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        Cluster Headache Help and Support >> Cluster Headache Specific >> Ever been told there is something beyond this?
        
(Message started by: birdman on May 5^th, 2007, 8:59pm)

Title: Ever been told there is something beyond this?
Post by birdman on May 5^th, 2007, 8:59pm

My neuro called me and told me that she had been reviewing my history. She wants me to keep a diary involving number of hits, duration, treatment method, nasal congestion, tearing,etc. She was very conecerned that I have been unsuccessful in getting of the verapamil in over 14 months. I taper off very slowly but they keep reappearing. She said that she feels it could be building into something "more". And possibly another medication was needed. She stated what it was but it was term I didn't understand and like a dope didn't ask her to repeat.
Does anyone kow of anything beyond cluster that it could turn/morph into? The only thing I could think of is that I am going from episodic to chronic. But that is not what she said. Any thoughts?

Title: Re: Ever been told there is something beyond this?
Post by BMoneeTheMoneeMan on May 6^th, 2007, 1:24pm

Well, thats a tough one. In order to diagnose clusterheadaches, your doc should have ruled out other things first. For example, if you had an MRI or other scan, it might show a sinus infection or other problem. Typically, ruling out other things is a good way to diagnose clusters.

Did you have other scans and tests done before your diagnosis?

Title: Re: Ever been told there is something beyond this?
Post by Guiseppi on May 6^th, 2007, 2:07pm

I can't help you much with the question. We have many people on the board who have suffered for 20-30 plus years, and I haven't heard anyone mention the CH morphing into something else.

The morphing many of us are painfully aware of is that meds that worked for a long time suddenly stop working. Or they'll switch from episodic, to chronic, disappear for up to several years then come back again. Please press your doc a little further and update us on what exactly he meant!

Guiseppi

Title: Re: Ever been told there is something beyond this?
Post by birdman on May 6^th, 2007, 7:00pm

I am thinking that I am either heading toward chronic or building up some sort of resistance to the verapamil. Either way stinks. As soon as I get an answer I will update this link.

Title: Re: Ever been told there is something beyond this?
Post by clusterwife on May 8^th, 2007, 9:20am

The Beast wears many masks, many of which can be described. I once heard that the pain doesn't actually change, just the way "ya'll" deal with it changes. Oh, and the beast loves to switch sides too. Leah.

Title: Re: Ever been told there is something beyond this?
Post by Charlotte on May 8^th, 2007, 10:12am

keeping a diary is a good tool and a good suggestion from your doc. Is there a reason why the doc wants you to stop verapamil?

Charlotte

Title: Re: Ever been told there is something beyond this?
Post by birdman on May 8^th, 2007, 12:45pm

Doc doesn't want me to stop taking verapamil, just concerned that I may be building a tolerance or resistance to it. I have been on it at varying dosages for over a year and ever time I try to taper off, the headaches reappear. Not sure if coincidental or what?

Title: Re: Ever been told there is something beyond this?
Post by DannyV on May 9^th, 2007, 12:31am

When you taper off, they re-appear? Does that mean that when you are on a daily dose you have success with verap?
If you have had a standard EKG and high doses of verap are safe for you, I do not think that there is any danger at all in taking it daily long term.
For years verap. was my answer. Even though it unfortunately does not work nearly as well anymore, I still take 240 mg 3x a day . Sometimes 4x a day. when things get real bad. Imitrex injections for as many as I can. I do not know what your doc could mean. Let us know please. Best of luck.

Title: Re: Ever been told there is something beyond this?
Post by birdman on May 9^th, 2007, 8:49am

The verap keeps my HA's limited to say the least. I usually end up with two-three really bad weeks but the rest of the cycle, usually 2-3 months, the verap is kicking butt. Hope this doesn't change. The concerns that doc had where that every time I try to taper the cycle seems to start over again. Not sure why.

Title: Re: Ever been told there is something beyond this?
Post by JeffB on May 9^th, 2007, 9:22pm

take my Verapamil away and I will shoot the poor son of a bitch that tried.
Besides, helps with the bp!

Title: Re: Ever been told there is something beyond this?
Post by BarbaraD on May 10^th, 2007, 7:39am

How much verap are you taking? Some here have been on verap for years with no ill effects. They up the doses when getting hit and lower it when not in cycle.

Some use lithium with it as a prevent (don't know what dosage).

Getting the "right" cocktail is the secret to preventing them (or keeping them at bay), but that takes trail and error (a lot of errors).

TALK to your nero and ASK questions if you don't understand something. YOU must stay in charge of these darn things.....

Hugs BD

Title: Re: Ever been told there is something beyond this?
Post by birdman on May 10^th, 2007, 8:27am

Right now at 960mg of verap all at one time. Keeps with only one a day and maybe some shadows later in the day. Also been on a taper but that ended this morning. We will see how things develop with jus tthe verap as preventative. Thinking about dosing.

