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Katy's Diary

Contents

Summary
Symptoms Summary
Rough History
Start of Journal

Summary

First acute balance issues:
Number & duration of acute phase(s): Around August 1st, 2020
Any suspicious physical event/trauma leading up to dizziness: No
Start of chronic phase: August 15, 2020
Age at chronic onset: 53
Started medication: 10/15/2020
Stopped medication: N/A
Number & type of consultants seen to date: 1 ENT & 1 Neuro
Diagnoses received (one I’m “running with” first): VM & BPPV
Medications used successfully for MAV: TBA
Failed medications for MAV: TBA
Non-pharmalogical treatment tried which helped: Migraine cold cap
Non-pharmalogical treatment tried which didn’t seem to help : N/A
Dietary triggers identified: Unknown at this time
Any hearing loss in either ear: Slight hearing loss right ear, ear fullness in both ears, sound sensitivity
Persistent or intermittent tinnitus and character: Intermittent tinnitus, both ears, subwoofer feel right ear, other strange noises hard to describe
Other chronic conditions I’m suffering from: Clinical depression, anxiety
Medication I’m taking for other conditions: Cymbalta
Any personal history of migraines: Over 30 years of migraines
Any family history of migraines: Father and sister
Any history of ear problems: No
How did friends, family, and doctors react to your symptoms?: Some supportive, some didn’t respond. The dr. (neuro) was awesome!

Symptom summary

(Your current state)

What’s Gone: (what symptoms you had but no longer get) Pain while moving eyes, chills/fever
What’s Ongoing: (what symptoms you still get) Fatigue, dizziness, nausea, tingling in limbs, sleepiness, tinnitus
My Worse Day Now: (description of the worst day you get now) Probably the day I woke up with chills and a fever of over 102. Had horrible migraine that left my scalp tender afterwards. Tested negative for Covid.

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

Around the 1st of August, I noticed I was dizzy when rolling over in bed. I figured it had to do with age, but a few weeks later I woke up from a nap with ear fullness, sound sensitivity. The day after that I got TMJ which I have never had in my life. It seemed like every few days there was some new weird symptom. My Dr. had already scheduled bloodwork and an MRI (unrelated to this), but I called and left a message about the new things going on. She referred me to an ENT, but I had to wait over 3 weeks to be seen. The ENT said VM right off the bat and / or BPPV and suggested I go to the neurologist. The ENT scheduled another appt. for over 3 weeks away to do the Epley maneuver. I lucked out with the neurologist and they had a cancellation, so I was diagnosed the same day with VM & BPPV (which was last week on 10/15/20). I will go back to the ENT on 10/23 for the Epley.

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So I went to the neuro today and was diagnosed with VM and BPPV. I was about 99.9% sure of this before going to him, but needed the diagnosis. I am glad he knew what it was and was able to diagnose me in one visit which unfortunately is not the case for others. He put me in Relpax which I won’t take until I go to bed tonight. Anyone else on this and if so, how does it work for you?

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Only two hits on a search here. Latest one was 2011.

Congrats.

Only two hits. Indent searching cos I have never heard of this stuff. Strange I just picked up 28! It’s a triptan type abortive it seems.

I was concerned about that. I found triptans useless. We MAVericks need long term preventatives.

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It looks like someone made a boo boo. He also called in ami, but the pharmacy said they didn’t receive it. I left a voice mail for the nurse and told her about it as well as my concern for taking the other with my cymbalta. I read all about the Relpax and it specifically states not to take with cymbalta. I put that on my forms, but maybe he overlooked it or didn’t realize. When I have more time, I will move this as turnitaround suggested, but I’ve been busy today. Home for lunch now.

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Triptans commonly come with warnings about taking with SSRIs. In theory the worry with triptans + SSRIs is serotonin syndrome. However in practice my Neurologist, Psychiatrist and Pharmacist all tell me that it’s extremely rare to have an interaction. Lots of people take them together. But of course its always good to clarify with your doctor and start off with a small dose.

Glad to hear you have a diagnosis!

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After the Dr. prescribed Relpax and I did a little research, I realized I am not supposed to take it with my Cymbalta that I have been on for years and want to continue to be on it. I called the dr’s office and told them and they said they would give me some samples for Ubrelvy, so I picked that up with the ami and we will see how that works. They called in the Ubrelvy also, but stated the insurance might require pre-auth. It didn’t, but they were out of stock until Monday which is fine because I have the samples. Only time will tell if these help, but I am praying that they do.

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My pharmacist says I’m the only person on Ubrelvy that shops there. I have to call in a couple of days ahead.

@flutters I am thinking I must be the only one also. The cost without insurance was something crazy like over $9,000 for a 90 day supply. My insurance didn’t require pre-auth, but they wouldn’t approve the amount the dr called in (30), so they broke it down into quantities of 10 and the insurance approved it and it will only be $10. Does it work pretty well for you?

Ubrelvy has a coupon program. First year to December 2020 they charge $1/pill. After that it’s $100/pill. I’ve been filling the Rx every month, using them sparingly and saving the rest in a mason jar. They work like a charm. Headache, dizziness, hallucinations all go away in an hour.

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