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Message started by Gen on Jan 26th, 2011 at 10:38pm

Title: First post - hello....
Post by Gen on Jan 26th, 2011 at 10:38pm
Hello.
Just diagnosed chronic CH.
For 2 years longest PFDAN 5 usually 1 - 3
At 1st took loads of painkillers! Attacks last 15 - 30 mins. Always at night.
Hayfever/sinus probs.Had lots of ENT investigations. Prescribed Nasonex spray,
Amitriptyline, acupuncture, Propoponol, Gabapentin.No help!
September 2010 referred to specialist neuro consultant.Just seen him.
Prescribed Verapamil and Maxalt Wafers. Had an ECG and will have an MRI to check there's no other sinister causes. He will explain all to my GP incl. how to administer  medication.
At last I feel some hope (I hate taking any kind of drugs but I think with this there is no choice. Drugs scare me but this pain scares me more!)
I am a 53 year old woman and live in Wales, UK
I'm very glad there was a CH.com to find - I'd like to hear back from anyone.......

Title: Re: First post - hello....
Post by Mike NZ on Jan 26th, 2011 at 11:18pm
Hi Gen and welcome to the forums.

It's good to see you've got a diagnosis although two years is a long time to have to wait to get a diagnosis and effective treatment.

What dosage of verapamil are you on? Most people need between 360 and 480mg although some go to over double that to get an effective dose. Since it takes about 2 weeks for a dose level to take effect, change levels only gradually working with your doctor.

Maxalt wafers are commonly used with migraines, but since they take 15 or so minutes to get into your bloodstream they are not the best way to abort CHs. What is a LOT more effective is to use oxygen at a high flow rate (15lpm or higher - 25 works well for me). At 25lpm I can on average kill a CH in 6 minutes with zero side effects unlike many other drugs. Oxygen is available via the NHS. Find out how to use oxygen using the link on the left.

Another alternative to maxalt is to use imitrex injections which being injected take effect a lot, lot quicker than maxalt as it doesn't have to be digested first.

What you need to do now is to start reading here and you'll soon learn lots about CHs. Posts in this part of the forum are a good place to start.

And if you've questions, ask away. We all know, either as we get them or support people with them, just what it's like to get CHs unlike 99.9% of the population.

Title: Re: First post - hello....
Post by GaryW on Jan 26th, 2011 at 11:20pm
Hi Gen,
Welcome!
These kind and experienced people here will welcome you into this Community, and the info you will get here is priceless! Others here will tell you that you must see your Neuro about O2 treatment...Have a read through the posts about it and the info pane in yellow on the left.

You have a whole new bunch of friends!

Keep your chin up!

Gary

Title: Re: First post - hello....
Post by Guiseppi on Jan 27th, 2011 at 12:02am
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Welcome to the board, read the link above. Oxygen will eliminate most of the meds you'd otherwise use. 33 year CH sufferer, I went from 90-120 minute rides to 6-8 minute aborts, it's pretty awesome stuff! ;)

Joe

Title: Re: First post - hello....
Post by bejeeber on Jan 27th, 2011 at 2:16am
Hi Gen,

As you're seeing from the responses so far, there is the real possibility of effective treatments other than drugs (I'm not qualified to preach against drugs though. I hate taking them too, and don't take them for any other condition, but in a pinch I'll go right to the imitrex injections if I don't have anything else that's working for CH).

Lots of people have found out about effective treatments here, many of which aren't typically offered by the medical establishment, so you've come to the right place!


Title: Re: First post - hello....
Post by suzieq6343 on Jan 27th, 2011 at 4:56am
Hi Gen
I can only echo all that has been said already, a valuable site with masses of information and genuine support, never judgemental and always available with good sound advice and comfort.

Sue

Title: Re: First post - hello....
Post by Gen on Jan 27th, 2011 at 6:39am
Hi - thanks for all your replies  :)

The prescribed Verapamil is just a low starting dose of 80mg. I knew about oxygen (not details, just that it can work) and I did mention it - but they seem to want to try other things first. I know that the Maxalt Wafers are usually for migranes - the Consultant did suggest Sumatriptan injections - it was a bit of a shock. I never injected myself and didn't like the idea of waking up in pain in the night and having to do that .  Needles in the night.... ugh.. but this is probably a mistake on my part from what I'm reading.... it's all a bit daunting... the consultant also said there is a nose spray of it but he didn't prescribe it. Dont know why - perhaps because I already take Nasonex spray for my sinuses / post nasal drip..? He said the Maxalt Wafers took longer to work....  They will review me quite closely I think so changes are going to be possible....  I guess I have to find out what works for me.....   it could take more time.... but hey, it was already 2 years!

