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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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So, I’ve only been diagnosed for a few weeks now and started meds as soon as I left the neuro, but I don’t feel the medication is helping yet. I understand that it can take a while for meds to get in the system, but I reached out to the neuro’s office today. I was a little upset after listening to the long message that it told me to call back during normal business hours. It WAS normal business hours, so I went to the website and sent an e-mail. They limit your verbiage, so I had to keep it brief. The nurse (who I don’t like) called back and why I didn’t give her more details or argue with her I don’t know. Everything that I brought up in the short e-mail, she tried to refer me back to the ENT or my GP or counseling. I said the ear fullness was there, she referred me to an ENT. I said my depression/anxiety was worse, she referred me to counseling (which I can’t afford right now–$75 co-pay for specialists), I said the Ubrelvy wasn’t helping my headaches, she said the depression/anxiety was probably causing them and to allow more time for the meds to work and to get on an anti-depressant. Ummm, I’ve been on one for YEARS and the new med Ami is also an anti-depressant. I got off the phone feeling defeated. Granted, the dr told me to my face I had VM/BPPV, but in my chart he wrote “intractable migraines without aura” and “dysfunction of vestibular system, bi-lateral”. Does the nurse not know what that means? Did she even read my chart? I wrote another e-mail to them tonight stating how confused I was by the phone call and that all my symptoms were caused by the diagnosis the dr gave me and was a neurological condition and did not need to be referred back to my GP or ENT. The only way I can talk to the dr. again is to make an appt., wait weeks and pay another $75 co-pay and his nurse is still the one who will check me in. I really like the dr., but what do I do if the nurse is clueless and I can’t get a reasonable answer to questions about my diagnosis?

How long have you been on Amitriptyline? Because it takes around six weeks to even get a flavor for it. Have you started substituting water for alcohol? Given up caffeine? What tangible measures can you take in your lifestyle right now?

The medical system is a joke. (Sorry, I know your job is there). Do what you can for yourself now.

@flutters I have mostly given up alcohol and diet dr pepper. I’ve drank more water in the past 6 weeks than I probably have in the past 5 years (sad, I know). I obviously am not a fan of water, so I bought some drink enhancer because it’s the only thing I could find that doesn’t have aspertame in it which is another trigger. I have also tried to stay away from other migraine triggers. I keep my light out at work and have been considering purchasing some “Migraine glasses”, but not the super expensive ones. I have to do more research. The migraine cold cap works wonders, but I like to keep it at home because the small fridge we have at work doesn’t get it cold enough. I’ve only been on Ami about 2 1/2 weeks and just upped the dosage to 2 pills a night, so I definitely will give it more time.

I am actually a Project Administrator for a construction company. Right now, I am at the end of the job so they sent me to the main office until my next project rolls around. I am worried that with all the work I have missed that they will get rid of me and if that happens, I will have no choice except to file for disability because no one else would keep me with all the work I have to miss. Even if they do keep me and send me back out to the jobsite, I am worried with all the loud noises and the flourescent lights, I won’t be able to handle it. Because of the pandemic and being at the main office, I am by myself in a room and can keep the lights off, but won’t be able to do that in an open trailer where lots of other people will be coming and going. Since I have ear fullness and sound sensitivity, I can’t stand to have anything in my ears, so I can’t do ear buds and listen to music which I used to do frequently before I got this condition. I think the depression and anxiety are worse because of the future being so uncertain, but the meds aren’t doing anything to help it and I can’t turn my mind off at night. I am so tired and fatigued all the time, I just want to sleep. Considering I have had insomnia for quite a while, it’s nice to sleep some, but this is to the extreme and makes me miss work because I can’t get up. The only good thing that has come from this is that I’ve lost a few pounds because if one is sleeping, one is not eating. I know that will change once the Ami gets good in my system. Anti-depressants always pack on the weight. I am just going on and on here. Sorry for the rambling. I’m just screwed.

The first year is the worst. Can you talk to HR about your VM diagnosis and explain your plan for getting better? Usually we do our best to hide these things but once it gets obvious we have to out ourselves and prove we’re making progress as a way to delay getting axed.

I have $30 electronic noise canceling headphones that go over, not in, my ears. That’s a place to start. Migraine glasses are important if you can get them, and a reasonable work accommodation if there’s anyone empathetic in your chain of command. It’s a sticky subject and fraught but if you’re already on the edge it might help.

@flutters We are in the midst of getting a whole new accounting software program which even though I am not in accounting, it affects everyone in the company and they have been making us do video training. People near my office were being loud and I couldn’t hear so I do have a set of over-the-ear headphones and if i keep the volume low, I can handle those. I’ve missed most of the training because of being out sick and am having a hard time concentrating when I do the training. Apparently, other co-workers are stating they don’t have a clue of how it’s going to work, so that makes me feel a little better. I was going to talk to HR last week, but the lady was on vacation and I haven’t been in since she’s been back. Last month, the company sent out something for some kind of mental health awareness and I contacted someone from EAP, so that may help. They will only let work know I contacted them if I tell them to, so if they try to fire me, that may prolong it some. I am waiting on a call back from the counselor, but if it’s a $75 co-pay, I can’t do that right now. I think most of the people at work know what’s going on because ppl keep asking why my light is off and I tell them the truth. I know the office manager has been supportive and is praying for me, but she may not have a say-so in the matter. I will go to HR tomorrow and just be honest and see what they say. Wish me luck!

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More than that, I will pray for you my friend.

Hi Katy,

I’m so sorry about all the mix ups with your medications and communications with your health care provider. How annoying and definitely not what you need right now.

It’s so hard not to worry about your job. I’m in the same boat right now and although I have some time off now, that can’t last forever - and let’s be honest - we all have mortgages, bills and life to pay for. Scary thought - for me anyway. I hope you manage to cope at your work ok. I will be thinking of you.

We have both just started this long journey out of this… with some luck hopefully we can find relief soon. Keep in touch.

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@Onandon03 Helen, after reading this post, I now wonder if my VM/BPPV could have come about due to dental work I had done. Long story short, my dental insurance only had 3 providers I could use. I had a very bad experience with one of them and the 2nd provider was this woman’s husband who I didn’t want to go to, so that only left me one option. I’ve been with my current dentist a couple years now and don’t really like him, but I am afraid to change because if any of the work this dentist has done fails, it won’t be under warranty if I change now. My employer changed plans and I now can go to a different dentist, but just haven’t done it yet due to the warranty thing. Right before I started having VM symptoms, I had a bridge done. It took a LOT of shots to get me numb enough and my face was numb for like a week afterwards. I have always hated going to the dentist, but this dentist always HURTS me. Anyway, I am just wondering now if the dental work he did could have caused the VM. I actually wondered that before reading this post, but now after seeing what you wrote, I am really curious as to if that could have been what started it all.

It happens. I have read of one person on here who relapsed after a brief while post major dental work. And I have a personal friend who experienced severe dizziness after same to such an extent she had a. Prescription from her dentist for an anti-sickness drug to take. She’s no migraineur but interesting must have some balance difficulty which only came to light years later after she discovered she couldn’t use crutches following an ankle operation. Difficult to prove an exact cause though timing is often a bit of a giveaway. I don’t much believe in pure coincidence with such matters. IMO though whatever the cause one needs to have an existing predisposition in the first place. Helen