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        Cluster Headache Help and Support >> Cluster Headache Specific >> Please read this link
        
(Message started by: starlight on Aug 10^th, 2006, 2:20pm)

Title: Please read this link
Post by starlight on Aug 10^th, 2006, 2:20pm

Hi all--I hope you are all pain free (including the tough burly guys here). I am posting this link separately (I also posted it under the thread "Clusters?"). I hope that it can raise general awareness (because I felt it raised my own awareness). It is an interesting article and it would not hurt to read it. Take care, Starlight

http://jnnp.bmjjournals.com/cgi/content/full/70/5/613

Title: Re: Please read this link
Post by Margi on Aug 10^th, 2006, 2:50pm

I remember reading that article when it came out six years ago - at the time, it was quite refreshing to see that they were at least studying cluster.

Here's one, as well, that was updated just two days ago. I think it's the best description with the most useful links I've seen to date. It even introduces the appearance of "ictal" headaches, that are quite often misdiagnosed as cluster:

http://en.wikipedia.org/wiki/Cluster_headache

Title: Re: Please read this link
Post by Sandy_C on Aug 10^th, 2006, 5:57pm

Thanks to both of you for posting these articles. The one Margie posted, I already have saved and bookmarked, but I also bookmarked Starlight's. It's interesting, because I always thought I was kind of the oddball female with cluster headaches, because I started my first cycle at age 53. Now, I see maybe I'm not so odd as I thought (nobody needs to respond to that, thank you ;;D)

Sandy

Title: Re: Please read this link
Post by starlight on Aug 10^th, 2006, 7:21pm

Margie,

Thank you for the links. I will definitely look through all of the Wiki links very soon. It looks like there is quite a bit of info there. Thank you, Star

Title: Re: Please read this link
Post by starlight on Aug 10^th, 2006, 7:22pm

Sandy,

You're welcome! Hope something there was useful! Star

Title: Re: Please read this link
Post by serendipity on Aug 11^th, 2006, 9:49am

starlight, it's pretty discouraging to read that women sometimes have TWO ONSETS of cluster headaches - one in their second decade and one in their fifth or sixth decade.

Even more reason to dread getting older. :'(

Title: Re: Please read this link
Post by rickyshot on Aug 11^th, 2006, 9:49am

SHOULD THE IHS CRITERIA FOR CLUSTER HEADACHE BE MODIFIED?
Many of our patients had photophobia, phonophobia, nausea, and vomiting with their headaches. These symptoms are not part of the IHS criteria for cluster headache and perhaps they should be added to make the criteria more sensitive. Can these symptoms still be used to distinguish migraine from cluster headache and tension-type headache? These symptoms may not be syndrome specific but just markers of trigeminal-autonomic pathway activation. Table 4 compares the frequency of photophobia, phonophobia, nausea, and vomiting from our own and two other cluster headache studies28-29 with the mean frequency of these symptoms from seven migraine studies.30 Photophobia and phonophobia occurred with equal or greater frequency in cluster headache than migraine. Nausea and vomiting occurred less often in cluster headache than in migraine suggesting that these two symptoms are useful in differentiating migraine from cluster headache, but photophobia and phonophobia are not. Further studies are needed on the prevalence of "migrainous symptoms" in cluster headache before we can justify a change in the IHS criteria.

I copied points of interest from the article. These docs are not saying migraine is a cluster. They are throwing out the possibilty that women may present differently than men. This article needs to be read. Because cluster is so rare the bounderies may be blurred at times and the definition may be altered in the future as more research is done.

I for one am happy any attention is being paid to this blight. And I am open to suggestions and new criteria and studies done by reputable agents.

One thing for certain I hold to a one marker of CH. It is a restless headache. you really can't be still. Moving and writhing in bed does not count as laying still as with a migraine moaning. But I can see where other symtoms not classically associated with it my be added to the criteria.

Just listen to our stories alone especially the women. It is even harder when the sufferer also has migraines like some of us do. The lines get very blurred.

