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My journey


#61

Wow. Felt really good today. Sun was shining in London and we went out for a boat trip on the Thames from Richmond to Hampton Court. Glorious! Ear was probably hissing but couldn’t hear it. Balance was completely fine. Felt almost like my old self again but more glad to be enjoying life than ever before. Probably best day in 1.5 years! I hope this encourages someone! Take care. James.


#62

@ James: Can you go to the cinema and see a movie by now? (Not 3D I guess, but normal 2D??) If there’s anything I want, I want to be able to do that again. There’s no way I can go and see a movie now, brings on a migraine attack 100%. :worried:


#63

Yes, except I have a problem with loudness although that has been improving lately (as if the pressure in my ear is slowly reducing). But sure, no issue with migraines anymore, Ami has sorted that out! :slight_smile:. At home can use the computer and watch TV all day too :slight_smile:

Don’t worry about the side effects, they are not that bad and most of them fade with time (I rarely if ever get dry mouth these days).


#64

Good to hear! Gives me hope :slight_smile: . Tnx.


#65

Hey everyone! I have a quick question. I am on 60mg amitriptyline but for the past few days havenit been feeling too well. Today I feel indifferent and lethargic and I think it’s depression. I can’t tell what came first. The dizziness or the depression. But anyways my question is, should I increasemy dosage of amitriptyline? My doctor wants me to go up to 75mg. I’m just wondering, when will enough be enough? I’m worried that if I keep increasing my brain will keep wanting more and you cano my go up so much. I feel like a lot of people on here are doing better on a lower dose. Any advice? Should I go up? Or stay at 60mg? It’s scary not feeling like myself.


#66

So its now been over 2 months when I’ve not had vertigo and imbalance has all but gone.

Unfortunately I’m still getting a bit of fluid in my ear overnight most nights … I hope it starts to dwindle again.

The best news is I’ve been able to titrate down now to 10mg Amitriptyline nightly and I feel … fine! Not perfect, but pretty good considering!


#67

That’s great news, Turnitaround. How long has it been?


#68

Well I’m not calling success yet, still have the odd weird feeling and persistent tinnitus but clearly I’m getting better. To this point in total since first dizziness 2.5 years. Since MAV phase started nearly 2.


#69

OK a few days into lowering the dose to 10mg and just wanted to update … doing really well during the day but unfortunately finding sleeping more uncomfortable. Have not had ‘the night spins’ but I am quite uncomfortable sleeping on my side. I hope this reduces over time. Given I’d never imagined a year ago I could have reduced to 10mg I feel this is going well!


#70

So last night I dropped to zero meds. Today I felt a tiny bit light headed and a tiny bit migraine rumbly but I’ve used the computer for as long as I’ve needed and I’ve not been dizzy or imbalanced at all. Tinnitus is not bad at all but still present. But looking good!

(I can still detect a leak in my ear most mornings but it’s less than it used to be)


#71

Glad to hear. Pray that the positive trend continues for you.


#72

Thank you Vignesh. Definitely going in the right direction but not out of the woods yet.

Same to you my friend. I hope this work in progress gives you and others some hope.

But blimey. Almost 2 years of chronic symptoms to this point.


#73

That’s amazing! I am truly envious you’re much closer to the road of success. I hope you continue on the right path.


#74

You will get this far too and further!


#75

oh dear, not such a good night last night.

So i’ve been doing ‘ok’ for the 27 days or so I’ve been off meds, I’ve had 3 or 4 minorish relapses and several moderate attacks of vertigo and been very slightly unsteady most of the time, but I’ve also had some really good days - close to 100%. (Have you noticed how its easy to forget the bad days?)

And it may be too early to report but I had the WEIRDEST attack last night. It started with a feeling of pressure and head swimming. A very minor feeling of sharp pulling here, then there (over an over like a lighter version of swaying). Once I got to bed, the full attack came. I didn’t spin but instead my ear appeared to bubble as if leaking somehow. Unfortunately this was my GOOD EAR! So i’m not sure if i’ve just experienced going ‘bi-lateral’ or not. My bad ear did the same if less.

Today I was particularly unsteady, tinnitus is definitely slightly worse (none in my ‘good’ ear thank goodness) and quite frankly a bit downhearted. However, I have to keep reflecting on the progress I’ve made - I’m still able to type this on computer without the help of medication. The little things! :slight_smile:

Slightly tempted to go back on Amitriptyline, but I’m not sure it would do anything for this, just mask it a little, so pretty pointless.

Made an appointment to see my ENT surgeon with the intention of investigating diuretics. Will report back.


#76

ohh nooo im really sorry to hear this james its so disheartening I will send you a big cyber hug :slight_smile:


#77

I would give Ami more credit. Not an expert on how Ami works but it does something which tones down the imbalance considerably. If Ami can always keep me at 80% i would even take it for life :slight_smile:


#78

Ah, that is too bad!
I get that sometimes from either the weather/barometer pressure or if I unintentionally or intentionally try to experiment with food that may possibly be a trigger to see if it is indeed a trigger.
I had strawberry cheesecake the other day and was fine, until I had the strawberry liquid sugar crap that they added with the strawberries. I tried a couple more bites a couple hours later of just the cheesecake and was perfectly fine.

Everything is very touchy without meds!
Do you know if any environmental triggers are causing your excitement I.e crummy weather or pressure changes or is this just random?


#79

Cheesecake is definitely a no no sadly. I love the stuff!! Oh to have a guilt free cheesecake and red wine or coffee! :joy:

I have had my worst tinnitus flare ups after cheesecake. That tells you everything you need to know. Avoid!! Rising tinnitus is telling you whatever you did is not advisable.

Weather might be a factor.

Unfortunately I think the flare ups are actually a cycle. Pressure builds up, releases and then the pressure builds up again. The rate at which the pressure builds up is somewhat within our control but very hard to stop it rising at all I suspect. I believe the vertigo attacks are the pressure release.


#80

I’m finding the imbalance the most annoying thing whilst off meds. It’s sooooo tempting to return to a low dose …

But the other side of the equation is that if you are not dizzy and not having any migraines (I’m not), med free is the fastest way to compensate. Then the question remains is it EVER possible to fully compensate as this thing fluctuates. Decisions, decisions …