This is a new situation for me, and has happened during my last 3 flights. The headache is so intense I cannot open eyes and feel I may pass out. My haematologist feels that it is unrelated, but I have never suffered with this before and have done many flights and long haul flights. The pain is in my frontal lobe area and can only be described as squeezing pressure. It reduces as the plane descends. I am also suffering with bad joint pains and a frozen shoulder, all new complaints. I take 1g hydroxyl per day and my platelets have dropped to the 300s from 1300. I just feel terrible approaching the dr as I feel like a hypochondriac but the ages and pains I feel are real. I have always been fit and fairly healthy although I suffer with the auto immune complaint alopecia.i am 50 years old. I am a positive person so find it difficult to discuss my problems with family as I feel as though I am whining. I am usually their problem solver. Does anyone else suffer similar headaches that are related to ET ? Thanks for your help and support. Penny
Does anyone suffer intense pressure headaches wh... - MPN Voice
Does anyone suffer intense pressure headaches when flying?
Maybe your platelets have been kept artificially too low with medication. I am ETJAK2+ 63 years old. My platelets were over 1000, then I started taking 2x500mg HU plus aspirin per day. That brought the platelets down but I felt like I had a huge weight on my shoulders, so now it is agreed with my Haemo Dept that I will keep my platelets hovering between 600-700 which suits me fine presently. It could all change, of course. There is a reason why your body puts out these platelets which is not yet understood by science, maybe your platelet count needs to be more than 300.
You noted that you are JAK2+ - which has a lot to do with why you experience thrombocytosis. The JAK2 mutation causes the JAK-STAT signaling pathway to over- activate, increasing hematopoiesis. It can also increase production of inflammatory cytokines. There is excellent research out there now on how this works. If you do not already know, it is worth finding out what your JAK2 mutant allele burden is. The percentage of mutant alleles in the JAK2 gene is predictive of the course of the MPN. The test is called a JAK2 Mutation Quantitative Analysis (or similar).
All the best.
I don't understand all this talk of mutant allele burdens and such likes. I was asked to partake in a study of treating ET with Tamoxifen but in the end I was not eligible because I did not have enough of the JAK2+ mutation in my blood. So this says that my "burden" can't be very big.
The mutant allele burden is the percentage of mutant alleles that make up your JAK2 gene. The higher the percentage, the worse your symptoms are likely to be. This is an acquired mutatuon. Most people are not born with this. Something causes the mutation of this part of upir chromosome and that in turn causes the MPN to develop. There is a set of different types of cytokines that regulate many body functions. When there are mutations in any of these systems, it can cause health issues including cancers, tumors, MPNs, and other health problems.
I hope that helps.
Thanks for your reply. I have the CALR mutation, rather than JAK 2 . I am unconvinced it is my Eustachian tubes as it has not happened in the past. I do believe it is related to pressure though. I have only had this diagnosis for a year so will continue to monitor things, pain and fatigue and see where we go. Hopefully lots more flights, as travel is my bucket list. Penny
Lots of flights for me too in my job. Hope you get this sorted out ASAP. I would doubt the HU is the cause, though it has many other sorts of toxicities and adverse effects. Since you have likely had the CALR mutation for a while before you started having this issue on flights, it may not be the issue. It is really hard sometimes to figure out what is MPN-related and what is not.
All the best. Hope you have problem free flying.
Thanks for your reply,. That is an interesting concept. I will definitely be monitoring it.Penny
Are your Eustachian tubes clearing the pressure differential when the air pressure changes during the flight? What you describe sounds a lot like what people with a sever cold/blocked tubes experience when flying. I find that if I chew gum while taking off/landing that it really helps be balance the pressure. The doc may well be right about this being unrelated to the MPN. Sometimes we have unrelated issues. Hard to figure out what is or isn't related sometimes.
Hi Penny,
I hear you loud and clear! I had an over night 10ht flight to Korea in the summer. About 6 hours into the flight the pressure head pain started. Right side back to front, mostly front. I took a baby aspirin, did massage, everything possible. It got worse and worse. The stewardesses made me a makeshift bed on the floor and there were tears running from the pain. I was scared. Then I just said, God will take care of me no matter what. That took the fear away, but not the pain. About an hour before landing, something changed fast, lower altitude? Cabine pressure change? The pain was better, then gone. Then I felt almost normal when the descent started. The flight back was absolutely fine. I’m flying to Greece tomorrow. Just 2 hours. If that happens again, I’ll let you know.
