Nurse new to VM

[flutters]

That’s the view from the Sunrise area in Mt. Rainier National Park. My view from home is a bit farther away (an hour) but still jaw dropping.

[Nathan]

@ElizabethHope18

I feel hollow and very hopeless right now. Never in my wildest dreams did I imagine having an illness that affected my cognition like this. I think that has been the hardest part. The brain fog… I can take a lot of pain but not the loss of control or feeling like I’m not fully present. This has been truly heartbreaking so far

Hey Elizabeth, I’m sorry for what you’re going through. I can totally relate to the changes in your cognition, the brain fog, the anxiety, and the way you are feeling right now.

I wanted to let you know that even though it takes a long time, things DO get better. Unfortunately VM doesn’t get better in the space of days or weeks, but you will get your life back together eventually.

Since you only got diagnosed late last year you are probably in the worst part of this right now, because you are still getting used to the way this condition messes with your head. Going forward things WILL get better - it just takes a lot of patience to let the bad days pass and the courage to keep getting up every morning and push forward.

I don’t post here often but when I do I always try to reach out when I see posts like yours, because it makes me feel less alone to know that other people can relate to the awful, weird, unpleasant, and uncomfortable experience of having VM. So try and keep in your heart that you aren’t alone in going through this, and if you ever need support or advice you can always find it here.

Best of luck in your recovery!

[turnitaround]

Yeah, thanks for chiming in @Nathan. So true.

I remember the living hell just. It’s like nothing else you will experience in your life and I hope once you are over it (you will get there!), you will never have to deal with it again like it is now.

It may take you years to get through it, but get through it you will! That said, within a few months you will have got well through it, especially once you find the right regime.

[Onandon03]

@ElizabethHope18

I think about the 13 hours that I spent on my feet all day as a nurse in sometimes very stressful situations and I can’t imagine doing that for even an hour right now.

Not now no but, as a nurse, would you expect a colleague with say a broken leg or maybe just two weeks out of ICU following Covid, to do a stressful 13 hour shift either. Of course you wouldn’t. Because you are ill every bit as much as they are.

@ElizabethHope18

I see people in my neighborhood going for jogs outside (as the weather improves) and think, will I be able to do that again one day? I can’t help but get a little tearful

I had at least 18 months with such severe photophobia I couldn’t leave the house and indeed daren’t even open the curtains to daylight. I remember peeking out at people walking by and being just like you, tearful. But that has past for me and will for you too in time. Take time to grieve then move on.

@ElizabethHope18

Did you start out slow on it or did you start on some higher standard dose of this medication. It has come up as an option with my first neuro, but he just was a little worried about my bp going too low.

I started 10mg three times daily and increased weekly by 10mg. That’s low. My doctor did that not because she understands the sensitivity of our brains but simply because it’s standard practice for her for getting people on to betablockers. Best to lower the heart rate slowly. Obviously you cannot titrate easily on extended release but that’s not used much in England. Immediate release is considered the better option for prevention. Propranolol will make people prone to feelings of depression depressed and at quite low doses. It also reduces tolerance to exercise. Two good reasons for you to avoid it I suspect. Although it’s an excellent reputation for stopping migraine my understanding is most doctors avoid prescribing it to younger people because of its effect on exercising.

[flutters]

The hardest part for me has been redefining who I thought I was. I loved my work. I learned to let some aspects of me go and redefine my worth outside of work. I still work but my identity is no longer wrapped around it.

Np school is not coming to a shattering halt, but perhaps a medical pause. It was very painful for me emotionally but I had to put a huge amount of my life on pause for a long time. There comes a time when you get to decide to hit play again, though by that time you’ve also had time to examine what’s important, truly worth your energy and attention. Some things I dropped I won’t go back to even though I used to think they were essential. That space in my life opened room for new things.

VM strips you to your core. In doing so it gives you this rare gift - you get to see the metal you’re made of and you get to build yourself back more competent, stronger, wiser, more resilient and more beautiful than before.

[littleseabattle]

Hi Liz,

I have yet to go through this whole thread, but wanted to reach out quickly to say that I am also in the Philadelphia area, was recently diagnosed with VM (January 2021), am a registered nurse (had to stop my job in December) who recently completed my NP degree (December), and I am also turning 40 in a month. I feel we have a fair lot in common! Your posts that I have read resonated so profoundly with my current situation re: loss of professional self/caregiving role, navigating healthcare as a patient, and the general experience of physical debilitation and attendant anxiety/depression (especially in the context of the pandemic). I am so very sorry you’re experiencing this.

If you need any local support, whichever way that would feel comfortable to you, I’m available! Wobbly walks around the block with sea bands and sunglasses and such. Support with NP school (a battle in itself) or just to talk shop about docs and resources. It would be nice to know someone close by going through something so similar.

I was dx at HUP in the neuroscience department after an MRI and balance/audiology testing ruled out all other differentials. I am in VRT at Good Shepherd in Rittenhouse with a wonderful PT and can pass along her name. She has significant experience with migrainous patients and I feel she is pacing treatment appropriately given I am definitely not stable yet. I am also seeing a chiropractor weekly in South Philadelphia who has experience with vertigo. Previously I was in visual PT at Wills Eye Institute as I also had significant visual deficits and could not read for months.

Med-wise I’m on propranolol 40 mg BID x 2 months now which I tapered up much more slowly over about a month (it was fortunately not ER) while monitoring my vitals. I found the biofeedback from the sympathetic blockade to be, for a time, helpful for my anxiety. It did help to reduce my VM symptoms but I am still easily triggered by weather changes, foods, sleep disturbances, and experience 24/7 rocking/swaying with tinnitus. Thus far, I’ve cobbled together a treatment plan on my own through trial and error and am eager to find a provider familiar with VM to provide some structure for long-term clinical management.

I have often remarked over the past 4 months that I am accustomed to and can handle pain, but not the loss of my cognition and my mobility. All my plans to take the boards and transition to a clinician role are now indefinitely on hold. I cry a lot, too, and it’s hard for me to talk to friends and family about this because it’s so tangled and raw. But, I have faith we’ll get back to helping others and our life’s purpose again.

Sending you strength, hope, and empathy,

Rachael