Title: Re: Please read this link
Post by rickyshot on Aug 11^th, 2006, 9:59am

Margi Your article is the bomb a must read also. I am printing it out for people I let in to my life to understand me. I like the mention of LSA for treatment.

Title: Re: Please read this link
Post by Margi on Aug 11^th, 2006, 10:12am

As I said, the second link is much more current and shows a lot of relevant information and how the diagnostic tools have evolved since the first article was published.

Cluster is what it is. Revising the diagnostic criteria is only going to lead to blurred lines again and will encourage including other types of h/a. Why do that? Cluster hasn't changed. Why should the diagnostic criteria? The scary thing about that is that something crucial might be missed if doctors start diagnosing cluster just because a patient presents with "eye" pain and "Kip 10's".

I'd hate to hear a story of someone dying of an underlying condition that wasn't discovered because the patient had been labelled a clusterhead and chemically treated as one.

As I've said ad nauseum - headache pain can't be seen. Doctors have to rely on what patients tell them in order to diagnose them and there is no lab test for cluster. If your symptoms honestly don't fit inside the cluster box, don't try to stuff them in there just so you can belong to an internet support group. It could potentially cost you your life. Why is this such a hard concept to grasp [smiley=huh.gif]

*disclaimer* by using the word "you", I am not referring to anyone in particular so please extinguish your torches and carry on about your business.

Title: Re: Please read this link
Post by thomas on Aug 11^th, 2006, 10:21am

on 08/11/06 at 10:12:28, Margi wrote:

As I've said ad nauseum - headache pain can't be seen. Doctors have to rely on what patients tell them in order to diagnose them and there is no lab test for cluster. If your symptoms honestly don't fit inside the cluster box, don't try to stuff them in there just so you can belong to an internet support group. It could potentially cost you your life. Why is this such a hard concept to grasp

I can't agree with this more whole heartedly than I already do. Treating anything other than CH, as CH is a recipie for major health problems and/or death.

Title: Re: Please read this link
Post by serendipity on Aug 11^th, 2006, 10:29am

Margi, it's an interesting article (and after reading it I have to say that it seems very accurate...it certainly describes my headaches more accurately) but it would hold more water if it wasn't Wikipedia, you know?

starlight's article may be older, but since it did come from a medical journal and was written by a neurologist, I wouldn't completely discount the information contained in it.

I think both links are great. I've printed them out, and like others, plan to share them with my family. I'm sure there's plenty to be learned from both articles.

Title: Re: Please read this link
Post by chewy on Aug 11^th, 2006, 10:34am

Quote:

These symptoms are not part of the IHS criteria for cluster headache and perhaps they should be added to make the criteria more sensitive.

Its not listed with the IHS for a reason. They are common Meeegraine indications but not common CH indicators.

Read the reply by Thomas.

Title: Re: Please read this link
Post by rickyshot on Aug 11^th, 2006, 10:48am

Any "abnormal" ha should be investigated before a diagnosis is given. I can't even begin to count how many CT scans, MRI and neuro exams I have been through including blood tests for sed rates to rule out temporal arteritis which is very dangerous in itself causing possible blindness if untreated.
Who the hell wants to join an internet group of folk who suffer this much to the point where we become quite self-absorbed. Although I met a great group of friends and support here, I wish I did not have to. Y'all understand I am sure. Agree with Thomas for sure on that one.

Title: Re: Please read this link
Post by Margi on Aug 11^th, 2006, 10:52am

on 08/11/06 at 10:29:25, serendipity wrote:

Sorry but WTF? I guess you can't relate to how refreshing this stinky old Wikipedia article is to those of us who have been campaigning for years to get correct cluster information out there. To see a member of our community have his artwork displayed there, J.D. Fletcher, to see our very own Floridian's website linked there, to see our cluster buster friends hard work being recognized, to see OUCH there, to see GOOD diagnostic tools..... this article is a pat on the back to every one of us here who has worked hard to get the name "cluster" recognized.

I'm sorry that Wikipedia doesn't live up to your standards. Frankly, if this was written on toilet paper in crayon, I'd still be excited to be finally seeing accurate cluster information out there.

