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OUCH(UK) Organisation for the Understanding of Cluster Headache

Return of Cluster Headaches / Change in pattern

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#1 Sun, 08/01/2017 - 17:13
DavidH 7
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Return of Cluster Headaches / Change in pattern

My Cluster Headaches have returned after a slighly longer gap than usual - they didn't arrive when expected and I lulled myself into a false sense of security (I convinced myself they were over).

They've returned with a vengence, however. I usually experience them at night - one-ish is typical - to start off, at least.  However, after two nights of fairly light-weight night time attacks, they've shifted to a morning (0700-ish), afternoon (1300-ish) and evening (2330-ish) attack. 

Any suggestions as to how to manage and/or explain this?

I have Imigran injections and tablets and am waiting for oxygen.  I didn't get on with steroids.  My episodes usually last around ten weeks, I think. 

Mon, 09/01/2017 - 08:25
AndryaB
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Hi David, 

Sorry you have gone in to cycle again, have you got a headache specialist?  If you have you could ask for a nerve block.  If you haven't got a headache specialist you should ask for a referral, if you give the helpline a ring they can give you details of the specialist in your area.  Has your dr arranged the oxygen and will you be getting portables?

As to how to explain this,  if you look in the downloads section there is a print out designed to give to family, friends  and work colleagues.

Andi

Fri, 13/01/2017 - 02:25
DavidH 7
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Thanks Andrya.

By "explain", I meant what would explain a change in the pattern of the cluster headache (longer remission followed by more frequent attacks). 

Interestingly, last time I explored portable oxygen I was told that they weren't suitable.  My employer (generally very supportive) was also a bit nervous about oxygen remaining on the property).

Does anyone ever get to see a specialist speedily enough during an episode to make this worthwhile??

Fri, 13/01/2017 - 02:25
DavidH 7
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Thanks Andrya.

By "explain", I meant what would explain a change in the pattern of the cluster headache (longer remission followed by more frequent attacks). 

Interestingly, last time I explored portable oxygen I was told that they weren't suitable.  My employer (generally very supportive) was also a bit nervous about oxygen remaining on the property).

Does anyone ever get to see a specialist speedily enough during an episode to make this worthwhile??

Sat, 14/01/2017 - 14:17
Robmac
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I too have had a change in pattern.

I have suffered for about 30 years now. Every 3 years, usually 6 headaches a day ongoing for 6 weeks then stopping as suddenly as they started.

The last attack came a year early and only lasted 2 days and were relatively mild. Next time they were scheduled they didn't appear at all! I thought I was cured.

No such luck, just before Christmas, I got a couple of quite sever headaches, these have got progressively worse and I am now in full cycle again. Had one about an hour ago, just waiting for the next one now.

 

 

 

Thu, 26/01/2017 - 20:34
DavidH 7
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It's quiet around here.  I understand many have migrated to Facebook but I feel slightly resistant to that.
I'm continuing to have an odd episode.  After a couple of weeks that included up to five attacks per day including some of 9/10 intensity (very much prompting feelings of "Why me?"), they've settled into light-weight but hard to shift attacks that I'm hoping will mark the ending of the episode. 
If so, it will be an unusually short run.
Practical question:  when I have an episode, I'm offered the opportunity to see a specialist but warned the waiting list will mean the episode will be over.  Can I meet a specialist to formulate a fast-action plan for in two years time? (Eg.  "In two years time, you will be speedily be offered a nerve block".)
 

Thu, 26/01/2017 - 20:58
ElizabethK
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David,

The pattern of attacks do change for some, and it can be quite daunting when it happens as you are used to dealing with them in a different pattern.  Your Neurologist should always be informed of any changes.  Sadly waiting lists mean just that, quite a wait, but it is still worth getting on the waiting list for a Neurologist who is a Headache Specialist, so as Andrya suggested give the Helpline 01646 651979 a call for the one nearest to you.  You may well be out of cycle but your Neuro will formulate a plan for when your next CH comes along.

take care

Liz

Sun, 29/01/2017 - 18:14
John S
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David,

