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Another newbie to the site

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#1 Mon, 09/02/2015 - 10:43
LouiseP
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Last seen: 7 years 3 days ago
Joined: 09/02/2015 - 10:16

Another newbie to the site

Hello all,

my names Louise and I'm 25. Last Feb I had severe headaches that resulted me being hospitalised for about a week. I had all test don't, CT's, lumbar puncture the lot and after a few days of pain and suffering I was diagnosed by the neurologist at the hospital will cluster headaches. Whilst in hospital they used sumatriptan but I had a horrible reaction to it and was violently ill and uncontrollably shaking. They didn't try it again but I have read a little bit that you can get side effects a good few times you use it. 

They sent me home with amitriptyline as a preventative and my bout lasted about 5 weeks. I had no oxygen therapy or any sumatriptan and had to try and get myself through the pain which was the worst experience of my life. I carried on with the amitriptyline and after 5 weeks by bout seemed to end and I was pain free until this month.

i got awoken Saturday morning at a friends house with the severe pain of a cluster headache. I couldn't believe it had come back after a year.. I was screaming and clutching my head and all we could do was ring 999. Paramedics came and I explained I thought it was the cluster headaches again as it was the same pain as last night but I had only had one bout a year ago. They tired morphine.....didn't work. After 1 hour 10 minutes the pain started subsiding after the help of oxygen at the hospital. I got discharged with nothing but antis iciness from the hospital (the pain makes me violently sick) and to ring them if it happens again. They were pretty unsure about cluster headaches and didn't want to do any further investigations on me, they wanted to free up my bed.

Anyway since then I've had what ive thought to be shadow headaches. Still down my left side behind my eye causing a runny nose and a big puffy eye. They have come and gone all day yesterday and then was woken up this morning at 5am with another 40 minute killer of a headache behind my eye. I could sit down I was bashing my head and just wanted to pull the pain out, I rang 111 and we ran into some problems as I've recently moved (a week ago) and don't have a GP, so I've had the day off work (which is hard for me to do as I work agency and don't get paid if I don't go in) and registered at the GP. 

I have an appointment this afternoon and I am hoping the GP is knowledgeable about cluster headaches as I don't want to leave the practice without a prescription for something to help me over what might be a hellish few weeks. I just need some advice because this is only the 2nd time this has happened to me, same time last year.

its really effecting my day to day life as after a big 10/10painful headache I can't do anything after as I feel exhausted and like I've been run over by a bus. I've been reading this forum and you all sound so knowledgable and supportive and I just need a bit of help as I can't let this control my life! 

Thank you, Louise x

LP

Mon, 09/02/2015 - 12:36
ElizabethK
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Last seen: 1 week 2 days ago
Joined: 26/02/2014 - 14:26

I have spoken to Louise this morning.

All the best at GP's this afternoon Louise, let us know how you get on.

Take care

Liz

Mon, 09/02/2015 - 13:55
LouiseP
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Last seen: 7 years 3 days ago
Joined: 09/02/2015 - 10:16

Hi Liz,

so ive just had another very bad CH, lasted about 30 minutes this time and again all I could was shout, squeeze, bang,do anything. This GP appointment couldn't come sooner. However this time I'm feeling really muzzy headed and drowsy and the ache behind my eye has stayed there. Is this normal?

thanks,

Louise

LP

Mon, 09/02/2015 - 16:57
ElizabethK
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Last seen: 1 week 2 days ago
Joined: 26/02/2014 - 14:26

Hi Louise,

This sometimes happens, not all attacks let go immediately. I am sure others will post here soon with their experiences.  Again put all this in a diary for when you see the consultant we spoke about.

Hang in there, take care

Liz

Mon, 09/02/2015 - 17:37
oxfordgarage
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Last seen: 8 years 11 months ago
Joined: 29/01/2015 - 18:18

Louise Ijust had an attack at 4.0 pm at work as well........Yes it is normal to sometimes have shadow headaches so don't worry its a nightmare. Be strong and hope you get sorted at doctors with the oxygen.

