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Maina's Diary: Holding in!

Contents

Summary

Symptoms Summary

Rough History

Start of Journal

Summary

First acute balance issues:
May 2020
Number & duration of acute phase(s):
Any suspicious physical event/trauma leading up to dizziness:
I suspect the pressure in my ear while taking the train (a lengthy tunnel between FR and the UK) triggered the VAM
Start of chronic phase:
September 2020
Age at chronic onset:
27
Started medication:
Lexapro
Stopped medication:
Amitriptyline because of low blood pressure and increased heart rate
Number & type of consultants seen to date:
1 ENT, 1 Neuro
Diagnoses received (one I’m “running with” first): Migraine variant(from ENT),and Vestibular Migraine (Neuro)
Medications used successfully for MAV:
Failed medications for MAV:
Non-pharmalogical treatment tried which helped:
Heal your Headache diet, and paleo diet (AIP)
Ginger for ear pressure
Ginkgo Biloba
Seeing an orthoptist to train my eyes and getting new glasses, I feel it helped
Elliptic bike
Non-pharmalogical treatment tried which didn’t seem to help

Dietary triggers identified:
Not sure but: mushrooms, eggs and definitely coffee as it was the first thing that made me dizzy at first

Any hearing loss in either ear: No
Persistent or intermittent tinnitus and character:
Yes, in both ears, stronger in the left ear.
Other chronic conditions I’m suffering from:
Cervical herniated disc (happened beginning of November, unlucky…)
Medication I’m taking for other conditions:
Any personal history of migraines:
None. Never had a migraine before this. However was sick while travelling in cars / train until I was 13
Any family history of migraines:
None
Any history of ear problems:
None
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)
Less spinning vertigo spells
What’s Ongoing: (what symptoms you still get)
Light sensitivity
High pitched sounds sensitivity
Nausea + Dizziness
Photophobia, phonophobia, spinning vertigo (did not have it in 3weeks, fingers crossed), tinnitus, sometimes fullness in ears, nausea, dizziness, feeling “jittery” (mini muscle spasms)

My Worse Day Now: (description of the worst day you get now)
High pitched tinnitus, Headache, brain fog, dizziness + nausea

Rough History

Hi Everyone! Decided this is a good timing to post this as reading your personal diaries really helps me day to day!! Si, here is mine.

In May 2020 I was taking the train between France and the UK. There is a lengthy tunnel (30mn), and in that tunnel while looking at my laptop everything started to spin around me very violently. Felt as if the train had an accident.
Felt dizzy for a few days afterwards and then everything went back to normal;
Between June-August
I had a few more spinning vertigo spells, 2 while looking at my laptop, 1 in a restaurant. Took a blood test (was thinking maybe this is due to low iron levels, everything came back OK).

September I started Teacher training in the UK. As time went by, I could feel myself growing more and more sensitive to the artificial lights and sound. I would have mini spinning vertigo spells that made me affraid to have vertigo in front of students. Decided to take a break from the teacher training

October I wasn’t feeling any better with rest, super sensitive to lights (everything had to be dark in my flat), going outside was hard because of the sun, and worse at night with the car flashes. Walking with my boyfriend was difficult, I had to keep focusing on my feet and have sunglasses + a cap to be able to go outside.

Unaware that my issue was vestibular, I thought I had eye issues, I decided to go back to France (where my mother lives) to run a few exams.

Taking the train back was an horrible experience, during the 30mn tunnel I honestly thought I would die because of the pressure in my ears. Then for a week felt extremely dizzy, things were moving, my mother talking to me would trigger a mini spinning attack, my ears were full and tinnitus roaring.

At first, The ENT and GP did not give any medicine, I decided to try the “heal your headache” diet and I can tell the difference : no more vertigo spells and migraine intensity decreased by the end of October

November:

My ENT diagnosed me with vestibular migraine (but was hesitating as he could see that the HIT and caloric tests showed right ear impairment). He gave me propanolol to try.

