Symptoms Between Cluster Cycles
Symptoms Between Cluster Cycles
Hi everyone
I have been suffering from cluster headaches for at least a few years. Following having two teeth removed and treating the headaches with ice packs and a range of pain killers, I spent just over a year on Nortryptiline which kept the symptoms away. During August 2024, i experienced my worse bout of attacks and was diagnosed correctly in September. Oxygen and Verapamil eventually brought the attacks to a close in mid-October.
Since then I have continued to experience numbness, tingling and have felt that the headaches could return at anytime. I am missing a lot of time of off work as a result and cannot see how I will ever be able to function normally again.
is it usual to feel this way between clusters and does anybody have any advice that may help me move forward?
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Hi Neil.
We sometimes get background headaches and slight Cluster symptoms while "out of bout"; not having headaches, but numbness and tingling aren't a part of that. It could be a side effect of any other medication, or a seperate condition. It would be best to speak to your GP, just to be safe.
Phil.
Thank you. I appreciate your response.
Hi Phil
can I just ask how you would describe the slight symptoms of an out of bout headache please.
thank you
Neil
Neil's request for some clarity around the spaces between periods of severe headaches, promts me to ask a similar request. According to Wikipedia 's entry for cluster headaches, these are referred to as "shadows", if I understood correctly, and this reflects my own experience. While I have thankfully not, had a cluster headache for a few years now, I do still experience shadows on a daily basis. This gives the feeling that an attack could be imminent. These shadows last milliseconds, can be so slight as not to concern me, other times they can make me gasp and last for maybe a half-second.
My description of these 'shadows' are entirely from the Wikipedia entry, but I would like someone to confirm or deny if this is a correct interpretation of the experience.
finally, after a considerable wait, I have now just this week, had a CT and MRI scan and await the results, in the hope of maybe learning a bit more.
Thank you, Vincent.
I too have an altered sensation on one side of my face which often is a precursor to a full on cluster attack and as a shadow. I even had it for years while I was otherwise mostly in remission. It feels "numb" and tingling but, importantly, it isn't numb - if I touch my face I get the correct sensations. Sometimes it feels like a nettle sting. It comes with some pain, which can get very bad.
Recently I have found that if I am quick I can stop it with oxygen, if I'm too slow I can buy a little respite from it. However, I now have chronic cluster headaches, so this does differ from your situation. In the past I just tried masking the sensations by chewing menthol gum - not a cure or particularly effective.
There are few research studies on shadows, but I did find this one. From figure 2 onwards refers to the shadow symptoms. I find knowing there is some research can be comforting - even if good treatment options are a long way off!
If you're on verapamil then I assume you see a neurologist, it might be worth talking to them or getting a referral.
I hope you find something to help you get your life back. Good luck!
Hi Lotte
thank you so much for your response. It has been really helpful at putting my mind at rest. Like you said, the article is really helpful and I agree that sometimes it is just good to know that there is research happening out there.
Thanks
Neil
Yes, a very interesting study: Thank you for that Lotte.
Shadows are more of a personal experience; mild or background headaches, slight cluster symptoms and various, unusual suspicions can all fall in the 'shadowing' category.
It is also fairly common to suffer with more than one headache condition.
If it helps, for me, "shadows" are generally feeling "tired" in the part of my face where I'd experience my cluster headaches (though I realise that can be difficult to pinpoint). I'd say the pain level is 0.5 out of ten and doesn't need treatment at all (though might be a sign of pain to come).
Always feel I should say, I experience Cluster Headaches every two years [and have done, in this pattern for almost 30 years - though not actually diagnosed for that long] ... and not a doctor. Would always recommend speaking to a GP if symptoms don't feel usual to you.
Hi all, I have have Episodic cluster headaches for the past 10 years. My recent bout which was December 24 - January 25. And they come back every 2 years.
However on this occasion once the main bout finished a few weeks later into early February 25 I started experiencing weak headaches on the same spot (right side temple, behind eye). The pain is not as my cluster headaches intensity, I would say pain factor 1/10 but still very uncomfortable. To describe the pain it's like a deep tension, annoying, irritating pain). They have lasted for about a month or so and haven't stopped. (Usually lasting 5minutes and maybe longest 30mins)
During my cluster bout I was on verapamil with max dose of 600mg a day which i have now stopped and during my attack was taking Sumatriptan Injections.
Any advise on what these smaller bouts everyday could be or if anyone has any remedies or similar condition?
Hi
Since my original post, I have been back to see my headache specialist and am now taking 240mg verapamil a day. This seems to be helping a little but I am still experiencing the same symptoms on a daily basis as you describe. Low pain intensity, 'deep tension, irritating, annoying' but I would add to that 'frustrating'. The only difference is that it can last all day or some of the day. The specialist is now trying me on duloxetine and I am continuing to take the verapamil but it is too early For me to tell any difference. I am also waiting for a referral to the neurologist. I hope this helps and I will update when things change.
Neil
Hello Hemz
I'm somewhat surprised you are being prescribed Verapamil when your bouts are usually one month every 2 years; it's my understanding it takes a while to ramp up to an effectively high dose, which is also lowered in steps.
Also Neil: I've also not heard of Verapamil being used for shadowing.
I'd suggest you both give the advice line a call.