Mon, 09/02/2015 - 18:33
LouiseP
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Last seen: 7 years 3 days ago
Joined: 09/02/2015 - 10:16

So I've just got back from the doctors and I am so happy!

She was quite knowledgeable about CH and has 2 other patients that suffer with them too. We discussed  my reaction to triptans and she agreed that we stay very clear of them, much to her regret as she knows how well they work. We had a chat about the oxygen and she was very keen for me to have it ASAP. At first she explained about how hard it was to get until I referred her to your website and it was like a revelation to her. She couldn't believe she didn't know about the downloadable form you had available. She downloaded it and filled it out there and then and gave it to her secretary in my presence. She said it was too late to get for tomorrow's order but oxygen should be delivered to my house by Wednesday. I couldn't believe how easy she made it. She was lovely. 

We also talked about a referral to neurologist to talk about preventative medication and she knew of a neurologist who suffers with CH so would like to refer me to him. So I think in all it was a very successful visit.

My boss has been amazing, I'm staying off work until Thursday so at least I can be here for the delivery, I've also bought some red bull....no harm in giving that a go as well? Could work for me.

Thank you so much for your support on this forum and Liz, our phone call really helped I wouldnt have known what to do really if I hadn't spoken to you before hand. Thank you again! 

Louise x

LP

Mon, 09/02/2015 - 19:59
ElizabethK
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Joined: 26/02/2014 - 14:26

My pleasure Louise, so pleased, what a great result!

Tue, 10/02/2015 - 02:38
Phil
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Last seen: 1 month 1 week ago
Joined: 26/02/2014 - 17:02

It's a strange coincidence that "Red Bull gives you wings"
and the Angels on the helpline drink it.

A neurologist with CH?
Santa must've got my letter.
How many Doctors did he afflict?
}:)

Tue, 10/02/2015 - 07:14 (Reply to #8)
Dorothy Trustee
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Last seen: 1 week 3 hours ago
Joined: 19/02/2014 - 10:16

What a great Dr you have Louise! She will make all the difference to your coping with this horrible condition. When you get your oxygen you'll feel much more in control. All the best.

Dorothy

Dorothy (Trustee)

Tue, 10/02/2015 - 09:13
ElizabethK
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Last seen: 1 week 2 days ago
Joined: 26/02/2014 - 14:26

Hi Louise,

Have a look on this site as there is a lot of info about oxygen and how to get the best from it. If you have any questions don't forget you call the Helpline and ask!

take care

Liz

Tue, 10/02/2015 - 15:16
oxfordgarage
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Last seen: 8 years 11 months ago
Joined: 29/01/2015 - 18:18

Glad you got sorted!!! Red bull did'nt work for me!!!!

 

kieron

Tue, 10/02/2015 - 21:09
LouiseP
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Last seen: 7 years 3 days ago
Joined: 09/02/2015 - 10:16

Oxygen arrived at 8 pm tonight, just over 24 hours after seeing the doctor. Couldn't be happier, such a weight off my mind. Delivery guy was great, very informative and he sees CH sufferers every week so was very empathetic. Let's hope I don't need it too much over the next few weeks.....

LP

Wed, 11/02/2015 - 06:20
LouiseP
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Last seen: 7 years 3 days ago
Joined: 09/02/2015 - 10:16

So last night....2 attacks, one at 2am and one at 4am. Oxygen worked wonders and pain free after 10 minutes, I was so happy. However....I didn't manage to get back to sleep after the 2am one and still currently awake at 6.20am. Luckily I don't have work today thanks to an understanding boss but I will be going back tomorrow. Any advice or tips how to get back to sleep after an attack?

