I was diagnosed 12/20 started with phlebotomy only and then my choice with my Hemo/Onocoligist decided to go right on Besremi. I am having excellent results other than I still have a full dizziness feeling in the back of my head. It is most annoying and does impact my day. I realize this is a symptom of both PV and Besremi. Does anyone else experience this symptom and if so any tips on how to manage this issue. When I do research myself I get all kinds of possible medications if there is a medication I would be interested if anyone has had experience with medication or any alternate solution. I always appreciate all of you with any help.
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josup26
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I presume you’re in the US? Besremi isn’t licensed here so I can’t comment on that. However, having had PV for 15 years I do very occasionally feel dizzy. Could be a hydration/ exercise problem?
I find if I drink half to a litre of water followed by a good brisk walk for an hour that generally sorts it, but if your dizziness is drug related then I m sure Hunter will help.
I take hydroxicarbamide.
Wishing you all the very best and a Happy Christmas.
CALR Et here so I know nothing about PV but my sick dizzy head has improved noticeably after changing diet. SIBO test and research suggests I need to avoid FODMAPS and that I am sensitive to histamine. Recommend nutritional evaluation and searching the internet. This site is one of my favorite. amymyersmd.com/article/hist...
dizziness and full head can be caused by many things of course, how are your counts now ie Hgb , Hct , RBC, platelets and whites., I note your Hct has been too high pre Bes and wonder if it’s optimal now. Often if people have the full head feeling it can be that, ie too much thick blood. I have PV and if my Hgb goes over 150 despite Hct being 40/41 I can feel a bit dizzy and eventually spinning vertigo. Although the guidelines say Hct under 45 for men and some docs say women 43 many don’t feel well at those levels and need lower Hct.
It sounds like the full head dizzy feeling started before the Besremi and the Besremi has not made it better. Assuming that is the case, it would be reasonable to think that the PV may be the cause. As ainslie notes, getting your erythrocytosis under control may resolve the problem; however, it may require additional intervention. What you are describing could be a microvascular symptom of the PV. It may be related to how the blood cells are behaving, not just how many there are. Some people find that one aspirin/day is not enough to resolve MPN microvascular symptoms. Some require low-dose aspirin 2x/day or another approach to reducing the "stickiness" of the blood cells.
There can be other reasons for why you are experiencing the full head dizzy issue. This would require an assessment by a neurologist working in collaboration with your MPN care team. That is not to say that the issue is something separate from the PV, just that it is possible. While I would be more suspicious of a PV-related microvascular issue, it is worth noting that this issue appears to be happening in your brain. Perhaps a neurology consult is in order just to rule out something else going on.
You are correct to note that esremi can cause dizziness. If the Besremi made the symptom worse or the symptom did not occur until after starting the Besremi, it would be reasonable to suspect the Besremi as a case. Sometimes, timing of the symptom is the best clue.
A MPN Specialist can best help you sort out what is going on and how to intervene, Additional assessment and collaboration may be needed. I hope you get the issue sorted out soon.
Please do let us know what you learn and how you get on.
Hunter thank you once again. I will be seeing my Hemo this week and will mention this to him. Actually I started my path with a neurologist and had a lot of testing which all came back normal. The Urologist is the one that recognized the high HCT and from there I went right to Hematologist Onocologist. If it wasn't for these periods of a full head and feeling dizzy I feel great. Hopefully we will get to the bottom of this.
I also started with PV in 2020. Experienced light dizziness most mornings and assumed it was caused by the blood issue. However, after 2 consultations with my doctor's NP who advised more water intake I can say that, for me, it was the answer. I drink 12 ounces before my early morning dog walk, another 12 with breakfast and lunch and as needed the rest of the day. I thought I was drinking enough - I wasn't. Happy to report no dizziness in many months. Hope this helps. Good luck because I know it is uncomfortable.
I meant to respond to this yesterday. I have this issue too. Of course I had it bad before I got my diagnosis of PV which was a different kind of dizziness than what I experience day to day. For me it is more of a fullness and mine is stress related. Feel awesome at home but any little stress at work and I feel it. I drink 64oz of water a day and I also make sure I keep my temperature regulated! As some of mine maybe perimenopause. And I am now on thyroid medication due to the Besremi. So, I don’t think mine is from Besremi. I am just so hyper focused on any little thing. But if I don’t get stressed or hot I usually have no issues. This may be nothing like what you have but I thought I would mention it. Happy holidays!!!!
Thank you so much. I do find changes in temperature can affect how I feel. I to am a worrier to which helps nothing. I do thank you for your response. Best of the season to you and good health!
I have PV diagnosed 10/21, started Besremi 15 months ago and blood counts are all now controlled. I experience a dizzy, floating feeling with head pressure at various intensities throughout every day. I often lose balance and bump against walls or have to brace myself to keep from falling. This started gradually after diagnosis and way before starting Besremi when I only had phlebotomies.
I stay well hydrated, drinking at least six 16oz glasses of water/day. My iron levels are good and I take B12 supplement. I consume a healthy vegetarian diet with virtually no high-processed foods or added sugar. I have been evaluated by a cardiologist and neurologist, had brain and cervical spine MRI, thyroid testing and more to find a cause for the dizziness. No cause has been found.
The dizziness gets worse with stress, especially if I am startled. Before diagnosis I could walk all day at work and exercise without problems. Now I get must use a walking stick when going on short 10-15 minute walks. My MPN specialist says PV shouldn't cause this if my counts are controlled, but I suspect Hunter is correct about microvascular issues.
I hope you find a solution that works for you; please let us know if you do.
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