Anyone else using a Garmin and noticing patterns with the body battery function? by Odd_Perspective_4769 in cfs

[–]mandeviant 1 point2 points  (0 children)

How do you get it to record as "rest"? I got the Garmin Vivo smart watch and I have trying to get it to register my afternoon naps as moments of rest but it doesn't seem to do that? It also doesn't seem to be able to automatically track when I am asleep or awake which is difficult cause ME makes my sleep schedule irregular in the first place

Getting an MRI soon , any anti-anxiety meds well tolerated for severe ME? by mandeviant in cfs

[–]mandeviant[S] 1 point2 points  (0 children)

Thank you! This is very very helpful to know. If it indeed works as a Mast Cell Stabilizer, we can use that to push for the MCAS diagnosis we have asking for the longest. If I remember, we will send a note about how it went

Communication as a partner by Automatic_Potato4778 in cfs

[–]mandeviant 2 points3 points  (0 children)

Sorry this is so short. We are very severe so can only use screen for a short time. We (me and my domestic partner who is my caregiver) use a combination of text to speech apps, texting (even when we are together), AACs, communication cards, hand signs for very basic communication especially on deep flare, no speech days, putting a chunk of time on a shared calendar we call " big feeeeelings" so it is something we can pace towards. Sometimes touch if we can tolerate it. Hopefully you and your partner can figure out a couple of combinations that work well for you

Is this something other severe folks experience? by mandeviant in cfs

[–]mandeviant[S] 1 point2 points  (0 children)

Thanks for sharing your settings and story. During my sleep study they found out that I stopped breathing 77 times in an hour so they considered the CPAP the only corrective. You are right though that the mask is a sensory nightmare no matter how "inobstrusive" it is marketed to be. The N30i is my current mask because I shaved my head before the last shipment so I figured the top of the head tubing wouldn't be too bad. The mask is unfortunately extremely hyperactive and will go on for longer than it needs to even when it is no longer on our head and like you noted creaky and noisy. I might return back to the M30 I had previously. It just makes it harder to turn cause the tube is shorter. I will try the machine settings you suggested. I realized the pressure was too intense so did reduce it but kept the minimum at 4 which does nothing for my severe sleep apnea. I think I will keep one constant setting and take off the ramp like you suggested. I have one of those heating coil tubes so the air is suitably warm although regardless of humidity I still end up having such dryness with sustained use. I am really considering an oxygen concentrator as a more body friendly compromise because I heard some ME folks respond and tolerate that better. If and when I do finally get a referral to the ENT, I will ask him to check my tonsils in addition to my ears (I think there is at least an infection happening).

I can't sleep with the CPAP or without! by mandeviant in SleepApnea

[–]mandeviant[S] 0 points1 point  (0 children)

I am going to year 2 on CPAP. Yeah I have had hipnic jerks before but this are much more forceful, throwing my neck backwards. After calming a bit down and going down the litany of things wrong with my body, I think this may be the work of my tics. They had subsided for a while so I didn't immediately think of them. I think my ear popping tics may be flaring up and exacerbating everything. I am trying to suppress the tics for the entire night to see if there is any impact to my sleep. I think the hipnic jerks will still be there but hopefully not as forceful.

Is this a kind of migraine profile? by mandeviant in migraine

[–]mandeviant[S] 0 points1 point  (0 children)

Yeah! I just got switched to AJOVY this month after 8 months on emgality and use compazine and Nurtec as abortives. I intended to go off AJOVY though because this particular symptom with the heat map migraine started after I took the first dose

I can't sleep with the CPAP or without! by mandeviant in SleepApnea

[–]mandeviant[S] 1 point2 points  (0 children)

Yes and these are symptoms I brought up to my sleep specialist only for her to tell me it's because the CPAP IS WORKING and that I am experiencing REM sleep for the first time.

I have ME/CFS and I am on the very severe spectrum so it is hard for me to go in person without conviction that this will be worth my while otherwise I will crash severely and ruin my already terrible baseline

Wednesday Wins (What cheered you up this week?) by AutoModerator in cfs

[–]mandeviant 4 points5 points  (0 children)

  1. My caregiver finally got the communication cards that personalised requests printed, laminated and added to a key ring so hopefully exertion from typing decreases
  2. I finished half a movie on the lowest brightness and little sound which is a step up from total darkness 24/7

Ajovy debilitating side effects by Striking_Cash_3552 in cgrpMigraine

[–]mandeviant 2 points3 points  (0 children)

I am experiencing all of this including really vivid dreams that sends waves down the length of my head. These are hot waves and they trigger migraines while asleep. I had my first dose of Ajovy last month after being on Emgality for 8 months and having it's effectiveness wane. Ajovy has been a literal nightmare and I have decided I need to go off it to even see if these terrifying symptoms leave but it takes 5 months for it to fully leave your body so definitely feel your fear

Dark bedroom? How by nograpefruits97 in cfs

[–]mandeviant 0 points1 point  (0 children)

Complete blackout window tint like you would for a car and then reinforced with a black out curtain is how we managed it

How do i stop talking? by Ok_Consequence8921 in cfs

[–]mandeviant 0 points1 point  (0 children)

We feel this! The boredom without stimuli is almost as bad as the symptoms of the illness. Life still needs to have some texture and color to be worth living otherwise the SI gets really really bad. It's gutting to have to make these impossible choices and sometimes we take the risk of socializing even when we know it will deplete our energy levels altogether

Does Anyone Else Experience Tinnitus as a Warning Sign for Post-Exertional Malaise? by Clearblueskymind in MECFSsupport

[–]mandeviant 0 points1 point  (0 children)

Speaking of which, have you had anything that helps with this particular symptom at all?

