LC 4 1/2 years - 9/2020…
My prominent symptoms have moved up and down the scale.
For the first 2 years or so, my 3 most consistently severe were Brain Fog, Dizziness/Imbalance, and Cardio-Pulmonary (Shortness of Breath, Chest Pressure/Pain, Racing/Palpatations, Heart Rate Spikes (up to 200bpm) and Dips (down to 40).
Cardio-Pulmonary symptoms have been successfully medically treated in the past couple years. Although I still have some degree of all my symptoms, most have improved. Currently I would say the 3 most worst are Brain Fog, Dizziness/Imbalance, and Fatigue. The Brain Fog, and Dizziness/Imbalance is what got me approved for Federal SSDI Disability.
LC 4 1/2 years - 9/2020…
My prominent symptoms have moved up and down the scale.
For the first 2 years or so, my 3 most consistently severe were Brain Fog, Dizziness/Imbalance, and Cardio-Pulmonary (Shortness of Breath, Chest Pressure/Pain, Racing/Palpatations, Heart Rate Spikes (up to 200bpm) and Dips (down to 40).
Cardio-Pulmonary symptoms have been successfully medically treated in the past couple years. Although I still have some degree of all my symptoms, most have improved. Currently I would say the 3 most worst are Brain Fog, Dizziness/Imbalance, and Fatigue. The Brain Fog, and Dizziness/Imbalance is what got me approved for Federal SSDI Disability.
Hey @bigj,
When asked the same question, I put together a list of journal entries describing brain fog as I’ve gone through LC.
They follow. (Repurposed because copy & paste is so much easier and quicker.)
Brain Fog:
Journal Entries to give you my own words as I described them along the way…
10/4/2020
Sunday was one of my worst days. Struggled to breathe all day. Yesterday was better than Sunday. Brain in a fog - very hard to focus. Still in bed now, head swimming, chest pressure/pain, yada, yada...
10/29/2020
I’m really thinking the “brain fog” thing is a real thing. My therapist said that last week she didn’t want to freak me out, but she noticed I was missing words when I was talking to her. She knew the thoughts were there, but when I tried to put them into sentences, I missed saying some words.
3/3/2021
Traffic was slow-going down State St/HWY 44 to Middleton/I-84. So slow, I was sincerely surprised when I got to Middleton thinking I already had driven through it. :O
8/25/2021 [My definition]
“Brain Fog” - inability to focus and stay on point with regular tasks of daily living. (I am a writer and haven’t been able to write anything new in almost a year [now 4 1/2] and sometimes it can take an hour or two just to cognitively read through an article…)
12/2/2021
Brain fog has affected my ability to accurately process bookkeeping functions for our e-commerce business (selling hobby greenhouse kits). My errors have cost us at least $10,000 since symptom onset.
3/4/2022
The worst part for me with the brain fog (only one of my many persistent symptoms), is that in the moment I think I’m doing [the task] well and then later find I missed steps in the process. IE: Toasting air because I forgot to actually put the bread into the toaster before turning it on; forgetting to process a customer’s payment - to the tune of $3000+ - before shipping out product. Sometimes discovering the error a year later and then having to go through legal channels to collect… things like that. Very frustrating for someone with OCD tendencies and a stickler for details! I feel I’m letting people down, including myself.
5/8/2024… (I know this is an entry from a year ago, but I can honestly say, “Lather, Rinse, Repeat”.)
Brain Fog has led me to continually make costly errors in our business operations. While I have seen great improvement in the majority of the cardiopulmonary symptoms, Brain Fog remains the most debilitating. Yesterday, I couldn't even remember what 9 x 7 equals nor the process to figure it out. It was the unlock to parental controls for YouTubeKids :/ Everyone advises me to "write things down so you won't forget". The problem is, in the time it would take to find something to write "it" down on, "it" is long forgotten. Literally seconds from thought in and out. My husband may ask me what I'm doing, and my response is often, "I'm wandering". I can't count the times in a day I'm staring into the refrigerator or cabinet trying to figure out why. I eventually do, but the process takes up so much time, my days are far from efficient or productive. I struggle to have an intelligent conversation because I'm always searching for the proper words. IE:"You know, that actor who was in that movie about, you know. He was also in that movie with that actress, you know, who was in that show..." And so it goes. Every time I turn around another week [month, year] has passed, in which I rarely knew what day it was. I have absolutely no concept of time. In general, thinking is exhausting.
