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Hi from a new member / medication question

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#1 Mon, 19/05/2014 - 16:48
daveb
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Last seen: 2 years 3 months ago
Joined: 16/05/2014 - 13:15

Hi from a new member / medication question

Hi folks,

I'm new to the site but have had episodic CH for about 8 years or so, I am now 34. I was only diagnosed by a GP and prescribed Imigran injection during my last cycle, which was about 20 months back now. I usually get a cycle every 9 to 12 months which lasts for about 4 weeks with one attack every 2 days (about 1 to 1-1/2 hours each). Having read some of the posts on here, I think I have it relatively easy compared to a lot of people.

After my GP's diagnosis in 2012, I didn't think too much about it until the attacks started again a couple of weeks ago.

One problem with Imigran for me is my work - I work on oil rigs, sometimes for up to 4 weeks at a time. With no diagnosis, I had no meds (I found out farily early on that tablets were useless!) and just had to just shut myself away somewhere until the attack had passed. Now that I have Imigran, I have the problem of trying to get enough from the GP that I have sufficient supplies to last 28 days, and (assuming I could get that much) also trying to travel with that amount of injections abroad and offshore.... 

Are there other medications for aborting an attack other than Imigran or O2? I have heard mention of a nasal spray of some sort. Does this come in larger packs than the 2 doses you get with Imigran (i.e easier to travel with)?

The other thing is that this cycle seems to be all over the place. Previously, the attacks were regular as clockwork every 2 days with nothing in between but this time I seem to be getting several very small attacks a day with the pain only lasting a minute or so (the pain is the same as normal but passes incredibly quickly), and then a full blown attack anywhere from every 1 to 3 days but the timings are completely different from day to day. Is it usual for CH to change like this from one cycle to the next?

Apologies for so much stuff in one post, I'm very much in the dark about a lot of this!

 

Thanks,

David

Mon, 19/05/2014 - 22:30
ElizabethK
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Last seen: 17 hours 35 min ago
Joined: 26/02/2014 - 14:26

Hi Dave,

Welcome to the OUCH family just sorry you need to be here.  Please give the Helpline a call 01646 651979 and you will be able to speak to another sufferer and get some great advice.

Sounds like you need to see a Neurologist who is a Headache Specialist to help things along, a call to the Helpline will help you find one nearest to your area.

make that call, take care

Liz

Wed, 21/05/2014 - 10:35
Val
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Last seen: 1 week 2 days ago
Joined: 21/03/2012 - 15:16

Hi David

Another thing, to get your GP to prescribe more of the injections, call the Prescriptions Adviser at your local CCG (Clinical commissioning group, used to be PCTs) and explain that due to the nature of your work you need to be able to have a larger number of injections per prescription.  We know some sufferers who have 30 injections at a time and I had no difficulty arranging three months supply for a trip to Australia last year.

The changes in your headaches might indicate a different headache condition to CH, but which is very similar except in one respect and you would need to see a neuro in any case to get a confirmed diagnosis for either condition, as they are treated differently; I would suggest seeing your GP and requesting an appointment with a headache specialist neurologist.  If you live in  England you can see a consultant of your choice even if it is out of area under the NHS 'Choose and Book, Choice at Referral' scheme.  So let us know whereabouts in the country you are and we can suggest a name.

You don't mention a preventive, but for a good preventive to be prescribed, you first need a confirmed diagnosis of which condition you have. 

the only other abortive for CH attacks is currently being trialled by OUCH members, its a hand held electronic device which emits a pulse to abort an attack.  If you want to take part let us know and we'll tell you how you can go about it.

Val. :)

 

Fri, 23/05/2014 - 15:14
daveb
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Last seen: 2 years 3 months ago
Joined: 16/05/2014 - 13:15

I was referred to a consultant by my GP when he made the diagnosis a couple of years ago, but unfortunately I really had no idea what CH was (and I'm embarrassed to say didn't make any effort to find out, as I had no more attacks after I saw my GP). The consultant ordered an MRI scan to rule out other problems but he didn't give me a firm diagnosis or discuss treatment for CH, saying there wasn't much point as it only affected me for a few weeks every 9 months or so. In hindsight, I should have pursued it.....

I am going back to see the doctor next week, and I will ask about getting another referral. I will also give the helpline a phone next week when I am able.

Val - I am in Scotland (Aberdeen to be precise), so I don't know how that affects which consultant I can choose to see. From what I understand, we do not have PCTs or CCGs in Scotland, so I will ask my GP how to get more Imigran prescibed. I also think the intermittent stabbing pains I am getting sound more like 'shaddowing' than actual (short lived) headaches but I will see what my doctor says.

I would gladly help trial the electronic device if I am able to.

 

David

Sun, 25/05/2014 - 21:03 (Reply to #4)
tangerinearmy
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Last seen: 5 years 7 months ago
Joined: 26/02/2014 - 14:34

make sure you see a different neuroligist,  as the one you saw last time is useless and you will be waisting valuable time.

Mon, 26/05/2014 - 13:05
Val
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Last seen: 1 week 2 days ago
Joined: 21/03/2012 - 15:16

Dave

Check your private messages re the electronic device.

You really need to see a headache specialist neurologist, because the stabbing pains you get may not be shadowing - its not beyond the bounds of possibility that you have more than one headache condition, we have a few members who have two or three headache conditions.  Shadowing is really a loose term for low-grade background headaches, or a feeling of pressure in the head, or sometimes just the autonomic symptoms (blocked nose, watering eye etc) without the full-blown pain of a CH attack.  So it is important that you ask your GP to refer you to Dr Tyagi at the Southern General.  He sees NHS patients from all over Scotland.

Val.

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