Woke up yesterday with an unusual and unrelenting bout of dizziness/light-headedness. I typically have some of this but this new level wont be sustainable.
Not sure that any dietary habit has changed.
PV, JAK2+, been on Pegasys 45mcg for 4 months. Could it be the peg just accumulating and just now showing a new symptom? Others out there on peg experience new symptoms long into treatment without a dose change?
Any chance you have been dehydrated with this heatwave?
Could be - I try to keep hydrated throughout the day though. Thanks
I have been the same it seems to be dehydration its happenrd to me before i get carried away in my garden and forget the time but now i have bought a water cup 1litre and keep it with me all the time. I had one really bad day after jet washing all round tbe house for5 hours without stopping i nearly collapsed with extremely dry throat heavy palpitations had to lean on the bin for a while before i went in took an hour almost to start my head going back to normal x
Morning, sorry you've been feeling unusually feint / light-headed. How have you been since? Did it pass with hydration?
I'm ET JAK2+ & just on aspirin so can't comment on the impact of the drug on your specific MPN although I did used to experience a LOT of light-headedness and dizziness. I know I have generally (& sometimes VERY) low blood pressure so I have to keep hydrated and make sure too that have salt in my diet.
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Ialso find when it's very hot now it makes me feel really strange & I guess that's because of vasodilation of our blood vessels impacting on our already compromised blood composition. Yesterday I felt very feint and heart pounding so I elevated my legs & lay down in a cool room & felt a lot better.
Hope you find the cause and can can relieve the symptoms! Take care, it's another hot one here today!
I can bearly move or think when it's hot, yesterday was bad. It's 7.45 am and the pressure in my head is building, it's going to be a tough day.😢
How are you feeling now ? I would have thought dehydration could be a possibility. Since taking meds for my ET I’ve noticed that sometimes I feel about a bit off but not felt thirsty . Experience has made me down a few glasses of water and within 10 mins I feel much better.
Not on Pegasys, but not weather makes me light headed and dizzy. I also feel nausea. Yesterday I had all the symptoms of a migraine with out the headache and succumbed to taking migraine medication. I tend to stay in the house in this weather or if outside in the shade. My haematoligist told me to avoid extremes of temperature and hot weather makes me ill. I drink loads of fluid each day. Mustn't get dehydrated.
I can only speak from my own experience of having ET(jak2) for over ten years and have been on Hydroxy and interferon during that time (now on pulsed Busulfan). Our conditions have a myriad of 'ailments' niggles and unexplained symptoms, which I feel has a lot to do with side effects because I took myself off medication and it was not long before the fog, fatique and other bits and bobs, including dizziness, went, and I felt a different person.
Of course everyone is an individual and lifestyle, other co-morbidities and age, have their impacts so we will all react differently to our conditions and the treatment we have. Because of our diverse experiences it seems we all have to find our own way of ameliorating these niggles (or worse) because for now, we can't do much else because we are stuck with ou condition. Good luck to everyone and still keep safe - and as well as you can x
Ps. I found the dizziness was a result of ovedosing on blood pressure tablets. Once I reduced them the dizziness subsided and only occurs now if I am tired.
Dizziness is one of the common reactions to Pegasys
online.epocrates.com/drugs/... .
Not sure if you are on any any other meds, but with any of us with PV also having hypertension, those meds often have the same side effect. Taken together, this side effect can be exacerbated.
Certainly something to talk to your tx team about. Hope you get it all sorted out ASAP
Thanks all - it was bad all day on tues and wed, but back to my usual level of light headedness this am. Appreciate the suggestions....drink lots of water and stay out of the heat!
Hi there.
Just to say ,heat is a killer for me....steadily worse over the years since P V diagnosis.I know now to stay as cool as I can ,shutters closed(hate to have to do that),really good cooler and air purifiers full blast,trying to do anything in heat just knocks me out,summers in S W France where I live temperatures are often 30 + for days ,my dogs just lie on cold tile floors ,horses stay in barns.....important to be well hydrated ,big problem is that unlike U K ,we don't cool off in the evening,nights can be just as hot as day......so keep cool always and hydrated,helps to avoid the awful dizziness....I know only too well that to try to keep going you just end up on the floor!!!!Best of Luck to you,take care.
Keep an eye on your blood pressure numbers too. Low bp can cause that
First cause of dizziness is low sugar...overworket, dehydrated, not enough food, etc.
Hi
I had fairly bad bouts of dizziness literally the room spinning at times and then longer periods of being lightheaded. My GP failing to identify a cause referred me to an ear specialist. He felt the symptoms could be due to a condition called BPPV (benign paroxysmal positional vertigo). It happens when small crystals of calcium get loose in your inner ear and is fairly common but often missed. its also easily treated it maybe worth considering along with the other suggestions?
menieres.org.uk/information...
However in my case the dizziness was stress related. I was surprised that stress could manifest with such symptoms. Rapid shallow breathing is the cause And I was unaware l was doing it. I believe Peg can cause anxiety as a side effect ?
In my case it became a bit of a vicious cycle.
I got dizzy worry and breath badly got dizzy etc
l resolved it with breathing excercises. verywellmind.com/abdominal-...
Best of luck sure you will resolve it
Are these symptoms in my head?
ET Hydroxy/short break - Update
ET causing dizziness?
head aches
