I have ET and I am not on any medications yet. I do take an aspirin daily. On Sunday morning we were visiting with family and drinking a lot of coffee. I had a strange episode where my head felt pressure and I felt off balance. I had to go lay down.
I went to work on Monday morning and I was sipping coffee all morning. The same thing happened except much worse. I had to put my head down and I couldn’t get up. At all. My jaw got stiff and my arms were tingling. They ended up calling paramedics and I ended up in ER. After running tests and a CT scan they found nothing. They said all looks good except my platelets were elevated. On Tuesday I had to stay home from work. I was drinking coffee when my mom came for a visit. After she left it all happened again. I literally couldn’t get up from the couch. It lasted about 2 hours. I am seeing the hematologist this morning. I will most likely start taking the Hydroxyurea that he is recommending. I really was hoping for more options, but this is what he wants me to start on. My platelets were at 1017 last Dr. Visit in August. While at the ER the platelets were shown to be 889.
Has anyone had these episodes from caffeine? Has anyone had an episode like this? It was pretty scary.
Thanks for any input. 🙂
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I have had tachycardia episodes if I drink too much caffeine, but that does not sound like what you are describing. What you are describing is consistent with a MPN-related microvascular symptom; however, there is no way for any of us to know whether this is what the issue actually is. There are a number of things that can cause what you describe. You certainly need to determine what is going on.
Given the platelet levels you describe and the symptoms you are experiencing, cytoreduction is certainly worth considering. You may also wish to discuss taking the aspirin 2 times per day, which is now recommended for some people with symptomatic ET.
Regarding cytoreduction, there are two first-line treatment options, hydroxyurea and Pegasys. Both are viable options. Each has its own risk-benefit profile. We each respond differently to each of these options. It is up to you to determine what choice is in your best interests. This requires that you be clear about your treatment goals, risk tolerance, and preferences. Here is some information on treating ET.
The choice about how to treat the ET is ultimately up to you to decide. Your doctor can advise-consult-educate you, but only you can decide. Suggest you review the pros and cons of the two first-line choices with your doctor. If the doc feels HU is preferable, have him explain why. Be sure to thoroughly review ALL of your choices. This could include clinical trials if you wish to pursue this (Besremi, Bomedemstat, etc.).
Hopefully you are already consulting with a MPN Specialist rather than a regular hematologist. Just in case, here are two lists.
Please do let us know what you decide and how you get on.
Hi Ssssfamily! I, too, drank a lot of caffeinated beverages. I’ve never experienced symptoms that you describe. I was diagnosed with ET about 14 months ago. I was put on HU 1000mg./day to start. Blood count became too low. dose was halved to 500 mg. Platelets stable at 500. Because I’m older, my hematologist/oncologist felt HU the most reliable treatment choice with least side effects. To date, I do get tired from the HU but switching it to bedtime alleviated that issue. I also have had some skin issues but nothing drastic. Honestly, I don’t suffer any untoward symptoms from HU. But I dislike the idea of it and do wish there were other less toxic treatments. I also wish I had more to share with you. I wish you the very best of luck.
Hunter, I read your posts. They’re so helpful. If you find this post can you tell me if you are a physician?
After seeing the Hemotologist/Oncologist yesterday and after describing all the symptoms they are sending me to a Neurologist. I am so sad this is happening. I want to go back to work and I’m not sure I can even drive. Constant pressure in my head that throws me off balance. I got the prescription for HU but I’m not going to start them until I talk to the neurologist.
I drink only mild coffee in low amounts. But the head pressure you describe is a regular symptom of my ET/PV. It's a sensation that I believe is particular to MPN and is hard to explain to anyone who's not had it. it usually comes with malaise which is my worst symptom. I can also get the same balance sensation. I also was ready to go to ER not long before my Dx, but held off.
You should feel better once you get the PLT down; I was also just over 1000. But for me it was not a complete fix.
I have been taking hydroxy for almost 2 years now and the biggest problems I have encountered so far or extreme fatigue and gastric problems. Sometime back I started with the 10 billion probiotics count and I’ve had a lot of improvement with probiotics but no luck with fatigue. Based on the blood count records I’ve probably had ET since 2018 but it was just figure it out in 2021. Good luck with your MP in Journey.
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