Posted , 9 users are following.
I have recently been diagnosed with Primary Polycythaemia Vera and have been given very little information regarding this. I have had 2 lots of venesection so far and am feeling completely worn out and often dizzy. I don't know if this is down to PV or the treatment. Is there anything I can take to help with the dizziness?
0 likes, 18 replies
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angela_o..o karen95311
Posted
Hello Karen,
Although we are all "in the same boat" here we all have different views from our particular seats in that boat.
Some of us get dizzy spells, some get headaches, some get other symptoms such as optical migraines or vertigo. There are loads of different symptoms and they come and go, as the whim takes them, too. It's all very confusing!
I have had the dizziness and the tiredness. Oddly, the venesections made them less noticeable! The tiredness is, for me, a very odd thing. I become suddenly very sleepy, like a two year old child, and have to have a lie down for half an hour. After that I usually feel a lot better.
Do you work or are you retired? If you work, it might be a good idea to tell the HR people about your condition and how it affects you. The trouble with this illness is that we look fine. We just don't always feel how we look.
I would recommend drinking lots of water-based drinks. Anything to keep your body hydrated. I have found that it keeps quite a lot of the symtoms at bay.
Good luck.
snoop_dog_123 angela_o..o
Posted
karen95311 angela_o..o
Posted
Thanks for the information Angela. I work full time but have had to have a few days off with the dizziness. I have kept HR and my boss updated with what's going on and so far they are being supportive. It's all very new to me so it's a bit of a learning curve. There are some symptoms such as headaches and optical migraines that I have been suffering from for months but did not know could be connected. I have my next hospital appointment in a few days and have made a list of questions so hopefully will learn more.
peter98873 karen95311
Posted
If you are suffering dizziness I would suggest it is something you should discuss with your doctor. I have never suffered from this because of PV but again, I have never undergone venesections in all the years since I was officially diagnosed. There is plenty of information available online to which you can refer and give you a better understanding of PV. Similarly you will doubtless receive good advice from others on this site. Further, if you are in UK the NHS supply some useful booklets too. Lethargy and tiredness are symptoms of PV and should be discussed with your doctor. Best wishes.
Peter.
karen95311 peter98873
Posted
Thanks for the reply. I have been a little wary of looking up things on the internet but a friend suggested looking at a forum with other sufferers and I have found reading other peoples stories very helpful. I am off to the hospital in a few days so have made a list of how I have been feeling and will speak to the doctor about it.
peter98873 karen95311
Posted
Hi Karen,
Sounds like you are a very sensible person so do not be too concerned
about using the internet info. Just type your ailment into your search engine
and you will have a selection of sites to peruse. Some are very technical and medically biased but others are very readable, including this "Patient" site, where you'll learn a great deal of how to approach the problem. It needn't be a quagmire. You only need to open the site indicated on the right hand of this particular page to start off with and just take it from there. Because PV is a very rare condition the sites don't get bogged down with trivia. Good idea about the list to put to your doctor, particularly if he/she is a Haematologist. There is plenty of guidance for you already on this forum.
Good luck.
Peter.
karen95311 peter98873
Posted
As I was only diagnosed a short time ago and I had never heard of PV I have tried to read up as much as possible but as the symptoms can be varied I have found it much more useful reading on this forum as everyone on here is dealing with their own experiences:
ellen68007 karen95311
Posted
Hi Karen,
As far as the dizziness goes I as well from time to time experience the same thing. It's a horrible feeling. I keep thinking I am going to pass out. I never go anywhere without a bottle of water. This feeling does not happen a lot but from time to time. I also will take a couple of deep breathes and exhale slowly. That excersize brings your oxygen levels up. It's called pursed lip breathing. My Doctor told me about this and lots of water. Wishing you all the best. This is a great forum that has really helped me.
karen95311 ellen68007
Posted
Thanks Ellen - it's good to know that. I too have been making sure I keep hydrated and always have a bottle of water handy.
Zapamania karen95311
Posted
Hi Karen I've been dx with Pv for 4 years now. I don't have dizziness but do have balance issues. Sometimes when walking I feel like a magnet is pulling me to the right. Also have had 4 mingraines with aura. I'm now on Jakafi for a little over 3 months. So far no mingraines thank god. My dr recently told me to drink water with a high alkaline content like +8. I found it and have just started drinking it. Hope it helps.
karen95311 Zapamania
Posted
Zapamania karen95311
Posted
Hi Karen I've been noticing for a few years that I walk different. I never connected it to Pv. I thought it was my shoes. I bought so many different kind it's ridiculous. The only way I walk fine is barefoot or in flip-flops. So unless I move to Florida I'm pretty screwed. The dizziness and balance issues are definitely Pv related. Please keep me posted as to what your dr says. Thanks. Linda
harrishill1 karen95311
Posted
Hi Karen, dizziness is common after a phleb (venesection). You shd not do too much after having one. After you shd drink some juice, and rest for a while. I have had dizziness in the past, but just rest when that happens. I haven't had it lately.You could ask your hematologist about it. Maybe he has some suggestions. You can find lots of info about PV online. I've read that we can live a normal life span if we are treated. I tend to have a positive outlook, and exercise daily, rest when tired, and otherwise live a normal life. Best of luck, harrishill.
richard96620 karen95311
Posted
If you have dizziness after phlebotomy, I also experienced it, it will go away by the second day. drink more water or fluid......Richard Law
karen95311 richard96620
Posted
Hi Richard - it's been 2 weeks since my last treatment and I still feel dizzy and have a vertigo feeling periodically.
richard96620 karen95311
Posted
As learned, PV patients have sufferred different symptom, but Vertigo, is not so common in PV patient, You may have to consult your doctor, Sometime I have headache ( most likely is due to dehyderation), I start to drink more water, and the symptom go aware after a few hours. Usually I drinks about 2 to 3 litres of water a day....Richard Law