Wednesday, May 11, 2016

Two Months on Full Dose Gastrocom

I have now been on full dose gastrocom/cromolyn sodium for about two months and things are improving.  :)  It is very nice to stop the accelerated worsening I've had over the last several years.

The first thing I noticed was a lessening of the severity of my headaches.  I still have a constant headache but it spends more time in the three range now instead of the four/five range of the last year.  Next, my sense of smell improved.  I noted this when I was surprised by the smell of ground black pepper.  Apparently I hadn't smelled that in so long that I forgot that it had a smell.  My spice cabinet apparently smells when I open it, too.

My gastrointestinal system then improved with less extremes and much less nausea.  Additionally, for the majority of my life I had no appetite and was never satiated/full.  I ate because I needed to do so but apart from crashing blood sugar levels was never self prompted to eat.  The antihistamines I started over a year ago had given me a regular appetite which was an improvement but I still never felt full.  Now with the gastrocom added I actually feel satiated as well.  It is something of a foreign sensation but I'm excited to now eat when hungry and stop when full.

In the last few weeks I have also noted that my fragrance sensitivity might be improving.  Normally, even with premedicating with additional medication (benadryl which is a rescue medication for me) and a face mask I feel worse for the remainder of the day and up to three additional days after being among lots of other people.  I forgot to premedicate before church three weeks ago and did not feel worse for the remainder of the day.  The next week I did premedicate and still did not feel worse after church.  This last week I did not premedicate and did not feel worse after church.  It would be a wonderful blessing for my fragrance sensitivity to continue to improve.

I have noted, however, that I am more reactive during the second half of my menstrual cycle and am back to getting fairly ill the first week of my cycle.  I am also experiencing "an excessive inflammatory response to ovulation" for up to five days which started four months ago. I may have to go on medication to regulate that but have thus far responded poorly to artificial hormones.

In other news, I graduated from physical therapy for my core and am doing much better in regards to pelvic movement and recurring low back injuries.  Next up is tackling my moderate to severe neck and upper back pain.

Thursday, March 3, 2016

It's Been a Crazy Year!

I can't believe that it has been a year since I last updated my blog.  Many things have happened.

We packed up and moved at the beginning of May.  I actually had more energy for about two weeks which was a huge blessing since we had to set up a new house.  Shortly thereafter, my daughter was born by unplanned c section which really made a bad situation worse.  Even though I've been told that you can't react to injected anesthesia, I spent the next 24 hours uncontrollably vomiting.  I requested scopolamine early on and finallyrecrived it.  Within about twenty minutes after application all the vomiting stopped.

I wear my mask and add another benadryl on top of my other antihistamines whenever I leave my house.  I close up my house whenever my neighbors do laundry and take more antihistamines.  The offgassing of at least one person's laundry gives me fairly significant cognitive changes within a few minutes.  My headaches have dramatically increased in intensity which has always been my experience with routine use of antihistamines.  My allergist said that essentially I had to pick the bad headaches or anaphylaxis.  She then left the practice and moved out of state...

The c section further weakened my core strength.  I repeatedly injured my back and experienced pain as I walked in my pelvis because my muscles couldn't keep the pelvis together.  Fifteen years of chronic fatigue topped off with a c section is not a good combination.

I was a mess!  With the support of my husband I saw my primary care doctor and left with what seemed like a zillion referrals and test requests.  I'm still working through some of those.  I started and am continuing physical therapy for my core.  I'm happy to report that physical exertion no longer seems to knock me out for three days.  I received a good report for my sinuses from the ENT but no help for the constant headache, pain and post nasal drip.  All the autoimmune testing came back normal again but I'm supposed to see a rheumatologist.

My new allergist said that he thought I had a mast cell activation disorder unprompted on my first visit.  He ordered lots of tests and I tested positive for Mast Cell Activation Syndrome.  These are the tests that my last allergist said were a waste for me to have done.  :)  I'm now on gastrocom and worked up to full dose yesterday.  There might be an improvement in my sinuses already.

I have never been so happy to have a new diagnosis.  :)  This one can actually replace many of my other ones.

Gastrocom is a mast cell stabilizer.  It is not well absorbed so I am taking 200 mg (2 ampules) four times a day, 30 minutes before each meal and at bedtime.  The stomach is to be empty.  This drug can calm the mast cells all over the body so I am quite excited to see what this drug can do for me.  I follow up with my allergist at the end of the month.

So, the last two months I've had the gumption to start over my medical care and this time things are improving.  I have hope once again for a better tomorrow.  The Lord told both my husband and I that this would be a better, different year for us and 2016 has started right off in that direction.