Clusters and Covid?

[Ganuchi]

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?

[spiny]

Hi Ganuchi and welcome. 

I cannot personally answer your question, as I have not had COVID. 

How long are your hits normally? Are you chronic or episodic? Did the O2 help? Are you still in pain now? It just seems like a really long headache! And likely a personal high in CH for you! Not good. 

[Joey BackBar]

Hi Ganuchi, I'm not exactly new here but I lost my profile from 10 years ago. My cycles usually last 6 to 12 weeks and than disappear for a year or more. If I stay away from alchohol I usually don't get them during a cycle but I do like a beer or 2 every day so it's an inconvenience. I went into a cycle this year and broke it in 10 weeks. I came down with Coronavirus at the end of March and after recovering the headaches came back. Usually if I'm able to drink 1½ beers without getting one I'm out of the woods for another year, not this time. I must have broke my cycle 4 or 5 times since covid and they just keep coming back. I haven't been able to put 2 weeks together pain free before it's starts over again. Now I'm getting them every night without drinking. I tried the shrooms for the 1st time in the 17 years I've been suffering, they worked but came back 3 weeks later. Something definitely changed after getting covid and it's destroying my life right now, hopefully the great people on this board can help. Good luck.

[jon019]

.....any illness, infection, inflammation, allergy can trigger CH....especially chronic types. your immune system is whacked out and your Vit D level, among others, is probably low. would do the D3 regimen for sure. many find diphenhydramine (old school anti histamine) helpful for allergies and/or sleep....

Edited August 5, 2021 by jon019

[Ganuchi]

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

[spiny]

We are glad that you did too!!! 

Yes, I suggest the D3 Regimen and loading to begin, due to COVID. Be sure to take the other co-factors with it!! Benadryl helps many of us with CH too. It is the one that passes the brain/blood barrier and so makes you sleepy. Crossing is why it is helpful to us - it can get in there!! And allergies are bad for CH - Histamine.  

Are you trying some caffeine at the beginning of a hit? What are you currently doing for your CH? O2 is your very best friend now, so I really hope that you get it at home! 

I would hammer the Neuro for an O2 script at least. If he gives you any grief over it, let him know that it is the BEST abortive out there!! You need it!

[Ganuchi]

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!

[FunTimes]

Ganuchi, I don't know if it would be the same thing as I have not had the pleasures of covid. I do know that when I am exhausted and my sleep schedule is all messed up from the norm that I will get hit more often and harder then normal. This last a few days until I can get back on my normal schedule. 

Stick with the o2 and caffeine! I carry 5hr drinks around with me they are small and have just enough of what I need to help bead the cluster down until I can get on the oxygen, and if the oxygen is not working as fast as I want or need it to I will also down one to give it a little boost. 

[Ganuchi]

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!

[snafu]

got the china virus end of october. long hauling since end of november (shortness of breath, fatigue, vertigo, couldn't comprehend what i read, dizziness, loss of smell and taste which have gotten better/are gone, but i developed a POTS like condition).

got a major and severe cluster from beginning of january till beginning of febuary. interestingly my usual cycle is during oktober, november and not during january. i think the inflammation and stress from covid triggered the cluster which was a major pita this time, up to 8 hits a day. during the nighttime every 2 hours on the dot.

during this episode LSD couldn't break the cycle either. usually it does after 2 doses.

interesting fact: i was on d3 and cofactors before covid and my levels were above 120 and after covid (2 weeks between end of october-beginning of november) the levels had dropped to 60, although i was always taking 10,000 units a day...covid sucked the d3 and other nutrients out of me (low on b1, b6, b12, ferritin all messed up).

so now i got 2 conditions which medicine has no clue about. CH and POTS.

Thanks covid!

at least the cluster cycle took its course. although, and this is very strange ,i had single severe hits (kip7) here and there for months on the opposite side my cluster usually is at and has been for 2 decades (up to end of june) which i never had before (ch since 20 years) and a prolonged shadow which wouldn't go away.

 

the cherry on top of this all. had disc surgery at l5/s1 during may. you could say 2020/2021 can go f@*ck itself

 

[Ganuchi]

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!

[jon019]

4 hours ago, Ganuchi said:

 I was thinking my dizziness was after effect of cluster attacks but now wondering if it’s maybe Covid?  

.....hmmm...never had nor heard of dizziness as a symptom of CH itself. possibly some of the meds we take? also might try upping your fluid intake, i had an embarrassing trip to the ER for dizziness and after many expensive tests, it turned out i was dehydrated....

[Ganuchi]

Got my 02 script.   So happy!

[ThatHurtsMyHead]

I had covid back in Nov/Dec.  For me it was just a case of the flu, not bad at all.  Accept a few nights I did wake up short of breath.  Was a little scary, but was fine after forcing myself to breathe deep for a while, then back to sleep.  Didn't affect my CH, but damn have I had a ton of other stuff happen since.  Exhaustion, mental fog, joint pain (sometimes pretty bad).  

J

[snafu]

4 hours ago, ThatHurtsMyHead said:

 but damn have I had a ton of other stuff happen since.  Exhaustion, mental fog, joint pain (sometimes pretty bad).  

J

sounds like long covid. i had fatigue in the beginning as well, it has gotten better. my doc emphasized not to exert myself since that can trigger PEM, which can lead to a worsening of symptoms and condition overall.

hope you get well soon

[Ganuchi]

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?

[ThatHurtsMyHead]

Ganuchi,

I'm no expert on Vit D (but user XXX (batch) definitely is.  Make sure you're taking the entire regimen of vitamins with the D.  It's my understanding several other vitamins need to be taken with D, to aid in absorption, bio availability etc. will help get your D up more quickly.

Cheers,

J