Newbie

[bbbanne]

Hi all. Signed up for this site a long tome ago and to be honest was hoping to never have to use it. 

I’m a 30 yr old female and Ive had cluster headaches since around 11 yrs old. My longest clusterfree period was for around 4 years, that was until last night. I thought I was out of the woods lol. Guess not.

Anyway, I have a silly question and if anyone can give any insight on this it would be much appreciated. I always thought I had migraines. But around 10 years ago I did some research and every single symptom I have aligns with cluster headaches. I have not been diagnosed due to the fact that any doctor I’ve seen seems dismissive when I’ve mentiomed what I go through. Can’t count how many times I’ve been told “take some aleve.” Lol. Anyway. My cluster headaches dont have any abnormal symptoms except POSTDROME. Anything I read about CH makes no mention of dealing with a hangover after the attack and I’m wondering if anyone else experiences this? 

[zgreek]

Hey there bbb, the short answer to your question about hangovers from CH.... ABSOLUTELY.  You don't mention what pharma your taking, in my experience, if you are trying to "tough it out" with nothing, experiencing a KIP 8-10 CH, my cognitive processes were shot, I felt awful (hungover) and it would last for hours. My neuro's explanation was... chemicals in the brain are released during CH, this is the hangover.

For me imitrex injections worked GREAT, abort the CH and no CH hangover. There's a lot written on this site about triptans. I keep them close, but now, with busting, O2, D3, they don't get used very often.

[MoxieGirl]

Hi bbbanne,

Welcome to the group, sorry you have to be here.

First off, many (most?) doctors are pretty useless when it comes to clusters. It's just to unknown, and most GPs don't have spare time to keep up to date with medical journals. Often it is up to us to educate our doctors. Push to get referred to a neurologist, they generally have more of a clue, and some are pretty on the ball. There are even one or two amazing ones out there when it comes to cluster headaches.

I have chronic migraines (they run in my family and I've had them all my life), and I have chronic cluster headaches, which started in Jan 2007 (I also have daily chronic headaches, but now I'm just showing off). Migraines are VERY different from clusters. Here are what mine are like, and some of this may ring true with you too.

Migraines

• Pain is in both eyes, or across the forehead, or spanning other parts of the head
• Can't move my eyes or head without extreme pain
• Super sensitive to: smells, sounds, light, heat, cold, touch - pretty much everything really
• Triptans + Anadin usually aborts my migraines (Anadin is paracetamol, caffeine & aspirin)
• Feel sick to my stomach about every third migraine
• Can last from an hour to 7 days
• Comes on slowly

Clusters

• Typically one sided (although I have had 2 or 3 over the years on both sides of my head, but it's rare. Might have been 2 clusters at the same time?)
• 95% of the time it is in my eye, right where brain freeze occurs from eating something cold. The other 5% it's in my temple.
• Lasts a few minutes to 3 hours
• Comes on suddenly (like being hit in the face with a baseball bat), but is sometimes preceded by a headache or migraine, and I'm sometimes left with a migraine afterwards
• Before I started on the remedies suggested here, I always had a 20-30 minute post traumatic/panic attack after every cluster headache
• Head and thoughts are fuzzy and confused after an attack. Never thought of it as a hangover before, but that works as well as anything. Groggy, just not with it, dazed, struggle to have a clear thought. This is true even if it was a 5 minute attack, and can sometimes take me 4+ hours to fully recover mentally 
• Most people say they struggle to stay still (whereas with a migraines, any movement hurts). But I tend to lie on my bed and either rock back and forth or drift off in thought, trying to escape the pain.

As far as pain levels go, here is how I describe it. If the pain of a headache is equal to the Moon, then a migraine would be the size of the Earth in comparison, and a cluster attack would be the size of the Sun. When my clusters were really bad, I was always amazed that furniture and things in the room weren't slammed against the far wall from the sheer force of the pain I felt in my head. It felt like there was a tornado in my head, and I expected everything around me to be as destroyed by it as my head was. 

If I could have a super power, I'd like to be able to touch someone and (if I wished it) give them a 5 minute cluster headache. I always think that would be the best way to get the point across that it isn't a normal headache or even a migraine. 

MG

[Siegfried]

Hello bbane !

As MoxieGirl I have both as well. Heavy migraine sufferer since childhood. Clusters came in 8 years ago around age 40. Although these clusters were needlessly glued into the migraine attacks (I have never had a "normal" cluster headache without migraine onset first) they are very different and you should always be able to differentiate them. Clusters are explosive and FAR MORE painful than migraine but that does not mean that migraine sufferers are better off. In migraine, the headache is only a small part of the experience. There is also the photophobia, phonophobia, nausea and just the entire system is shutting down. Migraine also takes much longer; at least 4 hours. I can say it like that: cluster is like a painful bite from a centipede; migraine is more like a python that is slowly suffocating you and sucking out every bit of life-energy you have inside you. 

I have been diagnosed with clusters in 2017 by a headache specialist but because they were so strongly embedded into my migraine attacks, my GP doctor did not believe I had cluster and even myself I was also doubting. But since the migraine is recently diminishing (probably because of my age) clusters come more pronounced and now I am fairly sure.

I always start with slight level 1-2 pain 6 to 8 hours before the attack. That is for me the time to do oxygen to get the entire thing aborted. If not, a slowly buildup start to happen 6 to 8 hours later, quite bumpy with sometimes level 3, 4 then at once fall to 1, then back to 2, 3 and so one. Strong nausea during this phase. When it reach level 5, eye start watery, nose congested, the adrenaline pump kicks in and then ... BAMMM 45 minutes of hell. After 45 min it stops suddenly and I am completely pain free. Not for long however... After 30 min, the entire thing is repeating itself again. This can go on for hours and hours, cluster after cluster attack. Sometimes the entire thing abruptly stops. Other times the migraine stays and still can go on for 1 or two days without cluster attacks.

I think your postdrome is cluster related (and not migrainous). You have to search once for 'cluster shadows'. There they describe these kind of symptoms, both pre and post.

Best Regards !

siegfried

 

 

[ThatHurtsMyHead]

Postdrome - I had to look that up.

When my attacks stop (always after 100 percent O2), I'm wiped out.  Completely exhausted, but no headache, or pain of any kind.  I sometimes have a slight head buzz (from the O2).  Even after slamming an energy drink, I usually pass out (or fall asleep) within 3 minutes of my attack completely stopping.

J

[nolaNancy]

I've never understood why the discriptions of CH  don't mention a postdrome phase when so many of us experience pain  "shadows", anxiety, foggy thinking, slowed movement, etc. Postrome is an accepted part of migraines.  

Edited September 7, 2018 by nolaNancy

[jon019]

I was always flayed and splayed...and hungry for a while.........