I won't be starting these meds until at least another week since thats when I could get my next GP appointment. I must say that I am at least feeling less hopeless and am very relieved to have got this diagnosis so at last I can get appropriate treatment. I just really wish I could feel my 'usual bright bouncy self ' again and get on with all the things I want to do and make plans etc - on a good day I do - but not very often and you are right... people don't understand and if I talk about it I start feeling like a drama queen.  Everyone understands the word headache but they don't understand CH. I'm so often late for work.... my colleagues have been quite patient and understanding. They are nice peope.... but when it goes on for long you start feeling guilty..... it tests peoples patience...  The letter I found through this site is helpful - I took it into work this week.

Even my previous GP - she said there was nothing  more she could do for me, she didn't know what to do -  seems they don't know a lot about it. She took me down the ENT route. The crazy thing is I have a friend who was a GP, now a medical researcher and he was sure it was CH a year ago - the GP I was with then simply didn't take on board anything I'd found out.... I had to struggle for people  not to give up on me. However, the GP I have now really took me on board and listened, tried to find out and help me - he encouraged me to continue keeping the pain diary I'd started and always looked at it. He got me this neuro consultant appointment fast tracked because my symptoms got so severe before Christmas. I think he is going to be willing to learn more about it too. It's taken a long time but his attitude is also something that causes me to feel a bit more confident that things could start to get a bit better now.... 
After 2 years of pain, disturbed and lack of sleep, confusion with sinus issues, hopelessness etc my systems seem to have got really run down - just been on 3 lots of antibiotics (I hate them!) for chest infection I got from a cold before Christmas and I had flue back in Septmeber .... probably its been wearing on the immune system. Need to build myself back up somehow.....
.....but whilst I still haven't started the new treatments yet just having the diagnosis and the prospect of appropriate treament has made a huge difference to my general well being - its a relief and there's a little light of hope at the end of this long dark tunnel...

Please does anyone recognise those symptoms in the daytime which I mentioned in my first post here?
Also is there any part of this forum specifically to do with chronic rather than episodic CH's?

It is so very good to find this site - thanks everyone!!!

Title: Re: First post - hello....
Post by wimsey1 on Jan 27th, 2011 at 7:52am
Many of us are chronic, myself included. It seems whether chronic or episodic, the abortives remain the same-O2 at high flow, nonrebreather mask; energy drinks; imitrex in one form or another; melatonin at night; etc.  The only difference is in the use of ongoing preventatives. As to recognizing symptoms, I didn't see in your first post to what you refer, but you did write this above:


Quote:
After 2 years of pain, disturbed and lack of sleep, confusion with sinus issues, hopelessness etc my systems seem to have got really run down - just been on 3 lots of antibiotics (I hate them!) for chest infection I got from a cold before Christmas and I had flue back in Septmeber .... probably its been wearing on the immune system. Need to build myself back up somehow.....


If this is what you mean, yes, we are all familiar with the routine, especially the nighttime hits and lack of sleep.  Stress, constant pain, and just because...all can make one more susceptible to colds, flu, and other nasties.

I also didn't see any mention of a prednisone taper. Sometimes high doses tapering down slowly of prednisone (or a similar steroid) can break a cycle long enough for better abortives to kick in.  Blessings. lance

Title: Re: First post - hello....
Post by Gen on Jan 27th, 2011 at 9:31am
Thanks Lance - that's helpful and good to know.
oops - I didn't actually post what I was referring to - sorry! ( i had problems with my computer last night and cut out  a lot of what I intended to say!)

