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#1 Mon, 02/06/2014 - 09:04
pandadee
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Newbie looking for advice

Hi everyone. I'm Dianne and all new to cluster headaches. I'm looking for some advice on medication and what to do when it doesn't work. 

I was diagnosed 3 months ago by my GP and put on verapamil and to take zolmitripan at the onset of an attack. Had a few episodes since been on the medication. However yesterday nothing worked. And I'm still in pain. Also the Zolmartipatan states do not use if previously had or possibly had I stroke. This I have had, so is it safe?  I have so many questions but no one to ask. Trying to get an appointment with a GP today. 

Any advice would be greatly appreciated. 

 

 

 

 

Mon, 02/06/2014 - 10:43
Phil
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Hi Dianne and welcome to the forum; but sorry you have to be here.

The medicines we use have been referred to as industrial strength.

Give the helpline a call,

preferably before you visit your Doctor, so that you know what you need to ask.

_________________________________________________________________________ Yeah I know, my coat's already on.

Mon, 02/06/2014 - 10:50
pandadee
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I seen a doctor about 20 after I posted. Total waste of time. I was asked why I didn't take another dose of medication. I didn't know I could. Wouldn't answer any of my questions. And was looking up on computer. I was told to take paracetamol and to stand in fresh air. 

Can't believe the pain I'm in and he spoke to me like I was stupid. 

Mon, 02/06/2014 - 16:33 (Reply to #3)
ElizabethK
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Hi Pandadee,

So sorry to hear you are suffering like this, please phone the Helpline 01646 651979 and leave a message and someone will get back to you. 

take care

Liz

Mon, 02/06/2014 - 20:32
Val
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Dianne,

I would suggest you speak to your pharmacist about whether or not it is safe for you to take zolmitriptan as you have had a stroke, the pharmacist is better informed than your GP about safety factors and side effects and stroke is a contra-indication with triptans.  In any case you should only take two doses in 24 hours.  Go back to your GP practice and ask to see another of the doctors and ask for referral to a headache specialist neurologist who will recommend treatment to your GP and monitor you progress.  Your GP can also prescrive oxygen for you, you don't need to wait to see a consultant to get it, there is special provision for CH sufferers in the home oxygen arrangements.  Just download the Home Oxygen Order form from the downloads section of the OUCH website, take it with you to your GP and ask him to complete it.  The surgery then fax off the form to the oxygen supply company and they then contact you direct to arrange delivery.  If you see the same GP and get treated as you were today, then we would suggest you might want to make a formal complaint to the practice manager, you have been diagnosed with CH and you should have access to the appropriate treatment and your GP should also take the time to make sure the drugs prescribed for you are suitable and are not contra-indicated by a health condition.  There is much useful information in the Patient Information leaflets in each box of medication.

Val.

Tue, 03/06/2014 - 12:47
Phil
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Paracetamol??
Rip his eye out and make him eat it.

_________________________________________________________________________ Yeah I know, my coat's already on.

Wed, 04/06/2014 - 20:02 (Reply to #6)
Mike
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What his eye or the paracetomol? If it's the paracetomol, surely you cant swallow them if you want it work for CH:~

 
 
 
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Thu, 05/06/2014 - 12:47
Phil
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Neither help with CH. But your next doctor,
just a wink and a nod and you'll have the correct medication.
Smile

_________________________________________________________________________ Yeah I know, my coat's already on.

Fri, 06/06/2014 - 11:02
sore eye si
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hello am new on here am a ch sufferer of 15 years , my cycle is every 18 to 22 months an last 2 to 3 months , i suffered 10 years no sumtripin, cos as we all know  THERE TO EXPENSIVE to give to us, i never even new about sumtripin until i met sumone who suffered ch an she told me about it , an lucky she did i was at my wits end, so eventully after me begging an telling my doctor i was suicidle he give me it, but ive had sarcasm off my gp s [been told am over the top, wasting there time] any one had same treatment, as i had it  again this mornin, an it annoys me that they think am over the top [ id like to see my doc have a level 10see how OVER THE TOP HES IS MORON] an full of anger over way am treated, an they should not be called headache as it gives off wrong impression from start, i really could go on all day about it but gettin a ch now .thanks for readin

 

