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OUCH(UK) Organisation for the Understanding of Cluster Headache

New and looking for advice

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#1 Sun, 16/04/2017 - 23:05
Cragrat
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Last seen: 6 months 1 day ago
Joined: 16/04/2017 - 22:26

New and looking for advice

Hi all, 

I'm a 25 year old male otherwise healthy apart from being diagnosed with CH in October. After a lot of faffing from my GP (I get the feeling they don't have a clue what to do with me!) I was prescribed Sumatriptan and Verapamil. My current dose of Verapamil is 240mg but I am still having frequent attacks. I had an ECG in preperation of increasing the dosage but my GP was unhappy with how low my resting heart rate is and reffered the results to a Cardiologist. Nearly 2 months on (!) and I still haven't had any word back from the Cardiologist. If this dose cannot be increased, what other medication is available in order to prevent attacks? I feel I need to tell my GP what needs to happen as he does not seem to know what to do with this condition. 

As for the Sumatriptan, I am taking this in tablet form when I have an attack and feel that it is taking too long to have an effect. I am also suffering from some pretty intense side effects: severe nausia, sore muscles particularly in my jaw and throat, and increased urination. These side effects last from between 4-8 hours and have made me question whether I really want to be taking this stuff However, I have found the pain of a CH to be very persuasive. Does anyone else have experience of side effects from Sumatriptan? Will switching to a subcutanious injection reduce side effects? Is there any other abortive medication that I can try that may not make me feel so bloody ill afterwards? 

I have read in a few places that CH sufferers are usually reffered to a Neurologist with a specialty in headache disorders. Is that through my GP? How easy are they to find? I live in the North West of England, can anyone recomend someone? 

 

I'm sorry about being full of questions but I am currently getting no where with my GP leading on this and feel that I need to start taking control of this before it takes control of me. 

Cheers, 

Cragrat

Mon, 17/04/2017 - 10:17
Val
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Last seen: 1 week 5 days ago
Joined: 21/03/2012 - 15:16

Hi Cragrat [interesting forum name!]

I suggest two things, first of all click on the 'Cluster Headache' on the blue bar at the top of the page, and from the dropdown menu select 'The Bascis', which gives yo ufull information on how to get a referral to a headache neuro, which is important, as they will see you at regular intervals and monitor your condition and adjust your treatments accordingly.  Second, on the same drop down menu, select 'Treatments' and you will see there the current abortive and preventive treatments available. 

Then I suggest you call the helpline to discuss any questions or queries you have, call 01646 651979 leave your name and number and one of our volunteers - all of whom are sufferers or supporters of sufferers - will call you back between 10.00 am and 2.00 pm, or at a time you state is convenient to you.  Please note all calls are returned from a withheld number.

Hope t his helps and welcome aboard! 

 

Val.

Mon, 17/04/2017 - 14:50
Cragrat
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Last seen: 6 months 1 day ago
Joined: 16/04/2017 - 22:26

Thanks for the advice and welcome Val. 

As for the forum name, I used to be an avid climber and aquired the nickname "Crag Rat", which seems to have stuck around. Smile

Mon, 17/04/2017 - 17:39
ElizabethK
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Last seen: 1 hour 6 min ago
Joined: 26/02/2014 - 14:26

Welcome from me too!  You do need to get a confirmed diagnosis from a Neurologist preferably one who is a Headache Specialist, and as Val has said a chat with the Helpline will help with this.

