Essential Thrombocytosis headaches

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Essential Thrombocytosis headaches

by newbyet on Wed Jan 01, 2014 07:03 PM

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My husband has been newly diagnosed with primary Essential Thrombocytosis. His platelet count is around 600,000. He has almost daily headaches, some days worse than others. Makes him feel sluggish, foggy thinking etc. We are wondering if this is common with ET or should we consider it as possible mini clots? The doctors seem to think because he had an MRA that its not a clot to the brain but I read somewhere online that the Mri's can miss the micro clots. Does having the chronic headaches mean he is high risk? He started on aspirin and it has eased some of the head pain but not all. He says it feels like the blood is like sludge when he rises up in the morning. Would appreciate some insight into this, thanks!

RE: Essential Thrombocytosis headaches

by nenabugbaker on Fri Jan 03, 2014 05:23 PM

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I have been trying to find other people that have ET.  I have had it since 2007, and I am now 69 yrs. old.  It is a very rare blood disorder; myeloprolific blood disorder.  I have spent hours researching it.  My platelet count gets over 1 million if I don't take Hydroxyurea.  I have had a spinal marrow when first diagnosed and recently a hip bone marrow. I have migraine headaches, so not sure about the headaches, but I do battle them. I take a coated baby aspirin in the am and in the pm. I am investigating taking something natural from an alternative doctor as the Hydroxyurea messes my whole blood work up, and I think it is wrecking my body!  I had osteopenia and it hasturned to osteoporosis.  I also have Celiac Disease, so feel like I am a mess.  I don't take any drugs except the Hydroxy.  I am a believer in natural remedies, and eat organic as well.Be sure to exercise regularly.  I have to force myself to exercise even if I don't feel like it.  It will help with the sluggishness. I changed oncologists as well.  Second opinions are helpful.  I only know one other person that has ET and she had a blood clot.  My oncologist tries to keep my platelet count down to 400. 

RE: Essential Thrombocytosis headaches

by ayanhar on Sat Jan 04, 2014 02:51 AM

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Hi,

me too, I have ET, 34 now, survived a heart attack and was diagnosed to have acquired JAK2 mutation. Platelet counts  were at 620000 but it came down after i started to take hydroxyurea. I too have intermittent headaches but i think thats when i get stressed out with too many issues at the office. My hematologist advised me that counts less than 600K are considered like normal and may not require medication. I am advised to take a low dose of aspirin/clopilet as well to reduce the risk of forming blood clots. As I understand, Properly controlled ET carries less risk than all other MPDs. I lead an absolutely normal life just like people around me. 

RE: Essential Thrombocytosis headaches

by nenabugbaker on Sat Jan 04, 2014 01:27 PM

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I am still searching for answers to ET and what the Hydroxy is doing to my body and the rest of my blood cells. I am older, so have more issues. I too lead a normal, active life, but have had to give up my horses due to the osteoporosis that has set in.  I also bruise easily and so bad that the bruise leaves a permanent dark spot. I can't find any info from anyone about another treatment. I did find Indirubin use for some cases of ET. One oncologist says the headaches are due to too many platelets in the bone marrow and crowding together. I get some dizziness also. If anyone knows of an alternative medical doctor or alternative meds for ET, I would like to investigate it.

RE: Essential Thrombocytosis headaches

by ayanhar on Sun Jan 05, 2014 07:06 AM

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Anagrelide is the secondline medicine for this disease if hydroxyurea cannot be used. If I understand right, Anagrelide works only on lowering your platelet counts whereas Hydroxyurea brings down other counts as well (like HB, RBC etc). Normally this is prescribed to patients who develop resistance to hydroxyurea or when side effects of hydroxyurea makes it difficult to continue with heavy doses

Always remember that your clinician would be the right person to recommend the right medicine for you, i am just trying to share what I am informed about this. 

