Day 7 - IH Awareness Month
- mycorneroftheworld
- Sep 7, 2015
- 3 min read
Why is more awareness and education needed? Here is my constant debate in the middle of being in so my head pain that cracking my own head open to relieve the pressure sounds like a viable plan. This is my experience with medical professionals. I don't necessarily blame them (except a couple and you will see why as you read I'm sure) because they aren't educated about it and they also aren't set up to deal with something when they don't know.
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Have ever debated going to an emergency room? Not because you don’t need to go but because you don’t know that going is even worth it? I have. I can have swelling, have horrible vision issues and head pain and I will sit and debate going to the emergency room. Why? Because a lot of the time, I run into one of these situations that have already happened to me:
A triage nurse who doesn’t know what IH is and hears head pain as headache. I don’t have a headache or migraine, my head pain is from csf pressure and if you would listen when I say that or ask if you don’t know what IH is then we might being on the same page. Pulling my curtain closed and tossing my chart on the desk saying the patient in room 3 is another here for a headache.
A doctor who is in charge and someone has told him I have a headache and, even though I have been sent to the emergency by one of the doctors because of my symptoms, has decided to lecture me on the waste of valuable time and resources of the emergency department. Coming back ten minutes later to continue the lecture on how I should go home because I shouldn’t be there...even though neurology had called before I got there because they wanted me admitted.
An overworked nurse who even though I explained IH to her and she seemed to understand went with the doctor on how on there for a headache and am wasting time.
An over zealous resident who runs out of the room at the first mention of IH because we doesn’t remember what that was and wants to learn everything about it...to come back into the room with old information that isn’t necessarily accurate.
A resident who remembers reading about IH once upon a time,in a paragraph, in a medical but doesn’t remember until the third time I mention the older name of pseudotumor cerebri...then panics.
Someone who asks me what they should do about it? Well, maybe start with the neurology department, my neurologists, my neuro-ophthalmologist? If I knew how to fix it, I wouldn’t be there. Do I get a discount if I treat myself?
I do not have have one pain pill on my medication list, because they don’t work. I offer to let them run a screen for all kinds of pain meds, but instead I sit and go through at least 6 people screening me for drug seeking. If they would fix my head pain, I wouldn’t be there.
Medical staff who want to fix everything else except IH because they have no clue what to do for it so they ignore it.
Tell me I’m having a panic attack and give me anti-anxiety meds then are upset when I say they didn’t work. What is your anti-anxiety med going to do to the pressure in my head?
The hospital system I use has an advocate department for patients with multiple conditions so that if they go in for emergency care or care outside their area, someone can be called and the patient has a team who understands the condition and can explain it in medical terms if their are questions. I'm not eligible. I had a therapist who tried to get me in and was told I had to be terminal or a child to enter the program. How much frustration, resources and time would it save for everyone if chronic illness patients with rare diseases who weren't facing the end of their life were involved in it? So, I sit and wait for an appointment with my specialist which is 6 weeks out from a call. Unless vision is extremely bad, then you may get in sooner. But for the most part it’s a waiting game. IH has become just a long waiting game for me.
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