LP

Wed, 11/02/2015 - 08:17
Dorothy Trustee
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Joined: 19/02/2014 - 10:16

Hi Louise

I'm delighted you got the oxygen! You could try taking Melatonin before bed. I had to get mine online from Biovea as a lot of GPs won't prescribe it here. Yours might though, it's worth asking. It's normally used for jet lag but often works for keeping night time attacks at bay. I tried it for the first time this cycle and although I had mixed results, if I did have an attack, I was very sleepy and dozed right off after the attack was aborted. 12 to 15mg is the recommended dose for CH but you could just see what works for you.

Good luck!

Dorothy

Dorothy (Trustee)

Wed, 11/02/2015 - 12:57
oxfordgarage
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Last seen: 8 years 11 months ago
Joined: 29/01/2015 - 18:18

Louise

I know exactly what you mean ! I am getting about 6 to 8 attacks a night at the moment alway about one hour after I have fallen asleep I am woke with the beast and oxygen knocks it off after about 15 minutes on high flow 15 to 12 litres. I fall asleep again after the attack only to be bloody woken with another after 1 1/2 hours. So not getting a good night sleep I,m afraid.....been every bloody night since December 28th. My last cycle lasted 2 months! Cluster headaches are all body clock related we believe thats probarly why most CH sufferers get them at night time. I am taking melatonin but does seem to help headaches but it may help you get to sleep after an attack so worth a go. The worst thing for us lot is the fear of going to sleep knowing full well that you will get a visit from the beast so it really knackeres your body clock!

Kieron

Glad oxygen worked!

Thu, 12/02/2015 - 16:43
Phil
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Last seen: 1 month 1 week ago
Joined: 26/02/2014 - 17:02

Obviously, speak with your doctor first:
We don't know anything about your severe reaction to sumatriptan
and, although OUCH are very knowledgeable and expert, none are doctors.
There shouldn't be a problem, but if you've got the good doctor, may as well keep her updated.

Sun, 15/02/2015 - 10:14
Val
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Last seen: 2 weeks 15 hours ago
Joined: 21/03/2012 - 15:16

On the point of night time attacks, generally speaking they occur within an hour and half or so of falling asleep, at the point where REM sleep cycle kicks in - and also, we have recently been told, when the body's blood sugar level drops.  Some sufferers to have an almost clockwork regularity to their attacks, others like me, the attacks can come any old time they feel like it with no discernible rhythm, night or day.

Kieron, when you have used oxygen do you stay on it for five to ten minutes after the attack has gone?  That usually prevents what is known as 'rebound' attacks because you came off the oxygen too soon, even though the attack had gone. 

For those that are plagued by night attacks, there are two strategies we suggest, one is to ask for sumatriptan tablets from your GP.  Take one at night before going to bed and it should keep you painfree for at lest 5 to 6 hours.  BUT you must include that tablet in your daily triptan count.

The other is to ask you neuro/GP for melatonin which taken at night can also prevent night attacks.

Val. ;)

Sun, 15/02/2015 - 12:10
oxfordgarage
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Last seen: 8 years 11 months ago
Joined: 29/01/2015 - 18:18

Hi val my ch attacks over the last thirty years have always been somewhat like yours anytime ! But this cycle for some reason seems to be more night time related with maybe a couple of mild ch during the day but soon as I go to sleep set my watch and bang! I must admit I am not staying on it after the attack is aborted maybe I should try that. Melatonin didn't seem to work for me . I am seven weeks into my cycle and pray they will go soon ? Never thought of the tablets ? This cycle is weird as it's mainly night time or sleep time as before it was 24 hours and that was worse !

Mon, 16/02/2015 - 12:11
Val
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Last seen: 2 weeks 15 hours ago
Joined: 21/03/2012 - 15:16

Hi Kieron

Don't forget you can call the helpline to chat about treatments and the changes in your headaches to mostly night time attacks.  Any change in headache character, timing,etc should be reported to your neuro and he can review your treatment at the same time.

Val. ;)

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