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Triptan tablets (Naratriptan)

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#1 Fri, 04/09/2015 - 14:45
AndreS
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Joined: 26/02/2014 - 15:14

Triptan tablets (Naratriptan)

Hi All,

unfortunately, my CH came back 2 weeks ago. I had an off-time for 2 years now. It went away when I moved to the UK (from Germany), so this is my first time with CH here.

I had very good treatment in Germany by a neurologist actually specialised on CH, and after a lot of trial-and-error we found that all tpyical preventive medication didn't work for me (or, more exactly, I experienced too severe side effects with all of them).

However, during periods of high-frequency attacks, Naratriptan tablets worked for me, because they have a preventive effect for around 6 hours, and you can take 4 per 24h.

The GP wouldn't give me a prescription for those, because they are not listed for CH treatment. Instead, she insisted to refer me to a neurologist first, so that he can prescribe those. I still have to wait until early October for this appointment...

My question is whether you have any experience with getting Naratriptan as CH sufferer? Is it easy or difficult to convince the neurologist?

BTW, is there a short cut for an earlier neurologist appointment?

Many thanks in advance &

Kind Regards,

Andre

 

 

 

Sun, 06/09/2015 - 19:58
ElizabethK
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Joined: 26/02/2014 - 14:26

Hi Andre,

Sorry to hear your CH is back. Have you tried high flow oxygen? Do you know if you have been referred to a Neuro who is a Headache Specialist? You may find it helpful to give our Helpline a call 01646 651979. October is actually quite quick in the scheme of things, I doubt you would get a faster appointment!

take care

Liz

 

Sun, 06/09/2015 - 21:58 (Reply to #2)
AndreS
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Joined: 26/02/2014 - 15:14

Hi Liz,

thanks for your reply. I used to take O2, but the problem is that it doesn't have any preventive effect. It helps, but the next attack might start 30 min after I stopped taking O2. I used it only if I would otherwise be severly overdosing triptans.

I guess the neurologist is not a headache specialist. At the moment, my main goal is only to hopefully get a prescription for naratriptan. For more proper in-depth treatments, I do calculate more time, trying to find a good specialist, etc.

 

Best wishes,

Andre

 

Mon, 07/09/2015 - 09:52
Phil
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Joined: 26/02/2014 - 17:02

Using triptans as preventatives is a fairly new idea, I believe our sorely missed Mike initiated studies.
CH friendly neurologists will be more knowledgeable, and therefore more likely to prescribe unlicenced prophylactic naratriptan.
Give the helpline a call, then 'Choose and Book' a headache specialist.

Tue, 08/09/2015 - 10:10
AndreS
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Joined: 26/02/2014 - 15:14

Thanks for your reply. I may be able to get an appointment with Prof Goadsby at King's College, at least did the GP promise today they'll send a referral letter directly per email to him. However, even if he comes back to me, no idea when there will be the next free appointment...

I'll also give it a go with the helpline...

Well, it is not really "preventive", I just keep the triptan level high enough all the time. Zolmitriptan nasal spray works roughly similar for me, also giving me 5-6 hours of headache free time. The tablets last a bit longer. (Injections sometimes only 2-3 hours...)

Andre

 

Tue, 08/09/2015 - 16:22
Harrietjt
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Joined: 22/10/2014 - 12:47

Hi Andre,

Have been very interested by your posts, this one about Naratriptan 4 in 24 hours keeping the triptan level high enough to keep CH at bay, and also the one about the IV cortisol before the oral Prednisolone. I haven't heard of either treatments before, did you get those because it is the approach to CH in Germany, or have I just been missing what is going on?!

Can I ask if you are a chronic or episodic sufferer? My husband has been chronic for 7 years now and has been accepted for an ONSI at the Radcliffe. He has just had his worst phase ever with up to 10 attacks in 24 hours and neither of us able to sleep at all which was extra scary. He is just tapering of oral Prednosolone atm; it worked well dampening CH right down to no shadows and 1-3 attacks per 24 hours, but as he reduces there are signs it may errupt.

Very sorry yours has resumed.

Harriet.

Tue, 08/09/2015 - 16:39
ElizabethK
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Joined: 26/02/2014 - 14:26

Andre,

I hope you can get to see the Prof fairly soon and discuss the 02 and Triptan use etc with him - no one better to give an opinion! From what I have learned is that it is better to get on the oxygen at the first sign of a niggle and stay on until the pain has gone and then stay on for a further 5-10 mins after that, this stops any rebound attacks. Both 02 and triptans are only ever an abortive! We have to look to other meds for prevention.

take care

Liz

Wed, 09/09/2015 - 08:51
AndreS
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Joined: 26/02/2014 - 15:14

Harriet,

No, this was not the standard treatment. These were just attempts to get the CH somehow under control. The problem is that I couldn't take the usual preventive medication (verapamil, lithium,...) due to side-effects. I was treated by a consultant neurologist who is an expert in CH (and actually worked together with Prof Goadsby years ago).

I'm episodic, but in a very irregular pattern. My last bout was 2 years ago (what a wonderful 2 years), but the last bout lasted 1.5 years and was very heavy...

