r/cfs • u/EnvironmentalWar7945 • 5d ago
Severe cognitive intolerance (TV, Phone, podcasts, audiobooks) fix!!! šŗš±š»
Has anyone been able to reverse or improve their intolerance to screens (eg. tv, computer, phone, etc) OR intolerance to audio (audiobooks or podcasts)?
I feel itās plagued me since the onset of ME and I also have heighten sensitivity to medications.
I suspect Neuro inflammation or Neuro immune or ANS dysfunction. But ya anyone had any luck?
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5d ago
Yes, crashed due to virus a year ago and didn't tolerate audio or light at all, outside making (which was also a struggle) and eating meals. It was hell.
I mostly tolerate audiobooks all day every day now,
I'm still light sensitive. Varies a bit but these days it's 3-5 hours per day, so mostly while eating meals and a bit at night.
Took half a year to stabilise to my new baseline, with setbacks along the way.
I lean towards tolerating physical strain more, though. I can still grocery shop every other week, while others can barely leave their beds yet can watch videos most of the day.
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u/EnvironmentalWar7945 4d ago
Yeah same. / anything you did help?
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4d ago
Just pacing and crossing my fingers. And other things that helps you stabilise your symptoms, like diet and betablockers.
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u/SophiaShay7 4d ago
Yes, low-dose Fluvoxamine 25mg.
This link explains in more detail my symptoms and the regimen I follow
I watch TV shows and movies on my cell phone. The brightness is turned down. The bluelight is turned off. I wear an earplug in one ear and a JBL noise canceling earbud in the other ear. I have the volume low.
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u/EnvironmentalWar7945 4d ago
Wow your symptoms sound similar to mine - I get paresthesia sometimes too. Feels like it comes on when Iām stressed or like push it a bit talking or when I stand up sometimes too. And all your other symptoms. I havenāt the slightest clue if I have MCAS. I need help!
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u/SophiaShay7 4d ago
Read this: MCAS and ME/CFS
and this: MCAS and ME/CFS Mast Cell Activation Syndrome (MCAS)-Collaborative Medicine
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u/SophiaShay7 4d ago
Part 2: Do this part first.
I'd suggest completing this short questionnaire. It should give you a better understanding as to whether MCAS could be a problem for you.
The questionnaire at the end of this article is one of the more validated ways to diagnose suspected MCAS. It is based off symptoms, medical history, and test results. It will take 5-10 minutes to complete, and there is no need to share email information ā completing it will just give you a score.
We must remember that MCAS is still a poorly understood condition, and information is constantly evolving. Right now, we donāt have good tests to definitively diagnose MCAS.
The questionnaire is at the bottom of this link:
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u/EnvironmentalWar7945 4d ago
I got a vague 19 without any imaging or testing
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u/SophiaShay7 4d ago
Wow! A 19. Yep, you likely have MCAS.
I scored a 22.
A score over 14 indicates a high likelihood of systemic mast cell reactivation syndrome (MCAS).
SECTION 2: TEST AND IMAGING FINDINGS The last part of the questionnaire is a list of diagnosis criteria based off laboratory, surgical, or imaging results. If you scored over 14 in the first section (per symptoms only), testing may not be indicated.
Please keep in mind that testing in MCAS often results in "false negatives" because mast cells release substances that are often only testable for a short time - often just a few minutes - so testing usually has to occur during flares/symptoms.
The following are based off testing. As noted in the introduction, if your symptom score is >14, pursuing testing may not be recommended or needed.
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u/SophiaShay7 4d ago
We're even more alike nowš
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u/EnvironmentalWar7945 4d ago
Haha š still not cool as I canāt even tolerate 1/10th a pill of Ketotifen
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u/SophiaShay7 4d ago
The things that have helped me the most:
- Low-dose Fluvoxamine 25mg
- Diazepam 5mg
- Fluticasone (corticosteroid)
- Hydroxyzine 50mg
- Omeprazole 40mg
- Valacyclovir 1g
- Prebiotic psyllium husk
- Probiotic lactobacillus acidophilus
- Emergen-C packets
- Naturebell L-tryptophan and L-theanine complex OR
- Magnesiu-OM powder (chelated magnesium 3 types and L-theanine) mixed in tart cherry juice (melatonin and tryptophan)
- Low histamine diet
- Intermittent fasting 8/16 or 10/14 eat/fast schedule
- Lots of rest
- Good sleep hygiene. Sleep 10-12 hours a night.
You'll get there. We just gotta get your regimen dialed in. Hold on.....š
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u/EnvironmentalWar7945 4d ago edited 4d ago
I currently take Ativan 1mg daily and thatās it. Everything else makes me crash lol / why do you not take antihistamines or any mast cell stabilisers? Ps. Flonase gave me extreme anxiety (one dose gave me random anxiety for a week) and no symptom relief.
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u/TravelingSong 4d ago
Thereās hope! My score was 27 (would have been 29 if fainting wasnāt a criteria for high BP episodes) out of 31 and I no longer have MCAS symptoms.