I have been an episodic suffer for many years. I have had changes in patterns, currently twice a year for four or five weeks. Previously they were once a year for ten weeks. I know roughly when the cycle will start. The only neuro I saw was when I was first diagnosed and since then have managed them and my doctor myself. I note you are getting oxygen and hope by now you have it. It is my preferred treatment and adding a demand valve has made a significant difference. That's fine when I am at home, I have not bothered with portable oxygen so when out I have the Sumatriptan injections which generally give pain free for about 7 hours. Now having left work it is not often I have to use injections, I can work my life around this condition. I don't often get them at night but when night time attacks do start to occur I take a 50mg Sumatripton tablet just as I go to bed and that sorts it, no attack. The tablet counts as one of your two Sumatripton treatments allowable in 24 hours. We are all different but I do hope this gives you more information on what another sufferer does. All the best.

John

Thu, 02/02/2017 - 15:36
LucyG
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Hi David,

My pattern changed at the end of last year - the cycle started earlier (August rather than October) and, slightly spookily, was very similar to your change - after a first horrendous night of multiple attacks, they all shifted to early-morning and early evening (i.e. commuting times!). It in a sense it was good, because I wasn't spending my nights rolling around on the living room floor, but it did mean I had to work from home for the duration which was less than ideal. Employer very sympathetic though, luckily.  I think the daytime pattern was also a tad easier because the attacks seemed more spaced out and therefore I was able to time my abortives accordingly and not go over the limit. 

And on the neuro front - I've had a GP diagnosis for a couple of years, sufferer for about 7-8 years, and I only saw neurologist for the first time late last year. I was well out of cycle, but she was helpful in confirming diagnosis and sent helpful lettters to my GP to confirm recommended treatments, which should help in the future if there's any ambiguity. 

Hope some of this helps, and in any case, I'm sending you strong positive vibes for the dark hours. 

Lucy

Mon, 06/02/2017 - 20:40
DavidH 7
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Thanks for the answers, all. 

Tue, 07/02/2017 - 20:00
Mr Git
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Hi David

Apologies for the late reply and hope in the meantime you have found remission.

Everything I am about to say is only relevant to me, as you know we are all different and I know nothing (Manuel style). Biggrin

I (not anyone else) describe myself as a classic episodic. Prof says every cycle (as I get older) my periods of remission will increase, but also the duration of my bouts will increase. To date, all the stats prove he is absolutely correct.  Been ECH for 13 years. First bout 6 weeks, first remission 18 months. Last bout 4 months, last remission 2 years 9 months. Current remission 3 years.....so the timebomb is on finals. My most regular eruption occurs in Sept/Oct which would be 3 years 9 months. Whilst I would be more than happy with this, if you extrapolate the stats it doesn't bode well for the bout duration! New Year in Barbados will have to be shelved!! Dirol

The only time my cycle has shifted is when I utilized steroids (only did this once following advice which, though well meant, probably wasn't the best advice for me at the time). Bad news for an ECH sufferer. Don't get me wrong, they work and suppress the bout. However, nothing in ECH world is that straightforward. You see, you have to let the Beast think he's won. If you suppress the bout you pay the price as there will be consequences. It will disrupt your cycle. At a time when you think you should be in remission you will experience shadowing. If you are not experienced you will mistake shadowing for a bout and will inject instead of just dealing with the shadowing with Demand Valve O2. If you do that it's snowball time. Shok  Best treat the attacks with Sumatriptan injections (Sun Pharmaceutical generic version) and Demand Valve O2 (both large and portable as the Beast can strike at any time). This way the attack at least starts and the Beast thinks he has won. There is a school of thought which says that you will get a certain number of attacks so if you let the attack start and then abort it that counts. If you suppress the attacks from starting in the first place you have disrupted the cycle and the Beast will make you pay! Diablo

Re: work - they're obliged to provide you with a private room to inject and use O2. I have both large and portable cylinders at work. If you contact the officers / trustees they will forward you the Nat West document which will outline to your employer what his/her responsibilities are.

