Nurse new to VM

Oh I could see your direction of travel. Common mistake. Doesnā€™t apply with vestibular conditions it seems. Iā€™ve seen it work well for hernias and hip ops but vestibular conditions no. We appear to be much more in the White Rabbit and Through the Looking Glass environment. When it comes to treatment itā€™s all trial n error. The top migraine specialist my side of the Capital confirmed that to me just in case I hadnā€™t worked out for myself after all these years.

You, me and an awful lot others. Though when you think about it thereā€™s so much variation in symptoms donā€™t see how there could be. IMO there are several different conditions all taking shelter from the rain under the MAV umbrella. Only this morning I am reading on here if people who find weight lifting and jogging make them feel very much better. Others cannot cross a room without holding furniture for support. What other conclusion can one draw. Itā€™s an umbrella or waste paper basket diagnosis. I am sure there is true Vestibular Migraine, Migraine Associated Vertigo, MVBD and probably half a dozen others all thrown in the one basket.

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Hi Helen,

Yes thank you very much for your post and shedding some much needed light on this situation. I will keep you posted on how the depakote ā€œburstā€ trial is going and what neuro wants to try next. I need to hit the lotto to finance trying to figure this out and being out of work!

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below papers say sodium valproate can be used for acute treatment of migraine, sounds encouraging !

open-label studies give some support for its efficacy,13,14,76,77

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I just ā€˜happenedā€™ on a reference to sodium valproate only yesterday whilst looking for something else and from the wording sounded as if it is expected to start working as a preventative pretty quickly. Within a couple of weeks so maybe there is something in your consultantā€™s short burst theory and it will pay off for you. I donā€™t seem to have any memory of hearing about it before. Might just be me.

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Be careful with this drug?

http://sciaeon.org/articles/Valproic-Acid-Induced-Sensorineural-Hearing-Loss-a-Case-Report-of-Partially-Reversible-Hearing-Loss-In-a-Patient-Treated-With-Valproic-Acid.pdf

https://www.tandfonline.com/doi/abs/10.1080/14740338.2017.1372420

See links

If this is supposed to help general migraines but individuals with MAV or VM experience greater symptoms on this drug, it actually might support the theory that their migraines are actually audiovestibular in origin.

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makes sense, for those folks with VM and for whom Depakote works, their migraine is not of audiovestibular origin.

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Hi James, Thank you for the information on the hearing loss side effect. I have had some strange symptoms going on this week and I cannot tell if they are related to tapering off the depakote or if my symptoms are changing/ worsening.

I only had that strange hearing feeling last weekend, otherwise hearing feels about the same.

For the last 3-4 days the bridge of my nose feels very strange. No pins and needless, almost feels like Iā€™m congested when Iā€™m not at all. I donā€™t know if thatā€™s a result of the depakote wean or what the heck is going on?

My dizziness has waxed and waned the last few days but seems to be much worse in the later afternoon when Iā€™m walking the dog (not bad for short distances around the house).

Iā€™m having a follow up call with my doc on next steps since I think I need to try something else since depakote has not done much. Iā€™m pretty sure doc wants me to start verapamil. I know there are varying degrees of success with this medication. I really hope this works as I cannot use nortryptyline/ami as Iā€™ve had rapid heart rate issues in the past, and very sensitive to any sort of drugs (even caffeine, cold meds) that may increase it.

I may also ask doc about ssri/snri for potential future use. Iā€™m seeing a therapist now but I am extremely saddened and feel very hopeless about this situation.

I stopped working as a nurse about 2 weeks ago and really uncertain if/ when I can go back. Iā€™m supposed to start a class for my masters in nursing next week and still unsure if I should start and pay the $ (which is substantial) because there is so much uncertainty now. Because of covid over here, I am not seeing much of my family and friends. This condition makes me feel isolated enough because I look fine and seems like family and friends just donā€™t understand how bad this is. Itā€™s like thereā€™s a physical isolation related to the pandemic and a mental one because of how few actually understand migraines much less atypical ones that cause vertigo, etc.

Just praying for some breakthrough at some point. I want my life back, or some part of it. :heart:

Hi Helen,

Thank you for sending these links. I read how IV depakote is used in acute situations, it is helpful to see some actual studies regarding what my neuro chose to start with.

I really appreciate how quickly you respond and how helpful you have been as has James, Belindy, and I believe another poster. You are very kind-hearted people to spend so much time trying to help through education and encouragement. Thank you so much again and I always look forward to reading your helpful posts. :pray:

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Hi,

I havenā€™t posted on here for a few weeks, as I havenā€™t had much to update with my current condition.

My vestibular migraine symptoms manifested for the first time in Nov of 2020.

