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newbie-- dull aches during attacks, is this the norm?

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#1 Sat, 13/09/2014 - 21:54
Jazzioooo
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newbie-- dull aches during attacks, is this the norm?

Hello 

      I'm new to this but in denial that I actually suffer with CH.

About 3 yrs ago I went to doctors with a severe headache, while there , I was rushed to hospital with suspected bleed on the brain,after numerous scans and a lumbar puncture which came back negative , they came to the decision that I was suffering from CH.

    I was then referred to a neurologist at a different hospital, who agreed it was CH. I have now been going for neurologist appointments every 6 months since which each neurologist agrees they are episodic clusters.

However I have recently been on YouTube and seen videos of people suffering from attacks ( very horrendous ones) and I feel that I'm being a wimp n should not be moaning about my bad headaches .

I am no where near in as much pain as these people , and I feel a fraud. But I will add my headaches r the worst pain I myself have ever experienced

Moo-cow

Sat, 13/09/2014 - 21:56
Jazzioooo
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What I fail to mention. Is about the dull ache above my eye that I have between the days of my attacks, up s this normal?

 

Moo-cow

Sun, 14/09/2014 - 07:25
duetto
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yes it is with me I have background headaches and aches around the eye most days between attacks it helps to wear you down,you cant do anything or go out as you think a cluster is about to hit and should i use one of my 2 in 24 hours jabs now or wait a little to see if it goes full cluster sometimes does does,  a catch 22 situation.

Sun, 14/09/2014 - 08:07
Jazzioooo
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I just feel like I'm living my life through my cluster headaches, too scared to plan anything to do just incase I'm about to have attacks, last night was frightening as I had to go out in the car and I suffered one Sad  I dread going to work incase I have one there, I look really weird pushing at my head to try and stop it. Do u suffer really badly? As in punch and bang ur head on walls? I've only felt like doing that a few times, so feel like I'm just being a wimp when I see whaT others r going through x

Moo-cow

Sun, 14/09/2014 - 17:08
duetto
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dont bang my head on walls or pounch it, but do apply pressure to the head to try and blok the pain. Some needs to invent a padded "G" clamp that you put around you head during an attack and tighten the nut to apply pressure on the area of pain to block it.

Sun, 14/09/2014 - 17:17
Jazzioooo
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Yes I totally know what you mean and how you feel, I'm at work at present and worried as my works said they are going to involve occupational health as my sickness isn't great and they feel it will help me out

Moo-cow

Sun, 14/09/2014 - 17:18
Jazzioooo
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The dullness of the headache between is so depressing and makes me feel so down Sad

Moo-cow

Sun, 14/09/2014 - 18:27
Mike
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To be honest you have some confliction in your symptoms. Please call the helpline on 01646 651 979, leave your telephone number (which isn't on our contact details) and someone will call you back.

 

regards

Mike

Chairman OUCH

 
 
 
Chairman OUCH UK

Sun, 14/09/2014 - 19:52
Jazzioooo
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What do u mean some conflictions if u don't mind me asking

Moo-cow

Sun, 14/09/2014 - 19:57
Jazzioooo
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Thank you for your comment

Moo-cow

Mon, 15/09/2014 - 08:34
Mike
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Some of your symptoms relate to CH - some dont. David (Duetto) seems to get a complicated set of symptoms and really isnt typical. If you talk to one of our helpliners they will be able to help. Who was the neurologist you saw? Sadly most have no idea about diagnosing CH.

 
 
 
Chairman OUCH UK

Mon, 15/09/2014 - 10:31
Jazzioooo
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Thank you for your reply 

   Which symptoms would you say don't relate to CH? 

Moo-cow

Mon, 15/09/2014 - 10:33
Jazzioooo
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DR Newman is who I had my last appointment with x and that's who I will be seeing in October x

Moo-cow

Mon, 15/09/2014 - 12:04
Phil
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Hi Jazioooo and welcome to the forum.

