It's been a while since I updated on my health status.
Well, lets start with some good news. I am fully on the Lyrica and off of any painkillers and its working! I'm sleeping better also with that and the nortryptiline.
My migraines have even gotten better and in all this time I've only had one ER visit. So, I think the Lyrica may be working on my head also. I'm still taking all of my head medicine, but I may be almost ready to wean down. My second Botox treatment was a bust. But, I'm going to go for three. I'm hoping I get lucky. If I don't, then I'm done with those treatments and will be seeking another neurologist.
And now some bad news. I had my third celiac plexus block to help with my colon pain. My colon pain has gotten worse and the medications sometimes totally stop working so I have to take laxatives.
Over this past weekend, I gradually began to get backed up and bloated and we had been out. As soon as I got home I took a laxative.
That didn't work. And I started to bloat. By Tuesday I was in so much pain and looked like I was 6 months pregnant and couldn't even bend over. The GI doctor said to take charcoal capsules. I've been taking them for a day now and they are starting to help finally.
This is getting ridiculous and my GI doctors need to come up with a better plan then all of these medications that aren't working or my insurance will not fully cover all of the doses necessary. I will not get my colon removed at my age! I need to be able to have a quality of life!
I just saw my rheumatologist and I had a nice chat with him. It seems that my older daughter is showing signs of Ehlers-Danlos Syndrome. She was also just diagnosed with reflux and irritable bowel syndrome. He seemed to think that was interesting. He said I do have signs of it including stretchy skin, hypermobility, pain, fatigue, and the major GI issues of colonic inertia and GERD. He said I might have a minor case of EDS.
We have an appointment with a geneticist for my daughter in late March. So, I guess we will go from there!
Definitions
Ehlers-Danlos syndrome (EDS) is a heterogeneous group of heritable connective tissue disorders, characterized by articular (joint) hypermobility, skin extensibility and tissue fragility. http://www.ednf.org/
(GERD) happens when a muscle at the end of your esophagus does not close properly. This allows stomach contents to leak back, or reflux, into the esophagus and irritate it. http://www.nlm.nih.gov/medlineplus/gerd.html
Irritable bowel syndrome (IBS) is a problem that affects the large intestine. It can cause abdominal cramping, bloating, and a change in bowel habits. Some people with the disorder have constipation. Some have diarrhea. http://www.nlm.nih.gov/medlineplus/irritablebowelsyndrome.htmlq
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Lisa