My Psychiatrist gave me Amitriptyline 5mg to try (3rd day on it) and I decided to try it rather than propanolol.
Update: saw a neuro today (23/11) and she thinks Amitriptyline should work for my migraine and she wants me to stick to it for at least 6 weeks.
She wants me to increase 1mg every 2 days to reach 15mg.

3rd day on Ami 5mg, I have the feeling my light sensitivity has decreased a bit, however I feel very jittery (as if high on coffee) and stressed out. I also have drier eyes.

Comorbidity: after severe shoulder pain, a cervical RMI showed I have a cervical herniated disc last week. Yay!!

Thanks a lot for taking the time to read this :slight_smile: I will keep you posted of any latest development! I honestly feel quite down sometimes…
Especially since I am experiencing more nausea and anxiety with the Amitriptyline ugh ! But it has only been 3 days… Hope it is recesses!

Start of Journal

Today I …

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Thanks for starting a diary and filling in the form. I’ve made it a Wiki so you can edit the summary over time. I’ve made some changes to move text out of the contents area. I’ve kept all your text. Hit the Edit button for any future updates to the summary. Suggest you make new Posts for further diary entries.

Thanks again for sharing your story and good luck :+1:

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Hi Marina. Very similar symptoms to most of us on here maybe barring the train tunnel experience. When I am at all acute any motion is too much motion so travel is definitely out. Amitriptyline can be bit rough initially I am told but it is in the top three choices in UK NHS guidelines so if you can keep with it it may prove your pathway to success and good news is even though it’s technically an antidepressant it is widely used for chronic pain. Think shoulder/neck, just as often if not more so than as a migraine preventative. Also it’s used for light sensitivity from any source not just VM. So what does that make it. A triple wammy.:crossed_fingers:. All reasons to be cheerful.

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I really hope so. I am super sensitive to meds in general so am easily affected by side effects. But I will try to stay at least 2 weeks on it so I can give feedback!

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Amitriptyline really helped me! Hope it’s good for you. Don’t expect it to solve all the symptoms but they should improve with time anyway. Lots of time, unfortunately, but it will get better!

Hi Turnitaround!
Yes, I have read a lot of positive stories on Amitriptyline.

I recently exchanged with someone on Effexor who mentioned that during the first weeks, he was feeling very anxious and then it weaned off.
But honestly I am at such a low dose (5mg) that I was surprised to see a surge in my anxiety… But I only weight 50kg so maybe it has a higher effect on me.

I also have an anxious nature, that I managed to tame recently --because it was making everything worse – so I believe this is only exacerbating what’s already there!

Maina

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I managed well on 20mg. Never needed anything higher.

Anxiety is a big part of the fallout of MAV too. It’s yet another challenge to overcome. If you were anxious already that’s really tough!

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Update:
I saw the Neuro today, she thinks I should try to titrate up slowly and reach 15mg by February - she also said that if I feel better at any dose I can stop there

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Update after 12 days:

The first 3 days at 5mg, my jitteriness was to high and I decided to recess at 3mg, increasing by 1mg every 3 days (I take drops, so it is easier!).

I have now been at 6mg for 2 days and I see the following:

-Reduced photophobia :

-one evening, I actually managed to go shopping with my mother in a supermarket ! Which is a big achievement considering I never went to the supermarket in more than 2months. So, quite a big success.
-This morning, had an appointment at the rheumatologist and the artificial lights in the hospital made me uneasy at first (little swaying movement in my vision) but I didn’t gasp for air or felt super dizzy as it was the case 1month ago.
-Sleep: I definititely sleep better on Amitriptyline

Con: Weirdly, I find that my blood pressure has reduced (this morning I was at 8.5, this afternoon I was at 10 or 10.5)
My blood pressure steadily increases throughout the day.Before taking Ami I was at 12.
. so I will tell the doc about that. Did you experience something similar?

However I feel fatigued during the day. For example going out this morning drained my energy and my eyes were sore as if super tired. Do you get the feeling ? Don’t know if this is a side effect of Ami.