http://en.wikipedia.org/wiki/Anagrelide

RE: Essential Thrombocytosis headaches

by nenabugbaker on Sun Jan 05, 2014 04:25 PM

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I will see the oncologist in April.  It is a good thought to try the Anagrelide. The doctors tell me that Hydroxyurea has been used for years and years, but I do feel that it is destroying my cells. I have Celiac disease, and my ostopenia has turned to osteoporiasis, so now I am scheduled to see an endocrinologist. My opinion is that I am not absorbing my nutrients, or something is destroying my bone. I was on Fosamax and then Reclast injectinons, then I got the osteocronosis in the jaw! I did not get my last injection in October of Reclast and I will refuse any other "wonderful bone prevention drugs"! I discovered COLOSTRUM SUPPLEMENTS from Sovereign Labs, have been taking for 2 months, and my whole body is responding extremely well. I hate to get my hopes up, but so far, it is the only thing that has helped Celiac, leaky gut syndrome and allergies. I listened to Dr. Andrew Keech about colostrum. Autoimmune diseases are tough to work with. I am a very active 69 year old and eat and grow organic, and they say I look 10-15 years younger than my age group.  Don't know what else I can do.

RE: Essential Thrombocytosis headaches

by Summershaw on Thu Jan 09, 2014 06:53 PM

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I also have daily headaches . I'm told they are caused by micro clots also. Taking asprin will help as slugglish blood moves slowly.Any type of exercise, also help move the blood along.Sandra

RE: Essential Thrombocytosis headaches

by nenabugbaker on Thu Jan 09, 2014 09:02 PM

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I have been dealing with this since 2007. I take a coated baby aspirin in the am and one in the pm. I keep my weight down, exercise, eat organic. One oncologist said that it was because the platelets get clogged up in the bone marrow. I have started taking Kombuchu drinks that have different flavors; ginger, hibiscus, lavender, etc. I take daily probiotics that contain colostrum that I get fromwww.sovereignlaboratories.com   I have also read that if you are low on magnesium that you will get migraines.  I also read everything I can from Natural News on the internet.  I would look into some organic supplements for headaches. Can't give you any other advice.

RE: Essential Thrombocytosis headaches

by JenniP on Wed Mar 05, 2014 12:33 AM

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Hi newbyet, I've recently been diagnosed with ET.  My platlet count is around 570,000 and I have severe neurological headaches.  Don't laugh but a bag of frozen peas wrapped in a towel helps relieve the pain.  Heat doesn't work.  In fact, I think heat causes the headaches to last longer.  Have your husband use a cold pack on his head to see if it relieves the pain.

My hemotolgist has recommended that I begin interferon but I'm not sure I want to go this route.  Medicine for life makes me uncomfortable and I want to check on other alternatives before committing to medication.  I'm new at understanding this too.  I'll share information as I learn more about the disease, it's symptoms and treatments.

RE: Essential Thrombocytosis headaches

by briangreenberg8 on Fri Oct 31, 2014 01:55 PM

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Hi, I am glad you posted your experience and it is interesting to read what everyone has said.  I am 56 and have had ET for about 3 years.  My counts rose gradually from normal about 6 years ago.  I was at around 400,000 when diagnosed via bone marrow and they found the JAK2 mutation.  In the past three years, they rose to about 925,000.  That is when I started hydroxyurea.  Until that time I took baby/low dose aspirin.   My symptoms were also frequent headaches, and for a time the circulation in my legs/feet was poor, causing cramping.  But the baby aspiriin helped that.   Headaches were manageable for a time with baby aspirin, and now after 3 months of hydroxyurea, the headaches are much less frequent, though they were only weekly or so without treatment.   ET is totally manageable (at least so far) and my doctor says that life expectancy is hardly any different than someone without the disease.   In fact, due to my awareness of this condition, and my more focused approach to diet, exercise and health, I may last longer WITH this condition that I would have had without it! 

Also, I read on another forum that someone with ET recommended a good cup of coffee to help with the headaches.  My wife, a former RN confirmed that coffee might help.  I find that it does.   I find it helps to keep well-hydrated as well.

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