Title: Re: Please read this link
Post by serendipity on Aug 11^th, 2006, 11:02am

Calm down. I said I thought it was an excellent article. I just wish we could see something this accurate published in a medical journal somewhere, instead of on the home of incorrect information that is Wikipedia.

Title: Re: Please read this link
Post by chewy on Aug 11^th, 2006, 11:03am

Quote:

but it would hold more water if it wasn't Wikipedia, you know?

No. I dont know.

Quote:

To see a member of our community have his artwork displayed there, J.D. Fletcher, to see our very own Floridian's website linked there, to see our cluster buster friends hard work being recognized, to see OUCH there, to see GOOD diagnostic tools

Thats not credible enough?

Title: Re: Please read this link
Post by rickyshot on Aug 11^th, 2006, 11:09am

on 08/11/06 at 10:52:24, Margi wrote:

Here Here Margi. I printed this one for my friends and family. It is so easy to understand. Think I 'll keep a copy for future ER visits too.

Title: Re: Please read this link
Post by nani on Aug 11^th, 2006, 11:14am

Wikipedia can be added to by anyone, right? I think that was her point. The article itself is very good, but if I remember correctly....many of us added info to it. It would be nice if something like that came out of a professional journal, that would mean more doctors might have a clue...

Title: Re: Please read this link
Post by serendipity on Aug 11^th, 2006, 11:22am

Right, nani. I think the article itself is plenty credible and very accurate. All I'm saying is, I wish some neuro somewhere would publish an article in a medical journal with this same (excellent) information because a lot of people will read this article and completely discount it because it's on Wikipedia, which is unfortunate.

Look, I belong to another online forum (not cluster headache-related). It's basically a debate forum, I guess. Wikipedia articles are not allowed on that forum as a means for backing up your argument because there are so many inaccuracies there. In 2005 The New York Times published an article entitled "Snared In the Web of a Wikipedia Liar." Need I say more. It's just not a credible source. Please don't confuse this as me saying that the article and whoever wrote it aren't credible. That's NOT what I'm saying.

I hope that not every post I make is going to be met with hostility because I disagreed with some of you in another thread. I feel like I've got a black mark on me now.

Title: Re: Please read this link
Post by Margi on Aug 11^th, 2006, 11:33am

well, in that same vein, then I guess you would paint all of these "amateur" cluster sites with the same brush then - ch.com, OUCH U.S., OUCH Canada, OUCH UK, just because they're not written by medical professionals.

I think that information that comes from people who actually suffer from or live with the disease IS pretty damned accurate.

Here's a challenge for you then - print out the stinky Wikipedia article and take it to your doctor. That's ONE way to get it out there to be read by "professional" eyes.

Title: Re: Please read this link
Post by nani on Aug 11^th, 2006, 11:34am

on 08/11/06 at 11:33:22, Margi wrote:

Here's a challenge for you then - print out the stinky Wikipedia article and take it to your doctor. That's ONE way to get it out there to be read by "professional" eyes.

Now, that is a brilliant idea!!! *turning on the printer*

Title: Re: Please read this link
Post by serendipity on Aug 11^th, 2006, 11:37am

Are you even reading what I'm saying, Margi? As an "insider", I KNOW the information is good. But you're talking about getting the word out to people who don't know about Cluster Headaches, and I'm saying that putting even the best information out on a website that is widely considered to be an unreliable source for information isn't going to do that. I thought the article was awesome. I never, ever said otherwise.

Jeez, can you stop being angry for two seconds and actually read what I'm saying?

P.S. I print out TONS of information off this website and give it to my doctor. He's getting this one, too.

Title: Re: Please read this link
Post by Margi on Aug 11^th, 2006, 11:47am

oh yeah, I'm reading every word, Serendipity. I don't miss much.

Title: Re: Please read this link
Post by serendipity on Aug 11^th, 2006, 11:50am

Then how on earth did you manage to misinterpret what I said so badly?

Title: Re: Please read this link
Post by Kevin_M on Aug 11^th, 2006, 12:02pm

In reading the article Starlight linked, some things could be cleared up better.

Quote:

Thirty two women and 69 men were identified.

