Complex partial seizures and small fiber neuropathy

Posted by julbpat @julbpat, Apr 25, 2023

I am 62 years old, and had complex partial seizures for about 25 years. They were very distinct, with aura, repetitive image, brief “paralysis” ( unable to move), minimal post ictal phase. They were controlled by Tegretol. I was seizure free for several years, and stopped Tegretol in 2014.
In 2015 I developed pain in my feet, overall fatigue. That progressed to length-dependent small fiber poly neuropathy. I am back on Tegretol.
My question is about seizures. My occasional dizzy spells have developed a regular pattern. When they occur, I am dizzy, feel pressure in my head, and bowel pressure. Ultimately I feel overwhelming fatigue, and MUST lie down. As I rest, I have random twitching in my extremities. After this process, I often feel “bad” the rest of the morning.
These only happen in the morning, about two hours after I get up.
I had an EEG at that time last week, and it was normal. I didn’t have dizziness that morning, but I didn’t feel great, having to lie on my back for 20 minutes, with an uncomfortable bolster under my tender neck. I tend to hurt everywhere with the SFN.
I say it’s seizures, my neurologist disagrees. Thoughts?

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Actually that high cbd is illegal on the Federal level in the US it can send you to jail with a fine and get confiscated. Even though it might be legal in the state you are visiting if you get pulled over by a federal cop you go to jail since it is Federally illegal it does not matter if the individual state has legalized it or not. Marijuana still illegal but you are allowed 0.03% hemp oil. Since, the airport falls under Ferderal law anything brought in can send you to jail. Be very careful.

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@artemis1886

Actually that high cbd is illegal on the Federal level in the US it can send you to jail with a fine and get confiscated. Even though it might be legal in the state you are visiting if you get pulled over by a federal cop you go to jail since it is Federally illegal it does not matter if the individual state has legalized it or not. Marijuana still illegal but you are allowed 0.03% hemp oil. Since, the airport falls under Ferderal law anything brought in can send you to jail. Be very careful.

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Good Morning @artemis1886
Thank you for the information. I see I need to be very careful when traveling to the States. I will get in contact with the American consulate here in São Paulo to get more details. I hope I can still visit the States and my friends and family over there.
Bavaria is a very nice state in Germany. Part of my family lives in Munich, a city that I love. I have been there in 2019 and it has grown too much, unfortunately. It is also no longer as safe as it once was. My cousin has told me that she no longer walks alone in the evening in the city center (Marienplatz and surroundings) anymore. The other part of my family is in Schwabenland. My grandmother lived in a small city close to the Bodensee. Very nice region you have certainly visited being in Kaiserslautern. The people in the Southern part of Germany are more open than in the Northern part of the country. I hope you have been having a nice experience and people are being nice to you. If I can be of any help in this respect, you can also count on me.
Have a nice day!
Chris (Santosha)

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I was told by Dr Anne Oaklander (google her she has some lectures on YouTube) that by dizziness is from small fiber neuropathy. That is what starts the falling and loosing balance.
Dr Oaklander said I needed to see a neuromuscular neurologist, neuromuscular physical therapist, immunologist and a rheumatologist.
I live in Texas and went to Boston to see her. I saw my neurologist today and this is what I learned neurology is starting to become specialized like orthopedics. (Some doctors see knees some see hips others see shoulders so forth) We need to see neuromuscular neurologist because they treat neuropathy. I did not quit understand the need to see a neuromuscular neurologist until today. I have been wanting to start IVIG therapy I was on it from age 10-18. I fell off my parents insurance.
He referred me to a neuromuscular neurologist within his practice so I can start IVIG therapy. They believe it will be successful since I was on it previously.

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@artemis1886

I was told by Dr Anne Oaklander (google her she has some lectures on YouTube) that by dizziness is from small fiber neuropathy. That is what starts the falling and loosing balance.
Dr Oaklander said I needed to see a neuromuscular neurologist, neuromuscular physical therapist, immunologist and a rheumatologist.
I live in Texas and went to Boston to see her. I saw my neurologist today and this is what I learned neurology is starting to become specialized like orthopedics. (Some doctors see knees some see hips others see shoulders so forth) We need to see neuromuscular neurologist because they treat neuropathy. I did not quit understand the need to see a neuromuscular neurologist until today. I have been wanting to start IVIG therapy I was on it from age 10-18. I fell off my parents insurance.
He referred me to a neuromuscular neurologist within his practice so I can start IVIG therapy. They believe it will be successful since I was on it previously.

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Very interesting!

