Sleep Study, PT, and GI Issues

Hi everyone :)

I mentioned in my last post that I needed a sleep study to rule out sleep apnea. I got that test done and thankfully I do not have sleep apnea, which is a great sign because with all of my neurological damage we were worried I might. I do have some degree of insomnia, which we knew, so I am working with a sleep specialist to get some tips on improving my sleep. It was also found that I have a minor case of restless leg syndrome, so I need to get my ferritin (iron) blood levels checked because if my ferritin is too high it can cause restless leg syndrome.

It is great news that I do not have sleep apnea, but now we are stalled out on how to treat my increasing jaw pain. My insurance does not cover TMD (temporomandibular (jaw) dysfunction) treatment; there is a specific clause in my insurance excluding that condition. We are not sure yet how to proceed from here and are looking into a number of different options to find the best option for me with my EDS and that works with my insurance.

I have started working with an EDS friendly physical therapist, which has been a huge blessing! She is helping me strengthen my core in order to better support my entire body, increase the muscle strength (safely) of my arms and legs to protect my joints, and learn to be more aware of safe and effective positioning of my body in order to prevent injury. She is very patient and helpful with everything and is extremely aware of how my EDS affects me and how far she can push me without causing more harm than good. I am seeing her once a week for the next several weeks, as well as doing home exercises, and then we will evaluate to see if I can decrease the frequency that I see her.

I had another round of blood tests (some routine and some that we haven’t checked in a while), but I have yet to get those results back as we are having trouble getting them to the specialist that ordered them. Hopefully I can get that sorted out this week!

Unfortunately I have been having side effects from my GI medication, Domperidone, that decreases that amount of time my stomach takes to digest food. This medication is wonderful and has really allowed me to eat again, but unfortunately it raises your level of a hormone called Prolactin. This hormone is secreted in breast-feeding women, but should only be present in low levels otherwise. It is causing me issues with mood swings, breast tenderness, headaches, and amenorrhea (lack of a menstrual cycle). There are also concerns that the pituitary gland (located in the brain) may swell if your Prolactin levels become too high artificially, which may attribute to the increased headaches I have been having. I have contacted my GI doctor about this, but have not heard back yet. I hope that I do not need to discontinue this medication because it has really helped me bring my nutritional status back up to nearly normal and decreased my nausea, discomfort, and abdominal pain upon eating dramatically! We will see what he has to say, but I would appreciate prayers that this comes to pass and that we find a good solution to this problem!

I have an appointment next week with my insomnia specialist to discuss the changes we have made to sleep schedule and take a look at the sleep logs I have been keeping. We are not adding in any medications for sleep, but rather are working on behavioral modifications to try to prevent the nights when I am up for hours and cannot fall asleep. So far it has really been helping!

Then the following week I have an appointment with my ear, nose, and throat specialist for my annual check up. It is normally a very quick and easy appointment. I do have a couple of concerns as I have had two sinus infections since I last saw him and I previously had not had any since my sinus surgery in 2012. I hope it is not a sign of my polyps returning, but I have also had increased pain in my sinuses. Prayers that everything is ok on this front would also be appreciated! I will then have to redo my allergy testing (a very itchy experience!!!) in October to see if my allergies have changed and if the serum for my allergy shots needs to be modified.

That is everything I can think of for now… Oh! My service dog, Reilly, got skunked straight in the face the other day :( The poor guy has had so many baths and he and the house still smell slightly of skunk! Well, what can you do? Never a boring day around here, that is for sure!!! I will update again after I get my results back, hear back from doctors, and attend some appointments!