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OUCH(UK) Organisation for the Understanding of Cluster Headache

New to ouch but not to clusters. Needing support.

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#1 Fri, 17/03/2017 - 19:03
SMG
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Joined: 17/03/2017 - 18:44

New to ouch but not to clusters. Needing support.

Hi all,

I am an episodic cluster headache sufferer, diagnosed by two specialists now having had this disorder for 5 years. My pattern tends to be every year and a half to two years I get hit with about 3 weeks + of attacks. 

I have all the necessary medication - 120mg of verapamil daily, oxygen tanks and sumatriptan injections/nasal sprays.

I am now coming up to the end of week four of cluster headaches this year and whilst they have decreased from three a day to one a day I don't think they are going to stop anytime soon.

I guess I'm just looking for support regarding the emotional side of this. I've been off work for four weeks, barely been getting out of the house and its leaving me very upset with life. I feel like these headaches are wrecking everything - I want to be in work and I'm gutted that I can't be, I'm a teacher so It feels like I'm dumping on everyone when I'm out of work. I've not seen my friends for a long time and I feel like my partner is constantly having to look after me. 

I just want to return to normality. This is really taking its toll on me.

Any advice would be appreciated.

Fri, 17/03/2017 - 20:49
DavidH 7
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Joined: 26/02/2014 - 15:13

Hi

Sorry to hear this ... I'm guessing it's a situation many here will recognise.

It sounds like you are doing the right things, treatment-wise. 

I manage to get to work 10 or so weeks out of 12.  However, I do stop driving and we have agreed "rules" about what I can and can't do when in pain or medicated (as I believe both affect my judgement).  I guess it makes lots of sense for a teacher not to be in work, though, for lots of reasons (including being seen with a CH by students).

It may be worth phoning the help-line (I found just hearing from another person who *understood* useful) for other ideas.

D. 

 

Fri, 17/03/2017 - 21:01 (Reply to #2)
SMG
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Thanks for responding, How do you manage to get into work if you don't mind me asking?

I keep trying to when I have a good day, but I had an attack at the school and got sent home. How do you manage to stay awake after the attacks? whenever I have one I literally pass out afterwards/feel really out of it. Although my school are supportive, I was told the other day in a not so subtle email that I should not attempt to come in until they stop as a matter of staff wellbeing. 

I guess last minute cover is too much of a hassle and I know I scared a few members of staff (luckily no kids saw) when I had the attack.

How do you keep positive during your cycles? I dread the thought of these lasting any longer, and they've only been going 4 weeks for me, I don't know how some people do it when it's chronic.

 

Fri, 17/03/2017 - 21:23
DavidH 7
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I've tended to get pain at night (circa one in the morning) and this shifts over time and I'll eventually get them in the day ... and reach a point where I need to be off work.  In hindsight, I should probably have taken more time off this time to manage the pain and the tiredness.  I also think there's something about feeling exposed (in front of colleagues or students) that you have to think about.  It's better to be off than do something wrong/misjudged, generally.

I also don't know how people manage Chronic Cluster Headaches ... The thought that it will stop keeps me going.  I'm not sure I keep positive, though. 

 

Fri, 17/03/2017 - 21:33 (Reply to #4)
SMG
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Joined: 17/03/2017 - 18:44

My usual pattern in 3.30 every morning. Then again around 8ish. But lately the pattern is quite unpredictable. Every now and again I have one good day with no attacks and that's when I've been going into work, but so far I haven't lasted more than a day of being well.

And do you ever worry that they won't stop? I've read that one in ten episodic sufferers will become chronic. It's a worry that I can't stop thinking about at the minute. 

Fri, 17/03/2017 - 21:52
DavidH 7
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I've not heard that statistic before though I've pondered similar thoughts.  I'd definitely call the helpline for some advice. 

Fri, 17/03/2017 - 22:02
zanycheff
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Sat, 18/03/2017 - 09:55
Val
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Joined: 21/03/2012 - 15:16

I think as David suggests a call to the helpline would be good and also, as the character and length of your cycle has changed, I'd suggest contacting your neuro/headache nurse for advice.  I do note that the verapamil dosage you are on is very low for a CHer and further, as you have a relatively short bout, there isn't enough time to build the verapmil to a therapeutic dose level.  The usual regime is starting at 280 mgs a day for two weeks, then an ECG and an 80 mg a day increase and so on until the attacks are hopefully under control.  It could be the verapamil that is making you very tired, it is one of the known side effects and you may be taking in unnecessarily because of the shortness of your cycle, hence my suggestion of talking to your neuro.

Hope things improve for you soon.

Val.