Lets just say the number is 100 patients.

Quote:

Episodic cluster headache (more than 14 headache free days a year) was present in 75% of women and 76.8% of men. Chronic cluster headache occurred in the remainder (25% and 23.2% respectively)

And say 75 are episodic, 25 chronic

Quote:

Thirty four per cent of women and 45% of men stated that alcohol would induce a cluster headache,

Now, knowing chronics are far less prone to having alcohol as a trigger, the above percentages will seem low. Of the 32 women tested, 25% are chronic, being 24 episodic and 8 chronic. 34% of 32 is 11 women that find alcohol a trigger out of 32. But the study does not delineate the percentages by episodic and chronic. If it was all episodics that found alcohol a trigger, then 11 of 24 is 46%, which still seems low for clusters.
With the men, of the 69 tested, 77% are episodic, 23% are chronic and 45% of the total say alcohol is a trigger. If the chronics are eliminated then 31 of 53 men reported alcohol a trigger, or 58.5%.
Those numbers seem to fit the responses here closer. Just going by the numbers in the study can seem less accurate.

Quote:

However, physicians who treat patients with headache must realise that photophobia, phonophobia, nausea, and vomiting are part of the cluster headache symptom profile and that the presence of these symptoms does not eliminate cluster headache from the differential diagnosis

Here they lump nausea and vomiting in with photophobia and phonophobia saying they do not eliminate cluster headache from the differential diagnosis.

Quote:

Nausea and vomiting occurred less often in cluster headache than in migraine suggesting that these two symptoms are useful in differentiating migraine from cluster headache, but photophobia and phonophobia are not.

However, here they purposely single out nausea and vomiting as being useful in differentiating migraine from cluster.

Quote:

Further studies are needed on the prevalence of "migrainous symptoms" in cluster headache before we can justify a change in the IHS criteria.

Quote:

Further studies of the female patient with cluster headache are necessary to better define this primary headache syndrome in women

I like Wikipedia better
---------

Title: Re: Please read this link
Post by Margi on Aug 11^th, 2006, 12:06pm

Kevin. Seriously. :-*

Title: Re: Please read this link
Post by starlight on Aug 11^th, 2006, 1:30pm

I think the point of the article is that certain symptoms considered "migrainous" are more commonly experienced by cluster sufferers than once believed. I don't even understand what is controversial about that. It is not saying in any way that "clusters" are really "migraines" or that people with "migraines" really have "clusters". It just means that some people with clusters experience migraine-like symptoms while experiencing the cluster headache. I can't even begin to understand why that would be controversial.
There is no reason to "trash" the article--I don't really think anything in the article is "outdated" or a laughable myth. It's just a study that's all.

Title: Re: Please read this link
Post by starlight on Aug 11^th, 2006, 1:35pm

Also, which link do I read from Margi? is it the Wiki article or one or all of the external links at the end of the Wiki article cause I would like to read it?

Title: Re: Please read this link
Post by E-Double on Aug 11^th, 2006, 1:36pm

Dr. Noah Rozen did suggest that mnay are trying to add sub categories to CH as part of the IHS criteria due to the presentation of CHer's like me lol.........chronic that present with cycle w/in cycle for example.

If I were to have been diagnosed according to the old criteria then I might now be considered episodic again but would have had something like 10-15 cycles within the past 2 yrs because a couple of times I did get a small break

Title: Re: Please read this link
Post by Kevin_M on Aug 11^th, 2006, 2:19pm

on 08/11/06 at 13:30:08, starlight wrote:

There is no reason to "trash" the article--I don't really think anything in the article is "outdated" or a laughable myth. It's just a study that's all.

No one here has trashed the article, it's just that leaning on the statistic for the percentage of people finding alcohol a trigger would not seem a sturdy tree.
If I was asked if alcohol was a trigger for me the answer would be a "no". I don't drink, that would have to be cleared up first, participation by only CH'ers who do have a drink, which is not stated.

It seems to say that of the symptoms being considered, nausea and vomiting are in occurance but lowest on the totem pole for consideration.