You shouldn't feel fraudulent in any way, the attitude towards headaches, even from doctors, causes a lot of sufferers to doubt their worth.

Whether it's Cluster or a similar primary headache it's still painful, it still destroys your quality of life and needs treatment.

Give the helpline a call and leave your name and number.
They're very pleasant and knowledgeable, and love a natter.

P.S. Have you got a better signature?
"Hi Moo-Cow and welcome..."
would be... uncomfortable. Smile

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

Mon, 15/09/2014 - 12:51
Jazzioooo
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Thank you for the welcoming and I will change my signature lol I haven't clicked oops, this helpline, who exactly will I be speaking too? Other cluster sufferers? 

Moo-cow

Mon, 15/09/2014 - 12:55 (Reply to #15)
Colin Allen
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Yes,make the call!

Mon, 15/09/2014 - 21:39
Jazzioooo
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I'm a bit wary of ringing lol have any of you spoken to anybody on the phone from here? 

Moo-cow

Mon, 15/09/2014 - 22:55 (Reply to #17)
Colin Allen
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We don't bite and are very friendly. Please call.

Tue, 16/09/2014 - 07:50
duetto
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you will find them very helpful and relaxed.

Wed, 17/09/2014 - 11:37
Phil
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I'm pretty sure everyone at OUCH is a sufferer of a primary headache,
or a supporter (partner of a sufferer)

You haven't joined a members club, you've joined a family.

Give uncle Colin a call.

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

Wed, 17/09/2014 - 12:54
Jazzioooo
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I'm pretty shy so was hoping to get more answers on here to be honest lol 

Moo-cow

Wed, 17/09/2014 - 17:58
Phil
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Anyone on the planet can view the forum.

Cluster headache is the worst pain known to mankind,
that's it's most prominent feature.
It's nicknamed Suicide Headache.
Members have overcome worse things than shyness and lived to talk about it.

Horses and water come to mind.

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

Wed, 17/09/2014 - 19:07
Jazzioooo
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Yes I know anybody can view this, it's a little different from speaking on the phone though, what times are the people available to ring? 

Moo-cow

Wed, 17/09/2014 - 20:51
Phil
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It's a 24hr service.
A helpline trustee or officer will call between 10am and 2pm.
If your call is considered urgent, they may call out of hours.

If you're worried about disturbing someone in the early hours,
give them a tinkle after 9am.

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

Wed, 17/09/2014 - 21:00
ElizabethK
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Please check your Private Messages Smile

Wed, 17/09/2014 - 21:09
Phil
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If you're too shy for the initial call,
I guess it'd be okay to send Colin a PM requesting a call.

(Colin? Is that okay?)

But the rules for shy call-back are pretty strict:
You need to make a paper hat,
and hide behind an armchair wearing it when you take the call.
Sorry, but it's OUCH policy.

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

Wed, 17/09/2014 - 21:32
ElizabethK
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Lol Phil! 

Wed, 17/09/2014 - 21:46
Jazzioooo
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Lol thanks Phil for the info about the paper hat, I'm sure I'll feel a lot better while on the phone ha, just to say although irrelevant my name is Manda, however I'm also failing on finding where I change my signature lol nice to meet you all x

Moo-cow

Thu, 18/09/2014 - 08:34 (Reply to #28)
Colin Allen
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Manda,you can contact us in a number of ways. A telephone call is usually the most beneficial but you can either send a private message to one of the helpline team,or email helpline@ouchuk.org.

