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Interview with the Migraineur - Rose's Diary

Contents

Summary
Symptoms Summary
Rough History
Start of Journal

Summary

First acute balance issues: All my life
Number & duration of acute phase(s): I’ve always had issues walking down stairs as I would get very disoriented if I was not holding onto anything
Any suspicious physical event/trauma leading up to dizziness: I had a bad sinus infection
Start of chronic phase: May 25th, 2019
Age at chronic onset: 16
Started medication: Periactin (November 2019), Topamax (December 2019), Propranolol (January 2020), Effexor (March 2020)
Stopped medication: Topamax (January 2020), Periactin (February 2020) Propranolol (March 2020)
Number & type of consultants seen to date: 5, 2 ENTs, 2 general practitioners, 1 neurologist
Diagnoses received (one I’m “running with” first): Vestibular Migraine
Medications used successfully for MAV: none yet
Failed medications for MAV: Topamax, Periactin (I still take it for my allergies), Propranolol
Non-pharmalogical treatment tried which helped: Magnesium, B2, ginger, VRT, FL-41 glasses
Non-pharmalogical treatment tried which didn’t seem to help : none
Dietary triggers identified: Coconut, large amounts of cheese, peanuts
Any hearing loss in either ear: Fluctuating hearing loss in right ear (which has pretty much gone away when I started the supplements)
Persistent or intermittent tinnitus and character: Occasional low ringing in left ear
Other chronic conditions I’m suffering from: Chronic sinusitis
Medication I’m taking for other conditions: none
Any personal history of migraines: I would get the occasional headache if I did not get enough sleep or if I was staring at a tv for more than a few minutes, but I don’t know if these were migraines. I have also always had issues with sensory overload (especially with smell and bright lights), but I am neurotypical.
Any family history of migraines: Not that I know of
Any history of ear problems: No
How did friends, family, and doctors react to your symptoms?: My mother thought that I was using it to get attention at first, and a lot of my friends would comment that I “looked fine” when I said I was sick. I think they started to understand when my behavior changed drastically (I am usually very laid back, but I started to become extremely anxious) and I stopped doing certain things. One of my friends had also noticed that my walking would get very wobbly in areas that really brought out my symptoms. Some of my friends would be horrified when I described my symptoms. But I am now very glad to say that everyone I know supports me and understands my limitations.

Symptom summary

What’s Gone: Hearing loss in my right ear, fear of floating, fear of high ceilings/ being outside
What’s Ongoing: Nausea, light sensitivity, dizziness, brain fog, rocking, sore eyes, imbalance, spinning, anxiety, depression, daily headaches, fatigue, spacial warping.
My Worse Day Now: Imbalance, dizziness to the point where my eyes can barely focus, extreme light sensitivity, rocking, constant nausea, stabbing at the back of my neck, squishy floor, spin attack for a couple of minutes, anxiety.

Rough History

  • It all began when I woke up on May 26th, 2019 after going to bed a bit dizzy and nauseated.

  • The first thing I did was try to follow my normal routine, but when I realized that I couldn’t tolerate it, I wasn’t too worried as I thought my symptoms would pass.

  • After 3 weeks, I went to my pediatrician and was diagnosed with a sinus infection and given antibiotics. When the dizziness didn’t go away, I went back and was diagnosed with BPPV and did the epley maneuver for 2 weeks straight about 10 times a day, which of course did not help.

  • I then got an ear infection and another sinus infection, so I went to an urgent care doctor and was given more antibiotics and meclizine. I mentioned the rocking sensation which perplexed him.

  • I then went to an ENT who did a brief examination and told me that he thought it was brain or nerve damage.

  • I went to another ENT about 4 months later where I underwent the usual vestibular tests, which all came up normal. I was then prescribed Periactin. I got a MRI scan on my brain and inner ear a week later which also came up normal.

  • I finally went to a neurologist who diagnosed me with VM and started me on Topamax. It got rid of my depression, which was good because I actually wanted to wake up in the morning again. However, I’m pretty sure it was starting to give me symptoms of mania (or at least hypomania), as I would not stop talking, I had a lot of energy, I had very weird thoughts (I was obsessed with the thought of eating my phone and about eating food out of the trash), I would dissociate, and I had begun to have issues with aggression. It also made me sleep for 12 hours every night, instead of my usual 7-9.

  • After 3 weeks on Topamax, I was taken off due to the mood changes and started on Propranolol, which I am on currently (2/22/20). The only side effect I am noticing is slight fatigue. I have also begun to wear Fl-41 glasses at school and when I am working on my computer at home, which has really helped to reduce my headaches and some of my symptoms.

Start of Journal

Today (2/22/20) I decided that it was time to create a journal, as I had time and the motivation to write it out today, and I wanted to make sure that it was recorded before I began to forget some of my earlier experiences. I would love to look back on this to see how far I’ve come.

Before this all had started, I thought that my general unhappiness (teenage angst) was bad, but now looking back on it I was just being ungrateful for the life I had. I now appreciate every moment without pain I experience (which are few and far in between), and I have learned about how to not give up hope and to keep fighting. I know that I have changed for the better, which makes this disease an important experience, and it has showed me how strong I am and how strong other people are. I think it has also kept me safe from bad teenage decisions (such as partying or drugs), as my symptoms limit me and I don’t want anything to interact with my medications.

