Pulsatile tinnitus, headaches and sleep!

[hollyrain]

Hello

Had my audiology test. No deafness but ENT referral that he said could take 18 months, on the pulsatile tinnitus. I spoke to him about the headaches but he said what I described wasn't a red flag. So now we wait.

Can I please ask about these headaches and sleeping? I read to try to sleep with the head elevated with PT which I have been trying. Last night I woke with bounding PT and a really intense pressure headache at the back of my head. To say I was terrified is an understatement. A couple of hours later it subsided and I was able to get some sleep. This morning it's still there but like a "shadow".

Does anybody else get them? Or have any tips about how to get some sleep? Thank you

[Happyrosie]

hollyrain, the following link is a good place to start.

nhs.uk/every-mind-matters/m...

Also, the nhs has good advice on headaches so go to the NHS site and input “headaches” to their search. Personally I find that drinking a lot of water plus the usual painkillers that you buy over the counter are invaluable. By the way, don’t waste your money on branded painkillers - they cost much more and have the same stuff in them. Your pharmacist can advise.

[hollyrain in reply to Happyrosie]

Thank you Happy Rosie, that's a lot if reading to do but I will do it! I've done the ever mind matters test so will also write down the recommendations.

I meant to also state that yesterday I was singing and suddenly out of nowhere I have an echo of me singing, like there is somebody stood behind singing off key. Mainly in my left ear but this morning in both when speaking. My hearing test was only 2 days ago and he said no wax (1 second look both ear....didn't even touch the ear) and

no deafness. My ears feel congested.

This being something I've never experienced before is unsettling

Is it normal withT? Will it just go? I rake on board your comments re analgesia....I do tend to stick to the tried and tested. I ls do need to drink more water. I'm a tea fiend but from today am making the effort

Thank you again 😊

[Happyrosie in reply to hollyrain]

I’ve never come across an “echo” effect in all the time I’ve been in this site, so it’s unusual BUT we are all different. Hardly worth mentioning to your medical people I. think - I’ve seen a poster say here that their doc hadn’t heard of musical tinnitus, which IS a thing, even if unusual. Bear in mind that tea is slightly diuretic so adding water to your daily input would be good.

You’re on your tinnitus journey and it could be a short or a long one but make sure you look after yourself, like walking where you can hear natural sounds like birds singing or, if it’s like today, rain coming down!

[hollyrain in reply to Happyrosie]

The gentle sounds of waves this morning, the sea was very tranquil! Thank you again 😊

[Threeminuteboy]

I was told 18 months for an ENT back when my T started in 2021 , I found a private one that did an appointment in 3 weeks for £200 . They said it would be longer than that when I first called but put me on their list in case of cancelations and I got a callback pretty quick .

[hollyrain in reply to Threeminuteboy]

Thank you for your reply. Can I please ask did you ask your GP to refer you to a Private doc, and how then do you make contact. Did he help? Thank you

[Philip6]

It might be worth you seeing a private ENT, here you can see one for £250. I know you shouldn’t have too but our NHS is wrecked. Bear in mind that in my experience seeing the Consultant was a waste of time, so don’t get your hopes up. I hope you soon feel better.

[hollyrain in reply to Philip6]

Hello, thank you for your reply. Did your GP have to refer you to a Private doc, did you need an MRI? I'm told by Audiologist that I will because of PT. So wondering if I decide to go down that route should I arrange that first so I can take results with me ( I would go Private open MRI scanner bcos I had severe panic attack when tried one before). How are you doing? Thank you

[Philip6]

Hello, I saw an NHS ENT Consultant about 15 years ago and had hearing tests and an MRI. I think you can refer yourself to a private ENT. A private MRI would be expensive I would imagine. Your Dr can refer you for an MRI, mine did. The scan was ok, I just took some Kalms beforehand as I suffer from claustrophobia, but I was fine. I’m not too bad thanks, I get good days and bad days. More bad days lately, unfortunately. It’s no fun at all.

[hollyrain]

Thank you. I had a look at our local private lot.....nobody seems to list Tinnitus as a special interest so I will talk to GP. I'm away now, did wonder about going home to get GP appt together the ball rolling but don't know if I'm becoming too fixated the PT side and potential causes that could be dangerous. The more I think about it the more of a muddle I get into. I can cope with the 24/7 screeching in the other ear but not the headaches and the clogged ears and the scary heartbeat. I hope your good days start to outnumber the bad days very soon. Thank you again

[Threeminuteboy in reply to hollyrain]

sorry Holly I mentioned some videos on YouTube about T by Julian Fellows Hill , it’s Julian Cowan Hill , Fellows is the movie director of Downtown Abbey ha ha

[hollyrain in reply to Threeminuteboy]

I've never watched Downtown Abbey so wouldn't have known 😊 thank you I will have a look shortly.

[Threeminuteboy]

I don’t think any private hospitals will list tinnitus as an interest etc just ask for an appointment with an ENT and if they ask why just say you have an ear problem . Your pressure headaches and palpitations could be the fight or flight stress reaction to the PT , I had 3 months of all that stuff when my T began . Plus remember stress makes it worse , tinnitus feeds on it , it’s a catch 22 cycle of stress /louder tinnitus . In the meantime try to do something that makes you feel good or lowers your stress level .

[hollyrain in reply to Threeminuteboy]

I'm going to see my GP and ask for a management plan and also to talk to him about the key issues worrying me. I think if I could be reassured that I'm not going to drop dead overnight from my neck veins etc, then I will feel better. You are so right, worrying and stress adds all kinds of dimensions to your concerns that you really don't need. Plus I have this "echo" like I am sat on my own shoulder repeating myself. When I sing its very off key lol!! But it just started on Thursday and is constant. Plus something similar in my nose when I breathe.....generally in bed when I am more reclined. Its so strange!! Thank you so much for your reply