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Improvement for women with age

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#1 Wed, 26/02/2014 - 14:18
CatherineK
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Improvement for women with age

I have been a cluster sufferer since my early 20s, with regular episodic bouts until I reached my early 50s. However, since the start of the menopause, the severity of my cluster headaches has reduced and the remission period between clusters has increased - I am now 60. I hope this is of some comfort to women sufferers out there.

Has anyone else experienced the same?

Wed, 26/02/2014 - 14:39
Dorothy
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Hi Catherine!  Yes - I found that once I got to 60 my 18 month remissions stretched to 2 years and my bouts have only been 5 weeks long the last twice.  I'm now waiting patiently to see whether the remission will stretch out even longer this time....there has to be some compensation for being over 60!

Dorothy

 

Wed, 26/02/2014 - 17:19 (Reply to #2)
RayW
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Hi Dorothy,

For the first time in my life I wish I was a woman  :) I hope you get many years pain free time. 

Ray

 

Ray Ward

Wed, 26/02/2014 - 17:35 (Reply to #3)
Phil
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Hi Catherine.

It was established on the old forum that sufferers can expect remission around the age of 60 regardless of gender.

I expect it'll be a while before all the relative posts from the old forum are re-posted.

 

 

...now where have they hidden the [Submit] button...

Wed, 26/02/2014 - 18:13 (Reply to #4)
Dorothy
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Thanks Ray!  I'm really enjoying my 60s although I may be a bit glum when the beast comes knocking shortly - my two year remission will be up soon but hey, I might get longer....thinking positive :)

Wed, 26/02/2014 - 19:26
ElizabethK
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So pleased for you Catherine and Dorothy, I am now 60 but have Hemicrania Continua and hope things settle down for me too,  no improvement so far!!!!

Wed, 26/02/2014 - 21:03 (Reply to #6)
Dorothy
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I hope the 60s will be magical for you Elizabeth

Sun, 02/03/2014 - 15:27
CBailey
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I have a while to go before I hit retirement age  but I am relieved to hear it may settle down at some point!

Arise and be all that you dreamed.

Sun, 02/03/2014 - 16:50 (Reply to #8)
Dorothy
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Chloe! Lovely to see you here x hope you get relief before retirement age as you certainly do have quite a while to go Biggrin there's always hope x

Sun, 02/03/2014 - 18:31
Scott
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My aim is to completely loose my marbles well before 60 Smile

 

 

Sun, 02/03/2014 - 18:54 (Reply to #10)
ElizabethK
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Didn't know you had any Scot?

Sun, 02/03/2014 - 19:35 (Reply to #11)
Dorothy
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Desperately clinging on to mine!

Sun, 02/03/2014 - 20:06
JaneJ 3
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Sadly this has not been the case for me!! I have suffered since my 20's and like you had regular episodic bouts until I reached 50. Then I had them pretty much constantly for 2 years. I was at the doctors almost weekly. I have just had 12 months free. However, I can feel them lurking again.

 I am stocked up with my meds and ready for them :)

Mon, 03/03/2014 - 11:25 (Reply to #13)
Dorothy
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Sorry to hear they might be lurking again - hope you have a very short (or no) bout followed by another nice long remission! Have you got plenty of beast-bashing weaponry ready for battle just in case? Good luck!

Fri, 07/03/2014 - 17:08
sandramac
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Scott lost his marbles a long time ago!! :p:jawdrop:

Mon, 10/03/2014 - 10:39
HelenN
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Hi everyone, this is my first post on this forum.

This thread is interesting reading. My current experience is similar to JaneJ 3's. I've been a regular sufferer with episodes since my early 20s. I don't know if either has had anything to do with it, but since I gave up smoking 10 years ago and had my son five years ago my remissions have become longer and episodes shorter, and they were brought under control within a week with 40mg verapamil. I even, just about, coped through an episode whilst pregnant with no medication.

Now I'm 45 and think I'm hitting peri-menopause. I'm having the longest bout of CH in years. After four weeks of 40mg verapamil and one week of 80mg it's still not under control.

Mon, 10/03/2014 - 18:12
Mike
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Helen, 80 mgs of Verpamil how many times a day?

 
 
 
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Tue, 11/03/2014 - 09:58
HelenN
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Just once a day. I have been very lucky, 40mg once a day used to be enough to control them within a week. My GP has told me to go back and see him if there's no improvement, he doubled the dosage when I ended up sobbing in his surgery last week in the middle of an attack.

Tue, 11/03/2014 - 12:49
pc
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As a new member of OUCH who is currently struggling to post on the forum. I wish I could add a positive note to this thread however, my experience is very different.
 
My cluster headaches only began when I reached 60 and I will be 65 next week!
 
