Justin’s Diary

[Justin45]

Contents

Summary
Symptoms Summary
Rough History
Start of Journal

Summary

First acute balance issues: early June 2020
Number & duration of acute phase(s): lasted a couple weeks with getting dizzy off and on. Seemed to be triggered by stress
Any suspicious physical event/trauma leading up to dizziness: Herniated disc in Neck
Start of chronic phase: early August 2020
Age at chronic onset: 34
Started medication: October 2020
Stopped medication: still taking
Number & type of consultants seen to date: 2 ENT’s, 1 neurologist, and 1 neurotologist
Diagnoses received (one I’m “running with” first): 1st ent said possible Ménière’s. 2nd ent did more testing he thought it was uncompensated VN. Neurologist thinks it’s migraine related. Neurotologist called it menieres syndrome.
Medications used successfully for MAV: 50 mg nortriptyline, gabapentin 300mg
Failed medications for MAV:
Non-pharmalogical treatment tried which helped: Migravent 3x day, turmeric curcumin 1500mg 3x day ( seems to help )
Non-pharmalogical treatment tried which didn’t seem to help :
Dietary triggers identified: none identified
Any hearing loss in either ear: was told left ear was slightly less than right, but that my hearing was normal ( both ent’s and neurologist)
Persistent or intermittent tinnitus and character: Persistent both ears since Aug 2020. Worse in left ear. High pitched, volume fluctuate from very loud to barely noticeable
**Other chronic conditions I’m suffering from
Back problems
Medication I’m taking for other conditions: turmeric curcumin 1500mg 3x day
Any personal history of migraines: neurologist diagnosed silent migraines in 2014
Any family history of migraines: mother, sister. Aunt
Any history of ear problems: no
How did friends, family, and doctors react to your symptoms?: family is supportive, especially my wife. doctors don’t really seem to care very much, (at least the doctors I’ve seen)

Symptom summary

(Your current state)symptoms have improved very much since starting medication

What’s Gone: (what symptoms you had but no longer get) blurry vision, muscle spasms above ears, felling of walking on marshmallows, Tingling face, smelling things that aren’t there,
What’s Ongoing: (what symptoms you still get)tinnitus, off balance feeling, pressure at bridge of nose and back of head, ear fullness,
My Worse Day Now: (description of the worst day you get now) loud tinnitus, brain fog, ear fullness

Rough History

Mid June 2020
It started with several episodes of dizziness and pressure in the back of my head. Then one day I was under a lot of stress at work and I became very dizzy and had a feeling of pressure in my head. I felt like I was going to faint. I went to a clinic near me, while I was waiting in the exam room for the doctor I remember the light was really bothering me, I layed down on the exam table covered my eyes with my forearm, I was still really dizzy. I somehow fell asleep for 15 minutes or so. When I woke up I felt fine. Doctor said it was migraine or some type of tension headache.

Late June 2020
Started getting pressure in head like it was going to explode, seemed to be relieved by popping my ears. Seen ent, he said it was sinus problems. Started having neck pain that increased over the next several days to severe pain. The dizziness seemed to be related but I don’t know. I went to the ER, they did an x-ray. Said everything looked good and gave me a steroid shot and sent me on my way. Followed up with my GP the next to see if he could order an mri of my neck. He said, I didn’t need it, and prescribed be a high dose of nsaid to take for neck pain.
July 2020
After several weeks of taking the nsaids. I developed gastritis and esophagitis. I lost 25 lb in 3 weeks and had to have my gallbladder removed. The gastro dr said that it was caused by taking the nsaids after having a steroid shot. ( lesson learned). I dint have any dizziness or pressure during July
Aug 2020
Had mri of neck that showed herniated disc. Started physical therapy for neck. I started having ear pressure and a feeling that fluid was draining from left ear. several days later the tinnitus started in both ears. Started getting blurry vision and dizziness with nausea. especially if I was in a supermarket or other large store. It’s like everything blurs together. 1st Ent said it was “possible menieres”. He didn’t give me any meds to try.
Sep 2020
All of my symptoms had become 24/7. It became difficult to function. All I wanted to do was lie down every chance I could.
2nd ent ordered caloric testing and ecog. Caloric showed 41% left side weakness and mild left bearing nystagmus. Ecog was .37 left ear .31 right ear. The Ent said I did not have menieres and that he though it was VN that hasn’t fully compensated yet. But he wasn’t sure he just said that my Test results “ didn’t make sense” And that if i still had problem in a month he would refer me to a neurotologist.
Oct 2020
Had a microdiscectomy to repair herniated disk in my neck. The pain was not getting any better with physical therapy. At the time I thought that it was cause of my dizziness. A few days after surgery I had a severe vertigo attack. Luckily I was at home. I made an appointment with a neurologist that I had seen in 2014. He thought it could be migraine. He prescribed nortriptyline 25mg.He also prescribed gabapentin 300mg to take before bed to help with Nerve pain.
Nov 2020
Upped my nortriptyline to 50mg. Still taking the gabapentin. After a few weeks of that, I wasn’t having any blurry vision or nausea. My dizziness changed to more of an unbalanced feeling, my tinnitus seemed to have gotten worse. I started the MAV diet. I eliminated cheese, chocolate, caffeine, and msg from diet. The tinnitus seemed to improve ( still loud at times).
Dec 2020
I’m slowly getting back to normal work schedule. Though I feel a lot better I made an appointment with a neurotologist. I didn’t want to just assume I had MAV. I made the 4 hr drive to see the specialist. He looked at my Test results from the ENT. He diagnosed me with “menieres syndrome” based on my 41% left ear weakness and .37 Ecog for my left ear. They also did another hearing test. The testing showed no hearing loss. He said I didn’t have migraine because I didn’t Have headache. I told him about the pressure between my eyes and back of my head. He just told me to try a diuretic that he prescribed. And come back i 1 month. I’m just feeling frustrated now because I don’t know if I have migraine, menieres, or both.