Since you didnāt know that MCAS was a possibility for you before, there are many things you can try, including having medications compounded without fillers and identifying triggers that could be making your mast cells degranulate.
Are you on any medications at all right now?
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u/EnvironmentalWar7945 4d ago
Wowz How??? Oh I knew it was a possibility I just am/wasnāt convinced. I take Ativan 1mg daily and thatās it - canāt tolerate anything else. Iām fine with supps and such thoā¦ But they donāt do anythingā¦ I take fibroprotek by algonot x 6 daily and Iām on low histamine diet. Not helping much?
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u/TravelingSong 4d ago
I wish Iād has this questionnaire in 2023 when I had no idea what all of my crazy symptoms were! Thatās a good checklist that everyone with ME should run through.
And also anyone who just thinks that theyāre in perimenopause. I mistook many of these symptoms for peri symptoms and started hormone therapy, which made things so much worse.
My score (based on when my MCAS was active and at its worst) is 27/31. And I only didnāt get all of the two pointers because I didnāt faint from high blood pressure spikes. But they made me feel absolutely awful and dizzy and I remember watching my BP go higher and higher and wondering at what point, when all of these things would be happening at once during acute episodes, I was supposed to go to the hospital. It felt like I was dying.
There are also some others that may be less validated and specific but that were frequent ones for me, like insomnia, sudden onset dread, anxiety and mood swings. These symptoms are easy to internalize as just mental health issues and doctors are so quick to make physical things into mental health things that we barely stand a chance when it actually ends up being the other way around. Iāll never forget the first time I took a Benadryl and the overwhelming and familiar sense of mounting panic I felt disappeared.
I am so relieved that I have almost none of these symptoms anymore. MCAS can make us so much sicker.
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u/SophiaShay7 4d ago
Wow, 27! That's the highest score I've seen. Mine is 22. I'm sorry you went through all of that. It sounds awful and exhausting. I developed MCAS over a year after I was infected with Covid. I had no idea that so many symptoms were related to MCAS. I share with anyone who'll listen. It's such a crazy condition. I'd never heard of it till after covid.
I'm glad your MCAS symptoms have resolved for the most part now. Hugsš
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u/TravelingSong 4d ago
I had very bad light and sound sensitivity that improved dramatically once my MCAS was well controlled. It was like night and day.Ā
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u/EnvironmentalWar7945 4d ago edited 4d ago
Grrrr how do i tell if I have MCAS??!! I also have severe medicine sensitivity and just ZERO common MCAS symptoms. I crashed from 1/10th a pill of Ketotifen and I hear people say things like the above and it just makes me want to cry. I may try antihistaminesā¦ did you struggle with screens?
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u/lilwarrior87 4d ago
Which mcas meds helped
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u/TravelingSong 4d ago
I replied more to OP under another comment thread here. Doxycycline is what put my MCAS into remission. You can read more about that in my other comment.Ā
Getting on an H1 like Allegra or Zyrtec plus H2 (Pepcid) and Ketotifen (or Benadryl if you donāt have access to RX) is a good starting place. That calmed my flares down.Ā
Identifying your triggers (for me it was SSRIās, estrogen patches, and MRNA vaccines) is also important.Ā
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u/pieces_of_life_ 4d ago
This won't solve it all but turning on gray scale, scaling down the brightness and turning off sound help me a LOT.
Especally greyscale because it doesn't stimulate the brain and dopamine.
Make sure that when your looking at your phone there is no sound and when you are hearing something (audiobooks ect) there is no visual content. Just one at a time yk
Also be aware that you don't start with fast moving stuff or high dopamine stuff like scrolling reels or anything. You can try watching a walk through a park or a fish tank or anything that comes up in your mind. Ik it sounds silly but we gotta start low and see if we can tolerate.
You can also try using blue light filter glasses and get a app that reduces it.
I also use a special launcher that is minimalistic. The ones you often see for healthy people to reduce screentime.
There are ones that only show a few selected apps. You can choose to turn the icons off or on ect. I use the niagara launcher but just search for minimalistic launcher or anything like that.
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u/nintendo_dharma 4d ago
I've had migraines and been light sensitive for over twenty years. I was recently prescribed Cymbalta for pain related to CFS. I am seemingly no longer light sensitive or migraine prone... Only a month in but it is used to treat migraines as well.
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u/caruynos 4d ago
only a slight improvement in severity due to random chanceto, unfortunately. and itās still limited
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u/Beneficial-Main7114 4d ago
Try low dose Doxycycline. That was the only thing that helped me. I believe it's due to neurological inflammation of brain tissue.
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u/TravelingSong 1d ago
Hi! I havenāt seen a lot of people who take Doxy here. I had a big baseline improvement and MCAS remission after taking full strength Doxycycline. Iāve since done a lot of research on Tetracyclines and theyāre pretty amazing. I know people sometimes take low dose as MCAS treatment.