*NOTE: Our ecommerce business of 20+ years folded mainly due to supply and freight cost issues. Covid was very harsh. I couldn’t have continued much longer anyway. I was not at all confident in my [bookkeeping] abilities any longer. The Brain Fog, comprension and focus issues, and fatigue was making it impossible. Besides the guaranteed mistakes, EVERYTHING I do takes sooooo long to accomplish. Business gradually wound down between 2022-2024. Last order was processed June 2024. Not soon enough for me, but doable.
Anyway, hopefully that gives you the answer to your question. I’m happy to answer more.
LC 4 1/2 years - 9/2020…
My prominent symptoms have moved up and down the scale.
For the first 2 years or so, my 3 most consistently severe were Brain Fog, Dizziness/Imbalance, and Cardio-Pulmonary (Shortness of Breath, Chest Pressure/Pain, Racing/Palpatations, Heart Rate Spikes (up to 200bpm) and Dips (down to 40).
Cardio-Pulmonary symptoms have been successfully medically treated in the past couple years. Although I still have some degree of all my symptoms, most have improved. Currently I would say the 3 most worst are Brain Fog, Dizziness/Imbalance, and Fatigue. The Brain Fog, and Dizziness/Imbalance is what got me approved for Federal SSDI Disability.
Hey @bigj,
When asked the same question, I put together a list of journal entries describing brain fog as I’ve gone through LC.
They follow. (Repurposed because copy & paste is so much easier and quicker.)
Brain Fog:
Journal Entries to give you my own words as I described them along the way…
10/4/2020
Sunday was one of my worst days. Struggled to breathe all day. Yesterday was better than Sunday. Brain in a fog - very hard to focus. Still in bed now, head swimming, chest pressure/pain, yada, yada...
10/29/2020
I’m really thinking the “brain fog” thing is a real thing. My therapist said that last week she didn’t want to freak me out, but she noticed I was missing words when I was talking to her. She knew the thoughts were there, but when I tried to put them into sentences, I missed saying some words.
3/3/2021
Traffic was slow-going down State St/HWY 44 to Middleton/I-84. So slow, I was sincerely surprised when I got to Middleton thinking I already had driven through it. :O
8/25/2021 [My definition]
“Brain Fog” - inability to focus and stay on point with regular tasks of daily living. (I am a writer and haven’t been able to write anything new in almost a year [now 4 1/2] and sometimes it can take an hour or two just to cognitively read through an article…)
12/2/2021
Brain fog has affected my ability to accurately process bookkeeping functions for our e-commerce business (selling hobby greenhouse kits). My errors have cost us at least $10,000 since symptom onset.
3/4/2022
The worst part for me with the brain fog (only one of my many persistent symptoms), is that in the moment I think I’m doing [the task] well and then later find I missed steps in the process. IE: Toasting air because I forgot to actually put the bread into the toaster before turning it on; forgetting to process a customer’s payment - to the tune of $3000+ - before shipping out product. Sometimes discovering the error a year later and then having to go through legal channels to collect… things like that. Very frustrating for someone with OCD tendencies and a stickler for details! I feel I’m letting people down, including myself.
5/8/2024… (I know this is an entry from a year ago, but I can honestly say, “Lather, Rinse, Repeat”.)
Brain Fog has led me to continually make costly errors in our business operations. While I have seen great improvement in the majority of the cardiopulmonary symptoms, Brain Fog remains the most debilitating. Yesterday, I couldn't even remember what 9 x 7 equals nor the process to figure it out. It was the unlock to parental controls for YouTubeKids :/ Everyone advises me to "write things down so you won't forget". The problem is, in the time it would take to find something to write "it" down on, "it" is long forgotten. Literally seconds from thought in and out. My husband may ask me what I'm doing, and my response is often, "I'm wandering". I can't count the times in a day I'm staring into the refrigerator or cabinet trying to figure out why. I eventually do, but the process takes up so much time, my days are far from efficient or productive. I struggle to have an intelligent conversation because I'm always searching for the proper words. IE:"You know, that actor who was in that movie about, you know. He was also in that movie with that actress, you know, who was in that show..." And so it goes. Every time I turn around another week [month, year] has passed, in which I rarely knew what day it was. I have absolutely no concept of time. In general, thinking is exhausting.
