makeyourownluck

Hi @Franci003 i take photos of lots of things, but mostly blurred out people/animals & the natural world. My profile picture is one of my own, and pretty much captures my mood over the last 10 months. I have a few others in the ‘our art’ thread also.

Yes @tracyNYC, always film. I like how the limited number of frames makes you see things a different way. You can’t get trigger happy. Im also a sucker for all things black and white lol.

It was a really positive day, you won’t regret getting back out there!

That's awesome!! So artistic and expressive. I'd like to get into something like that.glad you began doing it again. Taking our lives and passions back is key good for u!

What a fucking joke

Agreed, but you can’t say anything bad about the NHS. Salt of the earth. I wish I could get back every penny of tax I have ever paid for this disgraceful organisation.

On the waiting list for 10 months and they don’t even bother to send a letter. Only found out when I phoned my GP to chase things up.

WTF is going on with our health care system.

Unreal. The medical system especially regarding ears and T is an absolutely fucking joke. It's 2022. Time for knowledge and for the cures already. It should have been here by now.

Thanks @Franci003. It actually went ok. I arrived early and hid in a room till the piper left lol. Plugs and peltors allowed me to sit through the music in the service. These things are never nice, but at least I got to say goodbye.

I don’t want to give my mum a bad rep lol. She was great at the began, I even stayed at her house for 3 months (I was a riot!). I think she is just getting tired of it.

She has no reference for what we experience, so I can’t really blame her. Pre-T I wouldn’t of been able imagine a person feeling the way I did 10 months ago. I still struggle, but that period was dark as F. I never want to experience that again.

Hi @Steph1710, it went as best it could. Thanks for asking.

Oh no! I’m sorry! Hope it wasn’t too traumatic @ZFire. That film is such a head fuck lol.

No worries lol, I found it kind of amusing if anything because there was a lot other weird stuff happening as well (too embarrassing to describe). My Dreams are strange AF

Now I’m intrigued lol. :)

@makeyourownluck @Uklawyer If you are testing positive still via PCR, it's common for it to pick up dead viral material.

Thanks @makeyourownluck and @kingsfan. I have read that you could tests PCR positive for COVID for months after you have had it. Obviously a very sensitive test!

Have you taken the flights? Did that affect your t or hearing? I would recommend stay away from diazepam as much as possible. Benzo is not to be messed with. I want my biological child so probably not going to adopt

No, I’ve not travelled since onset. I’m worried about it. The pressure in my right ear is unbearable at times, any additional pressure would be too much for me.

Growing up I always thought I would adopt, but the process in the UK is very difficult.

I understand your concern, but at this point I feel like I’ve suffered enough. A few months ago I couldn’t even leave my house without a panic attack. Valium has improved my quality of life tenfold.

I am being careful though, and working with my doctor to ensure I don’t develop a dependency. I take a low dose, and only when needed.

No worries, doesn’t seem like there is much on her about BC. I’m having a really hard time with this method. Been on my period for over 3 weeks and the pain is intense. Scared to take hormones though... the joys.

Hi @makeyourownluck ! I have been on Seasonale for many years now (generic Indayo). I believe it's one of the lowest doses combination pills available. No effect on t. I take it consecutively, which is perfectly safe to do (no periods at all) according to my gynecologist. I am not planning on having children, so no concerns there.

Thanks @LilSass, I will look into it. No period! Sounds bliss.

To be fair though, for a 5 year old she is very careful with cutlery, glass and ceramic. She knows they hurt my ears.

Same, things that use to make me nervous really don’t anymore.

Yeah man, I was in a car crash (low impact). I would usually be upset about the damage. Instead I just told the person not to worry about it. I was just happy my ears were fine.

Pulsatile tinnitus just the same, spiking with every change of position/action. Trying to push doctors to realise T and PT are not the same thing. I’d have more luck trying to squeeze a mushroom into a piggybank.

It can take a while.

In my case it wasn't until a couple of years after onset.

Then I had a setback; so took another couple of years again after that.

Fingers crossed. Got nothing but time...

It doesn’t make me sleepy at all @Steph1710, but it really helps my anxiety and sciatica.