I havenā€™t been on any preventatives except for a short trial of depakote, which my Neuro only wanted me to try for about a week and a half to see if it would break this cycle of daily pressure headaches and brainfog.

I have always had menstrual migraines but never any vestibular symptoms (dizziness, brain fog, etc) until this past Nov. Because my classic migraine symptoms responded well to Nurtec (cgrp abortive med) for a number of months, my 1st neuro decided to try me on one of the injectable cgrp inhibitors (Ajovy), which I started Feb 11th.

So far I havenā€™t noticed much of a change, maybe just maybe, slight relief of pressure headaches 2 weeks ago (which was week 3 after receiving ajovy) and now in week 4 it seems like this is all wearing off a bit (due for another shot this week + 10 days out from my cycle).

Recently I sought out a second opinion with a renowned specialist in VM and felt very lost after the appointment. It was a very rushed appointment. I was told that I needed to start on propranolol 80mg extended release ASAP, and come back in 8 weeks. There was little if any time for questions, I honestly felt like I was bombarded by having 2 medical assistants, a fellow, and then the attending come in and get bits of my story with multiple interruptions in between. I am unsure if anyone actually really heard what my symptoms are (and I tried to keep it as brief as possible unlike this post).

When I asked if I could taper up to the 80 mg of propranolol (realizing that I couldnā€™t be on extended relief if in smaller doses) he said no, I had to start at that dose. He also said he didnā€™t want me calling the office 6 times before I started taking the med to look for reassurance that I should start the medication. Iā€™m not sure where that comment came from as I have never seen this doctor before.

I have not discussed this appointment with my first neurologist as I donā€™t know what I would even say at this point - like hey I know Iā€™m on ajovy and it can take a long time to work but can we add propranolol to the mix per doc #2? My 1st Neuro didnā€™t want to start me on propranolol as he was worried it would drop my bp too much.

I feel like Iā€™m at a crossroads right now. I have a very kind and fairly responsive neuro (1st Neuro) who seems to be doing what he he thinks best but Iā€™m not sure if VM is really is specialty - his next step is to trial me on lamictal in conjunction with ajovy in a few weeks.

Then thereā€™s this 2nd doc (who is an expert with VM) that I did not feel listened to what my symptoms were nor did he want to work with me to slowly taper up to a therapeutic dose of propranolol.

For now Iā€™m sticking with my original neuro and hoping we can work together to figure this out. Anyone else have any other thoughts?

Just to add - Iā€™m just feeling really depressed lately, this illness has just hijacked my life. I can still go for walks but the pressure headaches and brain fog creep back the longer Iā€™m outside so that I canā€™t be out for that long. I used to love to go for hikes and runs and thatā€™s all gone now. I only recently turned 40 and canā€™t believe this is all happening now.

I am not working, not sure if I will ever be able to return to work as a nurse. Iā€™m also pretty sure this will be my last semester in my masters in nursing program as I canā€™t work in a clinical setting this summer with these symptoms.

This has been pure hell so far - canā€™t make long-term plans with all this uncertainty and I am embarrassed to be seen by friends and family as I break down crying almost every day. I just want them to remember me as I was, energetic, hard-working, positive and always had a good sense of humor.

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 fogā€¦ I can take a lot of pain but not the loss of control or feeling like Iā€™m not fully present. This has been truly heartbreaking so far.

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Sadly your story and progression are pretty typical. Start by finding a good therapist who deals with chronic illness. Itā€™s essential to your sanity and self esteem. Be prepared for the long haul. The first year or two are awful. Over that period almost all of us improve and then move on. My cohort here showed up in 2018-2019. Most of us have wandered off or only stop by occasionally. Weā€™re out living our lives.

Stick with the neurologist that listens to you. There are almost no VM specialists in the world. Too bad you found a crap one.

Progress is very slow. Sometimes we lose friends and careers. Sometimes we find new opportunities. Eventually you learn who the true friends are. And you learn how to redefine yourself. I used to be someone else. Iā€™m different now. I liked the old me and I like the new. Iā€™m still the competent and talented professional I was, but the way I run my life is modified. Iā€™ve adapted. You will too. Some of us still manage to be over performers. Others of us learn to like a less frenzied life, though itā€™s not what we expected.

Some dreams get postponed. None has to be abandoned, though sometimes they get modified.

Your life will be rich again. I promise.

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Hi Liz,

Firstly, this recent appointment sounds extremely unprofessional - full of interruptions and broken bits of information. Youā€™re paying top dollar for this, so this is poor form. It sounds like he has a one size fits all approach to medication and it wouldnā€™t have mattered what you said, the outcome would be the same.

