Cluster switching sides

[elia]

Hello everyone, I am a new user who is suffering from CH since 2014. I am an episodic sufferer who started getting the beast 2 times a year but thankfully as time passed the episodes reduced to once per year then the last 3 episodes have been 1.5 years appart each. I decided to write this because I am in an episode right now and I always had this wierd thing where mid-episode the cluster changes sides and when I look online I see people saying it doesn't change sides during an episode. The other wierd thing is that the pain on the different sides is different. For example in this episode I had right side clusters from the start untill 2.5 weeks in. The pain was more throbbing and pressure like behind the eye(like a person trying to gouge out my eye) and the headache lasts for the full 3 hours. It also doesn't involve nausea. Now after 2.5 weeks the headache switched to my left side. The left side headache is more around the eye than in it and it makes me tear alot. It also droops the eyelid. The pain is more intense than the right side headache and it is characterized by stabbing electrical shocks that feel like they are ramping up the voltage continuously to infinity with no rest. The left side headache also makes me dizzy and nauseous and if I don't hold myself I vomit. The good thing about it is that it is much shorter than the right side one as it lasts 20 to 1 hour and disappears suddenly leaving no shadows. So I wanted to ask does anybody have a pattern like this?

[BoscoPiko]

Hi Elia,

While it is somewhat rare to switch sides it does happen sometimes. I've never had the same pattern that you speak of but I have had occasional random spikes on the "wrong" (non cluster) side. I have also had cycles that start after having pain on the wrong side. The CH attack seems to always go back to my normal side when full blown though.  

 

[CHfather]

On 1/20/2024 at 8:31 AM, elia said:

the headache lasts for the full 3 hours

 

On 1/20/2024 at 8:31 AM, elia said:

it is much shorter than the right side one as it lasts 20 to 1 hour and disappears suddenly leaving no shadows

In two big studies, more than 30% of people reported that their attacks have switched sides either between cycles or within cycles.

But I'm concerned with how long your attacks go on, even the one hour for the "shorter" ones.  Are you doing nothing at all to stop them -- no oxygen, no triptans, no energy beverages or other strategies????  

[elia]

Hello Chfather, and thanks for the reply. It's good to know that other people may have the switching thing because I was afraid it was only me.

To answer your question about the length I can tell you that I don't use anything even though I was diagnosed from a neurologist in my country. The reason is that I am constantly traveling to new countries due to study and work reasons and it is harder to get diagnosed again every time to get the treatments in time for the cycle. But the only thing I do is busting and it makes the headaches less intense so I can go about my normal life.

[CHfather]

I can only speak about the US here, but if you have an oxygen prescription, there many locations around the world where you can get oxygen using that same prescription (not needing a new prescription).

Depending on how long you are staying in a place, you could also probably set up a system there based on welding oxygen, bringing you mask and regulator with you.

If you are not doing the vitamin D3 regimen -- https://clusterbusters.org/forums/topic/1308-d3-regimen/ -- I would urge you to do that, because for many people it prevents attacks and/or cycles, and reduces the severity and duration of cycles.

Toward the end of this document -- https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/ -- several things are listed that people use to stop or reduce the severity of attacks when they don't have oxygen.