Title: Re: Ever been told there is something beyond this?
Post by burnt-toast on May 10^th, 2007, 8:56am

Outside of Horner's syndrome (droopy eyelid) and sleep deprivation leading to chronic fatigue and possibly depression…, maybe? Episodic morphing into Chronic occurs, but this transition is not highly prevalent either.

I think its been said before but a good Neuro., would rule out other physical causes via testing prior to diagnosing CH.

I have found no reference to CH morphing into other more severe syndromes. CH is a painful/disruptive disorder that can causes physiological issues, but no confirmed permanent damage (although it sure feels that way sometimes) and no life threatening damage.

Hear your Neuro. out and post whatever she/he is projecting CH to morph into.

Tom

Title: Re: Ever been told there is something beyond this?
Post by birdman on May 10^th, 2007, 2:52pm

I spoke with my md again and she states that since I have not been able to get off the meds for so long, I might be, and my spelling is just a guess, something hydrocrania. Anybody have any thoughts on what she is talking about. Thinking about getting another opinion from the orginal neuro who diagnosed me. Only problem is he accepts no insurance and is quite costly.

Title: Re: Ever been told there is something beyond this?
Post by swimchica623 on May 11^th, 2007, 10:15am

My neuro said that to me but like the other posters said this was the first time he brought up the idea that I might be chronic (almost 11 months now since onset, no break yet, and a few other things I won't go into in detail PM me if you wanna know...but its more than just the actual time). The only other thing he said was the hemocrania (sorry I forgot the name) type headaches that a few people on the board also get..but I reminded him we had already tried indocyn awhile ago and I didn't respond to that. That's the only other thing I can think of that you might suggest trying if you have already had the MRIs and CT scans and such because that won't show up on them either.
Good luck...
Lisa

Title: Re: Ever been told there is something beyond this?
Post by birdman on May 11^th, 2007, 2:24pm

I found out the spelling of what she was talking about. It is paroxysmal hemicrania. Anybody have any useful information on this. I hate to google and go with that when I have the great Ch'ers of the world hear at my fingertips. Any info would be greatly appreciated.

Title: Re: Ever been told there is something beyond this?
Post by nani on May 11^th, 2007, 3:14pm

I know 2 things about it.
1)It is one of the TAC headaches, as are clusters.
2)It is almost 100% responsive to Indomethacin. :) Indo can be hard on the tummy, and can cause some wicked rebounds, but it works so well for PH that it's included in the diagnostic criteria. ie: responding to indo means you have PH.
It's not all that unusual, according to Dr Noah Rosen of the Jefferson HA center, for people with one kind of TAC headache to occasionally morph into other types. None are better or worse in terms of overall effect on health.
Keep us posted, sweetie. pf wishes and hugs, nani

/ for spelling

Title: Re: Ever been told there is something beyond this?
Post by birdman on May 11^th, 2007, 3:18pm

This may be a dumb reply but what is PH?

Title: Re: Ever been told there is something beyond this?
Post by nani on May 11^th, 2007, 3:46pm

Paroxysmal Hemicrania

Title: Re: Ever been told there is something beyond this?
Post by seasonalboomer on May 11^th, 2007, 4:25pm

on 05/11/07 at 15:46:37, nani wrote:

Paroxysmal Hemicrania

But, no will ever ask you if you've "got a hemi in there" pointing to your head.........

Hav a great weekend.

Scott

Title: Re: Ever been told there is something beyond this?
Post by Lotus on May 11^th, 2007, 8:27pm

on 05/11/07 at 15:14:09, nani wrote:

It's not all that unusual, according to Noah Rosen of the Jefferson HA center, for people with one kind of TAC headache to occasional morph into other types. None are better or worse in terms of overall effect on health.

So you mean people who have CH can suddenly morph into hemicrania and vice versa? And maybe people who have migraines can suddenly morph into CH and then back?

And migraine is not better or worse than CH in term of overall effect on health? But I thought that Basilar Migraine has a much higher risk of stroke than CH ?

Can you explain more please, thank you :)

Annette

Title: Re: Ever been told there is something beyond this?
Post by nani on May 11^th, 2007, 8:52pm

on 05/11/07 at 20:27:45, Lotus wrote:

Sure.
First of all, migraines are not included in the TAC (trigeminal autonomic cephalgia) type headaches. CH, SUNCT, PH and CPH (that would be chronic paroxysmal hemicrania) are.
See here:
http://www.medifocushealth.com/NR019/Understanding-Cluster-Headache_Introduction-to-Cluster-Headaches.php

Now, go to the OUCH website and click on the OUCH news link. Go to the "Read the latest newsletter" link.
Click on the April 2006 issue and scroll down to the "Ask Dr Rosen" column. He explains the "morphing" concept pretty well. He's a neuro at one of the leading University Headache Centers here.