I was put on Propranolol to start with. This medication has helped for a lot of people, as a primary or additional medication. I did not have such luck as I reacted badly to it. I started at 10mg a week, then upped to 20mg the second week until I (was supposed) to reach 60mg. At 40mg, I was an insomniac, the most physically fatigued I had ever been and extremely depressed. I had to stop! If I had started at 80mg Iā€™m not sure how that would have gone. I believe we should always taper up slowly.

I thought the same thing as you about working. I couldnā€™t imagine how on earth it was going to happen but you have to remain hopeful.

This was exactly me. I cried in every conversation as if my life was over! For weeks. I make long term plans now, but still always add ā€˜if Iā€™m feeling okā€™

My advice is to start propranolol at a low dose. Work your way up and see how you go. Perhaps wait longer for your next appointment and explain that you want this to be successful so doing everything you can to enable that to happen. Keep on with the Ajovy. This can sometimes take a few injections Iā€™ve heard. Iā€™m not a doctor, but itā€™s probably what I would do.

Try to keep positive. I know thatā€™s hard

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I wonder. Did you ever heard that old expression ā€˜A camel is a horse designed by a committeeā€™?
IMO it doesnā€™t pay to have too many opinions. They only conflict and cause confusion. Thereā€™s no way you are going to satisfy the treatment plans of both neurologists even if you wanted to. I have no idea of the history behind it but I canā€™t see much logic in seeking a second opinion so swiftly after the first. Maybe it just panned out that way as it sometimes does but if, as I suspect, it was in some vain hope to quickly bring your condition under control, please try to understand, as @flutters posts, MAVā€™s a long haul almost always and the quicker we get our heads around that the easier life in the long-term will be. Believe me. Such acceptance is a good part of the battle.

When it comes to choosing which neurologist to follow IMO itā€™s a non brainier. Whoever he might be and however ā€˜expertā€™ he may be, seems his office is chaotic and as soon as he said:

He was down the pan. Canā€™t say I donā€™t like his ā€˜bedside mannerā€™. Iā€™ve yet to find it! You are obviously a person desperately in need of support and Iā€™d lay bets itā€™s not coming from him in any shape or form. So Iā€™d stick with the Other One.

When it comes to the Ajovy injections. From what Iā€™ve read you need to give it three months before making a decision. And yes it tends to wear off initially at least. Read @nins diary. She has practical experience. Your neuro is obviously planning on introducing lamictal in a few weeks once heā€™s seen the results from the Ajovy I guess. Much better to space out drug introductions otherwise how do you tell Whatā€™s responsible for doing what. Most preventatives take several months to really start to work.

With reference to your last four paragraphs as stated above you really need to try to find acceptance. Itā€™s a hard condition to treat. I read only yesterday of it being considered a ā€˜stubbornā€™ condition to treat. Very appropriate word that, ā€˜stubbornā€™.

You need to find some way of turning your way of thinking to a much more positive mindset. All this negativity isnā€™t helping. As Anxiety comes hand in hand with MAV for many might be worth saying your doctor about something like Venlafaxine. Meantime perhaps listening to some of these NHS videos. Perhaps the ā€˜Unhelpful thinkingā€™ oneā€™s a good place to start.

https://www.nhs.uk/conditions/stress-anxiety-depression/moodzone-mental-wellbeing-audio-guides/

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Hi Emily,

Thank you for your kind words and support. Itā€™s just so difficult to navigate everything when so much is up in the air at this point.

I meet with a therapist but maybe to find someone that is more experienced in chronic illnesses. I like my current therapist and I think she is experienced with people who have anxiety and depression but maybe not other types of chronic illnesses that are so difficult to treat.

What you said in terms of your cohort pretty much improving within 1-2 years gives me much hope. It also felt just a little daunting terms of thinking how long these symptoms may persist. Just have to stay hopeful, as difficult as that is because this is so new to me and I was such an active person before.

In terms of all the life changes - I think about the 13 hours that I spent on my feet all day as a nurse in sometimes very stressful situations and I canā€™t imagine doing that for even an hour right now. 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 canā€™t help but get a little tearful as I think of all that has changed in the last few months and what I have been reduced to. I just pray there are some meds that I will be able to tolerate and can help me.

Iā€™m very grateful for this forum for support and for education regarding this illness. Thank you so much again for all of your help.

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Hi Belinda,

Thank you for your kind words as well. I will talk with my first neurologist at the end of this month and determine what the next med is to add into the mix - maybe it will be propranolol, I know he was thinking lamictal at first. My hesitation with the propranolol is what you experienced with it - namely the depressive side effects. Iā€™m just worried about adding something into the mix when Iā€™m already in a very depressed state. I guess you could argue if it starts working then maybe that cancels out some of the hopeless feelings. Itā€™s just so hard to know what to do right now.

