Massive headache/neck-ache during flight.

[Anag]

I have ET CALR. Flying from Austria to Korea yesterday, I had a massive headache starting after 4 hours. It was on the right side of my neck and up the back of my head. No amount of meditation, massage or stretching made a difference. I was in tears and scared. I took a 50mg aspirin then another one and finally it was bearable. I was afraid of a nose bleed if I’d take too much. As we began our descent, the pain started to subside. The nose bleed came when the luggage arrived. Has anyone experience this? I do have a neck problem, but this was not really my neck. There was also throbbing in the back of my head.

[Mazcd Partner MPNVoice]

HI Anag, how awful for you, I hope you are feeling better today. Best wishes, Maz

[Anag in reply to Mazcd]

Thank you Maz. I’m much better. The second flight (only 1hour) was normal. Have slept really well here!!! I’m afraid of the trip back on Monday, though. My 15 year old daughter is a bit traumatized since, adding to old traumas (from TIAs) etc. It’s crazy for our families and I’m one of the lighter cases in the group! Cheers.

[Happysnapper]

Hello Anag. I have only just been diagnosed with ET CALR, like you. I am new to this forum and this is actually my first post. I only found out about it following two episodes exactly as you describe (although I was not on a flight) and a routine FBC showed I had platelet count of 1400+. I do not know if it is connected to ET, but it was very scary and not something I would wish to repeat, I feel for you. Thankfully I have not suffered anything like it since, although I felt very near to it a few days after the second episode, but I somehow managed to centre and calm myself which seemed to help greatly. I am unsure what to expect from this diagnosis, but from what I am reading in many of these posts stress can be a significant contributor. I wish you all the best and hope you don’t have any further episodes.

[Anag in reply to Happysnapper]

Wow, Happysnapper! 1400 right off the bat sounds freaky. I had 823 and was walking sideways, numb face and discoordination. I tried all possible regarding the pain in the plane: meditation, tapping, breathing. Nothing got the pain down. I believe it had to do with the air pressure. Even my ankles had swollen despite the compression stockings! It’s a puzzle. Glad the aspirin helped. I just was afraid of getting my blood too thin.

All the best and welcome to our group! Anag

[socrates_8]

Hey Anag...

Yes, I can relate...

Many years ago I was required to fly all over Australia's east coast for work in small aircraft. On one journey when flying into Cairns, we just rose over the mountain and were about to descend, when the tower advised us to immediately climb to avoid a collision with an incoming passenger jet.

We complied, and my headaches were excruciating and it felt like a small explosion inside my head...

Later, during a medical it was suggested that I have my sinus passages cleared/removed. I did, and I never suffered from the problem ever again... Touch wood...

I really feel for you Anag, as I can recall quite vividly just how uncomfortable that experience was for me...

Suggest you might look into the procedure if this continues to be an issue. The procedure will most likely be successful but bandages removal is not fun either... So conduct some really clear research from your medical advisors prior to making any decision.

Best wishes

Steven

(Sydney)

[Anag in reply to socrates_8]

Hi Socrates!

I sincerely get you here. I had that type of explosion in my head, when I was flying with a sinus flair up. Horrid. My right ear blocked and took a month thereafter to get back to normal. This time my sinuses were completely free. I used to be an opera singer and know my way around with my breathing apparatus. Luckily, all is open. I must say, since I changed to the AutoImmune Paleo directly after my diagnosis, decades of problematic sinuses, and ENT problems along with a host of other malaise, for which I was getting treatment for years in end, disappeared. Haha! I know you are a great believer in diet as am I. I am much better now. I am worried about the flight back, though. I think it’s the pressure. Have to make sure my blood is thin enough, but not too thin. My doc asked me to take a anti-thrombotic shot while I’m in the plane. I didn’t do it coming over, but will do it going back. Cheers and thank for your valuable input. Anag

[socrates_8 in reply to Anag]

I used to take a sinus pill called Sudafed, which helped to keep the sinus open during flights. Remember, no stimulants either: no alcohol, no caffeine etc...

Best wishes

Steve

[Anag in reply to socrates_8]

👍 alcohol and caffeine are real no-no’s on flights. I haven’t had to use nasal spray for over a year! I think the bone broth that I make (simmering for 24 hours) has something to do with it. Even my skin is oily again at 54! 😁 have a nice Day.

[Bluetop]

Anag, how frightening for you. I too had a massive headache on a recent flight. It was behind my eyes as well. When I spoke to my GP she thought it would have been a sinus issue. I hope you can git some advice/opinion from your doctor.

[Anag in reply to Bluetop]

Yes. The back of my right eye was involved. I will take a blood thinner shot on the flight back as my doctor suggested. I know the difference between sinus pain in flight ms and what I experienced. They were definitely different. Right now I am doing very well. Thanks for writing! Anag