It took me alsmost 4years of chronic daily pain, starting at 2-4am almost every day and only lifting after a 'four-shot cappuccino'.  My GP surgery were not very helpful (referred for sinus pain - no sinus problem, prescribed Amatryptaline and various cocktail of drugs, nothing worked)  October of last year I again consulted GP with my own scale of pain (amazingly similar in my new discovery on this site of Kip's scale) apart from being very clear of no longer being able to live life with many further nights at Level 10.  Armed with my own research material I insisted on referral to Neurology and that I be prescribed Sumatriptan.  
 
Neurologist appointment February this year and he took me seriously.....I cried with relief......he confirmed likely diagnosis of 'Chronic Cluster Headaches' and sent me for MRI scan and ECG prior to starting verapamil.  
 
Due to start verapamil next week : currently I try to limit my Sumatriptan injection to anything in excess of Kip's level 6 and just suffer with anything less until I get my caffiene shot.  However, I do wonder if I should just take the injections which could indeed be on a daily basis.
 
Any comments greatly appreciated - this is the first time I have managed to 'post' and share my condition with others who may have similar experiences.
 
wpc

pc

Tue, 11/03/2014 - 13:18 (Reply to #19)
ElizabethK
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Hi Wpc,

Sorry to hear about what you have been going through.  Sadly tales of misdiagnosis of sinus problems and migraine are all too common. Well done in pushing forward to see a Neurologist!

Regarding your caffeine shot, have you tried 'Red Bull'? Some sufferers can find this of benefit drunk cold as possible and quickly at the start of an attack.  This should be used with caution if you are affected by high doses of caffeine.

Verapamil is usually the drug first used for prevention of CH and works well for some sufferers, however, it takes some time to build up to a therapeutic dose which is different for everyone.

Has your Neuro talked about Oxygen?  This is a good alternative to the injection if used early enough for most, but does not work well for everyone, definitely worth a go.  You can use Oxygen more times a day than the injection and on the bad ones I find a combination of oxygen and injections is good!

Don't forget you can phone the Helpline 01646 651979 and talk to another sufferer which is very encouraging and of course get some great advice.

take care

Liz

Tue, 11/03/2014 - 14:05
pc
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Thanks Liz, I appreciate your reply - the Neurologist didn't mention oxygen as a home medication but did say that I should go to hospital for this should the need arise.  I have noticed the use of oxygen mentioned on this site andd Patient UK and will pursue this (as will trying Red Bull!)

Chatting on the helpline a very good suggestion....ta

 

 

pc

Tue, 11/03/2014 - 14:34 (Reply to #21)
Dorothy
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Hello again Wpc!  Welcome to the forums - you seem to have managed ok then :-)  and good for you getting yourself well armed with your research info. 

I'm sorry you had to get CH at 60 but I suppose we are all different.  I do know a couple of chaps locally who got it for the first time when they were in their 70s.

Do try to get the oxygen  - your GP can arrange this for you.  You can print a HOOF (Home Oxygen Order Form) from here on the website and take it with you to the doctor - it's even partially filled in for him!  I always say oxygen is my comfort blanket when I'm in cycle.  Be careful about using Red Bull - I use it myself and it can be very effective but it has had a bad press recently. I've become a little wary of recommending it.  It may not be a good idea for instance for anyone who suffers with high blood pressure or has a heart condition. 

Having that chat with the helpliners will be a good move and they will answer any questions you might have.

All the best

Dorothy

 

 

Tue, 11/03/2014 - 15:11 (Reply to #22)
pc
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Thanks Dorothy, 

I'm off to download a hoof and buy red bull - a very animalistic theme!

pc

Tue, 11/03/2014 - 15:16
pc
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Oh Dear - Scotland doesn't appear on the hoof list and we have not yet voted YES!

pc

Tue, 11/03/2014 - 16:34 (Reply to #24)
Dorothy
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Sorry I didn't realise you were in Scotland - I think you do need to see a neurologist to get the oxygen in that case and it's a form called a SHOOF which I believe only the neurologists have.  The helpline can tell you about Headache Specialists in your area.

Tue, 11/03/2014 - 16:47
Scott
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O2 in Scotland is prescribed by a Neurologist so you need to ask for a referal to see one. In Edinburgh there is a neurologist working between Edinburgh and West Lothian who has an Headache specialism and has contacted OUCH regarding the East of Scotland Meeting.;)

 

 

Tue, 11/03/2014 - 17:37 (Reply to #26)
pc
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Thanks Scott, very interesting - wonder if you can tell me how I find out about East of Scotland meetings?

pc

Tue, 11/03/2014 - 18:00
sandramac
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there is a meeting planned for the East of Scotland soon, an announcement will be made in the Meetings section of the forum when we have more details!!

 

looking forward to seeing you there 

 

Sandra 

Tue, 11/03/2014 - 20:35
duetto
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or you could come down to london or the walton centre to the neuro hospitals before they rebuild the wall after the vote.

 

i find verapamill does not stop cluster but does make them less severe, as for imigran i found only the jabs work, the inhalers did nothing for me, nor did imigran tablets, but some take them at night as a preventative, i prefer melatonin at night, but recently had quiet a few nighttime hits.

