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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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You are amazing to put up with all of that. I really give you a lot of credit for going through with it. I hope you get some good information...good luck !
PS Just noticed the cat...bet it's your best friend...
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3 ReactionsMy kid did this in the hospital for 5 days and they kept her up at night and did stressful testing to try to induce a seizure. It was horrible. Evidence-based medicine and insurance requirements seem to be the culprit, along with MD skepticism that patient-supported seizures are psychological in origin.
Luckily my kid has a neuro who prescribes anti-seizure meds regardless. So what was the point?
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4 ReactionsAdmission to the Epilepsy Monitoring Unit at the hospital was my other option. I believe statistics show that 50% of seizure patients have normal EEGs. That would include me.
When the technician texted me last night and asked me to “ please get back in front of the camera”, I felt such rage! Fury! It’s like all the frustration I have felt, living with this pain for 7 years, and now seizures - it’s all directed at this stupid EEG.
Think I’ll go take some opioids now! Ha.
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3 ReactionsSorry to read what you are going through ... hopefully it will all be "worth it" once completed - I did wonder if which you are at home dong this that you are alone - by yourself ? Agree with you that it's what YOU feel is important .... and hope some here can offer suggestions to get through it all, sympathy and understanding. You are brave to even agree to two days of this ... I have turned down offers of testing that I know I won't cope well with, but this is above and beyond those offers... thoughts are with you.
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3 ReactionsYou are, indeed, an amazing person full of courage and with a wonderfull attitude that you have exhibited with this post. I hear that you are struggling and yet are coping as best you can. I shall pray for you now and ask the powers that be to help you through this difficult island in your life and that the next phase of your adventure be one of comfort, peace and happiness.
My prayers and wishes for a stop to your particular circumstances are being sent to you at this moment. It is 11:20 EST in Florida and I stumbled acress your amazing story.
Judith
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3 Reactions@julbpat most of my kid's seizures are temporal lobe (and bizarre), though they have some absence seizures. Temporal lobe seizures do not show up on EEG making the whole exercise unhelpful.
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1 ReactionThe most positive part of all this looks like your loyal loving kitty. Unfortunately, some doctors do treat the disease instead of the patient. But the fact remains that all doctors are required to follow standards of care that can be very uncomfortable for the patient. Right now, concentrate on the big picture, which includes short term pain for long term gain. Think about the fact that it's only hours that are left, not days, weeks, or months. Remember too that you, the patient, have the right to say no to treatment and let nature take its course. I really like the cuddliness of that cat.
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5 ReactionsI started having “complex partial” seizures in college, about 1981. I believe that term is outdated, maybe they would be called frontal lobe? Anyway, I was treated with these for about 25 years, until I stopped taking seizure medicine (Tegretol) in 2014. I hadn’t had any seizures in about 10 years at that time.
Neuropathy symptoms started in 2015, and I am on Tegretol again for neuropathy pain.
Recently the burning pain (in my toes) returned, and I also started having “seizures” again. They are similar to my previous ones, yet different. When I had 19 seizure days in a row, which completely crushed my mornings, I agreed to this monitoring.
In the meantime, last week a a small aneurysm was discovered in my brain, near the cranial nerves, etc. . Well in my mind, we have found the cause of these seizures! I’m a nurse, by the way. Priority now is seeing a neurosurgeon, which will hopefully happen this week.
I think that’s another reason I’m so irritated about this testing. It’s the aneurysm, guys! The EEG is going to be normal!
I feel for your kids. Temporal lobe seizures, to me, are kind of scary. Fortunately Tegretol worked for me (except when asleep) for years, and they did disappear for 19 years. Until this.
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4 ReactionsBronwyn has tried very hard to be part of this EEG - wallowing on the wires, rubbing on the recorder!
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3 ReactionsThank you, thank you, thank you! I have missed church for the past month due to these seizures. Today I didn’t even watch it online. I have been discouraged. Prayers are always appreciated!
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