Lightheadedness

[Wyebird]

Hi folks, I’m CALR ET.

Can anyone discribe their lightheadedness symptoms please?Over the last few weeks I have had moments of lightheadedness. I had one yesterday. That one happened whilst looking into the dentist’s lamp. and one today whilst in bed. They come in a wave form and last for what seems like a minute.

Is this a symptom of ET?

[Aime]

Hi, have you any visual disturbance with these episodes? Perhaps like looking through broken glass or with flashing lights. I get ocular migraines which I have described, I just wondered if any of the symptoms were the same?

Kindest regards

Aime x😺

[Wyebird in reply to Aime]

Afraid not, I’ve laid down all day today which after a hectic day yesterday didn’t worry me. This morning’s funny turn has left me tired, and heavy headed. Also not with it enough to drive. I was just wondering if the MPN lightheadedness was something that comes and goes in peaks and troughs. Just terrified of having another stroke.

Thankyou for replying.

[Aime in reply to Wyebird]

Hi, if these are new symptoms I would get them checked out. There may be no reason to worry at all but always better safe than sorry and also to identify the exact cause of these feelings. It is better to find out exactly what is responsible and relieve you of your fears, than keep on worrying because that doesn’t help and makes things worse. I try to ask about anything new, even if it seems trivial to me and then I can file those concerns away in the miscellaneous folder!

Take care, keep in touch,

Kindest regards Aimexx😺😺

[Wyebird in reply to Aime]

Thank you. Yes I think I need to but the bullet. It’s good when someone encourages you to act. More so than when it’s someone with the same condition. Thank you

[Ebot]

I agree get yourself checked out. But I also wonder if you aren’t a bit dehydrated - especially if it’s been unusually hot wherever you live. Certainly being underwatered can make you feel generally lightheaded and under par. And you say things had been quite hectic. Hope you feel better soon.

[Jocko]

Hi Wyebird,

I was diagnosed with ET CALR+ in May 2017. Prior to that I had had another episode where I felt like I was going to pass out. Over years I had occasions when I felt really light headed, like I was about to pass out , vision was all over the place I couldn't focus, I couldn't speak and had pins and needles in my lips. This would pass over a few minutes. Someone suggested it was a type of migraine. On the back of one of these episodes I went to the doctor and was eventually diagnosed with ET. I don't know if ET caused this but since my platelets are down it hadn't happened since. Is this similar to your light-headedness ?

[Ovingite]

Hi Wyebird,

I totally agree with Amie - get it checked out by your GP. I am ET - JAK2 and quite frequently had dizzy / disorientation spells. Some of it seems to be down to hydroxycarbamide but I also have high blood pressure that causes dizziness etc. In short, there can be many causes and only a doctor can diagnose it properly. You will feel much better when you know the cause

John

[Wyebird in reply to Ovingite]

Thank you I think I’ll get a blood pressure machine just to be on the safe side. The other replies are classic of what I experienced. I’m now reassured I’m not having another stroke.

[heathermc]

Had an episode last week.. felt quite dizzy was a bit unnerving. Hot weather could be to blame.. like you have ET and Calr first one I've had for a while. . I had drank plenty.. just felt very tired and ended up sleeping the rest of the day.

Think it's something we have to get use to.

Hope your ok.

[Wyebird in reply to heathermc]

Yes I fought the tiredness on Monday for the sake of my grandson but after another episode yesterday morning I became very tired and anxious which didn’t help. Yet again, thank you. I needn’t worry. It’s just ET!!!!

[ChelseaF]

I experience this frequently and have to pause a moment to get my bearings. The lights in warehouse type stores with high ceilings especially bother me and sometimes I have to shield my eyes in those types of stores.

[Wyebird in reply to ChelseaF]

Oh thank you soooo much. When in the dentist chair on Monday I looked up as the Dentist switched the light on and I went light headed. I’m so relieved, I thought I was heading for another stroke. Phew!

[ChelseaF]

It’s always best to mention new symptoms to the doctor but hopefully it’s nothing too serious. It’s sure annoying though!

[Wyebird]

Will do xxxxx

[Inca]

Yep! To all of you....I get very light headed when have overdone things,have nearly passed out occasionally,usually supermarche,lights ,tiredness,stress of shopping....before diagnosis had many visual migraine type episodes..was thought to be my ears,losing balance ,ringing noises in ears....on and on with various funny spells,it obviously goes with the M P N problem.Scary tho until we realise what it all is and Meds sort us ,then learn to adjust....very hard.!

Best all.Sally

[Wyebird]

Relieved thank you

[grgracey]

Lightheadedness is my enemy I felt so frustrated about it...yeah I think this is the symptoms of having thrombocytosis.I am so sad about it and I wanted to run away but its within me already.

[Wyebird]

If my platelets are over 450 I’m as if I’m wearing a lead suit. Tell your heamo how you feel. What dose aRe you on?

[Cja1956]

I am post ET/MF, but when I first got diagnosed with ET 12 years ago, lightheadedness became a part of my everyday life. There are many days I felt like I was going to pass out. I never knew whether it was the illness or the Hydroxy and other medication I was on. It was usually worse in the morning and then I felt better as the day wore on. This past year the episodes became more frequent and longer-lasting. I finally changed hematologists to an mpn specialist who diagnosed with the early stages of Myelofibrosis.

You may just have to have your meds adjusted but I would definitely get to the bottom of it.

All the best.

Cindy

[Wyebird]

Thank you for your reply if my platelets remain stable I might swap another anagrelide for a hydrox.

I really do wish you well