ET - Essential Thrombocythemia & Fainting

Posted by shenriq @shenriq, Wed, Apr 3 12:26am

What causes fainting, for those of us who have ET? I am concerned and am looking for clarification, in order to better understand what’s behind it and if there are triggers. Also, I have suffered from several incidents of vasovagal syncope, which causes fainting. I don’t understand how to differentiate the differences between ET fainting and vasovagal syncope – and desperately need to know. I would appreciate any information you can share to help me cope with this.

Hello @shenriq, according to Mayo Clinic, dizziness and lightheadedness can occur from essential thrombocythemia, but could be the result of a blood clot that can develop from ET:

"You may not have any noticeable symptoms of essential thrombocythemia. The first indication you have the disorder may be the development of a blood clot (thrombus). Clots can develop anywhere in your body, but with essential thrombocythemia they occur most often in your brain, hands and feet.

Signs and symptoms depend on where the clot forms. They include:

– Headache
– Dizziness or lightheadedness
– Chest pain
– Fainting
– Temporary vision changes
– Numbness or tingling of the hands and feet
– Redness, throbbing and burning pain in the hands and feet (erythromelalgia)"

@shenriq, have you had any of the other symptoms listed above? It may be best to contact your provider and inform them of your side-effects, even if you have had other causes for your fainting in the past.

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Mostly asymptotic from ET and with Internist now. I’m under care of Oncologist-Hemotoligist and have regular bloodwork and follow ups. I would like to ask you to weigh in on vasovagal syncope and potential triggers for fainting, as originally adkedand how ETfainting might compare. I am one of those asymptotic patients, so with little known about ET, especially since I have no gene mutations, knowledge is power. All help welcome.
Thank you for your counsel.

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Hi there, I also have ET & JAK2 but with no symptoms other than high platelets. Controlled with Hydrea and 81mg aspirin. It is possible your fainting is related to other issues too. I would certainly agree with others to talk to your doctors so you can do more investigating. Best wishes!

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I have not had issues with fainting. Lightheaded at times but typically that is when my blood pressure is low.

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@shenriq

Mostly asymptotic from ET and with Internist now. I’m under care of Oncologist-Hemotoligist and have regular bloodwork and follow ups. I would like to ask you to weigh in on vasovagal syncope and potential triggers for fainting, as originally adkedand how ETfainting might compare. I am one of those asymptotic patients, so with little known about ET, especially since I have no gene mutations, knowledge is power. All help welcome.
Thank you for your counsel.

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@shenriq, I think you may find the following discussion worth your time to check out and participate in, https://connect.mayoclinic.org/discussion/syncope-low-b12-chronic-fatigue/. A few members in that discussion have talked about dealing with syncope and may be able to relate to what you are experiencing.

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Thanks to you all for sharing.
As you know, I’m looking at ET and vasovagal syncope, as I have both. I’ve had every work up under the sun and on the advice of my Internist,!with whom I met yesterday, I’m now scheduled for a bilateral carotid sonogram on the 16th, to help further understand what’s behind this fainting, whether it’s ET or vasovagal syncope. Dependent on the outcomes, I will next confer with a neurologist. All of this is upsetting, disarming and I’m working not to make myself crazy.

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@JustinMcClanahan

@shenriq, I think you may find the following discussion worth your time to check out and participate in, https://connect.mayoclinic.org/discussion/syncope-low-b12-chronic-fatigue/. A few members in that discussion have talked about dealing with syncope and may be able to relate to what you are experiencing.

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Thank you for following up on and my concerns an “hearing” my concerns and need for information.
I will dive into the link you shared.
Much appreciated

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Hello @shenriq, it has been awhile since you discussed your fainting. How are things going and how are you doing halfway in to the summer?

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