Pain leading to Seizures

Posted by tcr0315 @tcr0315, Sun, Jul 28 11:37am

11/7/2018. The start of a terrible medical issue. Tooth filling possible drilled to deep. Nausea headaches started same day then that and occasional throw up. Lost of time in school. May have made it In all a week. Every time she ate she threw up headaches nausea. Strep throat find out she’s allergic to penicillin she swells up so bad 4 days later she starts having seizure. Terrible a week it was identified it is not epilepsy seizures. Great but not great cause she was having episodes that last up to 45 minutes after leaving hours. As we leave the medical facilities she having episodes. Diagnosis is at this point PNES. Frustrating cause everyone and everything is in question. But worst she’s states she is not stress nothings bothering her. Several hospital visits in the ER. Just last week 4 hospitals. We have been in and currently are in the pediatrics of Wake Med

We tried everything and she’s getting worst and seizures. Throwing up blood as well cant keep food down. What are we missing. She complains of bad headaches chest aches and right side aching. Pain so bad she seizes. EEG ekg mri ct no significant findings. Stomach X-ray and saw some poop so she was given a laxative and see if that stops the pain. Update is got the laxatives down threw up seizing for the last 5 minutes and more. No one knows what to do how to treat where to look or what to say. I offended when they go the psych road I not that willing to buy this There’s something wrong. We r still in PICU at Wake Med. I need some help input ideals

Liked by Leonard

@tcr0315 What comes to mind to me is a possible skull/spine alignment issue if she had her head tilted back too much compressing the occiput (base of skull) during the dental work. There are some positional spine issues that interfere with circulation to the brain. There have been instances of patients with strokes because of a similar head position at a beauty shop getting their hair washed. There can be muscle spasms that move or twist the upper vertebrae right under the skull and hold it that way. That has happened to me. I am a spine surgery patient and that was happening to me before my surgery for a collapsed disc from bad muscle spasms. I had some episodes of extreme dizziness and vertigo, and that was resolved by my physical therapist who got everything realigned properly. There are some spine conditions, like Bow Hunter's Syndrome, where turning the head also turns the first vertebra and it can get stuck in that position interfering with blood flow to the brain that causes nausea and dizziness. You might ask for a neurosurgeon with an interest in skull base issues, and after that, someone like a physical therapist. I get headaches in my neck and back of head on one side when my vertebra gets turned just a little bit. It can happen if I sleep wrong. Physical therapy has resolved this for me.

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@jenniferhunter

@tcr0315 What comes to mind to me is a possible skull/spine alignment issue if she had her head tilted back too much compressing the occiput (base of skull) during the dental work. There are some positional spine issues that interfere with circulation to the brain. There have been instances of patients with strokes because of a similar head position at a beauty shop getting their hair washed. There can be muscle spasms that move or twist the upper vertebrae right under the skull and hold it that way. That has happened to me. I am a spine surgery patient and that was happening to me before my surgery for a collapsed disc from bad muscle spasms. I had some episodes of extreme dizziness and vertigo, and that was resolved by my physical therapist who got everything realigned properly. There are some spine conditions, like Bow Hunter's Syndrome, where turning the head also turns the first vertebra and it can get stuck in that position interfering with blood flow to the brain that causes nausea and dizziness. You might ask for a neurosurgeon with an interest in skull base issues, and after that, someone like a physical therapist. I get headaches in my neck and back of head on one side when my vertebra gets turned just a little bit. It can happen if I sleep wrong. Physical therapy has resolved this for me.

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Interesting I will think further. We are still in hospital. She is now projectile get vomit and episodes after

Liked by Leonard

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Hi @tcr0315, I'd like to add my welcome, In addition to the tips that Jennifer has offered, please read the experiences and suggestions of @cindypekarek @calical and @oakbourne in these discussions.

– Monthly shaking episodes that continue to progress https://connect.mayoclinic.org/discussion/monthly-shaking-episodes-that-continues-to-progress/
– Non-Epileptic Seizures or PNES https://connect.mayoclinic.org/discussion/non-epileptic-seizures-or-pnes/

May I ask how old the child is?

