Hi. I haven’t been here for a while. I’ve been overwhelmed the past few weeks.
I have trigeminal neuralgia as well as occipital neuralgia (ON). The two see to mesh together sometimes. Occassionally I have migraines, too.
I was doing a lot better the past year with the ON. I get head injections every month, which worked really well, and the meds I take were keep TN attacks to a few short attacks a week. (When diagnosed in 2015, I had 40+ attacks a day and couldn’t do anything outdoors for over 6 months.)
Now, I am in a geographic location (Washington DC) that is a COVID-19 hotspot.
My doctors, all in the same health system, stopped taking appointments in-person in March. They didn’t have the equipment or resources to clean between appointments. Patients were stealing gloves and masks! And a patient who was supposed to be in quarantine laughingly told them his condition at the end of a treatment session. They had to shut down. They ended up sending their protective equipment to a main hospital.
My headaches/face pain have been getting worse and worse. I had ON symptoms and TN pain off and on the other day. Then I got a migraine.
My doctor called me the other day to tell me they were offering limited appointments for injections only. 5 a day once a week. But I can’t even do THAT because I am considered at-risk due to a few congenital issues (missing kidney and weird heart defect and more).
Also, my medications have been back ordered (oxcarbazapine and gabapentin, plus a few other non-headache meds) for the first time every. I had to wait an extra week, and I am worried there will be a shortage. We use CVS.
Anyway, is anyone out there in NY or another hotspot? I don’t trust the “reopen America” stuff. I don’t want to die and COVID-19 is a serious risk for people with serious diseases/autoimmune stuff.
I know I am lucky to be alive but nobody with TN or ON is particularly lucky IMHO. I get so mad/amused listening to people complain about being stuck indoors. I was stuck indoors for 18 months when I first got these headache disorders. I lost friends and nobody really understood chronic illness, they just kind of went on with their lives.
Now that everyone is stuck indoors there are plenty more “social” things to do online. I feel like I’m finally allowed to be a part of more things.
It’s just hard. I know it’s just as hard for me as anyone else, probably. But I am fighting this depression and pain and they both seem to meld into one right now.
So I cry and my head hurts. If I don’t cry, my head hurts.