And regarding your last question about BAM, again, I'll remind you that migraine and TACs are two different things. Would you like me to explain anything else?

Title: Re: Ever been told there is something beyond this?
Post by Lotus on May 11^th, 2007, 9:26pm

Thanks Nani :)

So migraine and TAC are different? What are their differences please?

Also if one type of TAC can morph into another then back again, wouldnt that cause difficulty in diagnosis? If you have CH and you go to see your doctor at the time your headache has morphed into say SUNCT for example, is it not impossible for the doctor to diagnose CH for you?

Thank you very much Nani, much appreciated.

Annette

Title: Re: Ever been told there is something beyond this?
Post by alienspacebabe on May 11^th, 2007, 9:48pm

Along with morphing, another idea is that it might be a different headache. For example, I have episodic CH and also have episodic paroxysmal hemicrania. The way the cycles hit, I often had overlaps (although CH is on the left and EPH is on the right). It's a possibility....

Title: Re: Ever been told there is something beyond this?
Post by pieface_49 on May 11^th, 2007, 9:50pm

Paroxysmal Hemicrania is almost identical to CH.
http://www.ninds.nih.gov/disorders/paroxysmal_hemicrania/paroxysmal_hemicrania.htm

"Neurologists diagnose headaches according to the International Headache Society (I.H.S.) Classification System. This system recognizes four primary headache types. The phrase, "primary headache type" means that the headache is not caused by some other disease process. These headache types are migraine, tension, cluster and chronic paroxysmal hemicrania, and miscellaneous."
http://www.loftusmd.com/Articles/Cluster/clusteroverview.html

I think this brings it into perspective:
http://www.headachedrugs.com/archives/cph.html

This is probably the most important thing about CPH and CH:
"The triptans do not appear to be particularly effective for CPH."

Title: Re: Ever been told there is something beyond this?
Post by alienspacebabe on May 11^th, 2007, 9:58pm

on 05/11/07 at 21:50:26, pieface_49 wrote:

This is probably the most important thing about CPH and CH:
"The triptans do not appear to be particularly effective for CPH."

For me, that would be because the EPH / CPH are much shorter - using triptans is a waste of triptans.

Title: Re: Ever been told there is something beyond this?
Post by nani on May 11^th, 2007, 10:18pm

on 05/11/07 at 21:26:25, Lotus wrote:

Actually, Annette, I think answering any migraine questions would be hijacking birdman's thread. Perhaps you should start a new thread?

Title: Re: Ever been told there is something beyond this?
Post by Lotus on May 11^th, 2007, 11:31pm

I didnt think answering questions on migraine would mean hijacking the thread but whatever.

Ok, back to the question of the thread then.

So if CH can morph into PH and back, and its not unusual for one type of TAC to morph into another, how can any doctor be sure what is the diagnosis?

Nani, do you think that it is why meds that are working can suddenly stop working and meds that didnt work for a while suddenly started working again?

Annette

Title: Re: Ever been told there is something beyond this?
Post by Charlotte on May 11^th, 2007, 11:42pm

One can have several kinds of headaches going on during the same time frames. They don't necessarily morph so much as coexist. My neuro still flip flops between sunct & ch. What I consider ramping up, he seems to consider separate incidents.

My good news is that I have had 5 pf days since mid april.

Charlotte

Title: Re: Ever been told there is something beyond this?
Post by Lotus on May 11^th, 2007, 11:48pm

on 05/11/07 at 15:14:09, nani wrote:

I know 2 things about it.

.... responding to indo means you have PH.

It's not all that unusual, according to Dr Noah Rosen of the Jefferson HA center, for people with one kind of TAC headache to occasionally morph into other types. None are better or worse in terms of overall effect on health.

nani

/ for spelling

Nani,

I read Dr Rosens's answer in the OUCH newsletter as you suggested but I could not see where he said that CH can morph into PH, or that one type of TAC can morph into another ??? Please help.

He also said that not all people with PH responds to Indo, so can we really conclude that " respond to Indo means you have PH " ?

