CLL and Dizzy spells: My sister is 42 diagnosed... - CLL Support

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CLL and Dizzy spells

JessienPete profile image
14 Replies

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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JessienPete profile image
JessienPete
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14 Replies
PlanetaryKim profile image
PlanetaryKim

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!

kim

Tommays56 profile image
Tommays56

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

mayoclinic.org/diseases-con...

Name-1 profile image
Name-1 in reply to Tommays56

Dizzines is symptom many diseases...

trswarranty profile image
trswarranty

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

cll2013 profile image
cll2013

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.

hmo1 profile image
hmo1

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.

hope-springs profile image
hope-springs

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.

Irishezs profile image
Irishezs

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

JessienPete profile image
JessienPete in reply to Irishezs

Thank you!

Irishezs profile image
Irishezs

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

Cathyp123 profile image
Cathyp123

Read this. leukaemia.org.au/disease-in... Right in the beginning. Says dizziness is a symptom.

Drea22 profile image
Drea22

I am also 42 and was just diagnosed with CLL. I have just started suffering dizzy spells and wondered if it was related. If I turn in bed too quickly or tip my head to look at something from an angle, I start to get the spins. It can be as bad as feeling like the sensation of barrel rolling down a hill. It's terrible. I need to talk to my hematologist to see what can be done to help

AussieNeil profile image
AussieNeilAdministrator in reply to Drea22

You might get faster and more appropriate support from your GP/PCP. If you aren't anaemic, then postural hypotension or perhaps problems with your inner ear (balance) could be the cause:

en.wikipedia.org/wiki/Ortho...

Neil

Drea22 profile image
Drea22 in reply to AussieNeil

Thanks Neil. I will seek my GP instead of starting with hema. I appreciate your quick response and this forum/ community.

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