My question was this:
In addition to the aweful pain that wakes me up I also quite often have a very uncomfortable, congested, but not painful symptom during the day - its very hard to describe it, like a big pressure on my face under my eye and to the left of my nose. My eye doesn't feel normal and sometimes tears. Often  my left nostril is also blocked (all my symptoms are always on the left) I also often feel a bit groggy in the head with this 'face pressure' , difficult to concentrate at work with it etc. Is that a known symptom associated with CH? Does anyone else get that? I would love to know!!!

Title: Re: First post - hello....
Post by GaryW on Jan 27th, 2011 at 10:13am
Hi Gen,
I get this too (have it now) it feels like someone has squeezed your neck and your face feels 'bloated'...I think it is to do with BP, can you get it checked while you are feeling like this?
I had it done in work when feeling this way and, yes, BP was up!

Cheers
Gary

Title: Re: First post - hello....
Post by crosspescara on Jan 27th, 2011 at 10:38am
ditto,

are you left handed by any chance?

Title: Re: First post - hello....
Post by GaryW on Jan 27th, 2011 at 11:21am
Hi Garry,
Sorry I didn't get back to you last night when I said I would,
things went t*t's up as soon as I got into work and,
a couple of CH's for good measure too!

And no, I'm not left handed?

Re cylinder sizes, is this what you use? How many aborts in there?

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Cheers
Gary

Title: Re: First post - hello....
Post by Gen on Jan 27th, 2011 at 12:55pm
thanks Gary - maybe the verapamil will help that then when I start it - I hope so!
And I'm not left handed either!!

Title: Re: First post - hello....
Post by Mike NZ on Jan 27th, 2011 at 1:39pm
Hi Gen

80mg of verapamil is a very low dose and it's unlikely to be effective, so do expect to have this increased to probably somewhere around 360-480mg.

Since it takes about 2 weeks for verapamil to become effective (or a dose change), ask your GP about a taper of prednisione starting at around 60mg and dropping off to zero over 2 weeks. This will help prevent CHs for those 2 weeks, although you don't want to be on prednisione too long.

As to having to wait a week to see your GP before you can get your medication, this isn't acceptable. If you'd a broken leg, which is less painful, they'd not make you wait so long.

For the oxygen, once you've used it and experienced just how good it is you'll realise that it's a life changing event. I'm not the only one who cried when I realised I'd a very effective way to kill CHs when I used it the first time. It is that good when used right. Do learn about this and do get it.


Title: Re: First post - hello....
Post by Linda_Howell on Jan 27th, 2011 at 2:22pm
Not that I haven't heard of this a hundred times but it still infuriates me.


Quote:
I knew about oxygen (not details, just that it can work) and I did mention it - but they seem to want to try other things first.
 

The logic of it escapes me.  Lets fill this person up with drugs with all kinds of side-effects instead of prescribing something to abort that is safe, effective, has no side-effects and is relatively inexpensive.    ::)


Quote:
I know that the Maxalt Wafers are usually for migranes


Because of the rareity of our condition...all of the meds we use were first used for other conditions and recently found to be effective for CH by trial and error.  Maxalt and Imitrex were developed  for Migraines, Verapamil for hypertension, Lithium as a mood-stabelizer and Topomax for siezures as well as Migraines. 

Linda

Title: Re: First post - hello....
Post by suzieq6343 on Jan 27th, 2011 at 3:01pm
I knew about oxygen (not details, just that it can work) and I did mention it - but they seem to want to try other things first.   

Gen my neurologist said the same thing,
I had to come off all meds before starting verapamil I started on 40mg bd (twice a day) for 2 weeks then went up to 80mg bd, I hadn't researched clusters before I went to the appointment...big mistake on my part. neuro reluctantly increased the verap after 6 months (last week),I'm now on 120mg bd which is still a relatively small dose really.
I'm lucky as my last cluster seems to have passed (fingers,toes,knees and eyes crossed), I went to the GP's last week and asked for O2 but was told that the neuro has to prescribe it...not due to see them until June! I am going back to the GP's next week armed with more info from this site and see if they will contact the hospital for a verbal OK to prescribe me O2.