Quote:

Nausea and vomiting occurred less often in cluster headache than in migraine suggesting that these two symptoms are useful in differentiating migraine from cluster headache, but photophobia and phonophobia are not.

The study includes about a hundred CH'ers. How many also said they get migraines too, anxiety disorders, change of life, or was having been diagnosed CH the only criteria for the study? Sure, picky stuff, but has an effect on the outcome.

Title: Re: Please read this link
Post by starlight on Aug 11^th, 2006, 2:28pm

I hear what you're saying, Kev. They don't make certain things like that totally clear--like does a person even drink to begin with? Definitely wasn't saying not to think criticially about it. Star

Title: Re: Please read this link
Post by Kevin_M on Aug 11^th, 2006, 2:36pm

Getting a hundred CH'ers for a study may include people with a wide variety of other factors involved.

Title: Re: Please read this link
Post by unsolved1 on Aug 11^th, 2006, 2:42pm

Thanks people, but I don't really need to look at any 6 year old articles. I was hoping that we would try to stay on top of things here and get the newest, most accurate information. ::)

I also don't need to print anything out and take it to the ER with me. I know if you did that around here, the doc at the ER would most likely take that as an insult to his/her intelligence and would order the bigger needles for you after a looong wait. ::) (It's a good thing I already know all the docs around here [at the ER's] ... because I go in and call all my own shots, telling them axactly what I need) <--- 'been there, done that'

Unless it's some information that just came out ... if you really need to print out articles and forward links to your doctor about CH ... you better find a new doctor!

Goodluck people with trying to get an understanding (or definition) of what clusters really are.

PF Wishes

UNsolved 8)

Title: Re: Please read this link
Post by Kevin_M on Aug 11^th, 2006, 2:44pm

Here's a newer one that is a beginning:

Cluster headache is associated with the G1246A polymorphism in the hypocretin receptor 2 gene

http://www.neurology.org/cgi/content/abstract/66/12/1917

Quote:

The genotype and allele distribution varied significantly between patients and controls. Homozygous carriers of the G-allele had a twofold increase in risk for CH

Title: Re: Please read this link
Post by Linda_Howell on Aug 11^th, 2006, 2:44pm

Quote:

are trying to add sub categories to CH as part of the IHS criteria due to the presentation of CHer's like me lol.........chronic that present with cycle w/in cycle for example.

Eric, I was not of the impression that cycle with-in a chronic cycle...was to be considered a sub catagory. I have always had a cycle with-in a cycle and every single chronic I have ever talked to here and in person has agreed they do too. I just wonder why Rozen or others want to add that to the IHS criteria. Hmmm. Very interesting.

Title: Re: Please read this link
Post by serendipity on Aug 11^th, 2006, 2:47pm

Man, if I didn't print out stuff and take it to my doctor I'd still be taking Caffergot and Calan. Is it really that uncommon for doctors not to be as up on the latest treatments as we are? I thought that was pretty much the sad truth of getting treatment.

If anyone knows of any neuros in the Charlotte, NC area who know as much or more about cluster headaches as we do around here, please point me in their direction!

Title: Re: Please read this link
Post by Margi on Aug 11^th, 2006, 2:48pm

dont' all chronics have cycles within cycles? I remember going through this with Ted - he was a classic chronic and his "low cycle" would see him with a couple weeks of only sporadic every other day attacks.... update on Teddy, though, he's completely pain free thanks to lithium and verapamil FINALLY working for him after being chronic 7 years, I think he's going on 6 months pain free now (although I haven't heard from him in a while). Technically, though, I guess he's still chronic because he's not med free.....?

Eric, how long HAVE you had pain freedom? More than a month?

Title: Re: Please read this link
Post by Kevin_M on Aug 11^th, 2006, 2:52pm

on 08/11/06 at 14:44:54, Linda_Howell wrote:

I have always had a cycle with-in a cycle and every single chronic I have ever talked to here and in person has agreed they do too.

Here too, Linny.

Title: Re: Please read this link
Post by unsolved1 on Aug 11^th, 2006, 2:53pm

on 08/11/06 at 14:48:33, Margi wrote:

I guess he's still chronic because he's not med free.....?