Regarding being the problem solver and feeling like a complainer or hypercondriac, I got over that. If someone’s smirking or not taking me seriously, I go on attack mode. I stare at them and repeat my symptoms slowly, over and over. I usually find they have no idea what’s going on. We are not crazy. We are ill and often have to advocate for ourselves.
3 weeks ago I was in the hospital with terribly high blood pressure (unheard of. I’m always 100/60). The nurse put in an IV that was really painful. I told her to take it out and a typical Austrian answer came. “Bear it.” I said this isn’t normal. Her face said, „Oh, you’re one of the thin skinned winers“. She obviously spoke about me to the doctor. He came in, didn’t introduce himself, sat at the computer and asked questions, then dragged himself around, sighing heavily. He neglected my questions. Finally I said, „I don’t like being here at 11:30pm either and I appreciate you not treating me like a burden. If I had a choice, I wouldn’t be here. “ He said he didn’t say anything. I answered that his body and face language spoke volumes. I know doctors well. I was with one for 6 years.” He immediately changed his demeanour. As they gave me meds in my IV, they were burning like crazy. I asked for another IV and he changed it absolutely beautifully and all was then well. The arm with the initial IV was hurting for 10 days afterwards.
Point is, directly and honestly is often best. Stand up for your rights. Educate yourself about your condition and know your body well. Then you feel stronger. Your family should be there for you, just as you are there for them. But, don’t forget that they are also suffering and afraid when we have such an illness and they try to cope with that each in their own way. 🙂
All the best, hope to have helped. Anag
Thank you , you have described my experience to a T! I am really not convinced that it is the inability to equalise my ears etc, as I have made countless flights and never had any issues. It could be an imbalance in my platelets now that I have lowered my, that is an interesting concept. I have been closely monitoring my condition, as that is my nature. I have had a host of blood tests for the joint pain and so far nothing has come up, no inflammation, no rheumatoid, no immune factors. I was in believe that as I have alopecia i may have further auto immune complications. I was however severely short on vitamin d which is odd as I spend so much time outdoors and it has been summer. I can only assume it is all linked to the bone marrow/ blood disorder. I will continue to monitor my condition and hopefully find answers that help me lead an active life. Positive point is I am going to a conference in October for those living with blood disorders can’t wait! My loss of hair has not defined me, neither will my ET. Thanks again, it is good to know I am not alone nor going mad. Penny
You sound great. I’m a searcher and go getter too. I had one issue once with flight and ears. It was completely different and I had a bad head cold. On last summers flight I even sprayed my nose thoroughly to make sire all was open. It didn’t help.
I’m also CALR. yes alopecia is AI. I have Hashimoto also AI. I I had a host of AI problems. Almost all went away and also many symptoms after getting on the AIP AutoImmun Paleo diet and supplements, my bone broth and apple sauce, etc. Organic foods, cosmetics and cleaners. My whole life changed with that and that if my daughter, husband and many friends who followed us. We must clean our bodies and decrease our stress.
To reduce inflammation turmeric powder, pepper, drops of oil in hot rice milk does it for my whole family.
I’ll be starting Qi Gong soon. I need to balance my psyche and body and breathing. My adrenal have been shot for many years. That’s the next step to my “healing”.
Regarding vit D it has hormone status and a deficiency is dangerous. the “normal range” means nothing. Optimal levels are 60-80. Anything under that is a deficite. D is responsible for hundreds of functions in the body. I was always at 25, since I met my husband in 2000 and he insisted on sunscreen. I am Greek, but am really white. I used to naturally increase my solar resistance by spending 15” in the sun the first day, 20” the second, 25”,30”, 40”..... until I got so dark I could stay even in the greek sun for 6 hours without burning. I still look really young for my 54 years. If we wear sunscreen, we don’t get vit. D! In Northern Europe or the Northern States or Canada the sun is weak. In order to get enough vit. D we must lay in the full mid-summer sun in a bikini for 15” each day in order to get enough. Also, If we have illnesses, our body has a higher demand for D. One doctor finally put me on 20,000 IUs daily for 5 weeks, my D went up to 72, then he stabilized me on 20,000 once a week and once 60000 in the month. Now I’m stable at 60-65. I feel so much better!
Wishing you a beautiful Sunday. Anag
Safely home. 
Chest pains & hypertension due to Interferon or Hydrea?
Does anybody else feel like your clinicians think you are talking out of your backside when you tell them how ill you feel?
Exercise?