I think in a way I was lucky that this happened to me at this point in my life, as I had no real responsibilities and my body is still young enough to adapt (I was never bed bound or even really housebound, even though it took all of my courage to go out in public). I also still have the support of my parents, which would not happen if I was in college. I do suffer from some social isolation, but it isn’t too bad.

I am grateful for every moment without suffering, and for every moment I spend with my friends, or doing something I love. I also now have learned to appreciate my body and what it does for me. The road ahead is not easy, but I have come too far to give up.

Thank you for reading.

March 5th, 2020-
Today I went back to my neurologist after being on propranolol for about 6 weeks. He decided that it would be best for me to try a new medication instead of titrating up some more. I told him that I would like to try Effexor, which he gladly agreed to put me on. I will be starting it in a week, so that I can finish titrating down on propranolol before starting it. He did warn me about the withdrawals, which do make me a bit nervous but I doubt I’ll forget something which has a chance of helping me, and I’m very excited to try something new.

I also now know that magnesium does actually help my symptoms, as I stopped taking it for a few days due to food poisoning (fun) which slowly made me dizzier and dizzier. Also, my FL-41 glasses have really reduced the discomfort in my neck so that I only get the occasional twinge instead of burning.

I have also started dissections in my AP bio class, which of course comes with the awful formaldehyde smell, which hasn’t bothered me as much as I would have thought! I do sometimes get a little bit uncomfortable though, but I think that’s due to the actual dissection part (I HATE the circulatory system, it makes me so queasy!), but other than that, it’s fun.

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I can totally relate to this. It’s incredible how good experiences become so much more precious once MAV hits.

Thanks for detailing your experience. I’m sure you will get much better over time. Good luck to you!

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Rose, thank you for sharing your experiences with us. You are already an inspiration at such a young age :smiling_face_with_three_hearts: Keep up the attitude of gratitude, it will serve you well on your healing journey.

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Hi Rose. Your MAV experience has given you maturity and appreciation of life far beyond your tender years and which will benefit you in many ways on into your future. So very well done.

Good luck with the Propranolol. It does tend to cause fatigue and most particularly in the young I understand. It will work and work particularly well on stopping vestibular attacks, light sensitivity and head pressure and once that improved the dizziness/balance issues do reduce/stop. Only trouble I’ve found with it is it seems to take quite a while to do so sometimes far longer than some other drugs. So needs extra patience but in the end I’m sure you’ll do fine.

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Sorry for the late reply to you all and thank you all for your kind words! I have been quite busy for the past few weeks, but I added another entry into the diary if you would like to read it.

I got off of propranolol (which I can always go back to because it didn’t give me horrible side effects). I started Effexor (75 mg) last night and it gave me horrible insomnia (I only slept for 30 minutes instead of my usual 7-9 hours) and today I’ve been a bit lightheaded and I have a slight tremor in my hands, along with a headache. Should I continue on 75 mg or should drop to 37.5? Interestingly I have noticed a large reduction in my rocking sensations, but I don’t know if it’s because of Effexor or if it’s placebo.

You started at 75?! I started by breaking the pills up and counting microbeads. It took me months to get to 37.5. We MAVericks can be hyper med sensitive. Low and slow is always our best bet.

Yes I started at 75 (I’m surprised I haven’t gotten worse side effects) because I didn’t feel like counting the beads. I’ll try 75 again tonight I think then if I still feel like I’m on meth I’ll move down to 37.5.

I know that feeling. Topirimate made me feel and look like I had radiation poisoning. I lasted 29 days and have permanent nerve damage in my hand. Effexor was better for me.

Yikes, Topiramate just made me feel under the weather and it made me slightly manic. I think I like Effexor more already.

Of the various preventatives I tried Effexor was the best. I quit that too after about 14 months, but then even for a MAVerick I tend to be weird and react strangely. I’m trialing Botox now. I’ve had mixed results but it’s generally positive.

I wish you all the luck in the World with it but do bear in mind the effect will probably be cumulative so you might not be hit by the full effect of starting so high for 5-7 days yet.

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I took 75 mg again last night, and I had a little more nausea than before but I was able to get about 4-5 hours of sleep (I took some melatonin to help), I didn’t have any panic attacks (I had one the previous night), I didn’t get a headache, and I’m not as lightheaded/dizzy. I still have the hand tremor though. I’ll see how I feel for the rest of the day and I’ll drop down to 37.5 if anything worsens.

You might also consider switching to mornings.

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I’ve considered that too, but I kind of like taking it at night because it makes me extra dizzy. I’ll probably change when I take it when the side effects other than insomnia lessen.

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The main idea behind a very gradual introduction of a drug is to reduce the severity of the side effects it causes.

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Little Update: I have moved the time I take the pill up by 5 hours (so that I take it with dinner), which has gotten rid of the insomnia (I don’t even have to take melatonin anymore) and the nausea. I didn’t want to move it to the morning because the time I wake up varies by about 5 hours depending on the day. All of my other side effects have lessened too, except for the jaw clenching which gives me head and neck aches, but I’m learning how to manage that. So far so good :slightly_smiling_face:.

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You might try to even out that sleep schedule if at all possible. We migraineurs are hugely sensitive to disturbances in our sleep rhythm.

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