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CLL Support Association
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Strange dizziness - anyone else get this?

I've been W&W for a couple of years, but the last time I was checked the consultant was concerned about the WBC count (and enlarged spleen).

And generally I'm doing ok, but I have been getting VERY dizzy lately. It's almost like vertigo. I don't even have to get up fast and this wretched dizziness hits - and hard. I have no infections, my ears & hearing are fine. And I'm concerned. Is it the CLL? Has anyone else suffered like this?

Thanks in advance, and good luck to us all.

David

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I had vertigo once and due to an infection in my inner ear. It was awful. I had uncontrollable nausea with it. The room was spinning.

I would go to an ENT specialist to work you up for the causes of vertigo. They have audiologists to really test your hearing. Plus they look in your ears for problems. Plus I would gets the basics checked like your blood pressure etc.

I read on this site about lymph nodes pressing on the Eustachian tube that drains the ear. But you would need radiology studies to check for big nodes. I would tell your CLL specialist, of course.

I would wait for folks who had disease longer than me to reply.

Best wishes to you,

-John

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I had a bad episode of this prior to treatment David and I’m pretty sure it was related to nodal pressure. Make sure your haemoglobin is ok too as anaemia can cause dizziness and lightheadedness.

You may wish to lock your post to this community with an identifiable avatar.

Best wishes,

Newdawn

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Prior to starting treatment, I had dizziness along with blurred vision and headaches. This was attributed to enlarged lymph nodes in my neck putting pressure on my inner ear. Immediately upon starting ibrutinib, my nodes shrank and the problem was resolved. That was my experience - we're all different and I agree with those who recommend you see both your CLL specialist and an ENT as it could be any number of things.

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I have had CLL for 30+ years and 27 of those years on treatment and from time to time have been dizzy or have been lightheaded and each time it was related to iron issues and not just anemia. I have had iron infusions in the past but am now on Folivane+Plus PO Cap, which is a Rx heavy iron plus tablet and that has been keeping me out of iron issues. Now, I do have an issue from time to time with anemia and will be a tad dizzy or lightheaded but not to the point of passing out or falling as when I was having the all out iron issue.

Please don’t let this go as it could get you into having bigger issues. Good luck to you!

🙏😍☘️💕

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ENT will check crystals in your ears by looking into your eyes. If the crystals float away from your ears you get vertigo. Quick tilt of head in a special way by a professional will put the crystals back. It's called Epley treatment.

Dizziness can be side effects of lots of medications. Maybe something else ur taking is contributing. Are any nodes growing near your ears? Did you get a new prescription for eye glasses or need glasses? Friend of mine had a problem with her eye glasses and got dizzy from time to time. 💕

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Hi David ive just had an episode of vertigo first one ever. It was awful -no cause found . It settled down then i found i had low vitimin B12- now on injections. I now feel slightly dizzy for no reason. Could be CLL related but not sure. Best to get it checked out.

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Long time vertigo sufferer, pre CLL. They think it is restricted crystal movement in inner ear resulting from damage from frequent tonsillitis as a kid or small physical genetic defect in the inner ear structure. Mine is triggered by some food additives that must cause a temporary change or swelling in the structure or fluid. I take antihistamines which work well. When mine hits I have no time to safely drive to professional to perform the head movements and have only succeeded in making myself extremely nauseous attempting the procedure. I had been given comprehensive office instruction to prevent it escalating. So I continue with antihistamines with ENT approval. I had all the testing. Not medication related, not anemic, not nodes, not salt induced. Get checked out by your doctors to narrow it down to what specifically is going on with yours.

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I get vertigo from time to time when my ears get plugged. However, I also get a different kind of dizzy from neck nodes pressing on blood supply to my head. It is a very different feeling than the vertigo. I also get dizziness if I don’t get enough water and get a bit dehydrated. It is quite amazing how not enough water can cause all kinds of issues including fatigue, dizziness, nausea, muscle cramping. I have found just drinking a couple of extra glasses of water 💧 fixes a lot!

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Strangely, I’ve been getting vertigo lately also. But ... as of 2-3 months ago, my numbers were relatively low, I have had no other symptoms, and no nodal involvement (that I am aware of).

In my case it is new. I don’t know what to do about it as my “CLL expert” wants nothing to do with me until I present something challenging to him, and I have no other Dr’s who really know much about CLL - other than what Dr. Google tells them. I think I will try t2aa’s idea and drink some more water.

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David,

Take it easy and dont go anywhere dangerous etc. whilst you wait for results. As the other posters say there are a number of simpe reasons, so just hang on until you get the results.

Take care,

Ernest

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It’s probably signs of anemia, what are your iron levels like ?

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This is interesting. I found this post doing a search because I’ve had increasing episodes of dizziness - no nausea. My last blood work about a month ago was all normal (I have SLL) but I do have lots of nodes in my neck (both sides). I also have a whack-ton of them in my midsection - from about mid chest down to my groin. One grouping is 12cm. I had wondered if they were pressing on some organ or vessel. I know they encase “the aorta IVC and major mesenteric vessels” which I was told is not at as bad as it sounds.

I’m not anemic and I don’t have ear infections or sinus trouble. But I do have lots of nodes as I say.

Thanks

Heather 🇨🇦

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