Mon, 22/05/2017 - 15:24
malcolmmole
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Last seen: 2 months 3 days ago
Joined: 26/04/2017 - 16:26

most of this is sound advice but I'm a little wary of "all" neuro's will see you regularly and will always help

 

I now travel 120miles to a neuro (hull) after 30yrs of fiddling about by "experts" who dulled (but not cured) my migraines and totally ignored my Cluster (I get several a day)

My last "local" neuro said I didn't have a problem as I said I was woken up or woke up with pain.... NOT a real headache, stop all medication... I did go back after a few months

I did get occipital but that put me in hospital via ambulance and his insistance that I then took dichlofenac which caused "blues and twos" for 1 1/2 litre blood "fountain" from both ends at same time (not to be recommended)

 

Stick with the treatments and report ALL side-effects no matter how small and no matter how annoying you might worry about being

malcolmmole

Tue, 23/05/2017 - 22:36
DavidH 7
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Last seen: 2 weeks 6 days ago
Joined: 26/02/2014 - 15:13

I'd recommend calling the helpline and ploughing through the forum.  Many of us have different priorities and experiences.

I tend to use Oxygen and a mixture of Sumatriptan tablets and injections - I find that I experience chest pain if I frequently use the latter.  Others prefer specific brands of the injection.

Faced with an attack I would almost always use a "treatment" but I sometimes wonder if doing so has changed the Cluster Headaches slightly (eg. shifting them to day-time).

Good luck. 

 

Mon, 05/06/2017 - 12:46
Ihpatterson
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Last seen: 1 month 1 week ago
Joined: 27/05/2017 - 17:40

My GP said "I have head about CH but know nothing about them" and offered a referral to the local NHS hospital which would have taken months. So I looked at the biographys of neurologists at our local Spire private hospital from which I chose one with a speciality in headaches and got an appointment in two days at a cost of £150.

He said that the sumatriptan in pill or nasal spray are useless, the injections work within 10 to 15 minutes and have few if any side effects- boy! Was he right!

As for prevention he recommended verapamil normally but this is a strong calcium channel blocker that relaxes the smooth muscles in blood vessels thus increasing vascular volume and reducing blood pressure. I am already on a more modern CCB (that has much less side effects) so adding verapamil would be dangerous. Too strong a calcium channel blocker results in too low a blood pressure resulting in dizziness on standing and general weakness. Verapamil has other serious side effect problems.

The alternative for long term prevention is a daily low dose of prednisolone (5 mg) with all the problems of long term steroid use. As I have clusters at long intervals between good periods of remission he suggested that in this case cure (with sumatriptan injections) is better than prevention.

To abort a cluster period ( as opposed to an actual headache) NICE have approve a short sharp dose of predhisolone (see British National Formulary).

I really recommend researching your local private facilities as my neurologist wrote to the GP who now follows his recommendations, £150 well spent.

Wed, 07/06/2017 - 10:14
Val
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Last seen: 1 week 5 days ago
Joined: 21/03/2012 - 15:16

Hello Ian

Thank you for the update.  We could have given you the names of NHS headache neuros, and under the NHS Choose & Book, Choice At Referral Scheme, you can see a headache neuro of your choice even if it is out of your CCG area.    The waiting times are as short as only a few weeks.   Also, if you read our treatments section of the website, you will see that headache neuros say the same as yours, that it has to be the I migran injections for relief of the pain.  I note he did not suggest high flow oxygen therapy, there is information on that under Resources and Downloads on the website, available for prescription by a GP. 

Verapamil is the first line preventive for CH, there are others, again you will see those in the treatments list.

We are also aware of the short course high dose steroid treatment, used by headache neuros not only to try and abort a cycle, but also to give chronic and long cycle sufferers a much needed respite. 

Good to know you have found a clued up neurologist, best weapon in the fight against CH.

Val.

Mon, 10/07/2017 - 14:28
malcolmmole
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Last seen: 2 months 3 days ago
Joined: 26/04/2017 - 16:26

I'm not surprised the gp was ignorant...

It's taken 30yrs and a few "specialists" before I found someone with knowledge.... we haven't been recognised for long.

the senior neuro in preston categorically told me it was my own fault because nobody wakes up in the morning or is awoken at night by "real" neuro pain... it was because I took painkillers.

still, hopefully you have arrived at the right time and will both be taken seriously and offered proper help

good luck

malcolm

malcolmmole

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