I have ET. Since last summer, I have had 5 attacks of sudden high blood pressure on separate occasions including terrible headache that suddenly disappears as soon as the pressure goes down. My normal pressure is 110/70. I was up to 175/105! The fifth time was 10 days ago when I was in a town in the Austrian mountains. I went to a doctor (she was English!) she said something to me I hadn’t heard before, that many people get this sudden blood pressure rise, when the barometer is low or when they come to the mountains. She’d seen this over and over again with tourists to the mountains. She said the condition is not well studied.
Thinking back, the first attack was on the plane from Austria to Korea. Sudden relief as descent started. The other times were also on trips to the Austrian mountains, driving on the mountains in Greece and on a super hot day in Vienna when the barometer was very low.
She said blood gets thicker, when the barometer is low
Has anyone experienced this? It’s frightening. I now have a small blood pressure machine in my purse and some BP pills, just in case.
Anag
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Anag
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There are substantive studies which report increases in blood pressure when the atmospheric pressure changes quickly - up and down. The phenomenon is not well understood but it seems to be that peripheral blood vessels constrict increasing blood pressure. The phenomenon seems to be greater in older people and those who already have high blood
The constriction of blood vessels will likely increase the risk of blood clots especially for anyone with elevated platelets.
Not much one can do about the weather or take off/ landing in planes but being aware of the phenomenon is helpful. Given your recent experiences a discussion with your doctors would be in order.
Thanks! That helps and also supports my doctor’s assumption. We can’t change the circumstances, but we I can do something to help my body deal with the situation. This is a start to reducing my fear of my sudden high blood pressure, as well. Cheers.
Given that blood type can have such a big effect on blood clotting I wonder how many MPNrs with elevated platelets are aware of this additional risk factor.
I'm not aware of any guidelines that suggest different ranges for platelet counts based on blood type.
It is an interesting observation, blood types and their affectations over a range of issues for MPN patients.
I doubt seriously that too many might have made a connection between MPN patients & blood types at this stage.
My rationale for this speculation is quite simply the general lack of MPN knowledge that is evident within my own levels of experience demonstrated from a range of doctors, as well as the general level of knowledge of MPN patients themselves etc...
However, based upon these findings and here on MPN Voice (& our MPN fraternity), there appears to be little doubt that some type of correlation is extant for blood types of MPN patients...
In a way I can understand that not all haematologists are up to speed with the details of MPNs. I suspect that many are using generic guidelines to diagnose and treat their patients. I am sure that is why so many people find that the doctor says that their MPN can't be the cause of one symptom or another. Basically they are saying it doesn't mention it in their source of reference.
I am more concerned that guidelines developed by MPN experts make no reference to blood type and the risk of blood clots. Looking at some of the research, the role of blood type in clotting risk been known for years. If a persons age is a criterion for classifying MPNrs risk of thrombosis it is remarkable that blood type has been overlooked.
Yes, and I could not agree more... However, I believe that basic human nature of reflexive behaviour might be undervalued or overlooked here in this instance. In my view, I do not believe that all that many doctors stay with the "finger on the pulse..." please pardon my cliche... when it comes to keeping up to speed with reading medical journals etc.
For example, here in Australia GPs are trained to write prescriptions and are often also rewarded for doing so in a myriad of ways... Hence, after some time of being "trained seals" it might be hard to expect much more of their talents and abilities etc... Just a thought...
Great discussion. I agree with you both. In Austria and Germany, doctor get % from Pharma for writing prescriptions. Most doctors I’ve known till now (I’ve lived in 5 countries and have worked in 20-was engaged to one for over 6 years) look at your symptoms, write a presc. and send you off. The drugs are really pushed. I also have the feeling that from the 5 MPN specialists I’ve had, only two really know details. my 5th, who I have now, is always learning. She also accepts and wants to know everything I’m doing “alternatively”. Most doctors here in Austria throw you out as soon as you mention anything alternative, or just laugh in your face and say that they practice serious medicine and they don’t want to hear about it. Basically, if they discuss and prescribe alternative, they’ll get squeezed out of their jobs, unless they are private doctors.
