the spray didn’t work. I had a bad reaction to the nasal spray after 2 days of use (nasonex) which included photosensitivity and bad anxiety. So I tried the antibiotics instead.

After 7 days of antibiotics I thought I felt slightly better and my headaches had reduced in number. But they seemed to flair up again. So the doctor gave me another 5 days of antibiotics with the same result. I told her that my sinus type symptoms had reduced but I was still getting the sharp head pains along, now along with some tension type headache. I do not have typical vertigo with any feeling of myself or the room spinning, but have frequent dizzinesses / lightheadedness. I also had persistent hypertension (high blood pressure), so she sent me for a CT scan, a MRI and I did a 24 hour blood pressure monitoring check.

The blood pressure test showed mild hypertension. The CT scan came back all clear for my sinuses, but the MRI report showed more white matter hypersensitivities than is typical in someone my age. That was quite scary and of course I was thinking the worst which increased by anxiety. But, I got a neurologist appointment and after reviewing my results and listening to my story he diagnosed me with vestibular migraine.

I do not have a history of migraine or headache until this recent onset, but about 7 years ago I had an episode of dizziness (without headache) that lasted a year and went undiagnosed despite many tests and ENT appointments. It was put down to some sort of inner ear infection that had caused damage. That period of time caused me intense anxiety but it eventually went away on its own. My mother has a history of migraine with aura.

He feels that the episode I had many years ago was probably the VM as well and that the ‘sinus infection’ was actually the migraine which causes similar symptoms and is often misdiagnosed. The white matter hypersensitivities are nothing to worry about as they are not typical of the ones caused by MS and the number can be expected for someone who smoked for a few years (when I was younger) and gets migraines (allegedly).

He prescribed me candesartan for my blood pressure and its additional preventative effect on migraines. I started on 4mg and have been working up every few days to 16mg which I have no been on for 2 days. I can go up to 32mg. I’m also on migraine prevention supplements with Q10 and magnesium. He prescribed me some optional abortive meds too but I don’t want to take them because I want to monitor if I am getting less episodes and severity.

I started treatment 2 weeks ago but weirdly I feel like things have gotten worse not better in the last week. I have developed a weird weakness and tingling in my left leg/foot which started as a feeling of heaviness for a couple of days (before I started the meds) and a bit in my arm which comes and goes (and triggers more anxiety and the occasional heart palpitation), I feel like I am nearly constantly dizzy or lightheaded, and am having trouble looking at screens for too long. I am still getting the head pains at the same frequency (sharp not throbbing) but had a flair up yesterday where I had my first proper vertigo episode. I laid down which felt better and it passed in about 15 minutes but I had sharp pain behind my right ear with this one which I’ve never had before.

I know I probably need to be patient and see if the meds kick in now that I’m at a reasonable dose and I’m fortunate enough to be on holidays for another month. But I am starting a new job which is office based and I am concerned about how this will effect my ability to work and not feel terrible the whole time! My anxiety and overthinking is peaking because of all this and I am trying to reign it in but it is hard.

Thanks for listening!

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Hi and welcome. Glad you found us but sorry you had to.

Not sure who gave you the ‘non-typical’ VM diagnosis or if indeed anyone did though I dispute it totally. From your history you sound very typical VM to me. Many start with the false assumption it’s ‘sinusitis’ and many (me included) would never have considered themselves migraineurs not in a million years for the very simple reason they don’t/didn’t ever experience migraine headaches. Taking myself as an example I don’t even have a familial connection to migraine such as you do. So in a nutshell I think you’ve disembarked at the right station so to speak.

Good luck with the Candesartan. I take Propranolol another blood pressure medication. These drugs tend to cause far less side effects on start up than other classes but they are not totally without them. Candesartan is reputed to be a useful preventative. @gidlabu on here has had great success with it relatively recently however its not as widely used as some of the others so I’ve just checked up on its possible side effects (I’m no doctor, just an interested sufferer and moderator) and there a possibility there’s a connection so I’d suggest speaking to your medical provider. The condition in itself morphs over its course so sometimes it’s hard to distinguish side effects from natural condition progression. It’s not unusual for people to have to try a number of drugs before finding the one they find most tolerable so don’t worry too much if you are forced to have to make a change. Not sure whether you already know this but would just mention that the preventatives only work at reducing future attacks. They don’t control current ones or any ‘in the pipeline’ unfortunately and its perfectly usual for people with chronic VM to have ongoing vestibular symptoms particularly dizziness/imbalance 24/7 for long periods.

You seem pretty much on top of it with regards to coping. Can only suggest you try not to let the anxiety get the upper hand which I’m sure you’ve already realised. All the very best on your VM journey.

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I agree. This sounds like typical VM. Even typical for us is still plenty weird.

I like candesartan, though I’m on a really low dose.

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Almost everything you post is so familiar to me… the initial onset of symptoms at a time of misery both at work and in relationship… the ensuing lightheadedness and headaches… and the impending doom of a new job starting imminently! When my symptoms flared up two years ago I was due to start a new job two weeks later. In the end I couldn’t, and dropped out, which was humiliating - but it was for the best in the long run, as I found another job that I could do, and which I really like.

You very sensibly are focusing on medication, supplements and so forth. But I wonder if at times you zoom out and take a broader, more holistic perspective? Does it feel a bit like your body for months (or years?) was under huge stress and pressure, and you valiantly powered through and remained “strong,” but eventually everything fell through and you developed these chronic sensations? Are the weird sensations of headache and lightheadedness in some sense your body’s way of talking to you, perhaps its way of telling you how unhappy it is with everything that’s been going on, its way of begging you to slow down, stop, relax, let go of the tension you carry around with you?

I wonder, if you sat down, closed your eyes, and gently asked your body what it wants… what would it tell you?!

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Thank you for your insight. Yes, you’re right, I labelled myself non-typical as I don’t have a history of migraine nor get proper vertigo but it sounds like that might be more common than I realised. I’m trying to decide if I actually feel worse on the candesartan but like you said, the VM seems to be always evolving so who knows!

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Sorry to hear you’ve been through the same thing as me. I totally hear what you’re saying about the holistic perspective. The challenge is to try and reduce anxiety and relax whilst dealing with weird things happening to my body including trying new drugs with possible side effects.

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Welcome! Sorry to hear about your rather stressful situation. I’m also a newly diagnosed VM patient (Jan 2021) with prior chronic sinusitis.

You are doing a really great job managing the new diagnosis and all the medication trials while recovering from a trauma. Give yourself lots of gold stars for self care :star::star::star::star::star:

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