CLL and Dizzy spells

My sister is 42 diagnosed with CLL unmutated in Sep 2017 she is on a watch and wait. We are new to trying to understand CLL and be in tune with her symptoms and researching what CLL is and how to live a normal life with CLL. My sister has been experiencing bad dizzy spells for about a month. The doctor says that dizziness is not a CLL symptom however my sister never experienced dizziness before and now it seems its daily at any time of day even if she is laying down resting. Has anyone had this problem since being diagnosed with CLL? Also, is there something she can do to treat this? I find it hard to believe this is not CLL related.


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10 Replies

  • Hi JessienPete. It would be useful to check your sister's blood pressure while she is having a dizzy spell. A home BP machine is needed. Pretty cheap in drugstores. Also, make sure your sister is getting hard copies of all her lab results on her blood tests so she can review them as time goes on - even if she and you might not understand the significance of the lab work right now. One thing to keep an eye on is Hemoglobin. If it is below normal (anemia) that can result in dizziness (not enough oxygen circulating). Anemia is not uncommon with CLL as it progresses. I was anemic for 2+ years before commencing treatment.

    Good luck to both of you!


  • Hi Jessien

    I am 61 with 2017 CLL diagnoses and the first issues I had before the firm CLL Diagnoses were from the Denist who felt I had a health issue and and ENT in 2016

    For reasons that I am sure are related to CLL I lost all my immunity to outdoors and and none of the normal OTC things worked anymore and I went through a series of experiments until a nasal spray was found that would control this

    The end result is while I function I have to be very careful about dizziness as while the spray works I have to balance the side effects of it and I would certainly consult with and ENT or other Doctor as nessary as any small issues with your ears will cause the dizziness

  • Dizzines is symptom many diseases...

  • My husband was diagnosed with CLL in July.

    Maybe because he suffers from

    Anxiety but any ailment he has

    Now he relates

    To his CLL which can be dangerous in itself

    He had a water infection for 2 months before he bought

    It was bought to my attention ( by passing out )

    He has suffered from dizziness breathlessness lathargic and generally feeling unwell

    I asked the GP to check his vitamin D levels as well because these are not covered with the full bloods that’s are done while you watch and wait

    We found out they are half the levels they should be

    Since he has been on antibiotics x 2 and vitamin D supplements he is not so dizzy and is generally feeling better in himself

  • Yes, I have experienced dizzy spells from time to time. It is hard to know if it is associated with CLL or just age related. I have what I describe as "off days" where I have extreme tiredness and just spend the day sleeping or resting. The next time I am back to my CLL normal. Sometimes these "off days" include dizzy spells.

  • I have dizzy spells...I always get them after I have had a cold or virus. Sometimes the virus settles in the inner ear and it could take months before you feel better. One thing I have learned is if you stare at an object it will ease the dizziness.

  • Yep I'm 48, diagnosed in march this year and suffer dizzy spells, I think it's related to CLL as others on here have said they get it too.

  • Hi JessienPete, I am in early stage cll, and I too am plagued with dizzy spells and severe nausea leavening me feeling I can't eat. But you can get Semitic in different strengths and it works very well....speak to the family Doctor. And good look for the future.xx

  • Thank you!

  • Hi, Sorry typo error above in my message the drug for severe nausea and dizziness is STEMETIL/Prochlorperazine in different strengths.

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