Mystery

Almost 6 months ago now, in addition to my other chronic health issues, I started having what I can only refer to as “night episodes”. I’ll wake up feeling weird, nauseous, shaky, weak and generally discombobulated. We had originally assumed it to be a hypoglycemia related thing. I took consistent readings of my blood sugar for a while and did a 10-day continuous glucose monitor and neither showed anything abnormal.

I’ve tried tracking my heart rate, my blood pressure, my temperature. I’m going to see a rheumatologist and a neurologist. But I’m struggling to even describe my symptoms.

Sometimes my limbs feel disconnected and floaty. Or they’ll feel unnaturally heavy.

Sometimes my head feels pressurized and floaty.

Sometimes I feel like my body is filled with bees. They’re not stinging, it’s not painful. But they are buzzing around. And I’d like them to stop.

Or it feels like my body has been hooked up to a very low voltage power source. Not enough to hurt, barely even enough to shock you if I touched you. But enough that I’m extra aware of so many nerves all at once.

The only thing I’ve found that helps is heat and food. I will grab a small snack and get under my heated blanket. Then I can usually get back to sleep. Once I get back to sleep, I’m usually okay.

I don’t get night episodes every night. But some weeks they’re more frequent than the nights I don’t. But they do seem to be connected to my circadian rhythm and anxiety as they’re more likely to occur on nights before I have to work the next day or when I stay up too late (past 10pm) and they have gotten a little less intense as I’ve been working on my anxiety coping skills.

Some nights have been especially bad though. One night I kept having a head-squeezing paired with the brain equivalent to the feeling in your nose before you sneeze. It would happen at random though the night. I was so scared I was about to have a seizure, which is odd, because I’ve never had one before. But I think it was so close to what I imagine the lead-up to a seizure feeling like. (For those that are aware of the lead up to their seizures anyway.) Then another night I woke up at 5am in a panic. I oriented myself, thought it was odd and tried going back to sleep. Every time from then on when I would get to the twilight phase of sleep, it would happen again. I’d get an electrical tightness across my chest and upper arms, and panic. Then rhythmically, even after I’d given up going back to sleep and got up, I’d feel like someone were taking each of my internal organs and squeezing them. It was discomforting to say the least.

At this point, I don’t have any answers. I don’t even have good medical terms to describe half of this. But I’m going to keep looking. The flame of hope flickers still. As a song from one of my favorite childhood movies says, “Hope is frail, but hard to kill”. Hope takes a beating. But she rises yet again.

I am determined. I will pray. I will search. I will be kind to myself. I will utilize my curiosity and be courageous. I will acknowledge my emotions. I will wander this road till I find my way home.

#Mystery #hashimotos #chronicinflammatoryresponsesyn drome #PostconcussionSyndrome #IBS

This is my first post, but I am hoping to get some opinions from people. I have battling chronic illness for years and it has recently gotten bad. I have a lot of blood work/tests that indicates a problem, but is very unspecific. I'm starting a new medication to treat the pain I experience (assuming it works), but I am experiencing some cognitive dissonance about the whole thing. I want the pain to go away, but I desperately want an answer, a reason for the pain. If my pain goes away, I am afraid doctors will stop helping me try to find an answer. Do I NEED an answer? Or do I just want an answer to make myself feel better mentally? If the medication works, should I stop looking for an answer? I don't want the past 5 years to be chalked up to nothing and just be stuck taking random pills. Any thoughts/advice is appreciated.#LymeDisease #ChronicIllness #AutoimmuneDisease #Undiagnosed #Mystery #AbsenceSeizures #Nervedamage

On Friday i spent the night in the er, I had developed sudden tics that had no explanation and still have none. I have seen countless doctors and have been contacted by all of my family every day trying to ask questions. I have no idea whats wrong with my body and I am so so so so exhausted #tic   #Unknown   #tired #Mystery #ouch #Anxiety #Depression

I finally had my neurology appointment. My fiancé drove me an hour and was with me in the room for my four hour appointment. We went to the nearest research hospital which specializes in MS. I knew I didn’t have MS, but I was desperate for an appointment somewhere.

I was interviewed by 4 doctors, and the last was the one whom I had emailed my medical PowerPoint to. She made me explain in length how I had come to be prescribed 25 different medications at age 27.

I explained that when I was 12, I was bullied for having curly hair. I tried telling this to my parents, but they didn’t believe me. Full of anxiety and hatred for my hair, I began pulling my hair out until I had a bald spot. My mom took us to the family doctor who referred me to a child psychiatrist. I was given antidepressants, which didn’t work, then mood stabilizers and antipsychotics. After this I was slapped with a bipolar diagnosis.

The neurologist explained that she believed my diagnosis was unfounded and that I may have social anxiety, but not bipolar, and needed to come off my meds. The antibodies, inflammation, and pain in my body that lead to my undiagnosed autoimmune mess was caused to a huge overprescribing of medication that I did not need and was treatment resistant to because I was not bipolar.

This was not the first time I had heard this. I often felt throughout my life that my existence was destroyed by being put in a psychiatrist’s office. However, I’m a bit conflicted because I know how hard going off medication is, and I have no idea who I am underneath the meds. I stopped being a person after my diagnosis; as a kid it hit me hard.

My fiancé texted me a while ago that drug induced lupus exists which would explain why I have #Lupus antibodies. Still, this is a bit weird to me. I do not want to be bipolar or be in that marginalized group. That’s for sure. I do not want my relationships and my grades to get hijacked by going off medication during midterms. But do I want to be cured? Hell yeah!

#Bipolar2Disorder #ChronicIllness #ChronicPain #Mystery illness