Cluster Headaches

[Kath]

I'm just wondering if anyone has any experience of cluster headaches and if, when treated for those, the medication worked, how long it took to work.  I've been by my youngest's side since 5.30pm on Thursday as she has experienced wave after wave of a horrid sensation in her head which peaks into the most excruciating pain such that she has been so terrified of the next one that she's been talking about suicide.  I'm beside myself with worry for her and can't do anything to reliev the pain.  We have, of course, been to see her GP and called NHS24.  We were originally told to 'use a hot and cold compress and take co-codamol and ibuprofen'.  That made it worse.  The Out of Hours doctor said it was cluster headaches and that a particular nasal spray would do the job but they didn't have it in stock and sent us 20 miles to a Glasgow late night pharmacy to pick it up.  It hasn't done anything.  I'm at my wits end and so is she.  I realise this is probably just a need to rant because I've spent all this time being very calm and reassuring when I don't feel it.  I just want her to feel better.  Sorry.  This has been an AWFUL weekend and I am weeping for her.  Nobody should have to go through this.  



(On top of which, every time we take the car around a roundabout in low gear it judders to a powerless halt and the engine light comes on. Last night's journey was a nightmare of screaming 20 year old in the back and aiming for anything that looked vaguely like a safe spot to end up in so we could restart the car and pray again.  Also.  My fridge has broken.  It's fair to say I'm utterly fed up.)

[kate]

I'm afraid I would have just gone to A&E and to hell with remote advice. I'm afraid I've never heard of cluster headaches. Sounds awful.

[mick]

Can't help Kath except to express really heartfelt sympathy. I can ask a question too - is A&E an answer?

I've been going through a very tough time myself with someone very close to me, so I think that I really do understand .

Good luck.

Mick

[MJB]

Can't help with the headaches, but the car problem sounds like a fuel pump issue.

[spinno]

Just had a look on NHS website. It suggests (amongst other things) mild electrical pulses through the back of the neck. That sounds like a tens machine, could be worth a try it you've not already done so.

[kate]

Car sounds like a slow leak in a fuel feed to the engine.

[steveandthedogs]

An old man living in a caravan at Bonnie's farm had them.

He reckoned the only thing to help was a whiff of oxygen from his supply.

S

[Kath]

Thanks all. She has had a bit of relief from the worst pain this morning (so far) and is just experiencing the very hard to describe sensation of 'something moving around inside my head' which is uncomfortable but not excruciating so I've taken her back to her flat so she can get a change of clothes. She'll call if she gets worse. The engine light didn't come on when I started the car this morning and drove perfectly. We will tkae it to the garage this week because I'm only really comfortable driving around town here so if it does stop completely I can always walk home. (And there's a local garage which will tow it) A&E is 25 miles away and as she's not in any immediate 'danger' from these I'm loathe to take her there. We attended the nearer hospital for out of hours but they just do'nt have the resources. We were pinning our hopes on the doctor's diagnosis of cluster headaches because he said one, possibly two doses of hte nasal spray would work, but they didn't. Suggests to me that it's not cluster headaches. I can't help thinking it's somehow related to the epilepsy.

Anyway, I'm going to spend the afternoon cleaning out the fridge and trying to see if there is any obvious reason why it has stopped working. The freezer part is working fine - just not the fridge. Bah.

[JohnY]

I had problems with my throat some time ago. My GP arranged a visit to a consultant who did the usual slightly uncomfortable tests and stated that nothing seemed wrong. In spite of that he arranged for me to have am MRI scan. That obviously worried me. Thankfully it came back clear and I now have a rather mundane diagnosis for which I just take prescribed Gaviscon. I mention this just so you realise that I am aware of the worry that an MRI scan can cause because of what might be found. Most scans come back clear of anything nasty.
My relatively little trouble is nothing like cluster headaches. The only thing in common is that MRI can be helpful in diagnosis. I suggest that you encourage the GP to refer to a relevant consultant and then push for an MRI. Some quite alarming diagnoses are easily treated and MRI is not the rare diagnostic tool that it once was. The NHS has commissioned hundreds of these scanners across the UK. They are becoming a first line diagnostic tool.
I wish your youngest well. John.

[Kath]

Mar 17, 2024 22:40:46 GMT JohnY said:

I had problems with my throat some time ago. My GP arranged a visit to a consultant who did the usual slightly uncomfortable tests and stated that nothing seemed wrong. In spite of that he arranged for me to have am MRI scan. That obviously worried me. Thankfully it came back clear and I now have a rather mundane diagnosis for which I just take prescribed Gaviscon. I mention this just so you realise that I am aware of the worry that an MRI scan can cause because of what might be found. Most scans come back clear of anything nasty.
My relatively little trouble is nothing like cluster headaches. The only thing in common is that MRI can be helpful in diagnosis. I suggest that you encourage the GP to refer to a relevant consultant and then push for an MRI. Some quite alarming diagnoses are easily treated and MRI is not the rare diagnostic tool that it once was. The NHS has commissioned hundreds of these scanners across the UK. They are becoming a first line diagnostic tool.
I wish your youngest well. John.