Start of Journal

Today I …

[Onandon03]

Hi Justin. I can certainly understand your frustration. All those ‘experts’ and between them they basically came up with nothing. It’s often difficult with any condition that is just a dx of exclusion, ie there’s no definitive test to prove, to obtain a precise diagnosis. Interesting that each expert you saw seemed to manage to reflect their own specialisation in your various diagnoses but I guess that’s always the way it would be. They each have to justify its existence. I often think many people would do better being treated in whole rather than as component parts. I particularly found this chasing a MAV diagnosis.

Nearest I have ever had to a definite diagnosis, after many years suffering, has been ‘probable migraine associated vertigo’ from one specialist and “on the vestibular migraine spectrum’ from the other and Btw the latter specialist did tell me that that ‘head pressure’ is the ‘Migrainous element’, migraine involving much more than a headache. And if it’s any help I don’t have classic migraine headaches either and it’s this that IMO stops many people getting a dx and treatment for years because they just don’t ‘tick the right boxes’. Whatever the underlying cause might be many people with strong and constant vestibular symptoms improve by taking so called ‘migraine preventatives’, such as you are on, and that is fact.

No idea really what to suggest you do next other than continue following the migraine treatment regime. Quite often time, the passage of six months or a year will bring much improvement. Might be worth getting a relevant specialist to look further into your back and neck injuries. Could there be some connection? I say this because my brother suffered severe vertigo attacks when a bit younger than you. He is no migraineur. His seemed to stem from a back injury, possibly involving discs troubles, as a result of some very heavy lifting in the course of his employment.

Did you try the diuretic? Are you going back in one month? As a lay person I have always had the impression Menieres, unless it occurs concurrently with VM, should be easily diagnosed. Might be worth asking more questions?

[Justin45]

Thank you for the comment. I actually started the diuretic this morning. I plan on returning to the neurotologist next month. He referred to the Ménière’s syndrome diagnosis as a “waste basket diagnosis”. He said he wasn’t going to take VM off the table, but wanted to “sit it aside for now”.

[Maina]

Hi Justin! We have similar symptoms, including the cervical herniated disc! Since the onset of my symptoms (in September), the diet also helped me. I tried Amitriptyline but I reacted to it (low blood pressure), I am now on a SSRI (Lexapro), seeing how it goes and whether or not I change my treatment plan.

I am glad that you feel a bit better, and I hope a diagnosis is found soon.
I am sure you will soon be your old self !

Xx Maina

[Belindy]

Hi Justin, wow you’re really getting the run around at a time when you just need solid answers and a good plan of attack.

I agree with @Onandon03 Helen, keep continuing with the migraine treatment plan including diet. Treat it for MAV. There is nothing to lose in the interim and you may find you slowly improve.

Have you tried VRT now you are a bit better? If lights trigger your symptoms, perhaps buy some migraine glasses.

All the best. Hope you get some answers next month! Bel

[Justin45]

Thanks Maina, the nortriptyline actually caused me to have a high resting heart rate for the first few weeks.

I hope that you get some relief with the lexapro.

Have you recovered from your herniated disc? Did you have any radiculopathy?

[Justin45]

Thank you Belinda. I haven’t tried VRT. The neurotologist mentioned it. I’ll ask him about it next month.
I have thought about trying migraine glasses. I haven’t determined if it’s the lights or all the different items. It’s like there is too much there for me to focus on one thing, and it all just blends together and I get dizzy.

[Onandon03]

Be very careful about attempting VRT. Suggest you read up on it on this forum beforehand. With regards to whether it’s lights (photophobia) or Supermarket Syndrome (visual vertigo) it is often difficult to distinguish and indeed could be both. Many people do use migraine glasses and find them helpful. Of course basically they are another sticking plaster although I appreciate a very useful one. I found them very helpful myself.

[Maina]

Hi Justin,

Thank you for the message ! Yes, now I don’t feel pain from my herniated disc anymore. How about you ?

[Justin45]

It’s much better, about 90 percent. I think it was making my dizziness much worse. I had to wear a soft collar while doing certain tasks. Bending my neck seemed to trigger the dizziness.

[Onandon03]

In that case you certainly need some research into Cervicogenic dizziness/headaches etc. Also there exists very strong links between how not moving the head naturally (neck collars?) and our balance mechanism affects disequilibrium.

[Justin45]

I had to stop the diuretic, started it on Wednesday. By Saturday I had a severe headache with pressure in my nose and back of my head and bad nausea. I had more dizziness that I’ve had in over a month.

I took an imitrex that the neurologist prescribed me, I didn’t really think it would help. But I felt a lot better after a few hours. Sunday I started getting muscle cramps all over.
I will just stay on the low sodium diet, and the MAV diet and see what happens.

[Justin45]

I went to a new ENT last week. Dr Gacek. I described to him all of my symptoms and what the other doctors have said and that the nerotologist called it menieres syndrome.

He said that menieres is just a name used to label a group of symptoms. He thinks the problem is caused by a virus that is causing inflammation of vestibular nerves( he named other nerves that are involved to but I can’t remember)
His treatment is to prescribe antivirals (acyclovir) to get the virus under control.

I asked him about the migraines, he said it absolutely is related and that other patients of his found relief once the virus was suppressed. But there is no guarantee that the antivirals will work. He said they work for 80 percent of patients.

I have been on the antivirals for 1 week. I am still taking the migraine meds (he said that it was ok to continue for now).

I’ll give it another week and report back if I see any improvement or not.