I often want to pull my right eye out with the pain and the day after an attack I feel vacant, i think i function on auto
Sue

Title: Re: First post - hello....
Post by crosspescara on Jan 27th, 2011 at 3:26pm
Hi Gary
yes that's the one. Each bottle seems to last about 2 hours on 15lt. If I can catch a ch early enough I can be free in about 10 mins.
If I get gripped by a bad one the oxygen seems to halt its progress and at least numb the worst of it, been a couple of times I've been on the bottle (as it were) for the duration of the attack

Was asking about left hand right hand cause the first thing the nuero asked me was am I left handed or right handed. The second thing he asked was which side gets affected, both answers were left hand side

Title: Re: First post - hello....
Post by GaryW on Jan 27th, 2011 at 4:51pm
Hi Garry,
Hmmmm! I am right-handed and pain is in the left......

All I can be sure of is that they start at the beginning of divorce proceedings!
Do you think there is a link and what are your suggestions for the future? ;D
Or should I have my sense of humour region removed?...
On second thoughts, No, I think it is one of my most resilient features!
Apologies, it's the Smirnoff talking!  :o

I will get my coat then.........

Hear from you soon Garry!
And Cheers!
Gary


Title: Re: First post - hello....
Post by Gen on Jan 27th, 2011 at 5:29pm
Mike, Linda, Suzie - my learning curve is going exponential here!!! The accumulated experience of members here is awesome! Thanks all of you!

Whew, it's a lot to take on board. I thought I'd done a lot of research - I knew myself a year ago that this was CH but the GP I had then didn't take any of what I told her on board - she gave up on me!  The one I have now is much better and thanks to you all I am going to my appointment next week armed with lots more information (yes I know waiting 2 weeks isn't really acceptable - but he is on holiday this week and he is the only one in the practise who is dealing on this with me - and he really has been trying his best - he's a good guy!) The oxygen sounds so good - especially as its more 'natural' without side effects. The consultant I saw said he thought waking up and getting to it and getting the mask on etc would take too long - very wierd considering what you have all been saying- and especially if it isn't expensive! (good old UK NHS - and I work for them!!!)

Suzie I see you are in Chester (I was there 2 weeks ago! My sister in law & family live there) and it seems as though the NHS have started us both off on a similar plan! My symptoms the day after are very very similar to yours! All the best to you!

Title: Re: First post - hello....
Post by Linda_Howell on Jan 27th, 2011 at 6:41pm

Quote:
my learning curve is going exponential here!!! The accumulated experience of members here is awesome


Yes it really is and has been culled from hundreds and hundreds of years of our accumulated experience.  I realize it's a lot to take in all at once, so take one thing at a time, ask questions here, and read read read...especially the 02 link to the left. 

I hate it for you that you have to wait for a few weeks to see your Dr. but use that time to educate yourself.  An educated sufferer...suffers much less.

We're all here to help.

Title: Re: First post - hello....
Post by Bob Johnson on Jan 27th, 2011 at 7:33pm
Suggest you print the following and take to your doc. He will recognize the source as legit medical source. This approach is widely used in the US.
=======
Headache. 2004 Nov;44(10):1013-8.   

Individualizing treatment with verapamil for cluster headache patients.

Blau JN, Engel HO.


    Background.-Verapamil is currently the best available prophylactic drug for patients experiencing cluster headaches (CHs). Published papers usually state 240 to 480 mg taken in three divided doses give good results, ranging from 50% to 80%; others mention higher doses-720, even 1200 mg per day. In clinical practice we found we needed to adapt dosage to individual's time of attacks, in particular giving higher doses before going to bed to suppress severe nocturnal episodes. A few only required 120 mg daily. We therefore evolved a scheme for steady and progressive drug increase until satisfactory control had been achieved. Objective.-To find the minimum dose of verapamil required to prevent episodic and chronic cluster headaches by supervising each individual and adjusting the dosage accordingly. Methods.-Consecutive patients with episodic or chronic CH (satisfying International Headache Society (IHS) criteria) were started on verapamil 40 mg in the morning, 80 mg early afternoon, and 80 mg before going to bed. Patients kept a diary of all attacks, recording times of onset, duration, and severity. They were advised, verbally and in writing, to add 40 mg verapamil on alternate days, depending on their attack timing: with nocturnal episodes the first increase was the evening dose and next the afternoon one; when attacks occurred on or soon after waking, we advised setting an alarm clock 2 hours before the usual waking time and then taking the medication. Patients were followed-up at weekly intervals until attacks were controlled. They were also reviewed when a cluster period had ended, and advised to continue on the same dose for a further 2 weeks before starting systematic reduction. Chronic cluster patients were reviewed as often as necessary. Results.-Seventy consecutive patients, 52 with episodic CH during cluster periods and 18 with chronic CH, were all treated with verapamil as above. Complete relief from headaches was obtained in 49 (94%) of 52 with episodic, and 10 (55%) of 18 with chronic CH; the majority needed 200 to 480 mg, but 9 in the episodic, and 3 in the chronic group, needed 520 to 960 mg for control. Ten, 2 in the episodic and 8 in the chronic group, with incomplete relief, required additional therapy-lithium, sumatriptan, or sodium valproate. One patient withdrew because verapamil made her too tired, another developed Stevens-Johnson syndrome, and the drug was withdrawn. Conclusions.-Providing the dosage for each individual is adequate, preventing CH with verapamil is highly effective, taken three (occasionally with higher doses, four) times a day. In the majority (94%) with episodic CH steady dose increase under supervision, totally suppressed attacks. However in the chronic variety only 55% were completely relieved, 69% men, but only 20% women. In both groups, for those with partial attack suppression, additional prophylactic drugs or acute treatment was necessary. (Headache 2004;44:1013-1018).