No. If he's been PF for over 30 days, then he's no longer considered 'chronic' (with or without meds)

UNsolved

Title: Re: Please read this link
Post by Margi on Aug 11^th, 2006, 3:06pm

really? I always thought it was unmedicated pain freedom.

But...it also used to be only 14 days of pain freedom before "they" changed it to 30.

Thanks for the update, Unsolved.

Title: Re: Please read this link
Post by LeLimey on Aug 11^th, 2006, 3:10pm

Okay I'd just like to add a true story here to the pot of misdiagnosis.

I've been talking to a "clusterhead" here.
This person was diagnosed as a clusterhead by a neuro and prescribed triptans.
It could have killed them.
What they actually have is Basilar Artery Migraine and vaso constrictors can kill people who use them with this condition.

It's really scary to think that this misdiagnosis occured but not all neuro's are headache specialists which is why I stress every time that you should always demand to see a headache specialist neuro.

I have another friend here who saw an MS neuro and was diagnosed with CH. I recommended he contact the Institute of Neurology which he did and as it turns out he has Paroxysmal Hemicrania which whilst in the same group of headaches can be treated really effectively with Indomethacin.

I'm not saying anyone here does or doesn't have CH.
All I'm saying is we owe it to ourselves to get an accurate diagnosis from a specialisr in the field our condition is in and to question, question question!

CH does "mutate" and people do have atypical symptoms and it isn't always a straightforward diagnosis. We all know people in that position but they have seen HA neuro's and eventually got sorted out. Its an uncommon condition, you need expert help.

I don't deserve anything less and nor do you.
Helen

Title: Re: Please read this link
Post by E-Double on Aug 11^th, 2006, 3:14pm

The longest I went PF was 14 days exactly.

2x once it was completely PF then slammed again and the other I had activity but not hits.

Maybe he was also suggesting due to the studies they are doing and as we find here that we rarely find a "classic" CHer anymore.

I rarely find people here anymore who don't morph into something crazier than what we see defined as CH....I mean, I used to be clockwork. This is what classicly defines CH.
Then things got out of control and didn't have a pattern. Does this mean that those who do not present pattern have something else??

Some present with erratic attacks.

There is research which is suggesting longer and longer attacks. That are still CH but some here and I love and respect you all would still at times call it crap even though it is empirically based, vaidated peer reviewd literature.

I definitely feel we are a small group that needs more and more support and research devoted to us and that many get misdiagnosed with CH when they do not even have anythin along the lines of it, however, like with many other diseases we find variants.

Most of you know I happen to get a few other HA types in addition to CH.....

One developed while at Dalcon in '05. It came out of nowhere and literally remains. It feels like someone is just flicking me ontop of my head in a specific location....It is like Chinese water torture yet it does not really hurt......Dr. Sheftell calls it an icepick variant.....it's a variant because it presents as 1 diagnosable HA type yet is different then what they see.....kinda like we use in the DSM IV (Diagnostic and Statistical Manual of Mental Disorders) when we have blank disorder NOS ..this means not otherwise specified.

So to end my tangent....there are clear cut diagnostical criteria However I do believe that many may fall under the Not otherwise specified criteria or Variants of.

:-*

Title: Re: Please read this link
Post by E-Double on Aug 11^th, 2006, 3:17pm

on 08/11/06 at 14:48:33, Margi wrote:

........ Technically, though, I guess he's still chronic because he's not med free.....?

