Nurse new to VM

New here, let me introduce myself 🤝
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Hi,

Just want to say that I really appreciate the fact that this website even exists and all the supportive posts I’ve read from others experiencing VM. I am hoping maybe some of you can provide some guidance on my next steps.

  • hx: menstrual migraines (horrible right-sided pain, light-sensitivity, loss of appetite) have tried different abortive meds in the past and was able to get approval for Nurtec this year which has worked quite well.
    -Never has dizziness/ vertigo with migraines before.
    -1st symptoms occurred Nov 2020, floor and wall spinning at work while trying to chart. Lasted about 1 min and subsided.
    -Since Nov 2020, have had the following: head CT, Brain and cervical spine MRI, Audiogram and tympanogram. All pretty much normal/ unremarkable. Brain MRI showed some patterns consistent with migraines.

My daily symptoms since Nov 2020:

-feel fine when lying down or sitting up. Once I start walking around for a while I have varying degrees of dizziness, forehead pain (almost like a sinus headache), and brain fog (I think vestibular system in overdrive and hard to multitask).

-I have never had any of these issues in the past, just really shocking and debilitating right now. I used to be very active and exercise 5-6 times a week, now I am lucky to make it outside.

-driving short distances ok, highways (straight lines, fast trucks flying by) have turned into a nightmare.

Current treatment plan:

-Neurologist wanted me to start on 10 mg nortryptyline but I declined since I have a history of supraventricular tachycardia (rapid heart beats) and looks like side effect of that med can be increased heart rate.

-Neuro changed course and wants me to do a 10 day “burst” of 500 mg of depakote. I take one pill every night for 5 nights me then one every other night for 5 nights. His thought process is that since I haven’t ever had VM before, maybe this can break me out of this dizziness cycle right now.

-If this doesn’t work, he said we will move to verapamil, which I’m not very excited about.

-My anxiety is very bad right now. I have started taking clonazepam 0.25 mg as needed (up to
Twice a day) and it significantly reduces dizziness, sinus headache, and brain fog.

-I started vestibular therapy but don’t feel like it’s making much of a difference.

Questions:

  1. Anyone ever hear of doing a short course of depakote like this?

  2. Does vestibular therapy make sense if I’m in more of an acute phase of illness?

  3. Anyone work in healthcare and have VM/ able to return to work? I am a nurse on a very busy unit and I’ve had to go out on leave. This has been absolutely devastating and I’m afraid of losing my benefits. I’m in school to become a family nurse practitioner (was supposed to start clinicals this summer) and I’m worried I may have to push everything off a year because I am so unwell right now.

  4. Any VM docs in the Philadelphia area that anyone can recommend? I read reviews on Dr. Michael Teixido (a neuro-ENT) who practices out of Delaware. Anyone have any thoughts/ experiences with him?

I am just hoping for any type of support or ideas from all of you dear people that have had to deal with this debilitating illness. Thank you.

Liz

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Hi Liz, welcome aboard. It’s a rotten thing to have to experience isn’t it. I hope you can find some answers to your questions and some company here.

I haven’t heard of a short burst of depakote before, however I’m not an expert at all. It’s an anticonvulsive med and I would have thought used for longer periods of time. I did a short burst of prednisolone steroid to attempt to break my cycle (to no avail), only one I’ve heard. But again, I’m quite new to all of this too.

VRT is best when in a medicated controlled state, not acute. It could make it worse. I would wait until you are feeling a bit better for that. I started late Dec after feeling better. I’m not sure it’s doing anything, although my balance is better??

I am not in the healthcare field, I’m a teacher. High pressure role, Year 12 classes, leadership role. It’s full on and very very busy. I couldn’t work either. I am starting again in 2 weeks after stopping in October. Wish me luck I’ll report back. I’m also starting a uni course too. God what am I thinking. If you can get this thing under control, yes you certainly can get back to work.

I’m not in US. I live in Australia, but always happy to chat and lift your spirits (after a small time delay)

I also have a high resting heart rate. What was yours when you were diagnosed with tachycardia? I’m on pizotifen and it has risen it slightly but I’m not worried.

All the best my friend

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Hi Belindy,

Thanks for much for your quick response. I think there’s this assumption by some that vestibular therapy can solve all these issues when in reality this isn’t a situation where some inner ear crystals have been displaced, etc. I like the therapist a lot but don’t want to continue on with this and spend $$ for something I may not be ready for yet.

Just curious, what meds have worked for you? I see you are on pizotifen. How are the side effects? Did you have to trial many others at first?