Thanks.  She had an MRI just recently, prior to receiving the epilepsy diagnosis so they're not in a hurry to do another one as it came back normal.  I've pushed her to see my GP rather than the locum, who offered to speak to the neurologist before prescribing anything.  She has now called back and like me, doesn't think this is cluster headaches afterall.  I based my thoughts on the mismatch of symptoms listed on the NHS website compared to what Felicity has been going through, and also the fact that the treatment for cluster headaches did nothing.  GP said the same thing.  In one sense that's a relief but it doesn't tell us what's going on.  GP has now prescribed amitryptiline which is related to one of the drugs that I take for pain relief (nortryptiline) and which led me to look up occipital neuralgia.  Seems like a better fit at first glance.  Felicity is back at work today, still experiencing odd sensations but not screaming in agony (I'm sure her customers are pleased about that) so we'll see if the tablets do anything or not.

[spinno]

Mar 19, 2024 13:47:17 GMT Kath said:

Mar 17, 2024 22:40:46 GMT JohnY said:

I had problems with my throat some time ago. My GP arranged a visit to a consultant who did the usual slightly uncomfortable tests and stated that nothing seemed wrong. In spite of that he arranged for me to have am MRI scan. That obviously worried me. Thankfully it came back clear and I now have a rather mundane diagnosis for which I just take prescribed Gaviscon. I mention this just so you realise that I am aware of the worry that an MRI scan can cause because of what might be found. Most scans come back clear of anything nasty.
My relatively little trouble is nothing like cluster headaches. The only thing in common is that MRI can be helpful in diagnosis. I suggest that you encourage the GP to refer to a relevant consultant and then push for an MRI. Some quite alarming diagnoses are easily treated and MRI is not the rare diagnostic tool that it once was. The NHS has commissioned hundreds of these scanners across the UK. They are becoming a first line diagnostic tool.
I wish your youngest well. John.

Thanks.  She had an MRI just recently, prior to receiving the epilepsy diagnosis so they're not in a hurry to do another one as it came back normal.  I've pushed her to see my GP rather than the locum, who offered to speak to the neurologist before prescribing anything.  She has now called back and like me, doesn't think this is cluster headaches afterall.  I based my thoughts on the mismatch of symptoms listed on the NHS website compared to what Felicity has been going through, and also the fact that the treatment for cluster headaches did nothing.  GP said the same thing.  In one sense that's a relief but it doesn't tell us what's going on.  GP has now prescribed amitryptiline which is related to one of the drugs that I take for pain relief (nortryptiline) and which led me to look up occipital neuralgia.  Seems like a better fit at first glance.  Felicity is back at work today, still experiencing odd sensations but not screaming in agony (I'm sure her customers are pleased about that) so we'll see if the tablets do anything or not.

Fingers crossed that things will improve.

[andytake2]

Mar 17, 2024 9:36:12 GMT Kath said:

I'm just wondering if anyone has any experience of cluster headaches and if, when treated for those, the medication worked, how long it took to work.  I've been by my youngest's side since 5.30pm on Thursday as she has experienced wave after wave of a horrid sensation in her head which peaks into the most excruciating pain such that she has been so terrified of the next one that she's been talking about suicide.  I'm beside myself with worry for her and can't do anything to reliev the pain.  We have, of course, been to see her GP and called NHS24.  We were originally told to 'use a hot and cold compress and take co-codamol and ibuprofen'.  That made it worse.  The Out of Hours doctor said it was cluster headaches and that a particular nasal spray would do the job but they didn't have it in stock and sent us 20 miles to a Glasgow late night pharmacy to pick it up.  It hasn't done anything.  I'm at my wits end and so is she.  I realise this is probably just a need to rant because I've spent all this time being very calm and reassuring when I don't feel it.  I just want her to feel better.  Sorry.  This has been an AWFUL weekend and I am weeping for her.  Nobody should have to go through this.  

I've had experience which could be cluster headaches, but could be other stuff as well. One of the biggest problems is getting a correct diagnosis.  Doctors will admit that it is difficult to do so.  The terms 'headache' and migraine' are being shunned now as they mean bugger all.

The pain I get (which resembles cluster headaches) is likely due to neck issues - don't ask what as that's up in the air.

The thing I have found that works best is diazepam to relax the smaller muscles (especially around and in the eye) together with Gabapentin which is a neuropathic pain relief (actually originally used in epilepsy and MS).

I take high doses of Gabapentin every day, although I do try to cut it down if I don't think I will need it. Paracetamol goes along with it, and then I take the diazepam as I need it.  I usually take 4mg at a time until it doesn't feel like I want to smash my face against a wall, but the average is 10-12mg over 8 hours.

The other thing is heat to relax any muscles. I have found that putting a heat pack over my eyes helps, and the other thing is stuffing my face full of sugar - biscuits, chocolate or anything.

I hope she gets better.  These things are a barsteward to diagnose sometimes, and an MRI may well help.  At the very least a good neurologist will be able to sort out something to relieve the symptoms.

[Kath]

Car update - spark plugs and cylinders apparently.

[andy]

Mar 20, 2024 8:42:56 GMT Kath said:

Car update - spark plugs and cylinders apparently.

Spark plugs and coils? Shame it's not a saab as the coil pack was good...hope yours costs less than £250 though.

[geoffr]

Mar 20, 2024 8:47:02 GMT andy said:

Mar 20, 2024 8:42:56 GMT Kath said:

Car update - spark plugs and cylinders apparently.

Spark plugs and coils? Shame it's not a saab as the coil pack was good...hope yours costs less than £250 though.

Later 9-3s and the NG9-5 had individual coils for each cylinder. Another GM destruction of a good idea from Saab.