Fri, 06/06/2014 - 11:31 (Reply to #9)
Mike
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Hi Si,

You got here at last. Very many GPs refuse the correct treatment on the cost grounds, although they rarely tell you it is a cost factor. Have you been diagnosed by a consultant. Does your GP recognise that you have CH? If you have been diagnosed, ask your GP to look up  in his BNF 4.7.4.3. (He'll know what this is)This will show him the treatment for CH. If he still refuses to give you the medication in the BNF, and I can promise you ordinary painkillers including Morphine dont work, call your local Clinical Commissioning Group (CCG) Google it, and ask the prescription advisor for some help. If you are not yet diagnosed ask your GP for a referral under "Choose and Book" which GP's have to legally comply with and then you can choose a specialist anywhere in the country to get a definitive diagnosis.

 
 
 
Chairman OUCH UK

Sat, 07/06/2014 - 21:06
sore eye si
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hi mike , yes i am diagnosed by gp an neoroligist an others , its gp they still think there nothin , he gave me 3 sumtripin friday had half yesterday ended up a an e last night  with chest pains got tested for heart attack , its 20.57 sat night i got one shot off sumtripin left [ that will be gone in 4 hours as that how often i need them ,] an now an just terrified about tomorow,  , i realy cant take the pain cant even think about tomorow no relief, let alone havin to go gp monday an wait for presciption,

Sun, 08/06/2014 - 17:24
Mike
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Si, if I have read your message correctly you seem to be using Imigran injections every four hours. The rule is no more the two in 24 hours. They are very heavy duty and will put a massive strain on your heart with serious implications if you use too many . I am sure your neurologist would have told you. I assume you are also using high flow Oxygen too - Yes?

 
 
 
Chairman OUCH UK

Sun, 08/06/2014 - 18:23
sore eye si
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yes you,ve read cocectly mike , an yes i know the risk ,,, but mate sometime heart attack better i think , i,ve ad a relly bad day today to mike , its a long story but it ended with me crying in asda pharmacy mate ,, its really taking its toll , , my doctors a proper knob ask for oxygen but i am over the top arn,t i , told you all i get from doctors is srcasm,, an i really am appriciate the advice an chattin at least sumone understnds ,,

Sun, 08/06/2014 - 18:27
sore eye si
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but mike an going docs in morn with your advice to try get oxygen again

Sun, 08/06/2014 - 22:54
Mike
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Si, your GP may not admit it to you but he probably wont know how to prescribe Oxygen for cluster headache amd will make an excuse why he cant let you have. There are no excuses. I suggest you print off the HOOF form. Not sure if your area is using the old HOOF or the new HOOF. Search for HOOF on the top right hand of the OUCH home page and print everyting off that says HOOF and take it with you to the GP. You must have oxygen, please, please be careful with the Imigran. We all know how you feel, when you're having yet another attack  you really dont care what you take, anything to get rid of the pain.

Good luck with the O2

 
 
 
Chairman OUCH UK

Fri, 31/10/2014 - 09:23
Jazzioooo
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I went to gp yesterday for a hoof form, receptionists laughed at me and said I cudnt prescribe myself! Told them I have been told by my consultant to get this form albeit from the OUCH website but thought it wud be easier from docs as I don't have a printer.

they said because my consultant hasn't sent a letter that they advise me to have oxygen then I can't have it, this is causing me lots of stress( a trigger for CH) and now stuck about what to do

Moo-cow

Fri, 31/10/2014 - 13:14
Phil
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Doctors hey?
-and STILL we're not allowed to kill them.
Ooh, the injustice.

_________________________________________________________________________ Yeah I know, my coat's already on.

Tue, 04/11/2014 - 10:02
Mike
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"they said because my consultant hasn't sent a letter that they advise me to have oxygen then I can't have it, this is causing me lots of stress( a trigger for CH) and now stuck about what to do"

 

This is not correct, of course they can prescribe Oxygen for Cluster Headache as indeed they have always have. What they cant do in some parts of the UK is to prescribe ambulatory (the small cylinders.) These are prescribed by specialists.

 

I would strongly suggest you call your locall CCG (Care Commissioning Group) or as they were know PCT. You'll be able to Google them. Try and speak with the prescriptions "person"

 
 
 
Chairman OUCH UK

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