-Maina

Must be very handy to have access to liquid Amitriptyline. It’s use seems common in Europe but certainly not here in UK although I think it is available for doctors to prescribe if they so wish. Pity they don’t.

Tiredness is a known side effect of all the tricyclics of which Ami is one. You also need to remember with a struggling vestibular system the brain has to relocate limited energy resources because it’s using more than usual just to keep you balanced. So today you exposed your system to powerful triggers thus pushing it even further. So you are now tired. If you get overtired you will probably find the dizziness/Vertigo will kick in. In early days many people find they get more dizzy towards the end of the day. Dry eyes are also a common side effect and that could be cause of the soreness*. Warm compresses can be used or you can buy sprays at the pharmacy to help with this. Sorry I can’t understand your blood pressure measurements. Am used to readings written as 120/80 or similar. Best speak with your doctor.
*looking at the list of Ami side effects I just noticed eye soreness is actually another one. Another best to mention to your doctor then.

I see that it is available as a syrup.

Why doesn’t it lead to numbness of the tongue I wonder, because with pill cutting you run that risk?

Interesting!

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Apologies, of course I wrote blood pressure the wrong way.

So in the morning my blood pressure is 85/60 and then it increases. Before I take amitriptyline I am at 120/70. And after takinh it I am between 90/60 and 100/60

This side effect is actually the most scary for me! Pity because I feel that otherwise the drug is working.

I have no medical training. I just looked it up on the internet as anybody can and I find lowering blood pressure can be a side effect of the drug so again you need to speak with your doctor. I do know that It is perfectly normal for blood pressure to vary throughout the day. It can vary depending on activity or lack of same up to a short time before measuring it. Is it your usual practice to keep checking you blood pressure? Maybe you have some other condition which requires this but it seems unusual to me and perhaps not such a good idea as, without proper medical training, it may well lead to a lot of unnecessary worry.

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Hi Helen!

Yes, I will definitely see my doctor next week and tell her about my blood pressure.
I have a naturally low blood pressure because of my low weight, so I am very sensitive in any med lowering it. I felt quite weak yesterday and the day before so I decided to check my blood pressure, that’s not something I usually do.

I am wondering if this is a temporary side effect that would go away with time.
For now, I will go back to 5mg as I seemed to do okay on it. Might be that my organism needs the time to adjust.

Thanks for always taking the time to answer, even when people are worried like I was.

Have a nice Saturday:)

Xx Maina

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Hi! It definitely leads to numbness of the tongue after taking the drops. But they are diluted in a glass of water which reduces the numbness!

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Update: As much as I hate to announce this, the effect of Ami on my heart were to big for me to continue. But hey, everyone is sensitive to different things !! I have titrated down following my neuro’s advice but at that dose the good effects were inexistant.

I’ll check with my Neuro next week but a first failed experience makes one SO reluctant to try new meds. Did you also feel like that at some point in time ?

Xx Maina

I have a hunch, a theory even maybe, that only the most hypersensitive people who would logically suffer far more with their MAV symptoms than the less sensitive ones, are the only ones that ever hit this site in the first place. It stands to reason people who are promptly diagnosed and can gobble up the very first preventative offered to them and achieve control never set foot amongst us. ‘We’ are the extreme end of the wedge. Therefore I am not one bit surprised with your announcement that you are having to part company with Amitriptyline. Many many others have had to do that before you. Try not to get depressed about it. Many people have comorbidities which preclude them from taking certain classes of drugs. Amitriptyline is considered one of the best for MAV. Because of another condition I couldn’t even get to trial it. That’s life. Many sensitive MAVers find they don’t tolerate the first drug offered. I didn’t but luckily the second one worked for me. Many are not even that lucky. Unfortunately it’s all a matter of trial and error. Better luck next time. Btw if you search ‘Ami and heart’ you will find quite a few references to similar incidents, apparently Ami and Nortriptyline can both produce effects in some people.

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Thanks dear !! Means a lot to read you. I know you’ve came a long way so it means a lot ! May I ask about your underlying condition, is it heart related ? Edit : found it in your diary!!

