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Bebop’s mum’s progress

Contents

Summary
Symptoms Summary
Rough History
Start of Journal

Summary

First acute balance issues: Unclear, seems like around 2014-2016
Number & duration of acute phase(s): Unclear, not frequent initially, became more and more frequent over time. Started as mainly visual issues (i.e., busy pattern, lights in stores, etc., bothering her)
Any suspicious physical event/trauma leading up to dizziness: Stress (care taker for mom with cancer for one), insomnia (likely due to stress, and i believe hormonal imbalance post-menopause), malnutrition (likely due to stress) --> all lead to a sudden vertigo 7/2018 which MD speculate is BPPV (crystals in ear) but it could be due to infection (?) since she felt “off” for few days before sudden vertigo happened
Start of chronic phase: sometime between July-September of 2018
Age at chronic onset: 61-62
Started medication: mid/late May 2019
Stopped medication: still titrating
**Number & type of consultants seen to date: 3 neurologists, 1 ENT, 2 neuro-otologist, 1 psychiatrist, 1 general practitioner, ER doctors
Diagnoses received (one I’m “running with” first): initially anxiety and depression (UGH!!), more recently vestibular migraine / migraine variant
**Medications used successfully for MAV:
**Failed medications for MAV:
Non-pharmalogical treatment tried which helped: on fish oil, magnesium, multi vitamin, b2 (not sure which is helping - although, I believe fish oil helps with mood?), VRT (which i think helped stabilize her gaze ?)
Non-pharmalogical treatment tried which didn’t seem to help :
Dietary triggers identified: excessive gluten product
Any hearing loss in either ear: no
Persistent or intermittent tinnitus and character: intermittent tinnitus, improved
Other chronic conditions I’m suffering from:
Medication I’m taking for other conditions:
Any personal history of migraines: yes for many decades had typical migraines
Any family history of migraines: maternal side
Any history of ear problems: no
How did friends, family, and doctors react to your symptoms?:

Symptom summary

(Your current state)

What’s Gone: (what symptoms you had but no longer get)
What’s Ongoing: (what symptoms you still get)
My Worse Day Now: (description of the worst day you get now)

Rough History

(a bulleted timeline of your history from very first symptoms. Don’t make it too long, a “page” is enough. This is more freeform)

  • It all began when …
  • The first thing I did …

Start of Journal

Today I …

Hello. I have read on this forum that the first few days to weeks on a medication such a amitriptyline can cause symptoms to flare up and some people may have to deal with side effects as well.

My mom has started amitriptyline and made it up to 20mg (5/28) and honestly, for the first few days after the increase she was doing better, def noticeable difference. She is far from healed/cured but we were feeling optimistic the last few days that she was, perhaps, heading in the right direction. However, yesterday, out of NO where, she just crashed big time with worst dizziness, lethargy, fatigue etc., and this is the worst we have seen her in weeks.

Any insight to this will be appreciated! Thank you.

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Hi Bebop!

Good to read your post and especially the fact your mum has seen slight improvement!
I am on Ami too - just increased to 30mg in the last few days but I can say I haven’t seen any significant change as yet. Infact there has been a slight worsening some days so I imagine this is fairly common but they haven’t been any worse that a typical MAV “bad” or challenging day. I am just so glad they haven’t been catastrophic days (as in the past days have been so horrific)

Also I did notice somewhere (Can’t remember the post I read it on) but apparently some neuros think and increase in symptoms is a good sign that the migraine is responding… so I guess it may be a good thing?

Either way - she’s on the right track and I suspect the dizziness she had could have just been MAV playing up, or perhaps a trigger could have prompted it to happen. I wouldn’t pin it on the Ami (not this early on anyway)
I would perhaps write a diary or journal of her symptoms everyday, morn, noon and night so you can see over the next few weeks how it plays out for her. My friend Reneè @Naejohn told me to do this a few months back and it is so helpful to identify wether symptoms are improving. She alse rates her days out of 10 and is finding that a good way to see improvement. I hope this is helpful for you.

I have my fingers crossed for her that this is short lived and she starts to find some relief!
:crossed_fingers::crossed_fingers::heartpulse:

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I’m skeptical about this. I think often people have a MAV flare up and it’s sometimes just too easy to blame the new medication. Which is a shame because some people then give up on it despite not being to blame.

Side effects however, different story. However some side effects diminish over time as you get used to the medication. Some side effects linger however.

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My neurologist and most of the things I’ve read suggest a flare is common. Plus crappy side effects.

@bebop Everything with MAV morphs, waxes and wanes. Look for long term trends over months not days.

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Out of curiosity, how do u sleep on ami?

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Like a baby after a horlicks to be honest.
But I dream every single night!! Which often wakes me, on the whole very well. How is your Mum sleeping?

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On 20mg still don’t sleep well

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Try switching up the time of day she takes them. Some of us do better taking meds at night and some are better in the morning. It depends on the person and the med.

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Hi Bebop! I was thinking of you and your momma just recently, glad for the update. I’m so pleased to hear she’s had some even slight improvement! And sorry to hear of her crash. :pensive:
I don’t know the physiology of how all of this works, it it seems almost as if we are fighting a horrible monster and at times we just anger it. I agree with James that maybe we tend to blame the medication when in fact it’s just the evils of the MAV and not the medication at all. As my dear friend Kirsty @MNEK18 mentioned, I do think keeping a diary was very therapeutic and enlightening for me. I rated my days on 1-10, wrote down all unusual symptoms, highs and lows. It really may be good for your mom, also the diary became my “friend that understood me”, where I could write anything that “normal” people found so odd… such is MAV to relate to.
I am happy to hear your mom made it to 20! I personally didn’t feel any significant improvements until 30,40,50 other than very good sleep (agree with @flutters on maybe change up the time of day) and my tinnitus disappeared at 20mg. 30,40,50 is where my intense vertigo and photophobia began disappearing.
Please try to keep positive and pushing forward. I do belive she’s on the right track.
I am now sitting on the edge of a lake camping with my husband, spending my days doing everything I couldn’t do one year ago when MAV ruled our every waking moment.
Good things are coming for your mom, I believe it! :sparkling_heart:

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Could your mom have overdone it while feeling a little better? I find I do more than I sometimes should on days I feel better which can lead to a crash later on.