 

Liz,

I know, I tried quite a few preventives, but had to stop due to too severe side-effects, even before they were effective. I used to use O2 as well, but only as a last resort, because the preventive effect was too short. And I was aware that you have to continue after the pain went away, I usually continued for at least 5 min, mostly 10 min - I even tried 15 min. But still, the headaches came back sometimes already after 30 min or. But to be fair, it was a horrible bout with one attack after the other...

Andre

 

Wed, 09/09/2015 - 09:57
ElizabethK
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Joined: 26/02/2014 - 14:26

Andre, 

Sadly, it sounds like you were suffering from repeated rebounds with the oxygen - not your fault as you were unaware! It also it could have made that particular bout much worse! Would you try 02 again? If you get on it as soon as you feel a niggle and stay on for 5-10 mins after the pain has gone it stops it coming back in 30 mins etc! Could be worth a try!

PF wishes

Liz

Wed, 09/09/2015 - 21:17
AndreS
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Joined: 26/02/2014 - 15:14

Liz,

thanks for your advice, but I basically tried it like this. O2 at first signs, and continuing quite a while after the pain disappeared. And I had good equipment (well fitting non-rebreather mask, set to high-flow,...). 

The problem is that when the bout is severe, I get headaches as soon as the treatment wears off. Same with zolmitriptan nasal spray. I have pain, take a spray, after 5-6 hours the pain comes back. With sumatriptan injections, the preventive effect wears off sometimes already after 2-3 hours, and the pain comes back. I have no "rest" in between attacks, unless I'm on triptans. And the oxygen just doesn't last under these severe conditions.

When the bout was less severe, it had better effect, and often it was not coming back...

Yes, of course I will probably get O2 again. And if only to treat attacks when I'm far beyond my daily dose of triptans...

Andre

Wed, 21/10/2015 - 20:36
John S
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I have recently tried Sumatriptan tablets for the first time. 

As an episodic sufferer I have been a user of both Oxygen and Sumatripton injections. However sometimes for a few days when my attacks are severe I am awoken in the night after about an hour with an attack. Our Ouch late Chairman Mike suggested that taking a Sumatriptan tablet before bed can help prevent thiis. I have given it a go and yes for me it does prevent an attack and enables a good nights uninterrupted sleep.

When my attacks are severe I can get several a day. With Oxygen they return after two to three hours and with the injection six to eight hours. I do use the Oxygen for a good 15 minutes after the attack has gone. Interestingly I tried a 50mg Sumatriptan  tablet after aborting an attack with Oxygen and I was pain free for another 8 hours, the same time for me as an injection.

This condition affects us all differently as does our response to treatment, Oxygen is and always will be my treatment of choice but I thought this may be of interest to some.

 

 

Wed, 21/10/2015 - 18:14
Harrietjt
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Joined: 22/10/2014 - 12:47

Very very interesting. Thank you.

Harriet

Thu, 22/10/2015 - 01:34
darren h
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hi john, im cronik ch and have tryed a few preventatives with no joy, was not offered this but mite be asking in the near future, all the best d

Thu, 22/10/2015 - 06:15
John S
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Joined: 26/02/2014 - 14:41

Hi Darren,

i do hope it works for,you. As you probably know Sumatriptan is an abortive and the tablets are not one of the medicines listed for treatment for Cluster Headache. The reason for this is that in tablet form it is too slow for the body to absorb to abort an attack. Doctors are thus sometimes reluctant to prescribe them. However using them to give a short preventive effect of a few hours has worked to give me the sleep I need when the condition is at it worst. Combined with Oxygen a good treatment for me and I never exceed two doses of Sumatriptan in any form in 24 hours.

Good luck

John

 

 

Thu, 22/10/2015 - 13:49
darren h
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hi, yes i know that and ive got the injections and o2, as per 2 in 24 hours, would the tablet count as an injection? i feel like a card player trying to work out the best hand to get pain free sleep, anyone want to raise me a nose spray? just walked dogs and dam its beutiful autum out there love the colours, dh 

Fri, 23/10/2015 - 16:39
John S
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Joined: 26/02/2014 - 14:41

Darren, the advice from my doc for the tablets was no more than 2 in 24 hours and to treat the same as an injection, so no more than two doses of sumatriptan in any form in any 24 hours. If I have oxygen available then I rarely use Sumatriptan it's mainly when I need to be out of the house that Sumatriptan is best for me and now of course the tablet at night during severe periods. John 

Sat, 24/10/2015 - 16:47
duetto
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Joined: 26/02/2014 - 14:54

I just worry if the gp see's your taking the tablets he may opt to scrap the jabs saying your are doing ok on the cheap tablets.

Tue, 27/10/2015 - 03:44
John S
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Last seen: 8 months 3 weeks ago
Joined: 26/02/2014 - 14:41

I agree it could be an issue with those doctors who know very little about this condition apart from the financial aspects. However as we know the tablets are not a recommended treatment for Cluster Headaches and would be the basis for any patient challenge. I have in any event ensured the reason for the tablets is cclearly spelt out on my medical record. At the end of the day we should not allow poor doctors prevent us getting the treatment we need.

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