Time for a much needed update.
Since being back from Houston I have been on several medications which have been helping me to get energy back. I also started exercising again which entailed riding a stationary bike, doing band workouts, light weights laying down, and core work.
The POTS postural orthostatic taycardic syndrome diagnosis has been really accurate in pinpointing my symptoms. The medication for that has really seemed to help as well as increasing fluids and salt intake. The vertigo has leasened a lot as a result of these changes so I have gotten to drive again. Hooray!
Gluten still remains a big trigger for the migraines. I had some accidentally and had a migraine for three days. I have been really focusing on being grain free, egg free, dairy free, and gluten free but it's been a tough regimen to stick to. When I really stick to it I feel better though and anything to lessen the migraines is a good thing.
We found out this week that the PFO closure procedure was approved so we will be flying back to Houston to have that done this month. The idea is that the PFO is allowing tiny micro embolisms through that hole to where they shouldn't be and that is part of what is setting of the intractable migraines. It also is allowing large amounts of serotonin through to the brain which makes the brain overloaded and this migraines. If we have the hole closed it will at least leasen the amount of stuff getting through or stop it completely. It's not a guaranteed fix and is still considered experimental but my headache specialist agrees it's worth a shot to see if it helps relieve the migraines at all.
I also had a spinal MRI done this week to check for a spinal fluid leak because apparently my brain is sagging into my spinal column. This is called chairi malformation and even though I don't present with all the classic symptoms I am showing enough signs that my headache specialist is looking into it. If they find a leak somewhere in my spinal fluid then there will be more things to decide from there.
We are going to my brothers wedding and I can't wait to celebrate such a lovely couple. I am so thankful that I am healthy enough to go and participate and not bedridden like I have been. I am feelings so so thankful for every little improvement and bit of relief. Nothing puts life into perspective more than when your health is taken away. I have gotten to go to james' tball practice and Ellie's dance recital, have mommy days with my kids, drive to my own appointments, go to the grocery store, and take my kids to the lake. So many things I took for granted before all this have been so precious to me. So I'm going to soak up every sweet moment I can with all our family and friends during this time. When we get back there are some really exciting changes on the horizon so I am going to keep looking forward with hope.
Since being back from Houston I have been on several medications which have been helping me to get energy back. I also started exercising again which entailed riding a stationary bike, doing band workouts, light weights laying down, and core work.
The POTS postural orthostatic taycardic syndrome diagnosis has been really accurate in pinpointing my symptoms. The medication for that has really seemed to help as well as increasing fluids and salt intake. The vertigo has leasened a lot as a result of these changes so I have gotten to drive again. Hooray!
Gluten still remains a big trigger for the migraines. I had some accidentally and had a migraine for three days. I have been really focusing on being grain free, egg free, dairy free, and gluten free but it's been a tough regimen to stick to. When I really stick to it I feel better though and anything to lessen the migraines is a good thing.
We found out this week that the PFO closure procedure was approved so we will be flying back to Houston to have that done this month. The idea is that the PFO is allowing tiny micro embolisms through that hole to where they shouldn't be and that is part of what is setting of the intractable migraines. It also is allowing large amounts of serotonin through to the brain which makes the brain overloaded and this migraines. If we have the hole closed it will at least leasen the amount of stuff getting through or stop it completely. It's not a guaranteed fix and is still considered experimental but my headache specialist agrees it's worth a shot to see if it helps relieve the migraines at all.
I also had a spinal MRI done this week to check for a spinal fluid leak because apparently my brain is sagging into my spinal column. This is called chairi malformation and even though I don't present with all the classic symptoms I am showing enough signs that my headache specialist is looking into it. If they find a leak somewhere in my spinal fluid then there will be more things to decide from there.
We are going to my brothers wedding and I can't wait to celebrate such a lovely couple. I am so thankful that I am healthy enough to go and participate and not bedridden like I have been. I am feelings so so thankful for every little improvement and bit of relief. Nothing puts life into perspective more than when your health is taken away. I have gotten to go to james' tball practice and Ellie's dance recital, have mommy days with my kids, drive to my own appointments, go to the grocery store, and take my kids to the lake. So many things I took for granted before all this have been so precious to me. So I'm going to soak up every sweet moment I can with all our family and friends during this time. When we get back there are some really exciting changes on the horizon so I am going to keep looking forward with hope.
2 comments:
I really felt like Chiari had to be a part of it! Crazy. I'm so glad that you are getting help and on the road to recovery! I have been thinking of you and really focusing my thoughts on you. Love you, lady!
Thanks Tessa. You would think that the other 24 specialists would have thought of chairi before this?! Go figure! Should hear results soon to know for sure. Thanks for thinking of us.
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