MRI/MRV Update 04/23/15

I have NOT seen the actual photos of my MRI/MRV from 04/20/15, I just had the results “read” to me.  The scan of my head and neck shows basically no change.  [The previous scans: ]  The vein from my neck (left side) to my shoulder opens up midway and does not show any indication of further clot.  Basically, nothing has changed in the images and at this point they do NOT recommend any of the more aggressive alternatives.  So stick with the plan for now, which is just adding aspirin to my regimen.  [If you are taking notes, I take thyroid meds daily (because I don’t have a thyroid), I take Xarelto daily (because I was a Cumadin failure; Xarelto is a type of anti-coagulant… blood thinner), I take Amitriptyline daily (it was originally developed as an anti-depressant but had the “side-effect” in low dosages, of helping people with head injuries to manage the pain a bit during sleep.

Aside from this doctor prescribed aspirin (NSAID), I can NOT take NSAID type medications such as ibuprofen, so the only OTC pain meds I can take is acetaminophen (Tylenol).  While I always “try this first,” this rarely helps if my brain clot is in a mood and causing me severe pain.  I usually take a hot shower and this often helps.  I have been crazy enough to try cold shower and that was a bad idea.  My “brain clot” is VERY sensitive to cold 😉   So if the pain is still too much after Tylenol and a hot shower, I have some oxycodone.  I hate taking it, and usually if I get to this point, I break it in half and start with that.  Sometimes I need the other half but usually, just the half brings the pain back down to a tolerable level.  Up until 2-3 weeks ago, I had not taken even Tylenol in several weeks!

Sometimes, I will wake up and realize that the pain in my head is what awakened me.  🙁  I do have something called Lorazepam to help me stay asleep.  I very rarely take this (in the beginning, I needed it more often).  I often try hot tea or warm milk if the pain is not making me cry, and often that will help me break up the cycle of “being awake” during the pain.  Sleep is definitely a factor in how my head feels.  Regardless of the reason I am awakened, if I do not get at least 5 hours of restful sleep, my head hurts exponentially worse the next day.  Once I reach about 5 days, I’m a wreck.  So my goal is to monitor my sleep and take as few drugs as possible to attain that 5hr goal.

For the past several months, I have had many more GOOD days/nights, than bad.  I really thought I had a system figured out but the past 2-3 weeks kinda threw me and it’s been steps backward.

However, in the LARGE PICTURE, I can see that overall, I have improved immensely.  (for example, it only took me about an hour to type this 😉 ).  I think I will just have to take a few days to micro-manage this current pain scenario.  We are adding aspirin daily, but I won’t know if that is helpful for 2-3 weeks.  I will keep ya posted.

As soon as I get a chance to actually SEE the images from the MRI/MRV, I’ll post some updates.

Thanks for all the well wishes, they are greatly appreciated!  And yes, feel free to offer me any advise!

Please, PLEASE, help me with my endeavor to stay in touch by sending me your email to add and/or signing up!

While I have you, please read two of my nurse tributes: and

What happened 04/08/13: and

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