What can cause severe headaches after CVST treatment?

Hello doctor,

I was diagnosed with cerebral venous sinus thrombosis eight months ago, after suffering from severe headaches. I have never had headaches in my life, except for very occasional tension headaches. I have been taking Warfarin ever since, and I had a follow‑up magnetic resonance imaging scan four months ago.

The radiologist’s report says there is an improvement in the previously seen dural venous thrombosis, with residual non‑occlusive filling defects within the superior sagittal sinus and torcula, extending into the proximal right transverse sinus.

Initially, after starting Warfarin, my headaches mostly went away. However, I have since woken up in the morning with the occasional bad headache. I was confused about why this would happen, so I did some reading and found that headaches could continue for quite some time due to scar tissue.

What confuses me is that if it is scar tissue, then the scar tissue is always there. In that case, why would the headaches come and go? I spoke to my doctor almost two weeks ago, because Acetaminophen does not help the headaches, and they can sometimes be quite painful.

At the time of our conversation, I had a headache that lasted three days. In the past week, I have had three headaches bad enough that I have had to take prescribed Vicodin for them. The headache I had this morning came on in the middle of the night, and I resisted taking medication for as long as possible. I did take Vicodin, but I still have pain.

Is it normal for me to still be having severe headaches six months into treatment? I have five children to care for, and my husband works out of town most of the time. The headaches, while not completely debilitating, make it difficult for me to go about my normal duties. I cannot find any good information to help me understand why I am still having headaches that hurt just as badly (or almost as badly) as the ones that sent me to the doctor six months ago.

Kindly help.

Hi doctor,

Thank you for responding to my query.

Headaches were rare for me, no more than once a month, or probably less. Suddenly, eight months ago, I began to have terrible headaches. As they were waking me up at night, a family member who is a doctor told me to insist on a scan. My doctor was willing to order the test for me.

The headaches are mostly frontal and bilateral, but the headache that I had yesterday seemed to involve my entire head. I felt pain in my cheekbones and low in the back of my head. I do not know how to explain the pain, but it is not throbbing. Sometimes, it feels like my head is burning from the inside. These headaches are much more intense than any I have ever had before.

I have had a couple of headaches that lasted several days. If I wake up with a headache, I have it all day, whether I take pain medication or not. Before I was put on Warfarin, the headaches were daily, or maybe one long, continuous headache. After I began taking Warfarin, they seemed to go away for a few weeks, but since the beginning of this year, I have had several that were very intense.

The headaches do not cause me stomach upset or vomiting at all, nor do they affect my eyes. Sometimes, I feel some nasal congestion when I wake up with a headache. Once I am up and moving around, that congestion goes away, and I can breathe freely.

I am happy with my life and generally in a good mood. I have a positive outlook, though I do have some anxiety issues. The medication that I take for anxiety is quite helpful. I have a very supportive husband and two grown daughters who are also wonderfully supportive. My husband and I are in the process of adopting five children, and we have the support of four therapists who are there for the entire family.

I generally sleep well. I average about seven hours of sleep a night. On nights when I do not set the alarm, I usually wake up after seven hours. I have begun keeping a headache diary recently, and so far, I have not found anything that seems to trigger the headaches. I believe that every time I have had a headache, I have woken up with it in the morning.

I take medicines for anxiety and adult ADD. At the end of last year, I went for a routine eye exam. They examined photographs of my retina and discovered papilledema, several small haemorrhages, and tortuous veins. They recommended discussing these findings with my general practitioner and requested imaging to help determine the cause.

Of course, I had already been diagnosed with cerebral venous sinus thrombosis, so I passed this information on to my doctors, who said that it was to be expected. I also sometimes see a white ring around each eye when I close my eyes. Lately, it is intermittent, but a few months ago, it was constant. In the past couple of months, I have begun to hear my pulse in my right ear.

Kindly help.