Questions to ask at Neurology appt. next week

[Jimbob7]

Good Morning everyone,

My T journey started just under 4 months ago now and has been a roller-coaster of life-changing proportions. I have an Neuro appt. next monday and wanted to take some advice from you guys on questions to ask when I'm there.

My T started the morning after a fall that saw me fall down and embankment and wrench my head right back on my shoulders whilst out on a walk. I woke up the next morning with a very loud hissing in both ears and it was pulsatile with whooshing heart beat sounds.

I was frightened and sought immediate medical help through my local surgery. A doctor there made an emergency referral to my local hospital where I was seen in A & E and referrred straight on to Neurology where I remained for two nights. I had a CT scan that was clear of any bleeding but they did identify some physical trauma to the back of my neck and Cartoid system. I was sent home after being onward referred to Audiology.

I attended Audiology a week later and showed some hearing loss in the higher register. Meanwhile the T had gained in volume and was now not only a very loud hissing (like an air leak), also with crickets clicking and buzzes and odd sounding blips at very high frequencies, as well as whooshing heart beat/ pulse, etc.

I was given diazepam and sertraline which I remain on to this day - although the diazepam is sporadic and based on me requesting it during Spike periods.

In the four months the T basically has a bit of a pattern - it will grow louder and louder over a few days and then I will have two or three days of respite when to all intents and purposes it goes - in so much as it quietens down very much and is bearable. Then, perhaps on day three or four it is suddenly back with a vengeance and as loud as it ever was and this goes on for a week or ten days.

When it is spiking - very loud and inescapable - if I hold my head and move my jaI this influences it and changes the pitch and volume. I am advised this makes it Somatic?

I have studied the patterns of it and can make no correlation between diet/ weather/ barometric pressure/ smoking/ not smoking/ I don't drink alcohol. Nothing seems to influence it from my point of view - it has it's own rules.

When it is very bad it is accompanied by some dizziness and nausea and slight vertigo. After studying and researching here and elsewhere I have discovered that I have a touch of Hypercausis but not extreme. A boiling kettle will influence it and make it louder, etc.

In terms of self-help I have been very active with CBT, Mindfullness, meditation and Julian's excellent YT channel, etc, but as others here have said; when the T gets to a certain severe volume these things rarely provide effective escape from it. I also emply CN Shocking with buckets of ice cold water/ hot water, etc.

I'm often at my wits end as to how to go forward now and, as this post says, I have a Neurology appt. on Monday and wondered if you folk out there had any suggestions for questions to ask as a way of progressing diagnosis and treatment going forward.

Thanks and love in advance,

Jimbob

[Untold]

Hi Jimbob.Firstly let me say I'm no doctor or expert but here's my view.

I didn't fall or anything but think maybe I did something to my neck while asleep.

Some of my symptoms are similar to yours and questions I still have that ENT's/doctors still seem very unsure about are these.

Could a neck / cervical instability issue be the cause.

If it is, could a sub type of Somatosensory tinnitus called Cervicogenic tinnitus be responsible.

Could a neck or instability issue affect the vagus nerve and cause tinnitus.

Another area I'm researching is an issue/injury to the sternocleidomastoid muscle and those nearby as these may have (I'm guessing) had a negative effect on my eustachian tube and maybe the cause of my T. Any jaw movement spikes my T, and these are all close together.

I think possible damage of nearby muscles, tensor tympani, palatini etc and other ET muscles are misfiring which can cause a lot of crackling when swallowing and negative ear pressure. I have no ear fluid so this makes sense to me.

My T is severe and has been life changing.

This post maybe a bit discombobulated but there is some questions in their that need answering, especially the Cervicogenic tinnitus and its symptoms.

Let us know how you get on.

Good luck my friend.

Love and silence to all.

[Jimbob7 in reply to Untold]

Thank you very much for this. Highly appreciated going in to details like this. Will take this with me in the morning.

Thank you my friend,

Jimbob

[Jimbob7 in reply to Untold]

So, as a second update a few weeks later- I eventually saw ENT Consultant yesterday after two cancelled appts. I ran through some of these details with him and I am now being referrred to an MSK Physiotherapist specialising in cranial injuries - the plan is for them to examine the area that my neck injury dominates and from manipulation and examination determine the best site to do an MRI Scan to try and determine if there could have been a detachment of bone from Eustacian Tube area or anything else obviously physical that is causing the severe T and vestibular anomolies; Dizziness/ vertigo/ headaches, etc.

As far as I'm concerned it's moving forward so thank you again, for giving me some useful pointers that has resulted in this going forward.

J

[Untold in reply to Jimbob7]

Good luck Jim.Keep us updated, we all need help.

Cheers.

[Jimbob7 in reply to Untold]

Of course, will do. Again, many thanks.

[lifeseeker]

Hi Jim, have you had your appointment? Love to hear an update. thanks x

[Jimbob7 in reply to lifeseeker]

Hi, no, appointment is in a couple of weeks and I'm hopeful that the MSK Therapy people are going to zero-in on a potential MRI Slice Region to see if there's bone displacement, etc.

Don't worry - I'll report here first on any news.

Hope you're doing okay as well and thanks . . .

Peace and silence,

X