My CIDP log Going Solo without CIDP drugs: CIDP life with seemingly stymied Canadian Doctors! Chronic Inflammatory Demyelinating Polyneuropathy + life-threatening "Mini-Seizures" on Oxcarbazepine / Arrhythmia / Eagle Syndrome vs CIDP?:

From February 2021 I have had to abandon the main available CIDP drug treatments like immunoglobulin IgG, 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 CNS / vagus nerve involvement (with CIDP)†.

 

Summary Transition to Solo-Life without CIDP Drugs Starting February 18, 2021 - through mid 2024

v My CIDP 2021: with life-threatening Eyeball-centered "Mini-Seizures" or mind-brain blank-outs:

» 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

v My CIDP 2022: » 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 eyeballs, 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 eyeball (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 referred 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 AT ALL convinced by the verbal statements!

» December 13, 2022: After 20 months off all CIDP drugs, I also had my last nerve conduction study showing I am stable with the doctor saying I am "doing really well". I am officially discharged from the CIDP program.

» December 13, 2022: My end of 2022 assessment is that my condition seems to have morphed into the eyeball-face issue I believe very much related to the same condition my doctors call CIDP, although of course they likely disagree, Most of my CIDP symptoms remain, with lower impact than before: leg pain being the main residual.

v My CIDP 2023: » January 29, 2023: Entering 2023 I am far from feeling "doing really well" (my primary CIDP doctor's words). By mid-January I had a very disturbing turn for the worst when I had two critical breathing mini-seizures. In the last two weeks I have also had two instances of sudden onset of rapid pulse (180 - over 200 beats per minute). I have purchased pulse and breathing monitors* to try and record the events for my doctors..

» February 18, 2023 I recorded pulse rates of over 184 bpm lasting over an hour using my Kardia device: Including Atrial Fibrillation and five cases of "unclassified" patterns. My Canadian family doctor warns of possibility of POTS (postural tachycardia syndrome) which is sometimes associated with CIDP. Meantime I decided to cut Oxcarbazepine dose to just 130 mg as the "Mini-Seizures" have now mostly resolve.

» April 03, 2023: The pulse surges have become critical and definitely life-threatening. a cardiologist in Portugal suspects Atrial Fibrillation and March 30, 2023 prescribes Bisoprolol 5 mg/day - a beta blocker medicine used to treat heart failure. I am doing a week-long holter heart monitor now to gather more data on my heart. The evidence is mounting that I do indeed have autonomic nerve system / vagus nerve involvement with my CIDP.

» June 01, 2023: In line with my own policy to only take absolutely necessary drugs, I decided to stop taking Oxcarbazepine. I also stopped the Rosuvastatin Calcium prescribed by my cardiologist as I found it aggravated my CIDP symptoms. I stopped Entresto too as it inflamed my skin in my mouth and gave me stomach pains. As per the cardio doctor advice I am continuing to take a beta blocker Metoprolol Tartrate 100 mg/day for my pulse surges. So far the beta blockers have been effective in preventing the dangerous pulse surges and I have found the drug quite compatible with my CIDP symptoms.

v My CIDP 2024 with astonishing diagnosis of Eagle Syndrome: » March 06, 2024: Off all CIDP related drugs for a third year; only take 75 mg/day of Metoprolol for arrhythmia. My top ranked CIDP symptom is facial fasciculations, facial pain and dry mouth. My eyes "bubble like boiling water", especially when closed to sleep, as typical with other bodily CIDP fasciculations. I have found wearing a hoody at night the best solution and now I am able to manage the situation.

»March 06, 2024: I have no diagnosis for my facial pain but I am starting to wonder if the immunoglobulin IgG infusions I took for a decade is a factor. I think this because I had facial, neck and lips sores every time I infused. Could I have adhesions from tissue repair that interfered with my cranial nerves?

» July 16, 2024: a potential breakthrough on facial pain as I have a most likely diagnosis of "Eagle Syndrome", believe it or not after referral by my dentist!. Eagle's syndrome is a condition associated with the elongation of the styloid process or calcification of the stylohyoid ligament. Eagle Syndrome (also called Stylohoid Syndrome) is caused by an elongated styloid process and/or calcified stylohyoid ligaments and could explain pretty much all my eye/head/face issues as it effects the cranial / vagus nerves and carotid arteries. The vagus is the longest nerve of the autonomic nervous system in the human body and comprises both sensory and motor fibers. I am undergoing physiotherapy by a specialized head physiotherapist.

» August 02, 2024: I cancel the physiotherapy for Eagle Syndrome as I judge it counterproductive. After three weeks of physiotherapy I have increased pain and significantly more worrisome facial events such as nerve strikes. Maybe my CIDP cannot tolerate the movement. One such strike, August 04, 2024, causing severe pain in my left cheek then eye for several seconds.

» August 13, 2024: Doctor confirms I have an elongated styloid process and calcified stylohyoid ligament. See panoramic x-ray showing my elongated styloid process Laser treatment for the Eagle Syndrome ES is suggested but I on reflection will reject the laser for pain approach as I suspect it will worsen my CIDP. The ES doctor himself question how much of my head & face symptoms are caused by Eagle Syndrome versus my CIDP?

» September 03, 2024: I decided to resume taking oxcarbazepine at very low dose of 100 mg per day, as I discovered it is also useful in the treatment of Eagle Syndrome. (I last took oxcarbazepine in October 2021 for a year to treat my mini-seizures), The drug also seemed then to dampen my fasciculations that act to amplify pain. BIG QUESTION: Does Eagle Syndrome cause mini-seizures, arrhythmia, and both eyeball fasciculations, fasciculations generally and most of my facial pain. And what about the really weird spontaneous jaw-snapping I logged on January 12, 2021: How will we determine CIDP versus Eagle Syndrome / elongated styloid causation?.

» September 12, 2024: I feel oxcarbazepine is helping even at the very low dose. In February 2022 I was taking 600 mg per day for my mini-seizures. I decide to increase the dose from 150 mg to 225 mg per day.

» October 02, 2024: An appointment with a key nurologist is fruitless when he tells me he did not know what Eagle Syndrome / elongated Stylooid is! This is even though some of the symptoms he investigated could be caused by the syndrome. I am beginning to think I have a big problem in getting the help I urgently need (in Canada).

 

Also see: Summary IgG Infusions Log Pre-February 2021

* Acquired early February 2023 Kardia and Oura Gen3 ring, heart and breathing monitors. Kardia determinations samples for me: Unclassified 184 bpm, Atrial Fibrillation 122 -155 bpm, Tachycardia 131 bpm,Sinus Rhythm with Premature Ventricular Contractions PVC 93 bpm, Sinus Rhyhym with wide QRS wave 81 bpm, Sinus Rhythm with Supra ventricular Ectopy SVE 66 bpm

† 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 Going Solo without CIDP drugs 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 vagus nerve (VN), the principal component of the parasympathetic nervous system