*NOTE: Our ecommerce business of 20+ years folded mainly due to supply and freight cost issues. Covid was very harsh. I couldn’t have continued much longer anyway. I was not at all confident in my [bookkeeping] abilities any longer. The Brain Fog, comprension and focus issues, and fatigue was making it impossible. Besides the guaranteed mistakes, EVERYTHING I do takes sooooo long to accomplish. Business gradually wound down between 2022-2024. Last order was processed June 2024. Not soon enough for me, but doable.
Anyway, hopefully that gives you the answer to your question. I’m happy to answer more.
Hey @bigj,
When asked the same question, I put together a list of journal entries describing brain fog as I’ve gone through LC.
They follow. (Repurposed because copy & paste is so much easier and quicker.)
Brain Fog:
Journal Entries to give you my own words as I described them along the way…
10/4/2020
Sunday was one of my worst days. Struggled to breathe all day. Yesterday was better than Sunday. Brain in a fog - very hard to focus. Still in bed now, head swimming, chest pressure/pain, yada, yada...
10/29/2020
I’m really thinking the “brain fog” thing is a real thing. My therapist said that last week she didn’t want to freak me out, but she noticed I was missing words when I was talking to her. She knew the thoughts were there, but when I tried to put them into sentences, I missed saying some words.
3/3/2021
Traffic was slow-going down State St/HWY 44 to Middleton/I-84. So slow, I was sincerely surprised when I got to Middleton thinking I already had driven through it. :O
8/25/2021 [My definition]
“Brain Fog” - inability to focus and stay on point with regular tasks of daily living. (I am a writer and haven’t been able to write anything new in almost a year [now 4 1/2] and sometimes it can take an hour or two just to cognitively read through an article…)
12/2/2021
Brain fog has affected my ability to accurately process bookkeeping functions for our e-commerce business (selling hobby greenhouse kits). My errors have cost us at least $10,000 since symptom onset.
3/4/2022
The worst part for me with the brain fog (only one of my many persistent symptoms), is that in the moment I think I’m doing [the task] well and then later find I missed steps in the process. IE: Toasting air because I forgot to actually put the bread into the toaster before turning it on; forgetting to process a customer’s payment - to the tune of $3000+ - before shipping out product. Sometimes discovering the error a year later and then having to go through legal channels to collect… things like that. Very frustrating for someone with OCD tendencies and a stickler for details! I feel I’m letting people down, including myself.
5/8/2024… (I know this is an entry from a year ago, but I can honestly say, “Lather, Rinse, Repeat”.)
Brain Fog has led me to continually make costly errors in our business operations. While I have seen great improvement in the majority of the cardiopulmonary symptoms, Brain Fog remains the most debilitating. Yesterday, I couldn't even remember what 9 x 7 equals nor the process to figure it out. It was the unlock to parental controls for YouTubeKids :/ Everyone advises me to "write things down so you won't forget". The problem is, in the time it would take to find something to write "it" down on, "it" is long forgotten. Literally seconds from thought in and out. My husband may ask me what I'm doing, and my response is often, "I'm wandering". I can't count the times in a day I'm staring into the refrigerator or cabinet trying to figure out why. I eventually do, but the process takes up so much time, my days are far from efficient or productive. I struggle to have an intelligent conversation because I'm always searching for the proper words. IE:"You know, that actor who was in that movie about, you know. He was also in that movie with that actress, you know, who was in that show..." And so it goes. Every time I turn around another week [month, year] has passed, in which I rarely knew what day it was. I have absolutely no concept of time. In general, thinking is exhausting.
*NOTE: Our ecommerce business of 20+ years folded mainly due to supply and freight cost issues. Covid was very harsh. I couldn’t have continued much longer anyway. I was not at all confident in my [bookkeeping] abilities any longer. The Brain Fog, comprension and focus issues, and fatigue was making it impossible. Besides the guaranteed mistakes, EVERYTHING I do takes sooooo long to accomplish. Business gradually wound down between 2022-2024. Last order was processed June 2024. Not soon enough for me, but doable.
Anyway, hopefully that gives you the answer to your question. I’m happy to answer more.
Thank you that was great help I believe I’m on stage two of brain fog memory loss my wife lets me know. We did things two or ten years ago, special time's , graduation holidays, vacation, trips to Hawaii completely unavailable to process and remember but sometimes day later I remember bits and pieces very small bits and pieces
I think I have felt this “distortion” in the head before when I have been “sick” with other things, and I couldn’t put a name to it, either. The best I could explain it was that I felt like I had restless leg syndrome in my head, but if you’ve never had restless leg, it’s hard to understand THAT. It’s almost like someone is holding a feather right above your scalp and has every intention of tickling you with that feather … in about 4?months! Very weird sensation!
