New cluster symptoms

[susie1984]

Hi, have just come across this forum as I'm trying to work out what is happening with this new horror with my head. I had suffered from classic episodic migraine with aura since my teens, which was mainly manageable until about six years ago when I had a major flare up and several hospital trips and many tests. In the end the diagnosis was chronic migraine and the pain never actually went away until I was finally approved for Botox to treat it which has mainly kept it under control. Now about 2-3 weeks ago I have started with these new episodes which seem to fit the description of cluster headaches. They fit the description in that they are intensely, ridiculously painful, start behind my left eye and radiate down my face into my jaw and teeth and nothing is relieving them. They were at approximately the same time every evening though and now they seem to have progressed to random times throughout the day. Is this normal? Also is it normal to have pain in-between attacks, just to a lesser intensity? And I have a permanent metallic taste in my mouth and my tongue keeps tingling sporadically - is this a cluster headache symptom. Apologies for all the questions  - just trying to find the likely diagnosis and any treatment that might help slightly before my life implodes again like it did last time!

[Bejeeber]

3 hours ago, susie1984 said:

They were at approximately the same time every evening though and now they seem to have progressed to random times throughout the day. Is this normal?

Yes, pretty normal.

 

3 hours ago, susie1984 said:

Also is it normal to have pain in-between attacks, just to a lesser intensity?

Lesser intensity pain between attacks? Also normal, commonly referred to as "shadows"

 

This sucks @susie1984 - I'm no diagnostician, but "ridiculously painful, start behind my left eye and radiate down my face into my jaw and teeth and nothing is relieving them" sounds like classic cluster headache symptoms. Sorry you appear to have become a member of this club. 

 

If only there was some medical approach like botox that worked for CH like it does for migraines. BUT there are effective treatments!! The blue banner "New Users - Read Here First" at top of page here ^^^ links to some good starter busting info. That, along with the Basic Non-Busting Information could help you hit the ground running, and hopefully you'll be on the way to relief ASAP.

 

 

 

 

[BostonHeadacheDoc]

Features that make the severe LEFT sided head/face pain attacks more likely cluster include- rapid onset of attacks- CH attacks reach peak pain in a few short minutes, hence very quick ramp up, unlike migraine, and CH attacks last 30 min to a few short hours (typically an hour or two at most). There is a tendency to favor night attacks- so awoken from sleep with them- and there is no going back to sleep until the attack is over. These night attacks are earlier in the night- whereas migraine waking you up would be more likely morning. Any sensations in the area of CH attacks (head/face) in between attacks are shadows and less commonly shadows can be painful (milder than CH attacks). 95% of CH attacks are accompanied by tearing on the affected side or blocked nasal passage/running nostril on the painful side during the attack. Bad pain all day is not CH. Botox will NEVER work for CH. The metalic taste- may be medication side effect such as topiramate which can also cause tingling of hands/feet/face/tongue. Tongue tinging is a common experience with sensory aura of migraine- in which case it should fit with other aura symptoms. The aura symptoms do not exclude CH as an explanation of the left sided head pains. Experiencing more than one severe one sided head pain episode a day, and predictability of when an attack will occur ('circadian pattern') are commonly seen in CH. There are now many treatment options, guided by a neurologist/headache medicine specialist. 

Peace.

[FunTimes]

Agreeing with everything stated above, I would still consult your neurologist or a headache specialist in your area and maybe get scanned to rule out any other issues going on in your head. If the scan shows a woodpecker holding a drill and pushing on the inside of your eye you pass the test and are now an official member of the Clusterbuster community. 

Read up on this site and ask all the questions you may have and we all will help you get into a manageable place to deal with this. It sucks but you are in a great place. 

[susie1984]

Thank you for all the replies - the sharp bursts of pain definitely sound like cluster headaches but the background pain seems too severe to be shadowing  - could I have something else going on at the same time? Tbh in the background it does feel like that initial flare up of my chronic migraine from what I remember but now with cluster headaches too.

I have had a look at the treatments recommended in the first post - thank you very much for that. However my vision has started to go blurry this afternoon so I've come back to A and E (I'm in the UK) as I'm a bit worried now. Prior to that I had booked a private neurologist appointment too to try and get some appropriate treatment.

[susie1984]

So sorry to just be coming for advice again rather than actually offering anything but it's been a horrendous couple of weeks. I was kept in hospital for a couple of nights after the last post but did get a CT scan which was clear, saw a neurologist who referred me for an MRI. Had that on Sunday, which was very quick for the NHS. He also prescribed verapamil and sumatriptan injections on discharge although he's not convinced about a cluster headache diagnosis because of my age. Things had been slightly better - not great but I've been functioning. Today's been awful though, I've got immense pressure in my head all the time that won't ease as well as the cluster headache symptoms.

I went for an ECG yesterday to check that I was OK to continue with verapamil  - at my GPs who are never great - and after checking my notes it says I have a T syndrome abnormality - has anyone had that before and were you able to continue with verapamil. My blood pressure was also much higher than normal. None of which was discussed with me but that's par for the course to be honest.

I've also started having a weird reaction to the Sumatriptan injections - the pain moved all over my head but its really immense and not like any reaction I've ever had to triptans before - should that be worrying me?

In between that the pain flare ups still feel like cluster headaches - it's definitely my trigeminal nerve. Any advice would be appreciated because I'm a bit scared and lost at the moment 

 

[Bejeeber]

Wow, that's terrible, sorry to hear it! 

If your neuro wasn't a headache specialist, well those are the ideal ones you want to see - it can be quite the long wait to get an appointment with one though, and that seems pretty universal, no matter what country you reside in.

Last I checked, verapamil is known for lowering blood pressure, and is even prescribed for treating high blood pressure, so I wouldn't imagine your high blood pressure to be a verapamil side effect. I'll leave the T syndrome (or did they test for "T series"?) abnormality for others who may know about it.

Sumatriptan injections have historically been prescribed in too high of a dose, specifically 6 mg, whereas doses of 3 mg (or even 2 mg for those such as myself), are plenty effective at aborting cluster attacks if caught at onset. 

It could be worthwhile to let us know what kinda sumatriptan and verapamil doses you have been prescribed  - if you've been issued the big dose 6mg Sumatriptan (which I would have to think would increase risk of side effects), there are ways to split those injections:

 

[CHfather]

On 9/16/2025 at 11:23 PM, BostonHeadacheDoc said:

Bad pain all day is not CH.

If you have significant pain all day, and the attacks that seem like CH are "bursts" as you write (which I think of as briefer than a typical CH attack), and if a triptan doesn't help, it seems possible to me that you might have one of the CH "lookalikes," some form of hemicrania, maybe paroxysmal hemicrania (Paroxysmal Hemicrania: Causes, Symptoms & Treatment) or hemicrania continua (Hemicrania Continua: Causes, Symptoms & Treatment).  I'm just guessing here: you can look to see how well the symptoms match.  Unlike CH, hemicrania is generally not responsive to triptans or oxygen (or busting, except for some brief relief of maybe a day or two).  So one test would be to take the medicine that treats hemicrania, Indomethacin.  Another would be to try oxygen.

As I say, I'm just guessing here.  Sometimes people "try" Indomethacin, but the dosage isn't enough, or it's not continued long enough, to get a real test.  This is the recommendation from the International Headache Society: "In an adult, oral indomethacin should be used initially in a dose of at least 150 mg daily and increased if necessary up to 225 mg daily. The dose by injection is 100-200 mg. Smaller maintenance doses are often employed."