Sun, 19/03/2017 - 02:20
moiraann
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Joined: 10/01/2017 - 17:57

Hi guys Im new on here and I phoned the helpline after a particularly bad cluster headache after a night shift. The lady who called was just lovely made me feel human. Equiped with my new facts I went to the doctors and i could see them sort of having a little issue about me. They were rubbing their heads and decided to put me on injectable Imigram after pleaing to be give oxygen as i was still in attack mode and crying at this point. Nope I was told to be happy that i had been given the injections at £25 pound each. Unhelpful !  My doctor will help me fill out paperwork for the oxygen when i see him, whenever i get to see him and hopeully refer me to a headache specialist. They laughted when i asked for a referal, I suppose that they were the wrong people at the wrong time. Work is really hard when you having such a bad time, it is better that you have the rest and get some stability in the attacks if you can and then return to work a little more balanced expecially if you are a teacher. Hope your symptoms are lessened soon.

Sun, 19/03/2017 - 08:56
Mr Git
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Joined: 26/02/2014 - 14:34

Hi Moiraann

Obviously I have no idea whether you are episodic or chronic, or how many attacks you have per 24 hours. However, a converstaion along the following lines might move things along:

"I've come here today to request medication which I am entitled to. I am using the word request out of politeness, however, none of the following is a suggestion. I would refer you to BNF 4.7.4.3 from which you will see that the treatment for Cluster Headache is subcutaneous Sumatriptan (Sun Pharmaceuticals generic version is optimum) and high flow oxygen (best administered via a Demand Valve which may be available on the NHS - depends which area you are in).

These medications are best used together when possible. However, if you have more than 2 attacks per 24 hours you are faced with a virtually impossible situation. You can only inject Sumatriptan twice in any 24 hour period. If you inject more than twice then you run the risk of inducing a heart attack. When you said I should be happy that I had been given the injections, are you suggesting that I use them whenever I get an attack even if that incurrs the risk of a heart attack? The high flow oxygen doesn't just work alongside the Sumatriptan to abort the attack, on some occasions CH sufferers have to rely upon it as their only means of pain relief. By the way, if you are more concerned about money than a patient's welfare, if you did your research you would discover that the Sun Pharmaceuticals version is cheaper than Imigran.

With regard to a referral, I would like to be referred to a Cluster Headache specialist, not just any neuro consultant."

  • Check with Val whether the Sun version is cheaper, it used to be and I suspect it still is.
  • Whilst checking, tell Val where you live and ask for your nearest neuro on the 'good guys list'.
  • With regard to work they should be accommodating your disability in the workplace including providing you with a private room to use when having an attack (where your large oxygen cylinder should be set up). I appreciate there will be complications leaving a room full of children at short notice, but that is a problem for your employers to overcome.

I would always approach a meeting with a GP with the mindset that you are only asking for what you are entitled to. I wouldn't be apologetic about it. As Mike used to say to his GP; you wouldn't expect a lady going through childbirth to do so without pain relief, why are you asking me to?

Best of luck with it.

Sean Smile

 

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Sun, 19/03/2017 - 10:34
Val
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Joined: 21/03/2012 - 15:16

Hello Moiraann

Mr Git is right, you are entitled to ask for referral a headache neuro of your choice under the 'Choose & Book, Choice at Referral' NHS scheme.  Further, NICE have now produced headache pathway guidelines for GPs with full guidance and what to prescribe.  This document should help you point out to your rather unfeeling GP practice what you are entitled to: https://ouchuk.org/sites/default/files/downloads/new_to_cluster_headache... .  You do not fill in the Home Oxygen Order Form Part A.  There is a copy of it in the Resources - Downloads section of the website.  The GP completes it and faxes it off to the oxygen company and the oxygen company then contact you to deliver it.    I know what part of the country you are in and I suggest you ask for referral to a headache neuro at  Southampton Hospital, I'm afraid we don't have a specific name, but they do see headache patients.

The Sun sumatriptan injections are cheaper that the GSK ones, but cost should not have been mentioned to you, if it is a licensed drug for your condition listed in the BNF then you should have it.

CH is indeed a disability and as such you h ave certain rights un the EHRA European Human Rights Act 2010: https://www.gov.uk/rights-disabled-person/overview

So a good read for you, then off to the GP take a copy of the HOOF form with you and the info I have linked to, and be firm but persistent until you get what you want and need.  If they refuse you still you can make a complaint to the practice and if it is not dealt with to your satisfaction you can complain to the prescriptions adviser at your local Clinical Commissioning Group; you are only asking for what you are entitled to under the NHS, the BNF and NICE.

Good luck and keep us posted.

Val

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