[Anonymous]

Hi all

Firstly, some of you may remember, I went down hill hill during June/July, as my Myeloma had started to come back.

I’ve now finished the second cycle of Velcade, and am on the second dose of cycle three in the morning.

I feel much better, well, apart from the doziness from the Velcade.

The PP’s are down to 10, from what they were in July, which was 46.

I’ve got four cycles in total, so will take me up to somewhere in the middle of December, as I’m having the four weeks on, with one week off version of the treatment.

I don’t yet know what I’ll have after that, will just have to wait and see.

Anyway, that aside, on to my query.

Over the past two/three months or so, I’ve had something going on with my ear. Having googled the symptoms, it sounds very much like something called, pulsatile tinnitus. It is like a whooshing sound in my left ear, just like a heartbeat, and comes and goes.

There is no pattern to when it starts or stops, none at all.

It can last all day, a few hours, or several days at a time.

Having mentioned it to a consultant at Bart’s, and one at my local hospital whilst having a regular Myeloma appointment, each of them decided that it wasn’t in any way related to Myeloma, and or any side-effects of related Myeloma treatment.

So just to be sure, is there anyone out there that had had this?

I saw a GP today, never seen him before, and I ended up walking out, as he was a complete numpty.

He was trying to insist that it was likely caused through having chemo, along with me feeling anxious due to having cancer.

Bloody heck, I wanted to slap him, lol, as he just wasn’t listening.

I only wanted to know from him if he had come across it, and if he had any idea of any of the reasons that bring it on.

Lol, He suggested I go home, and come back in a couple of weeks if it persists.

All the reasons I read about when I googled it, I can rule out for myself.

If it carries on for another few months, I’ll go back to my surgery, but insist on seeing another GP.

When it is hear, it’s a bit of a sensory overload, e.g. being blind already, having the normal whistling tinnitus, which I’ve had for over 20 years, then this blumin loud whooshing noise in my left ear.

Anyway, if anyone has heard of it, and can shed any light, then please reply.

Best to all

Terry

[wendyduffieldParticipant]

Hi Terry

I got the same sensations (pulsing and whooshing noises on my last treatment which started after a cold which my GP thought was caused by a blocked nose, but it never went away. My haematology team ruled out myeloma ( I even had a MRI scan of the head) and referred me to ENT. They diagnosed tinnitus and mild hearing loss and said it was something I had to live with. I am convinced it was brought on by the chemo or the dex. It eventually went away for a while but is now back whilst on Velcade and Dex but is much milder than last time and not constant.

I would get your GP or consultant to refer you to ENT. Pleased to see your numbers have come down.

Regards

Wendy

[MicheleParticipant]

Now that you mention it I do remember having ear problems a few months after my SCT.
It wasn't all the time, but some days it seemed as though I was in an aeroplane and I could hear throbbing engine noises in my head.

I went to see my doctor and she told me my ear canals were inflamed and blocked.
I inhaled steam with eucalyptus and menthol added to the hot water to help unblock the canals.
It drove me a bit mad at the time, but it did go away.

[CarolsymonsParticipant]

I am in cycle 6 CDT and I have this! I hear my heart beat as a whooshing external throbbing, which drives me mad! Luckily (or maybe not) I have some hearing loss and tinnitus in one ear so lie on the good ear to try to block the noise and get some sleep. I reckon it's the darn drugs but haven't asked any doctors…….doubt if they would be interested.

Carol

[MothasParticipant]

Terry I have tinnitus and I'm sure I got it as a side effect of the Velcade cycles I had at the beginning of the year. Like you it comes and goes. If I'm tired or a bit stressed it's worse.

I did a little bit of research and found out that some people see it as a form of neuropathy. I'm pretty much resigned to having it now, it's the least of my worries really 😀

[Anonymous]

Hi

Firstly, thanks for those that replied.

In some ways its nice to know I'm not the only Myeloma to have this issue, though that said, I guess it's not necessrily down to the side effects of Myeloma, I just don't know.

Wendy, always enjoy your replies, it's a shame you are not local, as I'd love to catch up with you in Myeloma sort of get-together type of thing.

Always good to see your messages and replies.
.

Anyway, strangely, I'm actually having a week off from the whooshing sounds this week, and have no idea as to why.

That said, the only thing that spring to mind, is that I've purposely not had any alcohol at all this week, as I wanted to give my body a break.

Now, the consumption of alcohol whilst on Velcade? What is too much alcohol?

Generally, I would always go over the "so called" government recommendations, 28 units a week, but I guess going over it too much whilst having the Velcade and associated drugs through ones body isn't a sensible thing in the first place, but it is a nice escape from the sensory over-load I'm geting recently.

RP, Charles Bonnet sindrome, the normal whistling tinnitis, and the new pulsatile tinnitis, jesus folks, it's enough to encourage anyone to crack open a bottle of red, or a real ale, a large G&T, the occasional glass of white, lol,

Goodness, there are a lot of people on this group, all with Myeloma, and a whole range of associated issues, what a funny old bunch we all are. In the nicest possible way, I might add, 🙂

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