Heart Failure Support Group
Heart failure is a condition that can result from any structural or functional cardiac disorder that impairs the ability of the heart to fill with or pump a sufficient amount of blood throughout the body. It is often undiagnosed due to a lack of a universally agreed definition and difficulties in diagnosis, particularly when the condition is considered "mild."
Hello everyone! Just finished another week at Mayo where I am told my high ICP (fluid around the brain) because my LP shunt has failed is causing my heart failure grade 2 and I have POTS dysautonomia to boot! I am told the grade 2 diastolic failure is here to stay but they can keep it from getting worse by fixing the ICP?
Now...I am facing brain surgery. Tough part is the treatment for POTS is increase caffeine, fluids, and salt which I can NOT do because of the heart failure. I am in a pickle here. I cannot hardly stand up because of nausea, dizziness, and shortness of breath. Thanks for listening and hugs for all!!!
Anyone else have heart failure here because of high fluid pressure around the brain?
Now...I am facing brain surgery. Tough part is the treatment for POTS is increase caffeine, fluids, and salt which I can NOT do because of the heart failure. I am in a pickle here. I cannot hardly stand up because of nausea, dizziness, and shortness of breath. Thanks for listening and hugs for all!!!
Anyone else have heart failure here because of high fluid pressure around the brain?
I don't really know anything except by experience and what I read. Most of what I read, I like to read from the Mayo Clinic website because I trust that it is up-to-date with the highest traditional medical knowledge at this time. Another source of information is the research studies by nih.
I don't have CHF myself, but joined this group because my husband does. His full diagnosis is: idiopathic dilated cardiomyopathy. Even though they say idiopathic, it really seems like there is at least a connection to heredity since his younger brother and his father both have it. It might also be connected with hypothyroidism since he was diagnosed with it along the path to his CHF diagnosis, and his father was diagnosed with it long before his CHF diagnosis.
Apparently my husband has something like POTS caused by the HF--if I understand correctly--at least he sometimes has trouble standing up without getting too faint. It is managed by his doctors at the heart failure clinic by carefully balancing his medication. His Father is even worse in getting faint on standing.
I don't know what my husband has, in terms of diastolic or atrial failure, or anything about the stages. All I hear about is the EF result from the Echo.
Do you know what caused the ICP, or the POTS? Did you get all the diagnoses at the same time?
Have you had your thyroid checked? Being hypothyroid can cause water retention and being hyperthyroid can cause the heart to race. One of the reports of a health study that I read said that even when the hypothyroidism was unclear, treatment with Levothyroxine was shown to improve the patient's Echocardiogram results.
The thing in your post that seems to raise questions with me the most is that the treatment for POTS should be to increase caffeine. Is the Mayo clinic also managing your POTS?
Best wishes to you. I am sorry your combination of conditions is shared by so few people that no one else has had anything to add.