=======================================
SLOW-RELEASE VERAPAMIL

Dr. Sheftell applauded the protocol for verapamil used by Dr. Goadsby and colleagues, which entailed use of short-acting verapamil in increments of 80 mg. “This method was suggested by Lee Kudrow, MD, 20 years ago as an alternative to slow-release verapamil,” Dr. Sheftell noted.

“I would agree with using short-acting verapamil, rather than the sustained-release formulation, in cluster headache,” he said. “I prefer the short-acting formulation with regard to ability to titrate more accurately and safely. My clinical experience anecdotally demonstrates improved responses when patients are switched from sustained-release verapamil to short-acting verapamil.”

Dr. Goadsby agreed that his clinical experience was similar. “There are no well-controlled, placebo-controlled, dose-ranging studies to direct treatment. This is one of those areas where clinicians who treat cluster headache have to combine what modicum of evidence is available with their own clinical experience,” Dr. Sheftell commented.
======
For your learning and benefit: see the PDF file below and print out the entire article which follows.




Cluster headache.
From: START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or RegisterEND PRINTPAGE (Orphanet Journal of Rare Diseases)
[Easy to read; one of the better overview articles I've seen. Suggest printing the full length article--link, line above--if you are serious about keeping a good medical library on the subject.]

Leroux E, Ducros A.

ABSTRACT: Cluster headache (CH) is a primary headache disease characterized by recurrent short-lasting attacks (15 to 180 minutes) of excruciating unilateral periorbital pain accompanied by ipsilateral autonomic signs (lacrimation, nasal congestion, ptosis, miosis, lid edema, redness of the eye). It affects young adults, predominantly males. Prevalence is estimated at 0.5-1.0/1,000. CH has a circannual and circadian periodicity, attacks being clustered (hence the name) in bouts that can occur during specific months of the year. ALCOHOL IS THE ONLY DIETARY TRIGGER OF CH, STRONG ODORS (MAINLY SOLVENTS AND CIGARETTE SMOKE) AND NAPPING MAY ALSO TRIGGER CH ATTACKS. During bouts, attacks may happen at precise hours, especially during the night. During the attacks, patients tend to be restless. CH may be episodic or chronic, depending on the presence of remission periods. CH IS ASSOCIATED WITH TRIGEMINOVASCULAR ACTIVATION AND NEUROENDOCRINE AND VEGETATIVE DISTURBANCES, HOWEVER, THE PRECISE CAUSATIVE MECHANISMS REMAIN UNKNOWN. Involvement of the hypothalamus (a structure regulating endocrine function and sleep-wake rhythms) has been confirmed, explaining, at least in part, the cyclic aspects of CH. The disease is familial in about 10% of cases. Genetic factors play a role in CH susceptibility, and a causative role has been suggested for the hypocretin receptor gene. Diagnosis is clinical. Differential diagnoses include other primary headache diseases such as migraine, paroxysmal hemicrania and SUNCT syndrome. At present, there is no curative treatment. There are efficient treatments to shorten the painful attacks (acute treatments) and to reduce the number of daily attacks (prophylactic treatments). Acute treatment is based on subcutaneous administration of sumatriptan and high-flow oxygen. Verapamil, lithium, methysergide, prednisone, greater occipital nerve blocks and topiramate may be used for prophylaxis. In refractory cases, deep-brain stimulation of the hypothalamus and greater occipital nerve stimulators have been tried in experimental settings.THE DISEASE COURSE OVER A LIFETIME IS UNPREDICTABLE. Some patients have only one period of attacks, while in others the disease evolves from episodic to chronic form.

