My CIDP log Going Solo without CIDP drugs: CIDP life with seemingly stymied Canadian Doctors! Alternative approaches to Treatments for Chronic Inflammatory Demyelinating Polyneuropathy + life-threatening "Mini-Seizures" on Oxcarbazepine :

From February 2021 I have had to abandon the main available CIDP drug treatments, yet since then nerve conduction studies results indicate that my CIDP is stable. However, I have developed some neurological symptoms which are equal or maybe more life-threatening than my CIDP. My situation 2022 has got me increasingly thinking that I somehow have central nervous system involvement (with CIDP)†.

 

Summary Transition to Solo-Life without CIDP Drugs Starting February 18, 2021 - through 2022


v My CIDP with life-threatening Eyeball-centered "Mini-Seizures" or mind-brain blank-outs October 28, 2021 until now late 2022:

» February 18, 2021: I am off all drugs, and still awaiting my Anti-Mag test result - right now NO TREATMENT for my CIDP!

» March 03, 2021: I tested negative for Anti-Mag: Had it been positive I would have alternative treatment option. Surprisingly I feel okay being off all drugs - maybe my body alone can fix my CIDP?

» October 11, 2021: No such luck for self-fixing. I have spiraled downwards with escalating head issues especially mini-seizures. I am using the term "mini-seizures" as I cannot find any other appropriate term for the episode events I experience. I now consider my situation life-threatening and am seeking medical advice in Portugal firstly from an expert in autoimmune diseases and secondly from a doctor specializing in head issues including cerebral vascular diseases and neuroimmunology.

» October 28, 2021: The specialist in head issues prescribes 300 mg daily Oxcarbazepine (typically used to treat seizure disorders). I have agreed to try the drug for three weeks and November 17, 2021 started with a smaller dose for one week.

» November 20, 2021: I feel relieved that at least I am trying a potential treatment for my head issues but it is early days as to knowing whether it will help

» January 25, 2022: My Portugal doctor mid-January 2022 doubled my Oxcarbazepine to 600 mg daily as the drug seems to be having quite a positive effect substantially reducing the pain in my eyes and very surprisingly strongly suppressing the wild fasciculations not just in my head but also my legs! Also the painful mind waves prior to sleep have been largely eliminated! But the "mini-seizures" are still occurring I believe at about the same frequency, but I am hopeful they will reduce in number over the next month. I await the results of an EEG Electroencephalogram (a recording of brain activity test).

» January 27, 2022: The EEG result came back clear, meaning (apparently) that I am unlikely to be having conventional seizures. However, I am worried about the fact I was already taking the ant-seizure drug Oxcarbazepine so wonder what the EEG result really repents.

» February 12, 2022: After a few weeks of the Oxcarbazepine 600 mg daily dose my "mini-seizures" have greatly dissipated and fasciculations strikingly reduced in my eyes, face and also astonishingly in my legs.

» March 07, 2022: Now most of the mini-seizures have dissipated but the one remaining is highly troubling. When I am resting lying down, eyes closed, my mind/brain blanks-out. NOTHING THERE. However, I seem to be conscious as I instinctively shake (an unconscious reflex perhaps) my mind/brain revives astonished. The world appears brighter and clearer than before - but soon a new headache begins and I experience a horrible day and night often with repeat blank-outs.

» March O7, 2022: I am convinced that my current problems are very much eye-centered and fasciculations as secondary but important. I have had eye (fasciculation} issues even before my CIDP diagnosis March 2009! My CIDP doctors nevertheless say that they are not caused by CIDP but I fear she may be wrong.

» March O7, 2022: I am concerned that these mind-brain blank-outs are life threatening and one day I will not recover and enter a deep mental state of locked-in mind/brain blank (perhaps end-up with locked-in syndrome pseudocoma in a vegetative state). I am seeing my Portuguese doctor soon and will seek his advice.

» March 17, 2022: My Portuguese doctor rejects risk of locked-in syndrome but after blood test reduced my oxcarbazepine dose to 300 mg per day as I had developed a low blood sodium level of 127 mmol/L. [norm is136-145] and precipitous fall from my October 09, 2021 of 141 mmol/L]. Naturally I now worry that my mini-seizures will return

» March 29, 2022: Full night of mini-seizures - more that 30 - until I stopped trying to sleep though fear I was doing permanent damage to my brain. The seizures completely blocked my brain from transcending from relaxed to sleep within about one-minute of closing my eyes

» April 10, 2022: Blood sodium returns to normal. I am awaiting for Canadian (belated) EEG, MRI and neurological consultation respecting my "mini-seizures"

» April 25, 2022: I am relieved that my Canadian neurologist says I can go 145 mg per day of oxcarbazepine but I am not much closer to getting an explanation for my mini-seizures. My blood sodium at 132 mmol/L and I should only be concerned if it falls to 120 mmol/L. I have been refereed to a euro-ophthalmologists.

» August 22, 2022: Eye tests completed - Optical coherence tomography (OCT), Macular Degeneration Mac Amsler Test, Optic Nerve Hypoplasia (ONH), Humphrey Visual Field. The euro-ophthalmologists says there is no neurological issues with my eyes and I should see a retina specialist. (October 08, 2022 I am still awaiting for a copy of the clinical note!) I am not convinced by the verbal statements!

 

 

Also see: Summary IgG Infusions Log Pre-February 2021

 

† See reference in "My Message to Doctors" on September 2022 article "CNS Involvement in Chronic Inflammatory Demyelinating Polyneuropathy -Subtle Retinal Changes in Optical Coherence Tomography"

Concepts for Prednisone treatment for CIDP and IgG adverse reaction side-effects: Prednisone investigated Chronic Inflammatory Demyelinating Polyneuropathy CIDP IgG skin rash IgG sudden scalp hair loss on head IVIG turn bald CIDP Patient transition from IgG immunoglobulin to Prednisone stop IVIG IgG versus prednisone for CIDP pedagogic hallucination