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13

Liked by Leonard

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@tcr0315 Another thing to check for would be Lyme Disease. It mimicks many diseases and is usually missed. ILADS is the group of doctors who specialize in Lyme and the co-infections. It can get in the brain and cause a lot of disability. The more accurate Lyme lab testing is from Igenex. https://igenex.com/the-igenex-advantage/ The western blot test can miss Lyme.

Here is a link to ILADS (International Lyme Disease Association). https://www.ilads.org/patient-care/ilads-treatment-guidelines/ . You can also use that website to find Lyme expert doctors.

Liked by Leonard

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First off I’m so sorry for your situation. We are still searching for answers for my son. His was resulting from a surgery gone wrong. I’m going to sound ridiculous to you, but the only thing that helped my sons episodes was CBD and medical marijuana. I was fortunate enough to have found a dr when every other one sent us towards the psych side of meds and hospitization. Which is so frustrating as a parent. Our doctor is in integrated medicine, she prescribed the medicinal marijuana and we researched thoroughly the CBD oil. Stanley Brothers is the one we trusted and have had miraculous results. We live in Syracuse NY. We went to NYC and they started Botox injections which gave my son relief for short periods. For long term this is not what is recommended. Botox will end up killing the muscles involved but for short term it is a miracle. With trigger point injections on top of the Botox he was able to stabilize. We went to Boston Shoulder next top dr and founder had no idea what to do. Have been at Strong Neurological for the past year and they have him on Mexiletine, it is a cardiac drug but also used for seizures. Works great. But make sure to take the stomach meds like a Prilosec or another. Ask for physical rehab dr to confer, they think outside of the box. Or integrated med dr. They don’t just go from what they have learned in a book, and actually listen to the patient. CBD saved my sons life, med marijuana keeps him in check with the Mexiletine. Do not hesitate to ask for someone outside of the ICU, we’ve been there, for a month and no one could figure it out and told us psych was needed, bc they couldn’t figure it out. Child Protective was called on us also, bc they couldn’t figure it out. Now after almost 4 yrs MRIs prove a brachial plexus injury from surgery. And with the use of CBD and med marijuana he has not had a serious episode in over a year since we started this. Stay strong it is a long road. Listen and believe your patient. And research. Do not stop even when your tears are dry and heart is exhausted. There is an answer somewhere. There is a dr who will try one more thing. I will be praying for you.

Liked by Leonard

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Hi, @tcr0315 – wanted to touch base and see how things are going for your daughter? Also wondering if the dentist who put in the filling had any thoughts on her symptoms?

Liked by Leonard

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Other than the touching of a nerve that can cause things to happen. I had the tooth removed along with the wisdom teeth. This is a mystery and entire mystery. Doctors gave her Prozac but I do t believe she is having a mental issue. I just want the seizures to stop and she get back to living

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@tcr0315

Other than the touching of a nerve that can cause things to happen. I had the tooth removed along with the wisdom teeth. This is a mystery and entire mystery. Doctors gave her Prozac but I do t believe she is having a mental issue. I just want the seizures to stop and she get back to living

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@tcr0315
Hello,
Are you planning on making arrangements to see a maxillofacial surgeon? Did you daughters infection concern her dentist or other doctors? Has she seen a Neurologist? Who put her on Prozac? Has that changed, improved or made worse the seizures either in severity or the frequency? I see she had an EEG and MRI? In Epilepsy a normal 30 minute EEG is very common as are normal MRI’s. Psychogenic episodes are not seizures, they are not caused by abnormal electrical discharges in the brain, however they can mimic one and they can be very difficult to differentiate. To get a definitive diagnosis between Epilepsy vs Psychogenic Non Epileptic Seizure (PNES) she needs to be evaluated in an
Epilepsy Monitoring Center with Video Electroencephalography (VEEG.) This may take 1-10 days. What are the doctors reasons why these seizures may be PNES? Are her eyes open or closed during the seizure/event? One indication the PNES diagnosis may be correct is the long duration of the seizures. Do they all last 45 or so minutes. Psychogenic episodes can have a Psychological or Physical or cause. The brain shuts down in order to cope with the stress in PNES. Is she depressed, stressed or have anxiety?
Blessings,
Jake

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