Ganuchi

Just received my insurance approval for my home oxygen. Need some tips as to what to specifically ask medical supplier for in terms of mask etc. I am new at this…..have always went to ER or Urgent Care in past for my O2 Thank You!

I think the fatigue post COVID is the worse part. I hope it improves as I am only just coming out of it. My sense of smell is slowly coming back though so that should be a good sign. Neurologist said my major episode was most likely Covid triggered. As jon019 said she emphasized that any kind of sickness, inflammation or even seasonal allergies will most likely trigger CH plus my D3 was probably depleted from fighting China Virus. Does anyone recommend a specific brand of D3 that is superior? I take Nature’s Answer drops but maybe better quality would be more efficient?

Got my 02 script. So happy!

Hope things improve for you snugz. The China Plague is no friggin joke. It has definitely depleted my system completely too. I was thinking my dizziness was after effect of cluster attacks but now wondering if it’s maybe Covid? How weird is it that I am hoping it’s due to CH because then it should go away faster hopefully. Hope the year gets better for you!

I am completely screwed up as a result of the COVID. It just took everything out of me to fight it (I was sent home without therapeutics of course even though I felt like I was dying ) and left me totally exhausted. Plus, because I can’t really be around others for the past month, once I was well enough again I have to go into work late and work into the night while no one else is there……so the schedule change has thrown me out of whack and my sleep schedule is a mess. Plus the stress of having to keep up with my workload does not help matters. Our busy season lasts a couple more months but once the damn cough subsides (I feel good COVID wise but because of the cough still have to keep to myself) hopefully I can go back to a more normal schedule. I am so thankful for everyone here who understands and shares tips. So few people (medical professionals included) know what CH is so it’s up to us to support each other!

O2 is the goal of my visit so I am hoping. I have pics of my eye area during the attack so she can see just how awful…. I did try caffeine this time around and it definitely helped because my lulls were after the coffee (Black Silk straight) I have basically just suffered during my episodes except for O2 on one other occasion (a different time the ER I mistakenly went to wouldn’t give me O2 because they didn’t know what CH was and were trying to treat me for migraine). I tried Imitrex but it left me feeling sooo “hung over” that I just gave up on it. I avoid chocolate at all costs and fortunately I never drank anyway so the alcohol is no big deal (made the mistake of eating Rum Cake once not thinking about the booze factor in the cake…big mistake). Thankfully the COVID symptoms are almost all gone (except for the exhaustion) so I am hoping to get my body back on track as soon as possible!

Glad to know I am not alone with the COVID theory. I am episodic and quite honestly have considered myself fortunate when it came to CH because I could go long stretches of time between cycles and my episodes (up until now) have always been at most 15 minutes in the middle of the night and then I would basically pass out until morning. On a scale of 10 this past episode was probably a 15 (yeah - definitely a personal high) and I would say the oxygen in ER brought it down to about a 6.5 although the nurse was clueless and I don’t think she had it pumping as high as necessary. I basically went from thinking I was going to die from COVID (it was way worse than I thought) to wanting to die to end the pain. I was essentially non functional crawling through the house unable to open my eyes. Today (day 3) it’s a dull ache but that may be because my eyelid is still terribly swollen and droopy. I did take Benadryl to knock me out at least and it did help a bit. I know the COVID triggers inflammation so that may be the root problem along with the fact that it has left me utterly exhausted from my body fighting so hard. I normally take D3 but I guess I should try loading it to get my immune response back on track? Have a neurologist appointment Tuesday (telehealth because I still have minor COVID cough) with someone new so hoping to maybe get O2 script. Any other thoughts would be appreciated. I don’t know what took me so long to join this community but so glad I did

Wondering if anyone has had clusters triggered by Covid? Have had Covid since mid July with my symptoms finally subsiding. Yesterday had the worst cluster EVER lasting all day into today. Had to get oxygen from ER last night but I am still in pain just not so severe. Can’t help but think one is related to the other?