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        Cluster Headache Help and Support >> Cluster Headache Specific >> WASTE OF TIME
        
(Message started by: Shaz on Feb 2^nd, 2006, 7:50am)

Title: WASTE OF TIME
Post by Shaz on Feb 2^nd, 2006, 7:50am

Well, went and saw my neuro this morning and really did not find him very helpful. He seems to think by what I describe they are cluster headaches but because I have one really long one in my last episode, (about three) hours, he's not so sure. Wonders if they are clusters with a bit of migraine thrown in. WHAT???? All I want is a straight forward diagnosis. I did the cluster test again before I went and apart from the one long attack everything definately points to clusters. And that long attack was exactly the same as normal. The onset, the pain, everything.......

Anyway, he has recommended that on the first sign of another episode I start on the verap straight away and use the imigran injections again as abortives.

Sounds as if I am making a fuss about nothing. Just feel deflated. I just wanted someone to say "Yes this is definately what you have". After twenty five years of this have really had enough of not been 100% sure.

Will just have to get on with things though and enjoy my painfree time. No point in going anywhere else. The neuro I saw is the top guy at Salisbury and apparently, has a very good reputation.

Sorry about the winge. Just feeling a bit fed up.

Shaz [smiley=huh.gif]

Title: Re: WASTE OF TIME
Post by AussieBrian on Feb 2^nd, 2006, 8:06am

Don't blame you in the least for feeling lower than a snake's belly in a wheel rut. Takes long enough just to get in to see an 'expert' and we all know the definition of that word!

Just for the record I was once hit for just on eight consecutive hours, but what no-one tells the neuros is that it wasn't one headache - it was five of them back to back.

Battle on regardless, darlin', and remember that we're all on your side. Especially as you have such a pretty smile.

Kindest regards always,

Brian Down under.

Title: Re: WASTE OF TIME
Post by Shaz on Feb 2^nd, 2006, 8:09am

Thanks so much for that Brian. You have made me feel better already. Do know how I got through all those years without you lot xxx

Title: I don't get it..
Post by Richr8 on Feb 2^nd, 2006, 8:33am

.. a 2-3 hr run is a standard in my clusters and not unusual to my Neuro at all. Well atleast he's putting you on th eright meds. How about O2?

Looks like you are on the right track.

Title: Re: WASTE OF TIME
Post by Karla on Feb 2^nd, 2006, 10:47am

I know of a few people here that get them that last 3-5 hours long. Mine however were always 2 hours like clockwork. The main thing is your not dying of anything the neuro ruled that out. And migraine or cluster your still getting the right meds. I think your in a good spot right now.

Title: Re: WASTE OF TIME
Post by zwibbs/Scott on Feb 2^nd, 2006, 1:07pm

Shaz---I agree with Karla---you're in the right place with your posts and medications...Keep the Faith---it will always get better.

Title: Re: WASTE OF TIME
Post by Shaz on Feb 2^nd, 2006, 2:09pm

Thanks for your replies. Feeling better now the day has gone on and realise that the meds are what I need and have you lot out there. Brian I just re-read the reply I sent to you and noticed I made a grammar error in the last sentence. I really appreciate all of you out there. Dont know what I would do without this great lifeline xxx

Title: Re: WASTE OF TIME
Post by sandie99 on Feb 3^rd, 2006, 3:50am

Shaz,

I've had 3-hour cluster attack also. Usually mine were much shorter, but I do recall that odd one very well. And I've had combos: ch, them migraine, then another cluster... "fun".

And what comes to neuros... I've met many of them: 3 men, 2 women. Two of them said that it's ch streight away, one wondered if it is it, one agreed that it is after closing everything else away and one just wasn't sure. That happends.

I just hope that you'll have meds which work, so that you don't need to suffer long attacks anymore. I do recall too well what it's like to deal with kip 8 and 9s without any meds because doc too scared to subscribe me any.

And recall, venting is allowed in here! When you feel like it, go on! We're here to help you and support you in any way we can. [smiley=hug.gif]

Best wishes & PF time,
Sanna

Title: Re: WASTE OF TIME
Post by LeLimey on Feb 3^rd, 2006, 4:29am

What a load of old cobblers Shaz! I would have expected the top guy at Salisbury to have seen this..