Also I wanted to ask: One ENT proposed Propanolol before my Neuro put me on Ami. Do you find it has a significant impact on your BP (being a beta blocker)? The issues I had with Ami was the lowered BP and on top of that racing heartbeat.
couldn’t walk without feeling I’d faint. Wonder how your heart is on Prop?

This forum really helped/helps me keep hope and without it I don’t know where I’d be mentally. Thanks to being here I can see people trialled and errored and that’s life. I was pretty down about failing on Ami especially since I had good results migraine-wise ! Within the first week could see good results.

I’ll also try and not focus so much on what’s the next med’s gonna be, and enjoy the bumpy road ahead.

I also find that when my mood’s down it’s just counter productive for my symptoms.

I’d like to find a way to battle the negative feelings, I finally decided to try TCC next week and something called “Neurofeedback” where they apparently teach you to activate certain areas of your brain linked to positive thoughts / behaviour patterns. Very curious about it !

I also have tried to push myself more lately. I was avoided crowds and went strolling in the city during the weekend. Was not easy but I was proud to try !!!

My boyfriend told me he could see the difference between now and one month ago. Good to have people that see the baby steps around you. I couldn’t go outside without staring at my feet and this weekend I was actually able to take a nice walk… around other people !

So… I guess progress happens. I’ll stop focusing on “the right med” for a while and try to enjoy life a lil bit :smiley:

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No heart problems far as I am aware. Doctor selected Propranolol for me because my blood pressure was high end of normal for my age. When I was your age, indeed until beyond forty, doctors kept telling me I had the blood pressure of a young girl, low. Although the beta blocker has helped immensely with the MAV - in the eyes of at least three different doctors I have discussed it with I am their No 1 Success Story of a lifetime. They have never seen such success before apparently - it has only lowered my BP very slightly despite my being on a very high dose. I gather betablockers have been around ‘for ever’ but have long since been surpassed for efficacy in controlling BP by more modern drugs and so are rarely used these days for BP. All that said and do bear in mind I have no medical training I think it very unlikely your doctors will prescribe you any anti hypertensives (betablockers, calcium channel blockers) following your reaction to Ami as presumably your body has a strong susceptibility towards them. Lots of people with normal to slightly low BP on here in the past found Propranolol even in tiny doses gave them low BP and made them feel faint. Besides most doctors avoid betablockers in young people because they can cause fatigue and reduce exercise capacity.

It will be fascinating to hear what your neurologist comes up with next. They all have their own favourite treatment regimes. I have also noticed variances between different countries part of which is influenced by the different drugs availability no doubt. In some countries (US) many ‘experts’ insist patients adopt a migraine restrictIve diet and implement major lifestyle changes for a couple of months before even trialling medication. They also insist on people taking large doses of supplements, such as Vitamin B2 and magnesium. When it comes to chronic or persistent (between attacks) photophobia often people eventually discover FL41 lens (Theraspecs are a well known one) which may mask photophobia. This sort of regime is used in pregnant and breast feeding women too for obvious reasons. Some people seem to manage without medication.

TCC? Sorry. You need to enlighten me. Not a clue what that is?

‘Neurofeedback’?? Not Biofeedback was it? There’s a lot of alternative therapies type stuff out there but beware. Unscrupulous people are out there prepared to make great financial gains from vulnerable people with chronic conditions desperate for relief.

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TCC is CBT in French! Mixed up the two. I think that will be good to help with my underlying anxiety. Curious about the Neurofeedback. I thought as well it was the same as the Biofeedback but turns out they monitor activities of your brain and put earphones for you to relax and sparkle positive emotions?
I’ll tell you how it goes, I know it sound strange, even to me !

I also believe I have depression and anxiety on top of the MAV. So my priority is to battle these two beasts as they are preventing me from moving ahead and making progress.

I used to be anxious but not as much as what I feel now. These days I started to get full on panic attacks at night and while sleeping. Fortunately I am followed by a Psychiatrist as well since the beginning because I knew it would be a lot to cope with.

On a positive note I firmly believe it can only get better from now. Progress was made and will be made.

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