More Thorough Medical Information

In a previous entry, I wrote briefly about the details of my two ER visits in the last month. As I think I said in that entry I had a neurology appointment set for November 19th.

In keeping with health disclosure, last night while I was in ASL class I had what was described to me as a seizure. I'm not sure which kind of seizure, but several classmates noticed it, one of them a nurse, and another a mother of a child with a seizure disorder. I don't remember the incident, just that my classmates kept asking me if I was okay. I had been rubbing my eyes, as the overhead projector was flickering it hurt my eyes. I had taken off my glasses and was holding my head in my hands trying not to look up at it, because it hurt to look at, and I was told after class that I froze for a several second period, as well as visibly clenching my jaw,  and then resumed rubbing at my eyes as though nothing had happened. There was no obvious reason to freeze, the teacher wasn't signing at that moment, there was nothing that should have grabbed my attention, and I don't remember the incident at all. I told the classmate that approached me that I had an appointment with a neurologist in the morning and would tell him of it.

This morning I woke up after not enough sleep (night time class), and Osaka went with me to my neurology appointment because I had nerves and she is an incredibly good and supportive friend. When we arrived I had a bit of.. unsettlement as there was someone singing and playing the guitar in one of the adjacent rooms and it felt a little like music therapy in a mental hospital, which did not help my nerves at all.

The staff were very friendly though, not at all judgmental, and we didn't have to wait long at all. It was really bizarre (in a good way) to see my doctor at the actual time of the scheduled appointment.

I don't remember much detail from the appointment because I was stressed out and in quite a bit of pain. Osaka said I was wibbly; kind of quiet and.. trembly sounding.

The doctor took a moment to look over the information I brought in. Some was requested, but I had also typed up a summation of my side effects on the new medication, and an up to date list of medications and dosages, which did not match what the hospital had on file. He entered all of that in there, and asked questions about family history. I mentioned that my youngest sister had a diagnosis of epilepsy, and went over details in the medical history of myself and close family members.

Once that was through he asked me to take off my shoes and socks, stand up, and walk toe to heel to the other side of the room, and then back again. I had a very difficult time staying upright and imagine that I was flailing my arms for balance. I think he asked if I felt dizzy and that I told him I did.

Then he asked me to sit on the medical..table? The thing you sit on at the Dr's office, and he checked my reflexes, did that touch my finger, touch your nose test, looked at my eyes with the lights on and off, and then told me I could sit back down and put my shoes back on. I think he did some other test stuff but I can't clearly remember.

After I had my shoes back on he said that while he didn't think it was epilepsy he did have a theory, but it required extensive testing and he was concerned because of my lack of insurance that the cost might be prohibitive.

He asked if I had looked into insurance and I explained that I've been jumping through hoops for about two weeks trying to get insured either through the government insurance or state medicare. At this point I am eligible for healthcare through the government market but can't afford it. I do not make enough money to qualify for the tax credit to afford it. Also Virginia opted out of offering anything other than family planning(or preventing) care, so.. I'm not eligible for that either, or rather I could get on it but it wouldn't cover ANY of what I need, so I didn't continue the application for that. It didn't help that the person reviewing my case was poverty-shaming me.

Anyway he said he was certainly willing to work with me, and do tests as I can come up with money for them or manage to get insurance. He prescribed two new medications for my migraines (no doubt at all that I am experiencing actual migraines), and we scheduled a followup in two months time to hopefully do the first test that will either eliminate or confirm epilepsy. He said that on the brain level epilepsy and migraines are very similar, but he suspects what I actually had was something called POTS or postural orthostatic tachycardia syndrome.He believes I very probably also have sleep apnea which makes things worse for both migraines and POTS if that is indeed what I have.

The EKG(?) test for epilepsy would cost between $150-300 he guessed, for someone with no insurance, and he said the sleep apnea test would be in the thousands. He did say that insurance would almost definitely cover all of the tests I need at a very reduced rate, so if I am able I should try to get insurance. I think that I have exhausted all of my insurance options at the moment.

So I am left with the quandary of what to do. I am going to try and pull together money for the epilepsy test by my January followup appointment, and go from there I guess. I did want answers and I got some, but nothing is firm without proper testing. So.. in the meantime I do at least have better migraine medication. I think I'm taking what Ashbet takes for hers (please feel free to confirm or deny in the comments!). In fact right after I left my doctor's appointment, I texted in order Mom because I promised I would, and Ashbet because I know she is aware of POTS, and might have some insight.

It was really nice to be taken seriously. I have spent the majority of my life being told I am being melodramatic, or a hypochondriac, or just.. ignored. I was taken seriously, treated with respect, and I feel validated that NO, there IS something physically wrong, thank you very much.

Fun fact. There are 15 hospitals in the US with a POTS specialist. My hospital of choice is one of them.