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Confusing symptoms. Shadows?

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#1 Sat, 29/01/2022 - 22:33
Sillbags
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Last seen: 7 months 1 week ago
Joined: 29/01/2022 - 20:03

Confusing symptoms. Shadows?

I was first diagnosed with CHs in 2016 after a bout of attacks. Since then I have experienced a bout roughly every 18 months with about 1-5 attacks per day. For the past 4 weeks I have been experiencing symptoms that are different. I've had low to moderate pain the majority of the day, which has made it very difficult to know when full blown attacks are about to begin. In a way it was easier to manage just having a number of full attacks a day and managing them with sumatriptan injections. This pain, always behind my left eye, is just there from the moment I open my eyes to when I go to sleep. I was wondering if this was what people have referred to as 'shadows'?

Tue, 15/02/2022 - 12:18
doc.deano
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Last seen: 7 months 4 days ago
Joined: 20/11/2017 - 20:02

Welcome. Yes - that's what I call them. Nowhere near as painful but distracting nevertheless. For me oxygen sometimes works but not always. I have sumatriptan tablets too and although not quick enough to stop a full blown cluster - so unlikely to be prescribed for that - I find 50mg stops the shadow but takes between 1 and 2 hours. If you read through the forum you will soon realise how different the experiences can be but I always find ideas that are worth a try. Always be mindful of the total dose of sumatriptan per day and two other conditions which are not fully understood: 1) Overuse headache (best google this) and 2) Many people can tolerarte excess doses of sumatriptan but find more drug is needed each time to stop an attack until the treatment hardly works (tachyphylaxis). You also need an understanding GP +/- Neurologist with Cluster experience. Best treament for starters is oxygen and as you dont mention that I threw it in here. Cant get OD or Tachy with that! Good luck.

Tue, 15/02/2022 - 12:19
doc.deano
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Last seen: 7 months 4 days ago
Joined: 20/11/2017 - 20:02

Welcome. Yes - that's what I call them. Nowhere near as painful but distracting nevertheless. For me oxygen sometimes works but not always. I have sumatriptan tablets too and although not quick enough to stop a full blown cluster - so unlikely to be prescribed for that - I find 50mg stops the shadow but takes between 1 and 2 hours. If you read through the forum you will soon realise how different the experiences can be but I always find ideas that are worth a try. Always be mindful of the total dose of sumatriptan per day and two other conditions which are not fully understood: 1) Overuse headache (best google this) and 2) Many people can tolerarte excess doses of sumatriptan but find more drug is needed each time to stop an attack until the treatment hardly works (tachyphylaxis). You also need an understanding GP +/- Neurologist with Cluster experience. Best treament for starters is oxygen and as you dont mention that I threw it in here. Cant get OD or Tachy with that! Good luck.

Mon, 21/02/2022 - 12:18
Vincent
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Last seen: 1 month 1 day ago
Joined: 17/02/2022 - 16:16

Hi there. My experience of CH has been with me for over a year and thankfully very mild compared to what I have read here and elsewhere.  The last attack that I had has now been a couple of months since, but what has stayed with me are what I describe as these shadows. With me they take the form of a reminder that CH have not ceased, but threaten me with their return. It was discussing CH with my GP that led me here to OUCH for which I'm grateful. I would also recommend the Wikipedia entry on CH as it describes these shadows very well, thus confirming my own experience. A childhood of ear problems and sinus problems ever since has convinced me that there is a connection, at least in my case. Since these CH began with me, my tinitus which I have had for years anyway, increased dramatically. Now I regularly feel these ''shadows" on a daily basis as a reminder that I'm not yet clear of CH.

 

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