He is episodic because of time regardless of being on meds or not.
They made that change when revisions were made in the updated IHS criteria

Title: Re: Please read this link
Post by rickyshot on Aug 11^th, 2006, 6:56pm

Bravo Helen. So true especially with people with other head problems like me. My migraines are so complicated that is took years to find out that I was having CH as well. I got the diagnois here in Canada by my first neuro when I was getting "those" headaches I used to call them. He perscribed Indomethecin and that did not work. He said I hope you are not having cluster headaches. I said what is that. He went on to explain it to me and had me keep a diary. I was in cycle at that time and very congested and was treated for sinus infection by a GP and of course three weeks had passed and the "infection" was not improved at all. Not to mention the fantastic headaches I was having. I was talking about suicide. I said this is not normal I have a brain tumor. My neuro assured me by my CT scan I had in the ER I did not have a tumor. He asked me if I laid down with these headaches and other pertinent questions. I said I would run around the house breaking things, throw myself on the floor writhing. I was ashamed to say it. I thought I was crazy and abusive to my kids. Finally he came to the conculsion of cluster headaches along with my complicated migraines. Last year I changed neuros to the one in my hospital who had treated me a few times in the ER and was even more knowlegeble even to the point of episodic vs chronic all the treatments including alternative. He was clever enough to know last year it was migraine that landed me in the hospital and that was going on for weeks. The markers hours of pain, other crazy symptoms, extreme nausea and I could LAY DOWN and suffer. Acutually I could not walk to the bathroom I was so weak and out of balance. O2 did not help. With Ch I can rock, dance, run amok. Plus I had no congestion although it switched to my right eye and they ruled out temporal ateritus and treated me for that. Being the worst migraneur he ever saw he deduced that the eye pain this time was from migraine not CH. It was not the hot poker in the eye pain with tearing and drooping.

All this to say the lines may be fine but the lines are there and you need a good diagnosis, lest your life could be in danger.

PS Unsolved I am taking the article to ER because I work at a huge teaching hospital and the residents are not as knowledgeble as my neuro. When I go I pretty much call my shots with the on call neuros of which my doc is one. But when the resident comes I am schooling some of them.

Title: Re: Please read this link
Post by wildhaus on Aug 13^th, 2006, 1:40pm

Why is it that whenever I go through threads like this one….. I start having doubts
and get mixed…… and all my anxieties and doubts re-surface….. and my self-confidence
gets kicked back to god knows where…….
And I was diagnosed by a proper specialist…… and being treated by an even more competent
team of pain specialists……
How much I wish my new “girl friends” name was not O2, and for lunch at times I have to “eat” (spray) Triptans….. and not eat food ( and we have very good food at our plants restaurant),
So any publication (and I hope there will be more) are more than important….. for the professional and public awareness about CH……. but not for self diagnosis!

Michael

Title: Re: Please read this link
Post by kevinpix on Aug 13^th, 2006, 2:40pm

Bumper cars rule, I mean BUMP!

Title: Re: Please read this link
Post by MJ on Aug 13^th, 2006, 3:22pm

on 08/11/06 at 14:44:54, Linda_Howell wrote:

Historically

During my (by the IHS standards) chronic cycles of 3 years I never once had a cycle within a cycle medicated or not.. Maybe an occasional but rare few hours break..

Every single day it was the same number of hits and the same amount of pain, the only diff was wether it was 8 or more hits and this was an hour by hour change.

Due to this fact and how most chronics here claim cycles within, I stand as variable episodic. Unlike most chronic sufferers my sometimes longer cycles just end.

Unlike many episodic sufferers every cycle varies in length but not in level of pain or frequencies of hits.
The daily grind has never changed for me, as many here do with some days only shadows and or a variation in pain levels. Untill I came here I assumed all Cheads were like me..

So do I have classic CH or a variation thereof. Am I the base for comparison or is E-Double Or Georgej, or unsolved or chewy, or starlight, etc.. It's become pretty hard to lump everyone with CH into a bowl and call it done.

I Remember years back when there was only someone else somewhere in the world with CH that medical literature suggested and the opportunity never came to compare or understand. Maybe now we have finally gotten there and are finding that these variations do exist. Many of us just dont want to let go of our predetermined notions of what we all suffer from.

The upside is we all look a little harder at not only what we have but what others may have as well. (Guess that can be a downside too) but knowledge gets better every day.

Title: Re: Please read this link
Post by Charlotte on Aug 13^th, 2006, 4:05pm

Going by the discussion here, I am still chronic ch. From my neurology appointment, I am a noncategory. However, the neurologist & Dr are both thinking outside the box and actually helping me with that noncategory ha.

Charlotte