I have restless leg but is simple to over come for me , just put a bar of ivory soap under your bottom sheet, it may take 2 or3 weeks to work ,I know it works.
I have 1mg, .5 mg, .25 mg. and .1 mg. compounded. I have tried every dose but the .1 mg. The doses I tried made me very tired. I took each one at 4:00PM and 7:00AM.
No other side effects. Vostie, could you tell me what you dose you started with and when do you take it. Did you experience any sleepiness? Thanks.
The first week or or two, the LDN made me sleepy no matter what time of day I took it even starting at 1.5 mg. After that first week, the sleepiness went away for me and then I had extreme insomnia if I took it later than 11 am. I now take it first thing in the morning and hold the liquid in my mouth about 10 minutes for some sublingual absorption. I have learned online that LDN temporarily blocks opioid receptors for about two hours and then the body compensates by producing more endorphins and upregulating opioid receptor production and sensitivity. It is believed that this is why LDN causes pain relief, mood enhancement, and a reduction in inflammation.
Thank you that was great help I believe I’m on stage two of brain fog memory loss my wife lets me know. We did things two or ten years ago, special time's , graduation holidays, vacation, trips to Hawaii completely unavailable to process and remember but sometimes day later I remember bits and pieces very small bits and pieces
@bigj,
I'm glad my information was helpful. All our stories are a little bit different, making it so difficult to generalize the LC disease into a useable definition and diagnosis for effective treatments.
All of our testing that comes back "normal" at least does rule out the big bad's. If you haven't already, I would suggest having comprehensive cognitive testing, just to make sure your brain fog isn't being caused by something other than LC.
During my LC journey, my mother was in last stages of dementia, so of course I was concerned about the root cause of my brain fog. My doctor explained it like this, "Memories are all your mental files. With dementia, files are lost and not found. With brain fog, you still have all the files. It just takes you longer to find them."
Thank you that was great help I believe I’m on stage two of brain fog memory loss my wife lets me know. We did things two or ten years ago, special time's , graduation holidays, vacation, trips to Hawaii completely unavailable to process and remember but sometimes day later I remember bits and pieces very small bits and pieces
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LC 4 1/2 years - 9/2020…
My prominent symptoms have moved up and down the scale.
For the first 2 years or so, my 3 most consistently severe were Brain Fog, Dizziness/Imbalance, and Cardio-Pulmonary (Shortness of Breath, Chest Pressure/Pain, Racing/Palpatations, Heart Rate Spikes (up to 200bpm) and Dips (down to 40).
Cardio-Pulmonary symptoms have been successfully medically treated in the past couple years. Although I still have some degree of all my symptoms, most have improved. Currently I would say the 3 most worst are Brain Fog, Dizziness/Imbalance, and Fatigue. The Brain Fog, and Dizziness/Imbalance is what got me approved for Federal SSDI Disability.
Blessings All!
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2 ReactionsHi when you say brain fog how bad is it ?
Hey @bigj,
When asked the same question, I put together a list of journal entries describing brain fog as I’ve gone through LC.
They follow. (Repurposed because copy & paste is so much easier and quicker.)
Brain Fog:
Journal Entries to give you my own words as I described them along the way…
10/4/2020
Sunday was one of my worst days. Struggled to breathe all day. Yesterday was better than Sunday. Brain in a fog - very hard to focus. Still in bed now, head swimming, chest pressure/pain, yada, yada...
10/29/2020
I’m really thinking the “brain fog” thing is a real thing. My therapist said that last week she didn’t want to freak me out, but she noticed I was missing words when I was talking to her. She knew the thoughts were there, but when I tried to put them into sentences, I missed saying some words.
3/3/2021
Traffic was slow-going down State St/HWY 44 to Middleton/I-84. So slow, I was sincerely surprised when I got to Middleton thinking I already had driven through it. :O
8/25/2021 [My definition]
“Brain Fog” - inability to focus and stay on point with regular tasks of daily living. (I am a writer and haven’t been able to write anything new in almost a year [now 4 1/2] and sometimes it can take an hour or two just to cognitively read through an article…)
12/2/2021
Brain fog has affected my ability to accurately process bookkeeping functions for our e-commerce business (selling hobby greenhouse kits). My errors have cost us at least $10,000 since symptom onset.
