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DiscussionDoes anyone have HHT? Hereditary Hemorrhagic Telangiectasia
Blood Cancers & Disorders | Last Active: 2 days ago | Replies (11)Comment receiving replies
Replies to "Hi @pendutchgal, welcome. I'm bringing in fellow HHT-ers like @heathshan @olivine @amartin945 to share their experiences..."
Lately, I go no where without a kit to stop nosebleeds, but lately have to
medicate and pack nostrils 2 or 3 times to get them stopped.
I had been going to physical therapy and all of a sudden I couldn't keep
with the stretches and strength exercises. Shortness of breath, dizziness,
muscle spasms, nosebleeds and exhaustion. All symptoms of blood loss. At
least I know now.
I use Afrin nasal spray or its equivalent to stop nosebleeds. A saturated
cotton ball inserted in nostril or nostrils.
I have been struggling with anemia. Tried numerous Supplements with little
help. Then did 3 bouts of iron infusions about 6months apart. I was
referred for endoscopy and found bleeds. They used epinephrine and staples
on what they could. I imagine others present more like what I can see on my
skin....fine spidery like clusters.
Doctors are suggesting subcutaneous treatment with octreotide.
Has anyone else experienced this?
It's all new to me, well the management. Nosebleeds were so common in my
family and for me since a small child.