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It’s okay to say no to your doctors
As I write this, I am trapped in my house for the second day with about 25 EEG electrodes glued to my head and chest. I’m wearing an uncomfortable cross-body strap to hold the recording apparatus. I was told I can’t wear my favorite clothing ( soft tshirts) but only button front shirts. I must stay in front of one of two cameras “at least 85% of the time” by sitting in my recliner, or in bed. No going outside. No exercise. No bathing.
This is an ambulatory EEG to record my new-onset seizures. I have one focal seizure a day, about two hours after I get up. Then I have about 3 hours of recovery, with some dizziness, double vision, and sleepiness. The other 21 hours, there is absolutely nothing to see.
I reluctantly agreed to this, but when they were giving me instructions, and told me 72 hours of recording, I said “oh hell no”. I will record two seizures, then this stuff is coming off my body. We negotiated and agreed on 48 hours to satisfy insurance (guess what - I might become demented and end it myself before then).
My point is, I knew this was going to be a nightmare for me, with my small fiber neuropathy. I have a careful routine that I follow to minimize my daily suffering, both mentally and physically. Having crap glued to me, 25 wires dangling, getting caught on everything, and my functions inhibited - agh. I’m irritated, with a simmering fury at the process, and anxiety, things I rarely experience in my normal life. I have a chronic illness, with chronic pain and disability, and I work hard every day to live my best possible life. It may not make sense to other people, but it makes sense to me, and that’s all that really matters.
My neurologist, who is young and new, is frustrated and puzzled. That’s okay. He will never forget me as one of his first patients, and hopefully he will learn something about the importance to listening to the patient rather than following the strict protocol.
Eight more hours!
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Oh my. I understand your frustration. Testing can surely be awful sometimes, but sometimes it’s the only sure (and economical) way to get results, if you’re hoping to get them, is to complete the cycle, however difficult. Repeating tests due to test failure is timely and costly, and painful all over again. I know our choices are difficult. I have had friends refuse or stop chemotherapy.
I feel for you and hope the hours go quickly! I thought forcing my husband to properly swab his nose for at home Covid tests was hard! Then making him wait for his results before he was allowed to go out. But seeing your pictures makes me really see the hardship. Praying for your freedom soon, and for results that are helpful and can make your life easier!
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2 ReactionsThis is a hard test, indeed. I hope you can binge watch some lighthearted films or Hallmark movies while you undergo this test. Do you have someone there who can at least bring conversation? Can you call friends? I would find it very difficult to endure. I had a Holter (sp.?) monitor on for two weeks one time to monitor my heart, but could still travel and dance at a wedding. Nothing was found.
I also had a sleep-deprived EEG at 2 AM, with negative results for what was causing fade-outs close to fainting. ( I learned From a later “tip table” test that I had Veso vegal syncope. It was positive and I passed out in less than 5 minutes.)
I am not in love with needing tests and most of these have been done in the last 15 years because of ongoing mysterious symptoms.
The tests to eliminate possible causes of my neuropathy, and to test the extent of them have occurred in the last 2 years after a sudden onset of symptoms.
I’m glad you wrote and sent the pictures. Show them ( and our responses) to your doctor. We are not mice in a lab, and better, motte humane tests need to be developed. But in the meantime, we are stuck.
I hope you endured, and came through on the other side.
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3 ReactionsThat should read “more” humane tests.
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1 Reaction@julbpat I cannot say I feel your pain but on the positive side of your predicament you’re at home instead of a hospital room and bed 👎. You’ve got all your creature comforts plus you’ve got your buddy keeping a close eye on you too. It’s fairly recent that these studies can be performed at home now instead of the hospital. I know you want to get to the bottom of your new seizures hence reason for test. Seizure recovery nor the seizure itself is no fun so I understand your eagerness to have an answer. But it’s only 72 or 48 hours and I hope you can do it all or they may want to repeat it otherwise if recording was insufficient to diagnose you.
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