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@artemis1886

Does anyone with neuropathy have seizures? If so how do you sleep and cope with the pain along with the stress? I have discovered when I do not sleep because of the pain and stress my seizures get worse. I end up injuring myself due to falling. Which happens quite often.
I wake up at 2am every night and can’t get back to sleep. Sometimes I get up and drink hot chocolate and can go back to sleep.

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Yes, that is the case. Lack of sleep causes seizures. I have Valtoco 10 mgs or Nyzline nasal sprays since I am allergic to all seizure medications. I also have diazepam pills when I can’t get where I can’t sleep. Today is day four of only living on four hours of sleep. There is one other thing that sometimes works and when I wake up at 2 am I replay it
No caffeine after 12:00 pm
No alcohol disturbs sleep
No water after7 pm
(where u will not go to the bathroom at night
No reading electronics
10 mgs extended release melatonin
Hot chocolate has caffeine
I drink a herbal tea mandarin orange bigalow makes me sleepy
or there is a tea called sleepy that’s good
Guardian Angel Meditation
you might find something you like better Attached below
Someone on this website sent it to me. You are probably thinking I am nuts but what it does is take your mind off of your feet because you are focusing on something else.
I also have a pain cream compounded by the pharmacist with a doctors prescription
Prescription pain cream
2% Bacflofen
6% gabapentin
10% ketamine HCL
2% cyclobenzaprine
10% Diclofenac Sodium
2.5% tetracaine HCL
25% propylene
10% lipoderm

Have someone rub into feet and put socks on over them I use oversized socks

My problem is weather raining in Texas which makes it worse husbands in Germany and can’t rub the cream into my feet. My neurologist told me to use Valtoco nasal spray tonight to get some sleep where I will not have a seizure it’s one of my rescue meds for seizures. I was in his office today. I don’t like using either one they burn and makes me cry.

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This is the other one that was sent to me
It did not send the link
Yoga Nidra Sleep Meditation, (Guided Sleep Hypnosis) Progressive 61 Point Fall Asleep Fast
That’s what it is called

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Hi Artemis, Very Good Morning to You
For sure you are not nuts otherwise, I am also 😂, as I do explore natural medicine and other alternatives.
Talking first about your neuropathy. Recently we changed my mother's neurologist (she has Alzheimer's). This neurologist is also a neuromuscular neurologist and has observed that my mother fell because of her monoclonal gammopathy. She has lost some sensibility in her feet with the gammopathy.
Lack of sleep is one of the major triggers of seizures (in case you are interested in this subject the book of Andrews-Reiter explores it a lot). This is why it is so important for us with epilepsy to sleep well. I practice Yoga Nidra daily after lunch through an app and I have also lessons. It has helped me a lot. I had severe sleeping problems back in 2018-2021 and also took some medicine to sleep (Alprazolam). One has to take much care with those medications, they might help at the beginning, but later.... And then I discovered Yoga Nidra. At those times I had those sleeping problems, I used to practice Yoga Nidra (through the app Insight Timer) 2 or even 3 times a day to compensate for my little sleep at night. It is said that 30 minutes of yoga nidra can correspond to up to 3 hours of deep sleep. In the post "Lamictal Rash" I have shared some experiences. @hopefullibrarian has also shared her experiences with Yoga Nidra. According to my teacher, yoga nidra should not be practiced before sleep as it might interfere with the night's sleep. I do also try to follow some rules to help me with my sleep like the ones you mentioned. Lots of things do contain caffeine, such as Coke and other soft drinks. Watching TV before sleep can also affect sleep (it has the same blue light as electronics). Eating light food in the evening and having an early dinner can also be helpful.
As I mentioned in previous posts, AEDSs did also not work for me. Have you tried any diet? Just by taking gluten out of my diet (a lot easier than I had imagined), I have reduced my seizures by 60%. I then went on an anti-inflammatory diet with low carb and low sugar and can feel the benefits. Give it a try!
Here is the link to the Andrews-Reiter book:
https://www.amazon.com/Taking-Control-Your-Seizures-Treatments/dp/019933501X
Have a nice day!
Chris (Santosha)

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I should mention that my original post was quite a while ago, and I never updated it. It was determined that my complex partial seizures had not returned. My dizzy spells are a result of small fiber neuropathy. I was reacting to the dizziness in a particular way to try to control it. This is called Persistent Perceptual Postural Dizziness (PPPD). I had PT/OT for visual control, and that actually helped. The dizzy spells are much less frequent, and I can usually head them off by using some of the exercises I used in PT.

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