I am happy to report that I have made some huge improvements since my last post in April! The single thing that has made the biggest difference for me is sleep. I was prescribed an extended release Ambien, and I am actually sleeping again! Now that I get enough sleep most nights, I am not having any adrenaline surges or anxiety! I'm also not feeling depressed anymore. It is such a relief! I truly have reclaimed my sense of well-being. I've also left the house alone a few times.
I've been able to exercise more, so my POTS symptoms are doing well.
I have tried Clonidine, but it seems to lower my blood pressure too much. And when my blood pressure is very low, my heart over compensates by pounding, and the pounding heart wakes me up. So, I've discontinued this. I also haven't needed my beta blocker, since I'm not getting the adrenaline surges.
I understand that Ambien is not the best medication to be on regularly, but at this point the benefits are far outweighing the costs.
My migraines, unfortunately, are persisting at the same level of frequency and intensity. I'm triggered mainly by weather changes and perfumes. I've started getting more visual auras preceding my migraines. It's really annoying. I'm seeing my neurologist again in a couple weeks, to see if we can come up with any ideas to try. I'm a little worried she'll say that she's out of ideas, as I've heard that from headache specialists before. But hopefully, we'll come up with something to try.
We have a couple small trips planned this year, which is something I wouldn't have been able to do when I wasn't sleeping.
I'm still not satisfied with my level of wakefulness on an average day. On days when I don't have a lot of interaction with people, I tend to spend a lot of time staring. I would still like to be put back on a stimulant, at least for certain days. But I don't have a doctor currently to prescribe it. And my PCP doesn't like prescribing stimulants. My psychiatrist may consider it in the future.
I still don't have an appointment with the local POTS doctor. I just want to be put on the waiting list, but I can't seem to get a call back from his office. I think it has to do with me already seeing another neurologist in the practice, but she's only treating my migraines, not managing my POTS. This is an item on my medical to-do list.
I also need to see my PCP again soon. I'm hoping to get a handicap placard from him, as I'm frequently using my wheelchair or walker.
My joints are still being difficult. They seem to take turns causing me trouble. My knees were terrible for a while, but they've eased up a bit. My SI joints, spine, shoulders, and feet also get pretty bad at times. I don't have a doctor managing my EDS, so I currently just look up PT exercises online and buy OTC braces. There really is a major shortage of EDS doctors. Dr. Tinkle's wait list is closed to new patients, because he is in such high demand. I was diagnosed in Baltimore, but can't reasonable travel back there just to manage symptoms.
I'm beyond frustrated that with my migraines being chronic, I can't take any pain medication for my body aches and joint pain.
But honestly, even with all of these troubles, I just feel relieved that I'm not stuck in the depressed/anxious hole I was in when I wasn't sleeping. I feel somehow capable to cope with all of these other issues.