So my resting heart rate isn’t too bad (70s-80s), it’s just that I’ve had runs of really fast rates that I had a hard time getting back down to my resting HR. This was a few years back, but for instance I was working a night shift and HR shot up to 150s-160s while just sitting in chair documenting. I had a cardiac consultation, few tests, etc., and doc said this is probably a result of some abnormal electrical pathway in heart that is stimulated by drugs like epinephrine, caffeine, etc, can also be hormone-induced, dehydration doesn’t help either. His recommendation (since we couldn’t catch this on an EKG) was to just lay off caffeine, etc and continue to monitor it instead of going into a cardiac cath lab and try to ablate the problem area (sorry that’s a LONG answer to your question about heart rate :blush:).

Thank you for your kind words. It sounds like you work in a very busy environment as well and this condition makes it so much more difficult. I wish you all the best going back! I’m definitely going to be on this forum gathering more info, please let me know how it is getting back to work. :blush:

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Hi and welcome.

In answer to your questions and bearing in mind I am no medic just a long term sufferer and almost as long term researcher!

Yes, Depokote (sodium valproate) is a very old preventative. Has lots of side effects and these days in UK at least is seen as being old fashioned and outdated. That’s not to say it isn’t powerful and may work for many.

VRT is best left alone at least until condition is stable. Even then many find it impossible. The fact it can make MAVers much worse is virtually diagnostic. It doesn’t have that effect with other conditions.
Yes we do get quite a few healthcare professionals join up on here. @rosjane may wish to comment. Quite recently, end of last year, a nurse in my own region of England was back at work within a few weeks of quite a high dose of Amitriptyline one of the more popular preventative choices here. There’s a midwife, @Coffey6810, working on Topiramate. Lots of healthcare workers seem to be affected it’s just the right environment for MAV to thrive, all those fluorescents lights, shiny objects, strong smells not to mention shifts and all that stress. Must be like manure to a piglet! For the condition that is.

I am way the other side of the pond but I have heard of the consultant you mention. Sure I have. If you use the Search facility you may well find references.

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Hi onandon,

Thank you for all the helpful information and I will refer to the other nurses’ posts to see what has helped for them. The hospital environment could not be worse for this particular issue - the lights, alarms going off constantly, and overall stress level is very high caring for sick patients. I’m sure it is very difficult in many other lines of work as well that have similar atmospheres. I don’t live close to the hospital either and driving has become a real hurdle lately.

This short burst of depakote (only day 3 of 10) is making me drowsy (expected) and also seems to be causing some headaches after I take it. These aren’t my typical migraine headaches or even the tension-like ones that I have been getting when I move around a lot. It’s more like my head feels really heavy (like water-logged) and hurts deep within. Have you ever been on this med?

I will definitely look through the recommendations for practitioners. Thank you so much for your advice!

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Never tried it. It was suggested to me several times but I’m afraid it’s reputation rather goes before it for me. It’s very powerful stuff. MAV causes a very hypersensitive state brain and all manner of strange side effects can occur with most preventatives.

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Hi onandon,

Yes, I totally agree with your thought on depakote. I was very nervous taking it and still not convinced this is the best medication for me. At the moment I don’t have many alternatives though and wanted to at least try what the neurologist recommended as I can’t seem to get any relief. If this burst doesn’t work, I’m certainly willing to try something else but don’t want to be on this long term at all as I’ve read some horror stories about headaches, hair loss, other nasty side effects from this medication.

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My advice would be don’t Google anything about it until you have finished the course. Yes how it goes. Never heard if such a short course but I’m no doctor. Some run preventatives for 6 months miumum before coming off. Try to ditch the preconceptions. MAV once it takes hold can be persistent and it’s best to go with the flow. Untreated it can get much worse unfortunately. There re many alternatives. Somewhere on here there’s a list of over 100 possibles!

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Thanks you so much again for your quick response :blush:. It is so difficult not googling or web-md’ing everything right now when so anxious about these symptoms and so much uncertainty about how and when I can return to work in such a state. I’m so grateful for this forum and all the support :pray:

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You really need to keep that anxiety down. It’s good and drink to the condition. Walk in nature, meditate, do yoga etc etc whatever turns you on to keep calm. Learn to live one day at a time. Don’t rely on benzos and certainly avoid vestibular suppressants to promoter compensation,

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So sorry for all the follow up questions - I can certainly tell that stress is a big trigger and impediment for healing. I’d like to stay away from the benzo’s, I’m wondering if I would do better on a low dose of an SSRI right now and start CBT with a therapist. Have you noticed others having success using integrative/alternative medicine with the brain fog/ vertigo?

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Some people gain mentally from CBT. SSRIs aren’t the more popular for MAV. Venlafaxine (Effexor) is a SNRI which is very commonly used in US for treating MAV and I guess has influence on anxiety. Might be the two birds with the one stone for some. Brain fog and vertigo re common MAV symptoms but I cannot imagine either is likely to be sorted by CBT. IMO a proper preventative would be the way forward. Read the Wikis for further advice on lifestyle changes and diet, quitting caffeine is important. A very few get through it that way without further meds at least unless/until it may worsen. @rosjane uses diet, trigger avoidance and is still working.