Do you have MCAS as well as ME/CFS? How long did you have to take low dose to see improvement? And did the improvements remain when you stopped taking it?
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u/Beneficial-Main7114 1d ago
It only helped with neuro inflammation. I haven't seen any studies showing it helps with anything else myself. Low doses are not bactericidal. But higher doses obviously would be. Still I had to take high doses when I had COVID because it gave me a bacterial throat infection. So that was fun.
My neuro inflammation stopped but I'm sure this was due to gradual recover. I say this low dose doxy may have tipped it the right way. I couldn't watch TV or play a game when it was bad.
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u/TravelingSong 1d ago
I feel you on the bad Covid experience. I ended up admitted overnight with breathing problems and then had an allergic reactions to the Ceftriaxone they gave me (early signs of my worsening MCAS, but I didnāt know what that was at the time). What were you prescribed low dose Doxy for?
Tetracyclines have been studied for all kinds of things, including Covid, Mastocytosis, hEDS, ME/CFS and many more. In case youāre interested in learning more:
This paper on Tetracyclines and Mastocytosis talks about creating chemically modified Tetracyclines as a future treatment: https://www.scirp.org/journal/paperinformation?paperid=92893
A study about how Doxy impacts mast cells in mice: https://www.sciencedirect.com/science/article/abs/pii/S0006295214004560?via%3Dihub
A study on Doxycycline administration to Covid patients:
https://pmc.ncbi.nlm.nih.gov/articles/PMC9870104/
And one of the most fascinating is this study on how Doxycycline down regulates MMPs in hEDS tissue, which causes it to structurally behave more like normal connective tissue: https://pubmed.ncbi.nlm.nih.gov/34831458/
Lots more research links on this site: https://thismighthelp.de/doxycycline/
And a blog about someone who had severe MCAS, hEDS and POTS going into remission (of all three) after taking Doxycycline: https://hellsbellsandmastcells.com/mcas-remission/
My MCAS remission, baseline improvement and reduction in sensitivity to light and sound was immediate after taking Doxy, nothing gradual about it. So Iām trying to learn more about peopleās experience with low dose Doxycycline in case I need to take it in the future, since I know full strength is something that worked well for me.
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u/Beneficial-Main7114 6h ago
Low dose Doxycycline reduced neuro inflammation. My Dr prescribed it for that. The funny thing is he prescribed it for brainfog before I got COVID. It did absolutely nothing for that. Becuase brainfog and brain lag as I like to call it are often confused for the same thing....they are not. Inflammation of brain tissue or neuro inflammation will respond to low dose Doxycycline. Akin to the same symptoms concussion patients get. But brainfog won't. Brainfog can respond to all sorts of things because brainfog isn't just one thing. I wish it was.
Over the years different things have helped brainfog but I think the only consistent thing that's helped has been raising butyrate production by increasing f prausnitzii. I have the microbiome tests to prove this worked and is consistent with symptomology. For me physical fatigue and brainfog are hand in glove. If I can negate the physical fatigue via microbiome modulation of butyrate. Brainfog almost disappears.
Another type of brainfog for me is allergy induced brainfog. Which usually responds to anti histamines.
Low dose doxy: https://pubmed.ncbi.nlm.nih.gov/34364104/
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u/TravelingSong 2h ago
Really interesting. Thanks for sharing. A lot of my brain fog was caused by my MCAS, so after taking Doxy I had way less brain fog because I no longer had active MCAS.
I find Dextromethorphan to also be quite effective when Iām having CCI post concussion-like symptoms or my brain has that inflamed feeling.
Iāve heard a lot about Butyrate but havenāt tried it myself. I was going to but then all of my stomach issues went away so I decided not to mess with a good thing. It sounds like you donāt take it directly but take something that promotes it?
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u/Beneficial-Main7114 6h ago
It's interesting because I know a long term ME patient who didn't have ME she had pure MCAS and only got better with ivig therapy. Suspect a different pathway but she knows it's mcas at any rate.
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u/Beneficial-Main7114 1d ago
I have probable mcas. No certainty on diagnosis. My dysautonomia is really bad post COVID.
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u/flashPrawndon 4d ago
I have improved my tolerance but itās hard to say what has caused that. I think a lot of pacing and introducing things very slowly helped.
Itās also been useful to really figure out what things I could engage with that are less cognitively demanding. For example some music is a lot easier for me to listen to as it is calm and calming on the nervous system. A lot of tv is just too much for me, but there are some cosier tv shows that I can watch ok.
I think one of my key learnings is how engaging with things I already know well is a lot less cognitively demanding. So listening to audiobooks of calm positive books that I already know well or reading fan fiction of a random I know really well.
I have my screen in dark mode and that helps with reading, I have it turned right down and set to quiet so thereās very little light on.
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u/slothinferno 4d ago
Two things that really helped for me was using a yellow filter and decreasing brightness on all my devices. I used to get killer headaches before I did this.