I have had 5 TIAs but have blood type O. I should be lower risk according to this study. Of course I’m just one person and the study looked at 1000s, therefore it’s clear and to be trusted. My next appt is Wednesday. I’m handing over the study to my doctor. I’m curious about what she has to say.
Most people here in Austria are blood type A. They are the “farmers” according to the blood diet. I’m greek and most are O. They are the “hunters”. This diet has fallen into disrepute, but for me, it does make sense. I also feel better eating the foods on the O list. My Austrian husband does have an easier time digesting the A list.
Nevertheless, blood type has been mentioned over and over again in medicine. Unfortunately, few take this seriously and it seems that there’s no investment in this direction, just as there’s little investment in the illness manifestation and treatment differences between men, women and children. Children are treated as little adults. Can be very dangerous.
I also have ET and have found when I am in a stage where I am throwing platelet showers and having clotting issues that my BP increases in spikes . I am also occasionally affected by the low pressure experienced on high altitude plane trips with dizzyness and feeling faint. I have BP medication that keeps my BP generally in the normal range as ET as I have aged has increased my basal BP (probably with other genetic factors). Temperature will also play a part in dilating and constricitng blood vessels so I make sure I am always dressed to stay cool on a plane, have my air flow up high and drink plenty of water before I get on. I have found this works well to keep me feeling normal. Hope you can find something that works for you but I have found that as soon as I understood what was happening I felt more comfortable about it all. My BP has spiked to over 200 on 120 odd. It is really long term high BP that is a bigger issue health wise so try not to panic too mush about an odd spike. It has also recently been accepted that BP is much more labile (changeable) than medicos previously thought so they don't seem as worried about the odd high reading. Good luck with your ET ride. I have had ET since I was a teenager and am now 50. I have had long patches of my life (20+ years) with it being something that I lived with and hardly noticed.
Wow 200! My normal is 100 or 105/70. 20 years ago, my resting rate was 90/55! Every doctor wanted to raise my pressure with pills and I refused, because I felt great. My parents, husband and his parents are all the same.
When I get to 127/80, I’m already feeling weird. My highest was 175/105. I thought I was going to die. I couldn’t stand, my speaking was slurred. Scary. I can’t imagine what 200 is like. The ER doctor told me he’s had patients with over 240!!!
I generally feel quite well and happy despite occasional setbacks, which can be evaded. We are always smarter afterwards and notice that we overdid it or forgot to take meds, etc.
I find it incredible that your ER started with 15!?! I’ve heard of some who started at 12. Wow. Mine started at ca. 44/45, diagnosis at 52.
Thanks for writing and info on air pressure. I’ll follow that. It makes sense to keep body cool. Cheers. Anag
I have found your comments and the replies most interesting. Had ET for 7 years and my main concern is headaches. These occur only at night, sometimes lingering into the morning. I have little faith in tablets and have been trying to pinpoint the cause. Blood pressure is ok but I have long since thought that air pressure may have been a factor, low pressure in particular. Interestingly my blood group is A positive but until now reading these comments would never have made a connection. Do wish more was known about our conditions. Sue
I am glad you wrote about the blood pressure issue as I have initially had blood pressure spikes just a few times when initially diagnosed with PV. For what ever reason I seem to be getting them more in the last few weeks. I get dizzy with them most of the time. Two times I have actually been in the primary care doctor's office when it happened. I didn't know what caused it but at least now I have some indication! It freaks me out cause I feel like I am going to pass out at times. Thanks for posting this.
Yes. I feel like passing out, too. In the summer it was so bad, that I ended up in the ER. yesterday, my hemo said that it was probably due to the change in pressure, along with not drinking enough and possibly other factors, like stress. She also said that if we do blood tests 3x a day, it is expected that the platelets can vary up to 10%. Just like with the pressure, the body is constantly working and adapting. With my platelets, it varies even more. I’m a real jumper. Since last summer, I jump around from 620 to 909, despite the meds. Nevertheless, she did not increase my dosage, since I feel well and my blood has a good viscosity.
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