Sat, 04/10/2014 - 17:44
Jazzioooo
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Hello
              I have got my 8th appointment through for the end of October, I was told I'm suffering with episodic clusters when rushed into hospital 3 yrs ago with suspected bleeding on the brain, 
   I've always doubted I'm a suffer if clusters since watching some YouTube videos of people suffering with them, I'm no where near the pain these people are suffering with, I don't think need the oxygen that the consultant says he will put me on as like I said before I do not suffer as bad as people in the videos.
    Don't get me wrong I do suffer, but when asked by consultant on the pain scale of 1-10 I'm averaging 7-8 , only 3 times in one episode have I needed to bang my head on the wall. My description of my cluster headaches that I usually get are like continuous brain freeze , this is how I explain to my friends the pain I am in
  However the last two weeks I've been having pain in the same place and the weeping eye and droopy eyelid.... But the pain is only about on the 4-5 scale, I do have to still press on my head or try pushing my eye inward. But still go on with my daily routine it just now n again have to go off on my own, Was just wondering if cluster sufferers experience not so painful  headaches x thank you x manda
Sent from my iPhone

Moo-cow

Sun, 05/10/2014 - 12:45 (Reply to #30)
Val
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Hi Manda

I think you'd benefit from a call to the helpline, as Colin suggested, to discuss your symptoms.  It could be CH, everyone's interpretation and reaction to pain is different and you don't have to be at the excruciating level every attack all through the attack.  The watering eye is a symptom of CH, but a quick chat with one of our volunteers will help you determine what you might have; also have you tried the 'Do I have CH?' questionnaire on the website home page.

Val. ;)

Fri, 10/10/2014 - 23:15
Jazzioooo
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Hi Colin 

        I have emailed to the email address you supplied x thanks Manda x

Moo-cow

Fri, 10/10/2014 - 23:18
Jazzioooo
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Hi val

     Yes I have tried the questionnaire and I have done lots of others too with the same outcome "CH" , this is also what my consultant has said and the others I've seen too, the only doubt I have of CH is I do not suffer 10/10 pain from them, but it has been said before the pain levels are all different, I just have to come to terms with dealing with them when I have them and I am trying to avoid certain things I think may trigger them.... May thing I have found is the time of days I eat my meals, it's really mad to be fair x

Moo-cow

Tue, 14/10/2014 - 10:11
David_J
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Hi Manda,

My diagnosis too was delayed by this belief, that if we're not ready to gouge out our eyeballs, we don't have CH. My latest / current (delete as appropriate, not sure if it's finished yet, but fingers crossed) bout only maxed out at KIP 4-ish, what's more I wasn't always having "at least one every other day". In fact, it's the shadows that have been more disabling than the attacks. However all other symptoms fit, and oxygen and triptans effectively abort. It's definitely CH, but a bit more like "Clusters lite" Biggrin That's not to say all bouts have been and will be the same - quite the opposite, but this is such a variable disease. The more severe cases are the ones that make the most noise in the medical community and therefore get the most column inches in the journals - that's only natural I suppose, but as a result those elsewhere on the spectrum tend to be a little ignored. One GP even mentioned that there are probably some sufferers who never even seek treatment because the symptoms are sufficiently mild. Whether that's true or not is probably impossible to say.

The most we can do is not stay hidden. Make sure your experiences are documented. Complete the patient surveys. Given time, there'll be no option than to acknowledge that the spectrum of the condition is wider than first thought.

Thu, 30/10/2014 - 18:51
Jazzioooo
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Hi david 

    I have been for my six month appointment with my consultant this week and he asked if I had joined OUCH website to which I said it's really helped me, 

     He also said about all his different patients he has with cluster headaches and none are the same with their symptoms and the scales of pain,, this made me feel a bit better about how I'm thinkin my headaches are going ,

   He has said in to stay on veramapil tablets even though they slowed my heart rate down to 53bpm! And my bloody pressure went mental, so I've started then again and I'll be having ECG's again

Moo-cow

Fri, 31/10/2014 - 13:00
Phil
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The attitude from a lot of doctors and people in general
leaves many sufferers feeling less than worthy.
-We don't need to beat ourselves up too.

Val has often coined the phrase "custom disease",
it IS different for everybody.
There will always be someone worse off, but we all
suffer.

Welcome to ouch, sorry you need to be here.

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

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