3/4/2022
The worst part for me with the brain fog (only one of my many persistent symptoms), is that in the moment I think I’m doing [the task] well and then later find I missed steps in the process. IE: Toasting air because I forgot to actually put the bread into the toaster before turning it on; forgetting to process a customer’s payment - to the tune of $3000+ - before shipping out product. Sometimes discovering the error a year later and then having to go through legal channels to collect… things like that. Very frustrating for someone with OCD tendencies and a stickler for details! I feel I’m letting people down, including myself.
5/8/2024… (I know this is an entry from a year ago, but I can honestly say, “Lather, Rinse, Repeat”.)
Brain Fog has led me to continually make costly errors in our business operations. While I have seen great improvement in the majority of the cardiopulmonary symptoms, Brain Fog remains the most debilitating. Yesterday, I couldn't even remember what 9 x 7 equals nor the process to figure it out. It was the unlock to parental controls for YouTubeKids :/ Everyone advises me to "write things down so you won't forget". The problem is, in the time it would take to find something to write "it" down on, "it" is long forgotten. Literally seconds from thought in and out. My husband may ask me what I'm doing, and my response is often, "I'm wandering". I can't count the times in a day I'm staring into the refrigerator or cabinet trying to figure out why. I eventually do, but the process takes up so much time, my days are far from efficient or productive. I struggle to have an intelligent conversation because I'm always searching for the proper words. IE:"You know, that actor who was in that movie about, you know. He was also in that movie with that actress, you know, who was in that show..." And so it goes. Every time I turn around another week [month, year] has passed, in which I rarely knew what day it was. I have absolutely no concept of time. In general, thinking is exhausting.
*NOTE: Our ecommerce business of 20+ years folded mainly due to supply and freight cost issues. Covid was very harsh. I couldn’t have continued much longer anyway. I was not at all confident in my [bookkeeping] abilities any longer. The Brain Fog, comprension and focus issues, and fatigue was making it impossible. Besides the guaranteed mistakes, EVERYTHING I do takes sooooo long to accomplish. Business gradually wound down between 2022-2024. Last order was processed June 2024. Not soon enough for me, but doable.
Anyway, hopefully that gives you the answer to your question. I’m happy to answer more.
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1 ReactionThanks for the reply and valuable info. Good to hear you're improving a bit and got SSDI. Good luck and best wishes.
Jrg200911
Xlnt, informative and comprehensive post. Sorry you had to go through all that hell. Best wishes and good luck in the future.
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Thank you that was great help I believe I’m on stage two of brain fog memory loss my wife lets me know. We did things two or ten years ago, special time's , graduation holidays, vacation, trips to Hawaii completely unavailable to process and remember but sometimes day later I remember bits and pieces very small bits and pieces
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Helpful -
Hug
4 ReactionsI have restless leg but is simple to over come for me , just put a bar of ivory soap under your bottom sheet, it may take 2 or3 weeks to work ,I know it works.
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Like -
Helpful -
Hug
6 ReactionsThe first week or or two, the LDN made me sleepy no matter what time of day I took it even starting at 1.5 mg. After that first week, the sleepiness went away for me and then I had extreme insomnia if I took it later than 11 am. I now take it first thing in the morning and hold the liquid in my mouth about 10 minutes for some sublingual absorption. I have learned online that LDN temporarily blocks opioid receptors for about two hours and then the body compensates by producing more endorphins and upregulating opioid receptor production and sensitivity. It is believed that this is why LDN causes pain relief, mood enhancement, and a reduction in inflammation.
-
Like -
Helpful -
Hug
2 Reactions@bigj,
I'm glad my information was helpful. All our stories are a little bit different, making it so difficult to generalize the LC disease into a useable definition and diagnosis for effective treatments.
All of our testing that comes back "normal" at least does rule out the big bad's. If you haven't already, I would suggest having comprehensive cognitive testing, just to make sure your brain fog isn't being caused by something other than LC.
During my LC journey, my mother was in last stages of dementia, so of course I was concerned about the root cause of my brain fog. My doctor explained it like this, "Memories are all your mental files. With dementia, files are lost and not found. With brain fog, you still have all the files. It just takes you longer to find them."
Best blessings to you.
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4 ReactionsJrg200911
So sorry to hear that. Best wishes and luck for the future.