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I was told to take Amitriptyline at exactly twelve hours before I needed to get up next morning. Helen

How are you tolerating 30mg? Have you seen any benefits on amitriptyline? We just increased my mom’s dose to 25mg over night from 20mg so we will see how she fares with this new dose.

I am really disappointed by her crash, I didn’t necessarily think it was from ami but i was really sad that perhaps ami wasn’t working. I hope it is just a dose thing and it will ultimately work out for her. I’m wondering if the small benefits, albeit very small, is a good sign that this may ultimately work out for her? It has been only ~3 weeks since she started ami (10, 20mg) so I pray that as she titrate upwards she will see more benefit and less of a crash. We just went up to 25mg last night.

I’m glad you are doing well and only in just few months since you started the Ami. I hope my mom can achieve this soon as well.

Thank you for your kind response.

Hi,
Well at the current moment I am having some bad days… heavy head, full ears, squeezing head/face, terrible neck pain and true migraine so not seeing anything as yet at 30mg. Although these symptoms could be attributed to bad weather and baromatic pressure, or perhaps zi have had some MSG somewhere or a food trigger. Also my Botox injections were in a different place so that may not have worked as well. It is still very early days so I am not reading too much into this… so far I am not experiencing any side effects really. Or non that I can say for sure are due to Ami. I think you have done the right thing increasing. It can take months for meds to work so dont be disheartened by this.

Good luck!:heartpulse:

My mind tells me take things week to week, month to month and I remind myself of this daily but my heart just keeps wanting to see incremental changes because it hurts me to see her in pain. It’s so hard though. SIGH. Thank you for the reminder.

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HI! Thank you for your response. There is a possibility? We usually recommend that my mom walks few min if she can tolerate it, and on the days she was feeling better she walked extra 3~5 min (?). She really doesn’t do much (house bound) on a day to day basis so I can’t really discern if this is it? but maybe the extra few min walk for HER might have been too much?? i did tell her, even though she feels better NOT to over do it.

Sorry to be pedantic but she hasn’t ‘crashed’. In order to crash one first needs to have reached a stable baseline, and, that takes time, months, not weeks, as others have already said. So don’t even think of it as a ‘crash’. Either it is MAV morphing as it constantly does or it is the side effects beginning to kick in from restarting the Ami. By the symptoms listed I’d say probably the latter. Increased lethargy and fatigue are common Ami side effects. Alot of antidepressant drugs bring on an increase in dizziness as an initial side effect. Nausea is another common one. Quite often these side effects return upon every increase. That’s one reason to space increases well to allow things to settle in between.

I’m sure I remember you saying your mother took Ami once before and it controlled her headaches so well she thought they’d gone, and stopped. Can she remember how long that took last time? Even roughly? As @MNEK18 says don’t be disheartened by this apparent setback. It’s probably just side effects. A doctor once prescribed me Citalopram and told me to ‘expect to be much worse for at least three weeks’ before you start feeling better’ and at that point neither she nor I had ever heard of MAV. She was just stating the standard response of people to the drug. She was totally unaware of MAV, the super sensitivity of MAVers to drugs and the manner in which Acute and Stubborn MAV clings on! Helen

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It’s very easy to ‘overdo’ it with MAV. In fact its virtually impossible not to overdo it. She needs to try to walk about every day, perhaps 5 minutes several times a day to start with and build it up, and start going outside too. Very briefly to start and with supervision. Just moving about on two legs will help her improve. Check her out about light sensitivity. She may need hat/dark glasses outside. Does she use walking aid, stick/poles? If not, get some. She will find as soon as she starts to build up those minutes it will make her much dizzier. It will ramp up symptoms every time she moves beyond her ‘norm’ for a long time. These increased symptoms should settle after perhaps 30 minutes. If not then cut back a bit of the walking. Build very gradually. She may find any slight regime change will ramp up symptoms for a long time. Just got to keep going ever so slowly, it will come. Helen

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I’m sorry to hear that you are having bad days. I hope they clear up for you soon. It seems like you and my mom are on similar doses but perhaps you seem to clear the medication a bit faster (?) since you are not having any discernible (and common) side effects (i.e. dry mouth, urinary retention, fatigue/drowsiness, constipation). Ami is primarily cleared by the liver CYP2D6 enzyme and there are many different alleles so perhaps you will see better days as you slowly inc your dose (?) and get to an appropriate therapeutic range but of course this is all a speculation. I was just reading this morning on the neuroplasticity theory on Ami use and migrains and therefore it may take even up to 3 months in some people to see benefits/changes. So many theories.

Thank you for your messages, do keep me updated and hopefully you and my mom will see better days SOON!

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Thank you!

I was doing well a while back on only a 20mg dose it was in Feb if I remember rightly. I was even back at the gym!! As you can imagine I was elated. I know by now MAV constantly morphs and severity changed as a constant also. I have learned not to be disheartened and down trodden on the “bad” days as I know I can and will get well again.
I did have side effects at the start of Ami.
Dry mouth
Dry eyes
Gums bled on 25mg dose
Now I feel I am used to the medication and the side effects have thank fully gotten even less.

I wish your mum well! I think your great doing all you can for her!! :heartpulse: