Diagnosed with cll mid april, the lymphnodes grows rapidly. During that periode I noticed, especially when tired, that i “hear” the bloodflows in my head. Just like I have running up and down the stairs. I related it with the grow of the lymphnodes.
Now i am on V&O in cycle 3, great results regarding lymphnodes and bloodvalues.
Except for the continues bloodfllow and heartbeat “noise” in my head.
Sometimes it is just to much, especially when tired.
My GP relates it to a somewhat low Hb (hemoglobine) of 7.0 mmmol/l. My hematologist cannot relate it to the CLL or V&O treatment.
Does it sound familiar? Any advice?
Thank you so much, in advance!
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Dutchie-1963
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I was just about to ask how your Hb was when I started reading...and yours is low. It is definitely a symptom of your low Hb, I had the same when my Hb was around that level. It will get better when your Hb goes up which should happen very soon as you go through your treatment. I had O+V and it is a great treatment. All the best.
I experienced the symptom you are currently experiencing during my initial treatment. Your doctors may give you blood transfusions as a bridge until your treatment enables your bone marrow to produce more hemoglobin. It will get better soon.
I experienced pulsatile tinnitus just as you are describing when I was quite anaemic but also when my blood pressure was out of control. It stopped when we got my blood pressure down again, thank goodness because I found it quite scary.
I think I'm saying please check your blood pressure.
The symptoms you describe are well known to be associated with low hemoglobin. I wonder with your hemoglobin so low if your doctor has evaluated you for hemolytic anemia (AIHA). Given the known association between AIHA and cll, I would think AIHA would at least be suspected with a hemoglobin of 7.
I had transfusions when my hemoglobin was that low. Once they got my AIHA under control and my hemoglobin returned to normal levels, the ocean roar in my ears went away.
I am not qualified to say whether you have AIHA or not. If you do have AIHA, treating your cll might reverse AIHA as well. You might consider asking your doctor if he thinks your very low hemoglobin is purely Cll related or if AIHA has been ruled out. If you have access to your medical records, you might look to see if a Coombs test for AIHA has been done.
In any event, I would expect that V plus O will help your hemoglobin eventually normalize which should help with the pounding noise you are experiencing. Good luck.
Cajunjeff, thanks for your respons. On Starting the V&O, Hb was even lower (6.4). In treatment it is raised to now 7.0. I will check the AIHA and Coombs with her.
I just checked my labresults prior to treatment. Direct Coombs was negative by then. I will check it out with her.
I remember that it was very bothersome and made it difficult to get to sleep. Not only hearing and feeling the pulsations in my head but some acute hearing loss in one ear from the enlarging lymph nodes. I experienced a wonderful relief from the awful pulsations, anemia, and so many other problems with starting CLL treatment! My hearing in the one ear returned and I have not been anemic for the past 3 years now.
Since I have been on Acalabrutinib I was getting the exact same thing like a pulse beating in my ears. But it has now gone . I have been on my medication for nearly 8 weeks. I’m not sure what causes it. But it doesn’t seem to be happening anymore.
Yep, I have had this pulsatile tinnitus too. It troubled me so much, especially when trying to sleep, that I bought an inexpensive sound oasis with pillow speakers which provides a variety of pleasant noise options through your pillow to drown out the internal pulsing. My favourite was the sound of waves lapping! Soothing and it works. I’m on Acalabrutinib and the tinnitus is thankfully gradually receding. Good luck with your treatment.
My sister also had cll she said she heard what sounded like a busy signal in her ears found out she needed a blood transfusion. Her heart was working hard with not enough blood.
Oh my goodness I thought I was going mad I have the same problem but my blood pressure has been really high and I thought it was due to that thank you so much for sharing xxx
Before I started Ibrutinib in 2020 I was anaemic and had pulsatile tinnitus. It is very disconcerting to hear your heart beating in your ears; particularly when lying in bed. It sounded rather like that whooshing noise you can hear when you see a heart beating on a monitor as well. Don’t worry. It does go away when the anaemia goes away.
I had a similar situation with the same treatment. However, I also live in the mountains at 4100ft and that can cause tinnitus also. I went to an ENT doctor who found I had fluid behind one of my ears. He inserted a small tube ,like they do for children, and mine got much better. He took it out after a year when my treatment was done. This doesn't mean you have fluid on your ear but you may want to have it checked? Good luck!
I have this, but hadn't associated it with CLL or low Haemoglobin. I've mentioned it to several HCWs, including a GP and Cardiologist, but neither made any comment! I had chalked it up to high blood pressure, which is much better now with a change of BP meds (Sotalol to Bisoprolol), and the tinnitus has subsided a little to tolerable levels. It had been very disturbing, and kept me awake at night. As it has subsided somewhat, I thought maybe I was just getting used to it.
NOW, thanks to you and the wisdom of those commenting, I know more and will follow up the Hb angle. (I've had problems with low Hb before.)
I have a friend who is further along in her CLL journey than I am, and she is experiencing this very issue. I've shared the info with her from this post and the comments, etc, and she now has new and informed talking points and questions for her various doctors as they hadn't discussed Hb or anemia in relation to it yet. Thanks to everyone for the comments and shared wisdom. 🫂
Towards the beginning of my O & V treatment this past July, I experienced that pulsing in my ears. It had not occurred to me that it might be related to my hemoglobin, which sank to the 7’s around the same time. So, thank you for this info! For me, it was reminiscent of when I was hyperthyroid years ago. At that time, I had unremitting whooshing, which resolved once the hyperthyroid condition was treated.
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