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Living With Facial Pain

Treatment Stalled for Headache Disorders (ON & TN)

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.

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Hi Melissa! I’m in the NY metro area. What I’ve found is that there are some doctor appointments. As a matter of fact, my husband just had his physical yesterday. My last appointment was tele-health, but it was for instructions on how to use a bone stimulator, and to go over my most recent imaging. That worked fine. Clearly if I’m involved in Ben’s Friends, I also deal with chronic health conditions. I’m not going nuts in terms of not leaving my house. Why? My teenage daughter works at a grocery store. She’s my primary risk factor well beyond anything that I could be exposed on my own.

I have felt safe enough going to the doctor’s office, but would avoid urgent care and the emergency room like the plague unless it was unavoidable. Better to go through my own doctor.

I wish you luck. It’s a lot of tough decisions to make. Btw, in New York the governor is talking about opening up by region. So clearly my area would be next to last. The city would be last.

Sharon from ModSupport

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Hi Sharon:

Thanks for the reply.

I’m glad you have some doctor appointments.

Medstar Health, which runs most of the hospitals here in DC, is tel-appointment only for an unknown amount of time. And all my health information with them so I have to wait until it’s “all clear”. They have opened up slots for procedures but that’s about it.

I originally was going to get the head injections but after I confirmed the appointment I got an email telling me if I lived with anyone OR myself have any chronic illness, to cancel. So I canceled. We haven’t seen the worst of it here in DC, and our city is 10x smaller than NYC so it’s hard to know when things will peak or get back to whatever the “new normal” is.

My neighbors 3 doors down (we are in rowhouses) had coronavirus, and I am almost positive the elderly next-door neighbor had it. She died in mid-March after being sick, very suddenly. She had promised her boyfriend she would call an ambulance if she felt worse but never had the chance.

Our region is already talking about opening up but I don’t know if that’s realistic. I With chronic kidney disease and autoimmune stuff, it will be a while before I have any in-person appointments.

I am just waiting, trying to be patient, but being medicated further will make it so I can’t work at all. I’m still working part-time at home. I am not sure I will have a job by next month, however.

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I’m sorry. You’re in a rough spot right now. While most of NY has peaked, it’s not true for most states.

<3 You all had it so tough, hopefully the early measures here will help flatten the curve. Who knows? We are all bracing for the future. Thanks for talking to me here, I don’t know many people IRL with chronic illness at all.

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