Hi all,
I’ve had CLL for 4 years and remain on watch and wait. Interestingly I’ve been due to start treatment on two occasions and both times have caught Covid which has killed large chunks of white cells.
I’ve recently been suffering really badly with vertigo and severe ear pain. I don’t know if this is CLL related or otherwise and wondered if anyone else has suffered from this?
Thanks
Alan
Alan probably not, and we do tend to assume, until we know otherwise, that other ailments are a result.
Vertigo is unpleasant as is ear pain. Try to get an ENT appointment if you can, but do speak to your GP and discuss your problems. For the vertigo there is something called the Epley movement, but please get it done by a professional and not looking on YouTube as some here suggest. It’s rebalancing the crystals in your inner ear.
The other reason could be you have sinus problems, and that seems to happen to many people here. I had no idea I had infected sinuses until a scan for an eye infection showed it.
Hopefully you have a sympathetic doctor but do discuss with them.
Colette
pre diagnosis I had reoccurring sinus infections which gave me ear ache, migraines and tooth ache. Dentist did xray and showed the sinus cavity had swollen and was touching roots of teeth.
Had same symptoms turned out to be shingles
Hi Alan I since a child have had on going ear problems now know it is due to the tubes in my ears being very narrow so wax can't be expelled in normal way. After a really bad vertigo attack which put me in hospital all the symptoms of a stroke luckily not all down to blocked ear drums. Now under ENT have wax removed 3 monthly so no more problems. Good luck hope you get sorted really don't think anything to do with having CLL.
Hi Alan - I had vertigo, no ear pain, for several months while on W&W. It came on suddenly and left slowly. As with many unexplained issues, I simply chalked it up to CLL. That was at least six years ago and I'm doing fine with Ibrutinib. The vertigo never returned.
I suffer from vertigo sometimes v bad and other times not so. It is called BPPV and treatment with Stemetil helps or the Epley manoeuvre. It tends to be age related and not CLL related according to medics.
If it continues see an ENT. I have eustachian tube disease and it gives me ear pain and vertigo if I don't use steroid spray daily. I have had the benign vertigo thing at times but never any ear pain. I used the dr foster method on YouTube to stop the vertigo with benign vertigo. Her method works better than the Epley method.
when and after I had covid before I was diagnosed with CLL/SLL I had the exact symptoms. Went to several Drs that gave me all kinds of reasons why…had long lasting covid symptoms and I believe the vertigo, ear pain and teeth problems all were a product of having Covid. Inflammation…I started eating better and working to get rid of inflammation and all those symptoms did go away. Just my opinion and how it turned out for me.
I don't think it has anything to do with CLL, but I have similar issues. I have allergies. I've found these GENTLE self massages to be very helpful in reducing my ear pain. They encourage drainage. Maybe you can get some relief while you wait for an ENT appointment. youtu.be/QA-wi0d7-Ro?si=Qqu... and youtu.be/vAs9uFYvcrk?si=dcv... Wishing you well.
Yes, I have the same thing right now. I have to make an appointment with an ent. My doctor put me on Bactrim, Zofran, and meclizine.
thanks all for your comments / contributions. Following an appointment with my haematologist and an MRI scan she confirmed the issue is CLL related. The cause is severe anaemia requing me to start treatment immediately. My next CLL journey begins now 🤞
Thanks again
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