PMID: 18651939 [PubMed]


http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?action=downloadfile;file=Mgt_of_Cluster_Headache___Amer_Family_Physician.pdf (144 KB | 27 )

Title: Re: First post - hello....
Post by Gen on Jan 27th, 2011 at 8:50pm
Linda thanks so much - I really appreciate all this support. Yes, I'm reading, reading, reading! (and learning!!)

Bob - that is all extremely helpful. I shall do as you suggest. Thanks very much indeed!

(10 to 2 in the morning here - I'm putting off going to bed as usual but at least now I'm doing something positive with the time by visiting you here!)

Title: Re: First post - hello....
Post by suzieq6343 on Jan 28th, 2011 at 9:13am
Gen

Small small world!
I too work for the NHS...that caring organisation that looks after it's staff!!!

Next time your in Chester let me know and if you have time we could meet for a coffee and compare clusters!! :)


Title: Re: First post - hello....
Post by Guiseppi on Jan 28th, 2011 at 10:04am

37-41withrestrictions wrote on Jan 28th, 2011 at 9:13am:
Gen

Small small world!
I too work for the NHS...that caring organisation that looks after it's staff!!!

Next time your in Chester let me know and if you have time we could meet for a coffee and compare clusters!! :)


One of the few hard and fast rules on the board, when you meet another CH'er, be it for coffee, lunch, or even a quick smoke......pic's are madatory! :)

Joe

Title: Re: First post - hello....
Post by Gen on Jan 28th, 2011 at 11:58am

Guiseppi wrote on Jan 28th, 2011 at 10:04am:

37-41withrestrictions wrote on Jan 28th, 2011 at 9:13am:
Gen

Small small world!
I too work for the NHS...that caring organisation that looks after it's staff!!!

Next time your in Chester let me know and if you have time we could meet for a coffee and compare clusters!! :)


One of the few hard and fast rules on the board, when you meet another CH'er, be it for coffee, lunch, or even a quick smoke......pic's are madatory! :)

Joe

 
Ok Joe! (And where would pics get posted - or how - on this wonderful site please?)

Suzie - yes, great! I looked for you on facebook - are you on it? Maybe pm me if you are and we can hook up there first :)
And Suzie - about the oxygen - some of the info elsewhere on this site (I think it was here but could have been on OUCH - don't remember) said that in the UK the NHS will provide it but they don't provide the high flow thingies written of as being necessary by members here. They provide a low flow one which.... as far as I understand is pretty useless for us. ! am wondering how much these high flow things cost to get oneselves (if we ever manage to get the oxygen prescribed for us!) I had a 7 out 10 on my personal pain scale last night - not nice at all!!! Believe it or not my sister-in-law (not the one in Chester - this one is near London) works for a company the NHS use for the oxygen. I mentioned CH to her at Christmas and was surprised to learn that she'd heard of it - she sends the cylinders out to some CH people. I didn't say much about it to her then but I'll give her a call in a few days to see what info she might be able to give me. If I find anything usefull out I will let you know asap!  :)

Title: Re: First post - hello....
Post by Guiseppi on Jan 28th, 2011 at 4:02pm
The oxygen delivery thingy is the "regulator" and yes, you need a high flow of at LEAST 15 LPM. In the states I see them on Craigs List and E-Bay for as little as $20 each.

Post the pics in the general area, just start a new thread "met a CH'er" or something like that! Go down to the technical questions at the bottom of the board, they have a posting in there with detailed step by step instructions!

Joe

Title: Re: First post - hello....
Post by Gen on Jan 28th, 2011 at 6:34pm
Thank you Joe :)

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