Re: GONB - The only Neuro I would choose is Prof. At the outset of my bout I will know that I will reach full blown in about 3 weeks. I will want to hold off using the GONB for as long as possible, next bout probably Week 12 - 15. I will schedule this with Prof at the outset and book my train - simples Help

Hang on in there and keep smiling Wink

Sean

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Tue, 14/02/2017 - 21:01
DavidH 7
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Thanks Sean.

Any reason why a consultant would want someone to re-try prednisolone/verapamil (known for side-effects) rather than go for a nerve block?

Wed, 15/02/2017 - 20:59
Mr Git
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Hi David

Nothing in ECH world is straightforward, and I'm definitely no expert! I can only tell you about my experiences.

A lot depends on who your consultant is. As I stated before, I would never see anyone other than Prof.

I was given prednisolone whilst under a different consultant (best not say who). My bout did end shortly after taking them, but Prof subsequently told me it would have ended naturally anyway. I was panicking because my bout was lasting a bit longer than the last one. Again, I have since learned from Prof that each of my bouts will last longer. The fallout from taking Prednisolone was catastrophic, completely messed up my next period of remission with endless shadowing etc.

Verapamil - OUCH! Dodgy subject!! I will probably be vapourised for even thinking this, let alone typing it. This is just an opinion so please don't read anything into this. I was once informed by someone whose opinion I trusted 100% that Verapamil carries a risk of turning an Episodic into a Chronic. Even if there is the slightest risk of this, it is a risk I cannot take. Bracing myself to be vapourised Shok

I'm surprised you didn't pick up on a moment of contradiction in my last post. I banged on about suppressors disrupting cycles, stating they should be avoided, then said I opt for a GONB. A GONB behaves like a suppressor in that it suppresses the attacks, yet, for some reason which I have not confirmed with Prof yet, it doesn't seem to disrupt your cycle. Prof never hesitates to recommend it for me.

Perhaps someone out there with more experience than me can explain, failing which I will ask Prof when I next see him.

In the meantime, I hope you find the best possible advice out there David.

Information is power!

Sean Wink

 

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Thu, 16/02/2017 - 11:23
DavidH 7
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Thanks - that's very helpful to know.

Is there any "evidence" that Verapimil can shift Cluster Headaches from Episodic to Chronic?  (I'm keen to argue against trying it again). 

 

Thu, 16/02/2017 - 18:22
Mr Git
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Hi David

This has been quite a conroversial subject over the years. You would be best putting this question to the Trustees and Officers as they are in the best position to answer your query. 

My gut feeling is they will say 'no'. However, what I can tell you is I would trust the person who informed me 100%. I suspect the reason nobody mentions this is the fact there is no medical evidence to back this up, it is just an opinion.

CH does not come with a manual. You have to be determined and resourceful, but most importantly you have to quickly work out whose opinions you trust in order to avoid going down a path which can lead you into trouble.

I'm surprised you are referring to having to 'argue' your case. I have always just asked for whatever I have wanted and got it? What part of the world are you in? Is your consultant one of the OUCH recognised 'good guys'? Again, if you speak with one of the Trustees or Officers they will be able to help you with this.

I would never be led down any path I didn't have confidence in, I only made that mistake once and that was through my lack of knowledge. Numerous emails later with dear Les and Mike and I soon got my O' Level in TACology Biggrin

Best of luck with it David

Sean Smile

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Thu, 16/02/2017 - 20:00
DavidH 7
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I'm probably overstating with the use of "argue" ... and the argument is probably with myself as much as anyone, anyway.  I have the impression that Doctors would like me try Verapamil and Prednisolone again and I guess that I'm checking out whether I'm being silly not to do so.  (I'm definitely erring towards not doing).

 

Thu, 23/02/2017 - 22:17
DavidH 7
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Revised plan:  the visit to the neurologist seems worth it.  Next time (2019?) I can have rapid access to neurology (and probably a nerve block).

I've just picked up on mentions of a demand valve:  is this something I have to buy or should I ask my local oxygen service for this?

The (relatively low level) pain is dragging on ..

