piratesbooty

How are you being treated? With what meds? I was on something like 120mg of verapamil 2xday and about 1200 or 2400 mg of magnesium. Not sure if there are different way to treat it. And did they figure out your trigger?? I know my doc at JH said my recovery was "impressive" (thought he was just being nice), but I wasn't under the impression that it takes that long to reverse once you stop the trigger and take the meds. Please, no matter what, be patient with yourself. It is an extremely scary thing to go through and a not very understood and underdiagnosed syndrome.

At my 6-week mark, they rechecked my brain by doing a "with contrast" MRI where they injected me with dye that then went through my brain and then separately a CT. I think that was how it went. At that time, my blood vessels in my brain had returned to normal (from "sausage links" to "tubes") and they saw that the blood had soaked back in. So I no longer took the verapamil (makes your blood pressure go down, although mine was always low anyway) and high dose magnesium that had been my treatment. Yes, my blood pressure spiked during the thunderclap portion of the episodes, due to the extreme pain. I was also vomiting from how much it hurt. Those were a very painful, very scary two weeks. Things actually improved once I started stroking. I had 9 thunderclap headaches over two weeks, then 5 strokes, then when they retested my brain, they found the small bleed in my right frontal cortex. Was at Johns Hopkins for a week in the stroke unit. I have no residual issues (lots of people get headaches, I was told). I am also 38 and in good health otherwise. I am diligently working through the emotional aspects of this, and the chemical part. Physically, I am fine--walking, talking, working, etc. Just really trying to heal in every way, but still struggling with sleep issues that have turned to sleep anxiety, dealing with the meds, etc. Please let me know if you have any other questions. It was an extremely difficult episode that has changed my life a lot, despite not having any real physical manifestation at this time.

I have been looking for someplace, somebody, who has also had this. In April, 2013, I started having the thunderclap headaches. As you know, the most excrutiating pain imaginable. Had about 9 of them--went to ER 9 times in 2 weeks. Then the strokes started, then they found the bleed in my brain. At Johns Hopkins for a week. The SSRI, Lexapro, I was on for many years was the perceived trigger. My brain has "reversed" and the blood has soaked back in, according to my 6 week check up. I am mostly fine, with only very high functioning processing issues/very short term memory problems. However, my body is dysregulated after they cold turkeyed me from the Lexapro. So my bowels got messed up, I cannot sleep without being medicated, panic issues that I never had before. I am generally exhausted and stressed most of the time. I've been back at work/life since a couple of weeks after it happened. Eager to hear your story and see how you are doing. I finally just accepted that I had these subconscious expectations that my life was just going to go back to "normal" in a MUCH shorter amount of time than I anticipated and searching for every possible way to not be this uncomfortable all the time.