In terms of work, Iā€™m covered to be on leave for a little while longer and then will have to see how Iā€™m doing. I may need to move back in with family while I am trying to recover or at least get a better handle on my symptoms. This is has been so difficult because I am a pretty independent person and now have to rely on others, user uber, etc to get around. I long for the day when I can just go for a long drive, windows down, and music up, and be happy again.

Hi Helen,

Thank you for the link you sent and your very supportive response to my post. I am going to stick it out with my first doc and try to be more patient with this process. Iā€™ve been in such a rush to get things figured out (as Iā€™m sure so many have) as there are major decisions on the horizon with work and school and all of this uncertainty just makes everything incredibly difficult to have any type of plan.

I have reached out to @nins a few times about her experiences with ajovy and she has been great in terms of letting me know what her experience has been like.

Just curious - I know you said propranolol helped you significantly. 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 know every doc has their preferences in terms of meds. As I mentioned in my post to Belinda, my other hesitation with propranolol is the depression aspect which I know Iā€™m struggling with every day right now. I am hesitant to add anything else into the mix (primary care doc wanted me to start on Prozac a few weeks ago) but I really wanted to give the Ajovy a fair shake and with another med on board may not be able to tell whatā€™s doing what.

Thank you so much again for your kind words.

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Pictures are worth more than words. First went chronic in 2017. Tried about 16 different migraine drugs, multiple devices, gadgets, VRT. Settled on Botox and Ubrelvy. From totally disabled to maybe 85%, many days more. This was last year.

You will thrive again. VM is more akin to recovering from a closed head trauma than anything else. Youā€™ll get there but itā€™s no short term miracle cure. Itā€™s persistence and faith.

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Hi Emily,

What a beautiful picture and you can certainly tell how happy you really are after being on that hike :blush:

Thank you for sending it and being so positive. It is very much needed right now.

I really applaud all of your bravery to keep trying different medications until finding something that works. All those med trials had to be scary and so challenging - especially with all of the side effects that can come with these meds. Furthermore how many docs did you have to go through to find someone that was willing to work with you but also had some handle on this illness? Iā€™m sure there were many and that in and of itself is probably one of the hardest parts - finding someone that has a clue and also has some compassion.

You are definitely an inspiration to stay positive and not give up. @ander454 and @Onandon03 have said some pretty similar things to what you have written (been so positive) and I just want to say thank you so much for continuing on this forum (even after youā€™ve been feeling much better) and supporting those that are really down in the trenches right now.

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Being here is important. This place saved my life. I canā€™t give back enough. The friends who understand me best are here. Consider yourself part of this special family.

And Iā€™m on neurologist #5. Iā€™m not in love with her but she gets the job done. My best one client fired me after her boss told her to because VM doesnā€™t fit the classic migraine profile. Iā€™ve learned to know more than my health care providers and to be a patient advocate for myself.

That picture shows the mountains surrounding Mt. Rainier. I live in WA state near Tacoma. The view in front of me is this awe inspiring scene.

Nothing motivates me more.

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Hi Emily,

Thank you for the warm welcome into the family. I hope I can heal and give back some day the way that you are. It takes a truly special and empathetic person to give back as you have.

I think one of the hardest parts of all of this for me is that I was in the role of a caregiver for so long - Iā€™m a pediatric critical care nurse (for the last 10 years) and also loved helping take care of family and friends when they were in need. The idea that I canā€™t do that right now has me feeling really lost identity-wise. Before all this happened I was volunteered at a free primary care clinic in my area a few times and hoped that I could volunteer in a place like that one day as a nurse practitioner (once I had my degree). There are so many people that need health care. My plan was to work as a nurse practitioner somewhere else to be able to support myself but also volunteer at a clinic like the one I mentioned where people go when they donā€™t have any health insurance. Right now all is that is just all up in the air. This summer would have been the beginning of my last few semesters of Np school (would have finished next spring), and now I fear that may be coming to a shattering halt.

Being able to care for others is such a big part of my identity and something that truly brings me joy. Iā€™m lost being on the other side of it right now. Sorry for more backstory but these are the thoughts that really make me so sad every day.

Going back to your story though - yes, I can see how you may have gone through a few neurologists by now. I wish there were more that understood how to treat this illness and who also practiced with a little more compassion at times. I am sure it was a very difficult and frustrating process - having to start over with someone new and advocating for yourself so many times over.

On a more positive note, those are truly beautiful photos. Iā€™ve been out to the Seattle area twice. I drove up one of the loops around My Rainier. I canā€™t imagine living so close to such beauty (East coast girl here who is fascinated by the mountains). I remember descending in the air into Seattle and seeing Mr Rainier in the distance and just thinking WOW - was in complete awe of Godā€™s creations and beauty.

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Whoa - thatā€™s the view from where you live? Amazing