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New member with medication/general questions

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#1 Fri, 20/06/2014 - 23:54
bob brown
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Last seen: 2 years 2 months ago
Joined: 20/06/2014 - 22:56

New member with medication/general questions

 

Hi, and thanks for this web site!

I have recently been diagnosed with ch and by what im reading been very lucky so far, prescribed injetion Sumatriptain straight away and was given oxygen (low flow) straight away.

The injections work very fast and my GP is happy to send me away with them (thats the lucky part!)

the oxygen is too slow, so i have asked for high flow, i was refered to a nurologyst today and was expectiong to get o2 from that meeting but have been sent home with Pizotifen tablets to take for a month.

Having just read about them (havent taken them yet) it looks like they are low on the list of usfulness and some say they are even un proven!

this feels like a step backwards, dose any one here use them and what to you find? any use?

Also my Ch dont seem to fit the pattern of most of what im reading, I dont have them every day, so far in 6 weeks i have had 4 attacks which were at the level 8 (Kip scale) and 1 week free of any headaches and the rest of the time about each other day ranging from level 4 - 7, i have also had a normal migraine throwen in there too....

All symptoms point to it, but pattern seems a bit off are anyone else getting iregular "clusters?" dose everyone have some kind of pattern?

Well sorry that was an epic post..... any advice welcomed

(I am Dyslexic so excuse and get used to my spelling/gramer ( = )

 

I am Dyslexic so please excuse and get used to my speeling and gramer mistakes ( =

Sat, 21/06/2014 - 16:33
ElizabethK
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Last seen: 1 week 2 days ago
Joined: 26/02/2014 - 14:26

Hi Bob,

Welcome, sorry you need to be here. Can I ask who diagnosed CH? Was it your Neurologist or your GP? Really pleased you have oxygen and the injections.  The oxygen tanks that come to you should have a gauge on them to allow you to turn it up to 15 (this means high flow).  You also need the right mask which is a non rebreather, please look at our downloads section for information on how best to use oxygen.

Pizotifen is a preventative for migraine and will have no effect on your CH, it can however cause weight gain. You might find it helpful to give our Helpline a call 01656 651979 and leave a message and someone will get back to you, as sometimes it is easier to chat about things on the phone than post loads of questions for you on here.

take care

Liz

Sun, 22/06/2014 - 00:41 (Reply to #2)
bob brown
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Last seen: 2 years 2 months ago
Joined: 20/06/2014 - 22:56

Thanks Liz I will cal the number.

It was my GP and then the Nurologyst who diognosed.

The Oxygen i was given is the wrong kind of bottle, it only goes upto 4, my GP wasnt sure about it but they had one i could take there and then and thought it was worth a try, i was given this the day i was diagnosed, getting the high flow seems to be a bit harder for them to arrange.

Not good news on the Pizotifen then....

I started them last night and feel really drowsy all day, i wouldent drive in my current state. My heart readings were a bit low so Nurologyst didnt want to prescribe the more common preventative mediceine (forgotten its name at moment) so they went for this stuff. i will be calling my GP on Monday.

 

I am Dyslexic so please excuse and get used to my speeling and gramer mistakes ( =

Mon, 23/06/2014 - 09:08
Mike
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Last seen: 5 years 3 months ago
Joined: 21/03/2012 - 12:43

Bob, please dont bother with the O2, it will be absolutely useless at 4 lpm.As Lis has said we use O2 at up to 15lpm (High Flow) and indeed up to 200lpm (ultrahighflow) for even more effective treatment. Can't think why the neurologist suggested Pizotifen for CH. Really strange :?. I guess that the preventative suggested was Verapamil. I would strongly suggest you call the helpline there are a few questions that are needed to clarify your condition. 

Mike 

 
 
 
Chairman OUCH UK

Tue, 01/07/2014 - 14:07
Amethyst73
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Last seen: 1 year 2 months ago
Joined: 01/07/2014 - 12:43

SORRY FOR LONG POST IT'S MY 1st 

Hi my first ever post last yr was getting really bad headaches at time would feel like would do anything to make them stop went to gp given migraine medicine then started to notice my left eye was swelling & the pain was so bad called out of hrs by time they saw me said must be a allergey then this continued eye streaming the swollen eye each time was told here is some periton said about the pain was told just stress when I went to see my gp in Sept 2013 she was off so saw a different gp who saw my high need for migraine meds & also trips to out of hours so asked me a set of questions when he printed the sheet on cluster headaches mine are chronic was so relieved am it seems lucky as was given oxygen therapy which now means portable as when do venture out it makes life a lot easier was also given Sumatriptan injections & also a an sale spray have been coping alone as only family is my dad who panics & worries that makes me worse with guilt so played it down for him my brother doesn't care or want to know about headaches as also have (let's see if get this right) Bi lateral Chornic Patellofemoral arthritis so my brother said "sis it's a headache stop being a drama queen" so after that knew needed support so got the courage to join this site I knew about clusters had read about people getting so bad at times would smash their head off a wall thought mine are bad but maybe not that bad till Christmas my meds were not delivered & it hit me I got to that point of smashing my head against cold bathroom wall I have never known pain like it after over 20yrs of knees dislocating & me putting back operations etc nothing in the world could describe how I felt those 36 hrs with out any medicine just curled up like now & cried I feel stupid for crying now as last cluster was a few hrs ago but having district nurses that come every day to do my pain patches saying get out enjoy sunshine I wish I could having CH has changed so much have Atos appointment Friday but they don't recognise CH so was told couldn't put it on form the thought of sitting there & having an attack scares me as still all so new was told to see a neurologist but after reading others & people on sites treatment wonder if should stick to my fab gp only time I get frustrated with them is when I had a CH & seemed to not really go away for 5 days said stick to meds you can't take anymore your on oxygen & that was it so now I use injection which is to me like my pain meds great quick acting but soon wears off so use nasal spray & oxygen am on 10ltrs but on a re breathable mask find mix of nasal spray & oxygen & a great pillow to squeeze & talking to cats (I know daft but every attack they both sit near me & purr its comforting as live alone having bad Kness saw off any chance of meeting a man one look at walker & they run sadly I can't run after them) so that's how I cope meds,pillow & kitty's so great to have a site that is there to see am not alone & am not being a "Drama Queen" am so thankful for the charity ouch & the support it gives.

 

Wed, 02/07/2014 - 12:43
Phil
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Last seen: 3 years 10 months ago
Joined: 26/02/2014 - 17:02

Hi.
You need a non rebreather mask at the very least.
Get a referral to a neurologist that specialises in primary headache disorders.
Your doctor sounds helpful, but so do your cats.
ATOS know nothing; Cluster headaches are a disability, put it on the form.
Most of all, ring the helpline, they'll call you back and help you with what you and your doctor need to do.

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

Mon, 07/07/2014 - 17:22 (Reply to #6)
Mike
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Last seen: 5 years 3 months ago
Joined: 21/03/2012 - 12:43

You also need to call the helpline 01646 651 979.

 

Leave a message and somone will call you back

 
 
 
Chairman OUCH UK

Tue, 08/07/2014 - 13:15
Phil
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Last seen: 3 years 10 months ago
Joined: 26/02/2014 - 17:02

We cannot stress "Call the helpline' enough.
Ring them.

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

Tue, 08/07/2014 - 15:47 (Reply to #8)
Colin Allen
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Last seen: 2 weeks 2 days ago
Joined: 21/03/2012 - 15:19

Done.

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