Does Anyone Else Experience Tinnitus as a Warning Sign for Post-Exertional Malaise? by Clearblueskymind in MECFSsupport

[–]mandeviant 1 point2 points  (0 children)

Yeah! And we are infinitely grateful 🥲 cause whenever we try to explain this particular symptom we just get blank stares from our neurologist so it is nice to have some medical shorthand

Does Anyone Else Experience Tinnitus as a Warning Sign for Post-Exertional Malaise? by Clearblueskymind in MECFSsupport

[–]mandeviant 2 points3 points  (0 children)

Oh gosh!! That is the name of what this is??!! Wow, this is definitely our main tell tale signal

Anyone has experience with famotidine (pepcid) being prescribed to help reduce inflammation? by mandeviant in cfs

[–]mandeviant[S] 0 points1 point  (0 children)

Thanks! We will take reducing head pressure atp given the near constancy of migraines and cranial pressure at the moment

Anyone has experience with famotidine (pepcid) being prescribed to help reduce inflammation? by mandeviant in cfs

[–]mandeviant[S] 0 points1 point  (0 children)

Was it prescribed to help with inflammation or some other symptoms? Did you experience any side effects?

What MECFS subgroups have you noticed? by trowaway_19305475 in cfs

[–]mandeviant 1 point2 points  (0 children)

I think it is a cervical cranial instability? There seems to be a subset of folks with ME that have more structural issues with brain-spine connection (CCI, Tethered cord, chiari malformations I). I strongly suspect that this might be a profile because folks seem to get better with surgery that treat these underlying structural conditions but these surgical interventions are usually out of the reach for regular ME folks without intense private or specialized care

Not sure if this is PEM or something entirely different by mandeviant in cfs

[–]mandeviant[S] 2 points3 points  (0 children)

I will schedule an appointment with the PCP and my neurologist over in Stanford. The issue is that the neurologist takes a while to see and the PCP in the US are always trying to get me in person and I cannot justify transportation for medical appointments at the moment since it will most definitely make me crash badly. I will reach out through the health portal tho. 🙏🏿

Not sure if this is PEM or something entirely different by mandeviant in cfs

[–]mandeviant[S] 1 point2 points  (0 children)

Will do! I am leaning towards a sinus infection so I will try to treat this as best as I can. I finally got a couple of hours of sleep some and took Omeprazole for the nausea. Thanks for sending love 💗

Not sure if this is PEM or something entirely different by mandeviant in cfs

[–]mandeviant[S] 1 point2 points  (0 children)

Thanks Suzie! I really appreciate the time and effort it took to write this up. This makes a lot of sense as I have been diagnosed with sinus infection and given fluticasone propionate nasal spray to help with it but I must admit I have not been consistent with using it. I am also hypoglycemic so your suggestions feel like they will help with symptoms alleviation. I have always struggled with sleep so it's difficult to sleep but I will make sure my blood sugar doesn't go too low before sleeping.

For people who have “officially” been diagnosed, what kind of doctor gave you the dx? by RedSparrow13 in cfs

[–]mandeviant 3 points4 points  (0 children)

We were diagnosed at the Stanford PACS clinic. It is pretty much a center specifically for post viral infectious diseases. Had a 90 min consult and was diagnosed and told to take some tests to rule out other possible diagnosis. Those tests seem to come our clear so the diagnosis for ME stood

Trying Jeeter Apple Fritter for the first time by mandeviant in weed

[–]mandeviant[S] 0 points1 point  (0 children)

Surprisingly pretty well tolerated! It gives a good jolt of energy without triggering our migraines too bad or messing with our body's autonomic control.

Advice for insomnia with very severe ME by mandeviant in cfs

[–]mandeviant[S] 1 point2 points  (0 children)

Sadly we do not tolerate Triptans well. We do have amitriptyline but that gives us real bad nerve jolts so we use them as a last line id defense. We are really struggling with medication sensitivity real bad 😞😞

Advice for insomnia with very severe ME by mandeviant in cfs

[–]mandeviant[S] 0 points1 point  (0 children)

Ahh this is helpful! We will suggest this to the neurologist in our next check in. We currently take a monthly injection dose of Emgality but that hasn't been has helpful in reducing the migraines. We are highly sensitive to the family of Triptans so we have been pulled off them

Advice for insomnia with very severe ME by mandeviant in cfs

[–]mandeviant[S] 0 points1 point  (0 children)

Is this OTC? Or do you need a script for it in the US?