@makeyourownluck urgh, sciatica. I used to get it a lot until one day, I changed jobs, and realised it had been caused my the stool I was sitting on. :-/ My friend had sciatica so bad, he ended up having a back operation to release the nerve. And sorry you suffer from anxiety- that sh*t is the worst. :(

@Steph1710 how did your friends operation go? I’ve been struggling with sciatica for over 2 years now and I’m toying with the idea. Trying to figure out why Valium helps though, maybe a tense muscle somewhere, but I’ve done PT/stretching for months with no results.

It sucks @Wrfortiscue, just gets worse, never better. Just trying to keep my head above water at this point. I’ll get there, I have to.

I'm very sorry to hear this. I think the main thing with the little'un is to reassure her that none of this is her fault and that mum and dad love her very much. Time will take care of everything else.

And buy a lot of gifts always helps:)

Agree to that

https://www.youtube.com/watch?v=1aHFAZCabAY

Hey again @makeyourownluck. No, diazepam by no means lowers my tinnitus. Tinnitus is the same no matter how much I've taken between the 2 and 6mg. It just makes me really sleepy. That's the main reason I've taken it in the past; just to knock myself out.

Totally understand the apprehension, but I seriously doubt 2mg of diazepam taken conservatively (ie. couple times a week) is going to leave you with a permanent spike. As you say, it might even lower your tinnitus.

My advice would be to take one 2mg dose, and just monitor it. If it gives you a bad spike while on it, it's unlikely to be anything other than temporary, and you can discontinue.

I've had worse spikes from a cup of tea than the spikes I've had the day after taking Valium.

Well that was a great success. After a drink the pressure in my right ear didn’t bother me as much, and I managed to fall asleep in a silent room.

This morning my tinnitus is lower.

@makeyourownluck I am a regular migraine sufferer because of narrowed veins in my head. I have experienced cluster headaches too. But they had no correlation with my eye twitching. If that helps :)

At one point in high-school I randomly got eye twitching. No T at the time. Now in hindsight I realise it was most likely from stress. My eye twitching solved itself in about 3 weeks.

Thanks @Gabriel5050 , the doctor is going to give me a call today. It could very well be stress. I have been feeling very anxious recently. Hoping it resolves soon.

Try Bioflavonids if you have fullness in ears.

Any preferable brands @MindOverMatter ?

Personally I've used Nature's Life Bioflavonids @ZFire

If you don't think the musicians' plugs will be strong enough there are these mouldable wax ones from Boots:
https://www.boots.com/boots-mouldable-wax-earplugs-5-pairs-10114104
I used to wear them years ago at live gigs and they really deadened things down, certainly much more than foam ones did.

@UKBloke got the earplugs today. Will give them a try tomorrow. Thanks for the suggestion.

@aura read a few of your posts and I see screaming children and balloons have cause you a few spikes. I will take ear muffs with me just incase. It’s a nightmare having a young child with this condition. I don’t want to limit her in anyway, but then again, I don’t want to worsen my situation. It’s a balancing act.

Yeah,it's better this way. You don't want to stay in a corner, stressed and afraid of every sound. If it's too loud, just put your earmuffs on. Children+balloons=double trouble :)

I don’t know, went to an ENT and he couldn’t tell me what is causing it. Brief mention of MD, but then said it could be Lupus causing it. No offer of any help just said my Rheumatologist should take care of it.

I just feel helpless @OnceUponaTime . I’m in a right state, struggling to get out the house because of pain and inflammation, but terrified to take any medication that could worsen the noise. Might try LDN... I don’t know. All drugs seem scary at the moment.

My Rheumatologist wants me on hydroxychloroquine but it’s linked to hearing loss. I’ve refused. She doesn’t want me in immunosuppressives because my vaccination status. I honestly think she is punishing for refusing the jab. Trying to force my hand.

Insomnia is my middle name.

It’s terrible. I’ve never experienced it before (only started after tinnitus became a thing). So glad my daughter is at nursery today.

Totally normal.

They get very uncomfortable after 30 minutes or so.

Good to know, thanks.

And sometimes you’re even convinced the ear got sore as well..

At least he didn’t blast my ears with sound, but I’m completely gutted. No advice on hydroxychloroquine. He has no idea about hydrops or AIED. Not being big headed, but felt I knew more than him.

‘If it’s autoimmune, there’s nothing we can do to protect your hearing anyway’ WTF kind of doctor is this.

Sorry @Damocles , just having a rant.

Same as @Juan , I feel bad for you guys. Hearing loss and hyperacusis is a horrible combination. I only have some sensitivity to certain sounds, but It doesn’t affect me too much.