On October 8, 2020, I went to the ER for a severe headache that started 2 days prior. CT angiogram of my head showed an AVM located in the midline cerebrum, involving bilateral pericallosal arteries. The above headache was my third one in one week. The first two episodes of headaches were not as bad as the third one. I didn’t think much of the headaches initially, and thought they were just associated with my use of birth control pills.
I am 49 years old, perimenopausal, and was started on combination estrogen/progesterone pills for Dysfunctional Uterine Bleeding in May 2020. Based on my recent readings, estrogen is proangiogenic and may stimulate AVM progression. In hindsight, I should have had hysterectomy as opposed to birth control pills for treatment of my uterine bleeding.
I haven’t had severe headaches since my diagnosis, but I have on and off headache 1/10 (on a scale of 10 being the most painful), seemingly positional. I am still able to cook, do light cleaning, walk, shower, etc. I have consciously not done strenous activities.
I also had dizziness on October 13, the urgent care doctor diagnosed me with Benign Paroxysmal Positional Vertigo, and impacted cerumen on right ear. I took one dose of meclizine, had my ear cleaned, and have been hydrating up to 1.5 - 2 liters of water daily, which seems to help in controlling the dizziness.
I have an appointment with a neurosurgeon on October 27. I pray that the neurosurgeon can fix my brain AVM with the best outcome. I would like to be taken off the hormone pills for my uterine bleeding, and at some point, if cleared by neuro, I would like to have my uterus taken out asap.
I have been emotional the first few days of my diagnosis, but try not to cry because that seems to trigger headaches. My husband has been supportive, and has been my great motivator. Our two kids, 11 and 12, know that I have something in my brain but they don’t know the details. My three siblings also are my support (two of them live out of state, one lives 30 minutes from me).
I don’t know what to expect, although I’ve done some readings on AVM. I just hope and pray that this AVM is curable. I hope and pray that I don’t die yet, as my kids are still young, and that I don’t become a handicap.
Is there anyone here that has a similar experience as mine (that is, location of the AVM, symptoms, etc.), and even if not , I would like to hear from you about your “journey”.
Thank you for reading.