Wed, 12/03/2014 - 07:44
Mike
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Helen said:

"Just once a day. I have been very lucky, 40mg once a day used to be enough to control them within a week. My GP has told me to go back and see him if there's no improvement, he doubled the dosage when I ended up sobbing in his surgery last week in the middle of an attack".

 

Sorry I think we missed this reply. The usual dose for Verapamil for the treatment of various conditions such as hypertension (high blood pressure), arrhythmias (abnormal heart rhythms) and angina (chest pain) is around 240mg daily. It is considered that less than 240mg will have no effect. Verapamil takes up to three weeks to have an effect. For cluster headache sufferers the neurologists recommended dose is far higher, at least 360mg and up to 1200mg in certain cases. This should be taken on an increasing scale over some weeks and every increase should include an ECG. We do have a Verapamil regime sheet available supplied by the Institute of Neurology and Neurosurgery.

 
 
 
Chairman OUCH UK

Wed, 12/03/2014 - 12:01 (Reply to #30)
pc
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Thanks Duetto,

use of Melatonin sounds worth checking out, however I am going to try the Verapamil first.   Not sure travelling to London, even for the mighty Walton Centre is currently an option for me (wall or no wall).  I am at the very least and at last being heard and taken seriously.  The Neurologist I had consultation with at WGH in Edinburgh was very serious in his consideration of my condition.  I really don't know what I might have done if he had been another to minimise the pain I experience.

pc

Fri, 14/03/2014 - 09:05
HelenN
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I typed a reply to the other day you Mike but must have omitted to save it.

The neurologist at the National Hospital advised my GP to prescribe verapamil. I assume he advised the dosage. I haven't had a headache since Monday morning so am cautiously hoping it is now taking effect. If not, I will be back at the GP's pdq to discuss.

Sun, 16/03/2014 - 17:11
Mike
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Helen if you are pain free by whatever means that really is great. Long may it last.

 
 
 
Chairman OUCH UK

Thu, 20/03/2014 - 13:01 (Reply to #33)
TracyB
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Hi Wpc! 

Im so glad you have found a neurologist at WGH to take your case seriously! I was also diagnosed at WGH and they have been my main care givers since 2002! I was diagnosed with episodic then in 2004 Chronic! I have been through the pharmacy many times with different combinations. No drugs worked for me so I was taken off them and have been managing my illness using mindfulness techniques.  I was taught these through the pain clinic in WGH and the clinical psychologist team.  It took me 18 months to master them and not to have to talk myself through them each time I took an attack! I also have regular acupuncture.  I have also had ONSI four times, as various equipment malfunctions meant they had to be removed or replaced.  The team at WGH are excellent.  Who was your neurologist? I hope you find some relief and know that each attack will pass and you can move on but unfortunately they keep coming back. This illness is all about the management of it.  I will be back in Scotland in April so if you wanted to meet up for a chat I will be up in Edinburgh. I'm a 38 year old, female by the way! Sometimes you need to stop fighting it and it doesn't cause as much stress on the rest of your body! No one really understands that there actually is a pain that can be this severe, other than fellow sufferers! Look after yourself. Tracy.

Thu, 11/12/2014 - 08:34 (Reply to #34)
Dorothy
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An update on my remission:  I got 2 years 8 months and it's back.  Still - those remissions are getting longer.  I'm looking on the bright side.  I was a loose cannon not knowing when so at least I know it won't be when my special holiday for my 50th wedding anniversary comes round!  Amalfi with no added passenger sounds good to me. :)

Dorothy

Thu, 11/12/2014 - 20:05
Mr Git
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I can relate to all of that Dorothy. Towards the end of the remission you do tend to have one eye on the timebomb :|

Do you find that as your periods of remission get longer that your bouts get longer? Over a 10 year period my bouts went from 6 weeks to 3.5 months. Makes it tricky deciding on how best to manage your treatment and when to time a GONB (if that's part of your plan). I so wish someone had explained this possibility to me earlier as there were some bouts when I panicked and resorted to heavy duty medication when there was no need, it would have ended a week later on it's own.

I hope your Demand Valve gives you as much benefit as mine does. It's really made the difference for me. I switched to the facemask early on as I'm more of a through the nose type of guy (used to do a lot of running).

Just focus on that positive! The finish line is in sight on the Amalfi Coast!! ;)

 

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Warning: This forum may contain nuts
 

Fri, 12/12/2014 - 10:27 (Reply to #36)
Dorothy
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Thank you.  The length of the bouts has changed over the years.  The bout used to be much longer when I was younger.  Then after age 45-50 and for many years it was only four weeks with 18month remissions.  Since 60 I've had 2 two year remissions with 5-6 week bouts.  Waiting with baited breath (but not while on 02 ;)) to see how long this bout will be. 

That Amalfi coast is great to focus on..

Dorothy

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