CLL&Dizziness,Cloudy Brain....anyone?

[deanna2289]

I was diagnosed with CLL 3 years ago. I have had skin issues, severe allergies all of a sudden to things I was never allergic to prior to diagnosis.

I did 4 round of Rituximab and then a year later tried Imbruvica. I truly believe the Rituximab caused my random sores. After getting off the Imbruvica which has me

more concerned. I have had 'cloudy brain' it is the best way I can explain it, along with dizziness, fatigue and lightheadedness.

Has anyone had these symptoms or side affects..... If so what did you do that worked.

[Cllcanada Top Poster CURE Hero]

Have you consulted a cardiologist, had any heart diagnostics performed?

You failed Imbruvica (ibrutinib), how?

Have you been advised to try Idelalisib (Zydelig) for example?

just trying to get a less cloudy picture of your situation... 🌤

I have all those symptoms...by the way...

~chris

[deanna2289 in reply to Cllcanada]

Imbruvica can severe upper back/joint pain. It is not off the list of meds I can take. The side affects did not happen until 3 months after taking it.

I have had Vertigo type symptoms and I am concerned because it is causing me to have problems at work.

My primary wanted to send me to Neuro... I just dont know if it is necessary.

[Cllcanada Top Poster CURE Hero in reply to deanna2289]

I would certainly see a neurologist, and an ENT doc... if it is impacting your work and quality of life..perhaps a brain/spine MRI is in order..

I also suffered from vertigo for about 3 years, but the source was never found... I just learned what triggered it and avoided those situations... it came one day... stayed 3 years and vanished...

You need to be proactive... we tend to assume everything is related to CLL but often it is not...

~chris

[MsLockYourPosts Passed Volunteer]

I agree with Chris that it is important to follow up with other specialists. A good friend (no CLL) arrived at work one day and landed on the floor with everything spinning - very sudden onset of vertigo). It took some time to get the proper diagnosis and physical therapy before she got some relief. She now, like Chris, knows the triggers and is usually able to avoid them or ride out an episode. If we are doing something together and she suddenly grabs my arm I know that her world is spinning a little that day.

Are you now getting no treatment for the CLL? Were you just taken off of the Imbruvica or have you been off of it for a while? How are your counts and other symptoms?

[Hershey]

Vertigo is a true motion type of dysequilibrium and I am assuming that is what you are describing. It can be experienced as spinning, sea legs, or an off balance sensation.Vertigo is usually vestibular in origin. In some cases it can be central from the CNS though less commonly so. A primary care physician can often start the evaluation with a thorough history and basic testing including a Dix Hall Pike maneuver which will identify one on the most common types of vertigo, benign pasroxysmal positionsal vertigo (BPPV). The primary can then point you to the appropriate specialist ie ENT or Neuro for further evaluation.

In contrast to vertigo, people often experience lightheadedness or presyncope, yet mislabel that as vertigo. Lightheadedness can point towards a neuro or cardiac issue, and presyncope is usually cardiac in origin. And finally weakness, anemia, volume depletion can cause dizziness though not vertiginous in nature.

The best place to start is with a prinary care physician who should be able to sort out the right organ system to evaluate and get you pointed in the right direction.

[DocM]

I have all those symptoms, and have never undergone any treatment

[lexie]

You mention sudden allergies. I have had vertigo off and on for 20 years and can directly attribute mine to certain food allergies. For years my pcp had me take Benadryl, but I was able to pin point the food triggers so no longer take anything and no longer have episodes. I would suggest starting a conversation with your doctors about this rather than wasting time like I did.

[walkingspirit33]

I am taking imbutinib and have started having the symptoms you describe after about 5-6 mos into treatment.My primary is also looking at other possible causes.I have also have lose some strength in my right hand and arm ,as well as bad cramps in my hands and legs. and eyelid refusing to open at times.

Has anyone else had these symptoms also.?

[PaulaS Volunteer in reply to walkingspirit33]

Hi Walkingspirit,

I'm not an expert, but from what I've read on this site, I don't remember anyone else mentioning those symptoms you're getting (losing strength in hand and arm, and eyelids sometimes refusing to open.) Could be due to something completely different - not related to CLL or Ibrutinib. it's good to know that your doctor is looking for other possible causes...

It's still relatively early days for Ibrutinib though, and some side effects are only just being recognised.

I hope you find some answers to these things soon,

Wishing you well,

Paula

[walkingspirit33 in reply to PaulaS]

Thank you Paula for the kind words.I am being treated through the VA(veterans administration)for financial reasons.It takes them awhile to work through their protocols, lol.

Have a grand day.

[PaulaS Volunteer in reply to walkingspirit33]

Sorry things are taking so long, Walkingspirit. If your symptoms get worse, especially the weakness in your hand and arm, and the eyelid problem, I hope you'll go back to your medics and try and get quicker attention...

Let us know how you get on,

Wishing you all the best,

Paula

[walkingspirit33]

Thank you Paula,

I went to eye doctor and he wants to talk with me some more.He also set up an appointment with a plastic surgeon to see if the eye lid has an elongated muscle and if so ;maybe she can repair it.

[PaulaS Volunteer in reply to walkingspirit33]

Good to know things are happening now, walkingspirit, re dealing with your eye symptoms. I hope they can do something that helps.

Paula

[deanna2289]

Sorry I have not replied sooner. I finally made an appt at Mayo Clinic in Rochester MN.

I can't explain my dizziness, lightheadedness, forgetfulness etc

I have large nodes on my neck, armpits, back of my neck and back of my head.

Still have the randoms sore showing up daily and because of my immune system they don't heal and when they do they leave dark scars. However vain this may sound I am embarrassed of them and want answers.

Someone dais something to me that made a lot of sense....when you tell your doctor that you have had random episodes with hives your whole life prior to my CLL diagnosis they are are Oncologists they only see the cancer and not the bigger picture. You need to be somewhere where there are a lot of different doctors to look at it from different angles.

So I requested all my medical records from when I was 5years old on. To start from the beginning and hopefully get some answers.

[Lbrinks18 in reply to deanna2289]

Do you have any other updates or did they find the cause of your symptoms?