Quote:

The upper limit of 3 h should be increased in future diagnostic criteria.

http://www.blackwell-synergy.com/doi/abs/10.1111/j.1468-2982.2006.00932.x

Evaluating the IHS criteria for cluster headache – a comparison between patients meeting all criteria and patients failing one criterion
JA van Vliet1,*, PJE Eekers2,, J Haan1,3, MD Ferrari1, for the Dutch RUSSH Study Group
van Vliet JA, Eekers PJE, Ferrari MD & Haan J for the Dutch RUSSH Study Group. Evaluating the IHS criteria for cluster headache – a comparison between patients meeting all criteria and patients failing one criterion. Cephalagia 2006. London. ISSN 0333-1024
Cluster headache (CH) is diagnosed according to criteria of the International Headache Society (IHS), but, in clinical practice, these criteria seem too restrictive. As part of a nation-wide study, we identified a group of patients who met all criteria minus one (IHS-CH-1), and assessed in which way they differed from CH patients meeting all criteria (IHS-CH). We performed a nation-wide questionnaire study for CH and CH–like syndromes, including questions based on the IHS criteria, and additional features such as restlessness during attacks, nocturnal onset of attacks, circadian rhythmicity of attacks and response to treatment. IHS-CH and IHS-CH-1 patients were compared. Of 1452 responders to two questionnaires, 1163 were IHS-CH and 289 were IHS-CH-1. The majority of the IHS-CH-1 patients were classified as such because their attacks exceeded 3 h (64%, median attack duration: 5 h), or came in a frequency of less than 1 per 2 days (16%). Age at onset was similar between the groups. The male to female ratio was 3.7 : 1 in the IHS-CH group and around 1.6 : 1 in the IHS-CH-1 groups (P < 0.005). Patients with attacks exceeding 3 h less often reported a circadian rhythmicity (IHS-CH-1: 49%, IHS-CH: 64%), episodic periodicity (IHS-CH-1: 65%, IHS-CH: 78%), nocturnal attacks (IHS-CH-1: 67%, IHS-CH: 78%), smoking (IHS-CH-1: 90%, IHS-CH: 80%) and restlessness during attacks (IHS-CH-1: 64%, IHS-CH: 76%) than IHS-CH patients (P < 0.005). Photo- or phono-phobia (IHS-CH-1: 67%, IHS-CH: 54%) and nausea (IHS-CH-1: 38%, IHS-CH: 27%) were more frequently reported by patients who reported to have attacks exceeding 3 h (P < 0.005). Similar proportions reported effect of verapamil on their attacks (IHS-CH-1: 54%, IHS-CH 61%). We conclude that average attack duration exceeding 3 h was frequently the reason for not fulfilling IHS CH criteria. Symptoms often accompanying CH such as restlessness, nocturnal attacks and an episodic attack pattern were relatively frequently present in IHS-CH-1 patients with longer attacks. These patients may therefore be diagnosed with CH. Attack frequency may not be a useful criterion for the diagnosis of CH. The upper limit of 3 h should be increased in future diagnostic criteria.

Cut and paste it and send it to him! I suggest you don't cut and paste my comments as me calling him a pencil pushing anal retentive hun probably won't endear you to him ::)

See you soon hon, we'll have a drink and make a voodoo doll of the bad man!
lots of love
Helen XXX

Title: Re: WASTE OF TIME
Post by erikadb on Feb 16^th, 2006, 2:26am

Mine sometimes run for hours and my neuro (greatest guy in world I miss him) said I was having "intractable clusters" woo-hoo so much fun those were I was in hospital hooked up to a Demerol PCA pump hitting that button like it was my only job on earth, breathing?? who needs breathing?? it has been 7 minutes and I can push button again until finally they stopped.

Title: Re: WASTE OF TIME
Post by Dragnlance on Feb 16^th, 2006, 11:02am

It is possible to have several headaches going on at the same time.
However, my hits ALWAYS run 3 hours. Count on it. Last week I was hit for nine straight hours, (as Brian says, most likely 3 back to back without a break)

I always end up with a tension and CH hit at the same time because the CH triggers the tension. I have had a Migraine and CH at the same time as well.

