Feeling funny at times?

[Alex9621]

I have had PV Jak2 two years now. Started feeling fatigued early today which some days not so unusual. A few hours later I started getting hot and then short of breath a bit. I felt really weak and checked blood pressure which read high. A few minutes will pass and I check blood pressure again and it starts slowly going down. I have had a similar episode once before it just last a little while and then its over. Its really weird as I have to lie down and once it passes I back up like nothing has happened. Anyone explain what may be going on?

[fee13]

I'd like to know the answer to this as well. I get the same thing but haven't checked my blood pressure which is usually normal.

[Alex9621 in reply to fee13]

My blood pressure is usually normal as well. I am at a point, I think, when I can tell when it's coming on. I also have a bad taste in my mouth at times. Do you have any other symptoms and have you had it going on for awhile?

[fee13 in reply to Alex9621]

Upon reflection they were not clustered together. I would feel nauseous, break out in sweat and just feel absolutely ghastly but cool air would help. Other times I have been very weak and needed to sit down, even while brushing teeth (co-enzyme q10 has helped) and then just breathless at times drying myself after a bath or under stress. They all last a relatively short time and haematologist is not concerned with any of it.

[Alex9621 in reply to fee13]

Had another one today where I to felt out of breath but like I was chocking , feel real weak/fatigued, and then blood pressure went up and then it was over. I am not stressed when it happens and I drink plenty of water. All I think of when it's over is this is the strangest thing and go figure.

[Mazcd Partner MPNVoice]

you should speak to your GP about this. Maz

[Wyebird]

I can’t offer any advice just sympathy. I do think this is something you should discuss with your haemo or nurse though.

Good luck

[Alex9621 in reply to Wyebird]

Thank you

[Osteomyelio]

I have similar episode. Don’t know why

[Alex9621 in reply to Osteomyelio]

Have you spoke to your doctor? If so, what did they say?

[Osteomyelio in reply to Alex9621]

Sorry to say, but I don’t get a lot of help when I ask questions.

[Alex9621 in reply to Osteomyelio]

I totally understand but sorry to hear you go through that as I know it can be frustrating!

[lizzziep]

I sometimes get similar symptoms, told my gp - he wasn't interested!

[Alex9621]

Sorry to hear you have the same symptoms and doctor not helping as I have a similar situation. I get to the point I don't want to even bother going anywhere but better to deal with it as it comes and then hope for the best.

[fee13]

Are you under a haematologist? Contact them if you can. Otherwise It is best to get it checked out at A&E, they might be able to run a few tests. Stress that you're not leaving till you get an answer. Stress the point that your condition causes clots even when the body is not under stress, as this may be what's happening.

[Alex9621]

I am under a new hematologist but to be honest I don't think it would do any good to say anything. When I went to her she didn't even look at my prior records or numbers from the last 2 years. What is A&E?

[CarolineDavies]

A&E in England stands for the Accident & Emergency department in hospital. Same as ER is the Emergency Room in the USA...🚑

[Alex9621]

Yes it is. I was in the ER several weeks ago and they did a CT scan then and everything was clear. Thank you.