Fri, 24/02/2017 - 19:33
Mr Git
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Hi David

The Demand Valve could be extremely useful for you, particularly with regard to getting rid of shadowing.

I bought my first one literally when they first became available. As a result of Mike's tireless efforts continually kicking the door down at the Department of Health he succeeded in getting them to see and understand the bigger picture, as a direct result of which Demand Valves are now available on the NHS.

For the precise route on how to secure one best speak with a Trustee or Officer of OUCH.

During my last bout my original DV started behaving oddly (probably through over-use). Given that I rely on it I couldn't afford to take any risks. Accordingly, I went through the process of securing a new one just based on common sense guesswork.

I visited my GP and explained my requirements. I provided them with an OUCH Hoof form. My GP confirmed she would complete it and forward it on.

When nothing happened (there's a surprise!) I contacted Baywater Healthcare and by-passed straight to a Supervisor. He confirmed that my application had got stuck in red tape. I convinced him to get it unstuck.

I ended up speaking with someone from the local hospital who immediately realised I knew more about DV's than he did. He duly rubber stamped my application and freed-up the logjam.

24 hours later Baywater delivered my new DV.

Before DV's were available the worst parts of my bout were simply not viable. You can probably imagine what I was starting to think........

The DV has made the difference. It has taken an unviable situation and turned it into a JUST about viable one, but only just. I say this now, I only just made it to the finish line last time, and as you may have read I am expecting the next finish line to be several weeks further on.

I opt for the mask version. I used to run a lot so I am used to breathing in through the nose and out through the mouth. Mike preferred the mouthpiece. I told him it was because he was a smoker and he supported Manchester City...whoever they are??? Scratch one-s head

Anyway, best of luck with it. Any problems you know where we are Biggrin

Sean

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Sat, 25/02/2017 - 16:43
AndryaB
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Hi David

Depending on what area you are in a demand valve may be available on the NHS, you could ring your O2 provider and ask if they have the DV and if they do you can print the completed HOOF form in our downloads section and ask your Dr to complete and send it to your O2 company.

With regard to verapamil turning you from episodic to chronic there is absolutely no evidence to suggest this is the case but many people believe that verapamil has turned them chronic.  

Andi

Fri, 10/03/2017 - 20:58
DavidH 7
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Strange.  Still getting pain ... not horrific pain but it has worsened.  Really thought it would be over by now. 

Sat, 11/03/2017 - 08:58
Mr Git
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Hi David

Have you previously called the Helpline?

It might make sense to do this and describe your symptoms to someone with experience. One possible option is that you may be experiencing what we call Shadowing.  However, the number of other options is vast including the possibilty that you may not have been diagnosed correctly.  It might be that they recommend you get a second opinion from one of 'the good guys' on the list of recognised consultants located around the country.

In the meantime, if it is Shadowing then the Demand Valve would be your best friend.

Best of luck with it.

Sean

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Wed, 15/03/2017 - 21:40
DavidH 7
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Hi

I'm as certain as I can be that it is Cluster Headaches - when it was originally suggested, it fit perfectly.  I've seen two consultants since.

This time has felt different, with relatively short hideous pain and then a long time with lesser pain/shadowing.  Possible I'm mis-remembering though as I go into a sort of denial about Clusters. 

I think this time has gone on longer than usual, fitting with the suggestion above that the gap gets longer but so does the episode.

 

Fri, 17/03/2017 - 11:20 (Reply to #22)
ElizabethK
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David,

There is also the questionnaire on this site "Do I have CH" you could do.  It is not a diagnostic tool just simply a guide but it might help you make sense of what is happening to you.  As Ian has said, a chat on the Helpline may help too!  01646 651979

Liz

Fri, 17/03/2017 - 12:03
DavidH 7
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Thanks - I've no doubt that it is Cluster Headache - severe pain on one side of head accompanied by agitation, remission of a couple of years, drooping of eye, blocked nostril and so on.  Only really helped by Sumatriptan and oxygen though I also quite like heat on my face.

This time has felt slightly different - less of a fixed pattern (historically, the pain has occurred at circa 0100 for a while before shifting) and it feels like it has dragged on ...

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