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Thank you again, yes I started reading @rosjane posts about dietary changes. I bought the dizzy cookbook and waiting for that to arrive as well. I hope I can prevent symptoms without having to go on Effexor - I know you said not to get caught up in other’s experiences with meds but that one in particular sounds really nasty to wean off of (if able to).

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Hi Liz,

I started with Propranolol. I took it for over 3 weeks up to 40mg. I made me feel very very ill. It also gave me insomnia which wasn’t helping me at all. Funny, as a beta blocker should have been great for me considering my high heart rate - but it actually didn’t drop it much. I started pizotifen while weaning off prop and started to feel immediate relief.

Side effects: I sleep a lot (10 hours- but I’m a big sleeper before that). I’ve put on maybe a kilo or two. Slight increase in heart rate. Tired in the morning, but that’s probably also due to no caffeine fix.

As Helen said, try to work on your anxiety. I’m the pot calling the kettle black here and I need to be better at that myself.

Whilst off work, rest and get into your new habits. As I’m starting back up, my VRT is focusing on addressing problematic environments and screens for work.

All the very best to you

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Hi,

I’m glad to hear you found a med that works so well for you. I looked up the one you take now and doesn’t look like that’s available in the states.

You mentioned high heat rates. Do you have a higher resting hear rate at baseline? Yes I would have thought propranolol would have been a good choice but seems like a lot of trial and error with treatment.

This depakote burst isn’t really doing much for me, but will stick with it. I know a lot of these medications take time to work but since I’m only on a short course of this (10 days) I was hoping I might see some quicker improvements. Guess that is just the nature of this beast :grimacing:.

Thanks so much for all of your responses! Just want to feel like myself again.

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My resting heart rate is 80s-90s and sometimes goes over 100. I’m not overweight and I exercise. It’s always been high, the same as my sister. I’m conscious of it as can mean bad news later on.

I know, pizo is not available in US. I’m not sure why not. It’s really helped me, but I think a lot of people put on heaps of weight, so maybe that’s why? Maybe others can shed light on that.

I hope this short burst works. If not, ask about a longer term preventative and wait the required time to decide if it’s helped.

Nothing worse than feeling yuk all day!!

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Hi Belindy,

Thanks for the info. Yes I wish we had that option over here - looks like there are some questions on side effects of that med from a while back, but don’t most of these meds have varying degrees of side effects?

This has been such a difficult time. I feel like I was active all the time, had the freedom to go and do whatever I wanted (still respectful of safety with this pandemic), and all of that has come to a giant halt. I’m sure it sounds a bit dramatic, and maybe it’s because I’ve never really dealt with a more debilitating chronic disease before (had migraines since I was a teenager but never had issues with vertigo and dizziness). I’m struggling to find the motivation to even get out of bed everyday. I think I’m still in a state of denial and anger that this is all happening. :frowning:

From what I gather this can be a year long or years-long process to find the right combination of medications. I think that is the scariest part for me. It is really helpful to read the posts on this forum to gather information, but knowing that I am only 2 months into this problem and having issues coping with it is just really upsetting.

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I would have thought it unrealistic, of the specialist not you, to think it would work so quickly on a sensitised brain. This short course stuff is new to me. My impression was most drugs take months ( mine did) to kick in. Usually takes a couple of weeks on many for our bodies to adjust to taking a new drug anyway. Very interested to learn what transpires. If it works. Trust you feel able to continue sharing your exp for benefit of future comers.

All very much part of the Grieving Process. Have you ever noticed it in your patients?

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From my reading it appears Pizotifen’s US licence just happened to expire at a time when other more modern drugs were being more appreciated and therefore wasn’t renewed by sort of apathy rather than horrendous reports of side effects etc. Much a matter of bad timing which somehow was linked to a company deciding the take up didn’t justify production.

Im in UK but apparently it is possible to obtain Pizotifen via Canada. Sorry but I don’t understand the technicalities. If it’s an consolation it’s not a popular choice here in the UK and it seems rarely a first choice do I imagine it should be perfectly possible to obtain control from a drug which is more easily available. There’s a good few in regular use although the core drugs do vary country to country.

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Yes I will certainly let you know how this short term depakote burst works for me. It seemed strange to me too, especially given what I’ve read by many others needing to be on medication for weeks/ months to feel better. I may schedule an appointment with Teixido in Delaware (specializes in neuro ontologic disorders) and see if he has other thoughts on what to do.

It seems as though many people on this forum go to multiple doctors before finding someone who is willing to listen and also very knowledgeable and patient?

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