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Episode has changed …. Covid?

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#1 Wed, 19/10/2022 - 09:15
MrT
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Last seen: 11 months 1 week ago
Joined: 01/12/2014 - 09:25

Episode has changed …. Covid?

Having had Episodic Cluster Headaches for 36 years I felt confident I knew what would happen in each episode, and how long it would last. However, I am now having my first episode since Oct 2021, when I also contracted Covid in the middle of the episode, and the whole experience has been very different and very difficult. Could Covid have changed the nature of the episode?

It has been the worst episode since I received a diagnosis and proper treatment 7 years ago (but perhaps not as bad as the 29 years of non-treatment!) Instead of 5-6 weeks the current episode has lasted 8 weeks so far. The prednisolone treatment (usually fairly effective) has not stopped headaches breaking through every day. My thigh has become a pin-cushion for sumatriptan injections, which are the only thing that have saved me, although getting hold of these has been a real challenge. I am now approaching week 9, and having a miserable shadow headache every morning, and the occasional breakthrough headache if I let my guard down and try to live a normal life. I am off the prednisolone and trying to avoid any more sumatriptan. But no sign of symptoms stopping, so perhaps this is now a permenant condition?

Of course it might not have anything to do with Covid. Has anyone else had similar experience where their long established pattern has changed so dramatically and unexpectedly?
 

thanks 
 

 

 

 

 

 

 

MrT

Wed, 19/10/2022 - 11:37
ElizabethK
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Last seen: 2 weeks 6 days ago
Joined: 26/02/2014 - 14:26

It is impossible to say categorically that Covid has been the trigger for the change or not, but even before Covid came along episodes could change and sufferers become chronic or just get longer more intense episodes.  But the good news is if you do become chronic it can just as easily revert to episodic again at a later date.

Whichever way you look at it any change in your episodes or attacks must be reported to your Neurologist as soon as possible.  You do not say anything about oxygen, do you have oxygen?

take care

Liz

Thu, 20/10/2022 - 09:50
MrT
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Last seen: 11 months 1 week ago
Joined: 01/12/2014 - 09:25

Thanks Liz. Not tried oxygen and never seen a Neurologist. My "Diagnosis" was through chance meeting with a different GP. Have just changed surgery, so hoping this time I will get a referral. Fingers crossed!

MrT

Thu, 20/10/2022 - 20:17
ElizabethK
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Last seen: 2 weeks 6 days ago
Joined: 26/02/2014 - 14:26

Why don't you give our Advice Line a call 0800 669 6824 and leave a message and someone will get back to you.  We can help you find a Neurologist who is a Headache Specialist for your GP to refer you to nearest to you!

Fri, 21/10/2022 - 22:29 (Reply to #4)
MrT
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Last seen: 11 months 1 week ago
Joined: 01/12/2014 - 09:25

Thanks Elizabeth. Yes I have called and have the Neuro contacts. Just waiting for new gp appointment so I can get referral. At last ... hoping for progress! 

MrT

Wed, 06/12/2023 - 22:33
DavidH 7
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Last seen: 3 weeks 4 days ago
Joined: 26/02/2014 - 15:13

Pondering the "episode has changed" part of this rather than the Covid part, my recent episode has been dramatically different from previous ones including a longer gap between them (2 years 9 months rather than closer to two years).  I've also seemed to have a much shorter period of bad pain (10 days or so, compared to, at it's worst 3 months) but having an oddly extended period of low level pain (that I can ride out without using medication but which is starting to get wearying).  

Sat, 13/01/2024 - 11:27 (Reply to #6)
KarenR
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Last seen: 1 month 2 weeks ago
Joined: 26/02/2014 - 14:41

I've been pain free for 12 years, really thought I was free. Caught covid early December, affected my head badly with ear infection that's left me completely deaf in one ear. About 10 days ago I was woken from my sleep with a very familiar pain. I didn't want to believe it was back. Since then it's been 3 to 5 attacks a night. There were no shadows before the covid infection so no indication that a cycle was on its way. I'm obviously devastated but also very aware that I've had 12 pain free years.

Thu, 08/02/2024 - 20:27
DavidH 7
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Last seen: 3 weeks 4 days ago
Joined: 26/02/2014 - 15:13

So sorry ... that must feel really grim.  

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