Vent away, as that is what friends are for. We are here to help

Dragnlance

Title: Re: WASTE OF TIME
Post by Beastfodder on Feb 16^th, 2006, 12:28pm

Disappointing response from your neuro.

2 1/2 to 3 hours wasn't unusual for me either - however care of clusterbusters and O2 it's very unusual now!

Good luck

Title: Re: WASTE OF TIME
Post by rickyshot on Feb 16^th, 2006, 2:01pm

Your neuro could be right. I too suffer the dread CH and complicated and I mean complicated migraines. Sometimes I get the two together and no one can figure out where one begins and the other one ends. Been hospitalized when that shit happens with tons of IV steroids and tapers which when I get that bad seems to be the only thing that sort of works. Since my last bout after a summer of hell I have been PF for six months a new record for me. I am not counting the five migraines I had. Those were "jokes" compared to the more complicated migraines which last for weeks with horrible symptoms and then if get get in cycle of CH to combine that Iam doomed. .... It is very hard even for the sufferer to determine which is which sometimes , never mind the neuro. Hey when I woke up in the middle of the night with a bad migraine I used my O2 and it actually helped. That was a bonus.

Title: Re: WASTE OF TIME
Post by llreed on Feb 16^th, 2006, 7:01pm

Hi Shaz,
One statement and you didn't fit the profile.... Been there, alot of us have. I pray the meds you have bring you some peace. They (neuro's) in Central Missouri can't except that fact that a women can have them. I actually had the nerve to tell the new doc. his statistics are out dated and come visit the girls here. Anyway - gave me the right meds. for CH and wished me many pain free days. Wishing you many PF days my friend.
llreed

[smiley=hug.gif]

Title: Re: WASTE OF TIME
Post by Jasmyn on Feb 17^th, 2006, 4:01am

Vent away. Longer than 3hr hits do happen. It is exhausting to have them and it is exhausting to fight with neuro's.

Glad to see that you got meds.

Title: Re: WASTE OF TIME
Post by kcopelin on Feb 24^th, 2006, 3:26pm

After 24 year diagnosed with clusters I see a new VA neurologists who "suggests" that we are dealing with something else. What might that be, pray tell. Stress headaches. (stress headaches, my fanny) RXd yoga, naprosyn and sccupuncture. Some neuro are just idiots. At least he got you on the right meds-what about O2?
PFDAN
kathy

Title: Re: WASTE OF TIME
Post by purpleydog on Feb 26^th, 2006, 6:08pm

When I first started getting CH, my hits would last anywhere from 30 minutes to 3 hours or longer. After a couple hours of this, I'd head straight to the ER. I was mixing 2 triptans, under my doc's supervision, and when that didn't work, the ER would try O2 (too late), and finally shoot me up with enough dope to knock me out.

It sucked, because my cycles would last 16 weeks. Towards the end of my cycles, I was getting pretty run down and depressed. Finally, I found this site, and tried some different things. My current neuro understands how my hits run, and has me on meds that work. I also keep him up to date on other drugs that have worked for others here, that aren't usually prescribed for CH. Even if it's news to him, he says I can try whatever I want.

I know how important it is to have your doc confirm what you already know. I've been to so many, I know my problem, and if they happen to not agree, then screw 'em. In fact, my current neuro, I saw him 13 years ago for migraines, they were tough to treat, and he tried everything he knew. He finally told me he tried all he knew, and couldn't help me. I know some CH'ers have heard that before, and it's hard. So, I moved on. But he does great with my CH, we work together to treat it.

If your doc will treat you, then keep talking to him... maybe he will see that we are not all the same, and that one long hit in a cycle is really nothing as far as being diagnosed. If we all fit into one rigid mold, then these damn things would be easier to treat, I'm sure. There may even be a (gasp!) cure.

Don't give up! What you have is very real, and has a name. You know what it is. Your doc will come along, but what is important is that he is willing to treat you for these. :)