Below is the question and answer:

Dear Dr Rosen, one of our sufferer's here in the UK sees a local neuro and has just had a consultation with
Professor Goadsby, too. Her original diagnosis was PH but PG thinks it is more like CH and each cycle will get
worse. Her original neuro said that he personally isn't too worried about giving people exact labels as that's not
really his job, more PG's line of work. His work was to treat these headaches, this is where the label can be useful
from a medication point of view, as certain drugs are more effective for certain labeled headaches. Both neuro
agree that there is this invisible line
CH-----------------------PH-------------------------SUNCT
and we all fall somewhere along this line. Her neuro was describing a previous patient who he said in 2003 had
completely classic text book CH, the next time he saw him in 2004 he was text book SUNCT. He gave the
impression that what you have today is not necessarily what you are stuck with, and its not at all unusual for us to
travel up and down this line and show symptoms of the other conditions. It would seem that each of the three
above head conditions are not that cut and dried, they have very grey blending areas. This might well apply to
other types of headache as well.
Given that background, my question is, if a patient presents now with text book CH but tries indomethacin
and in a year or so presents as classic PH, would it be worth trying Indo again (or any other med for that
matter) given that the conduct of the condition had changed dramatically?

Thank you for giving such a thought provoking question. The simple answer is yes- but let me expound a little on
your background and question.
In 1988 the International Headache Society published the first International Headache Classification. This was
revised once in 2003. It is a noble endeavor to attempt to catalog headaches for use in research and clinical work but
is limited by attempting to create pigeonholes for classification. Cluster Headache, Paroxysmal Hemicrania
and SUNCT all fall under the greater classification of headaches with autonomic features (eye drooping, swelling,
tearing, redness, etc.) and patients often seem to not quite perfectly fit into any subcategory. Imagining a spectrum
of illness- varying by length, frequency and severity of attacks, and specificity and severity of associated
autonomic symptoms is useful. The pathophysiologic origin of these problems is related, but still yet to be well
worked out.
As to your question, you bring up the use of indomethacin. This is a non-steroidal anti-inflammatory which has
unique ability to help with certain headache conditions. It can be used as a daily preventive medication to reduce
frequency and severity of attacks. Most dramatic is its use in paroxysmal hemicrania (a condition of strictly one
sided, severe pain occurring >5 times a day, lasting minutes and associated with autonomic features.) In fact,
response to indomethacin is so specific, it has been written into the diagnostic criteria. This may suggest two
different forms as not every person that presents with a paroxysmal hemicrania picture necessarily responds to
indomethacin. Why it is so effective is unknown- but may relate to its structural similarity to the neurotransmitter
serotonin.
Given that a patient may change their presentation over time, is it worth retrying medication? Absolutely. Now,
studies have not been done looking at rechallenges with indomethacin over time, but intuitively it seems
worthwhile. Although we do not know the pathophysiology of the disease or the method of action of
indomethacin, it may be that the two are related. At the very least it will have the action of a good antiinflammatory.
A good trial consists of a slow titration of dose up to a total of 75mg three times per day and
maintained for at least 2 weeks. However, indomethacin should be used with caution. It can cause significant
gastrointestinal irritation, bleeding and allergic responses have been described.
Not many other specific treatments for paroxysmal hemicrania have been well studied. There is some literature on
the use of COX-2 inhibitors, and some on the use of melatonin. Further work (as always) needs to be done.
Ask Dr Rosen
by Noah Rosen, MD
Dr Rosen is an Instructor of Neurology, Director of Fellowship Training Program, Co-Clerkship
Director for Neurology Jefferson Headache Center Philadelphia, PA

Thank you very much Nani for helping. :)

Annette

Title: Re: Ever been told there is something beyond this?
Post by UN solved on May 12^th, 2007, 12:14am

I would think it's not very often that people actual 'morph' into other HA types. It can happen but is rare. If a Ch'er is going to 'morph', it's most likely going to be into the chronic form of CH. *only about 10% of sufferers`will go chronic.

Also, people with basilar migraines are at a greater risk for stroke. Using triptans for these headaches may be deadly. They are much different than CH and TAC headaches which are generally easier to treat than migraines.

If the Verapamil helps and is not causing side effect problems, there really is no need to taper anytime soon. If it works, don't fix it.

Goodluck

UNsolved

Title: Re: Ever been told there is something beyond this?
Post by alienspacebabe on May 12^th, 2007, 12:55am

on 05/11/07 at 23:48:59, Lotus wrote:

He also said that not all people with PH responds to Indo, so can we really conclude that " respond to Indo means you have PH " ?

Annette

Logically, these are two different statements:
Responding to indo means you have PH.
Not all people with PH respond to indo.
So while not all people with PH respond to indo, if you do respond to it, you have PH.

Title: Re: Ever been told there is something beyond this?
Post by Lotus on May 12^th, 2007, 1:31am

Doesnt Hemicrania Continua respond to Indomethacin too?

Annette

Title: Re: Ever been told there is something beyond this?
Post by Charlotte on May 12^th, 2007, 1:45am

I have read that hemicrania continua responds to indocin also. I have also read that some paroxysmal hemicrania responds to verapamil.

I'm not sure where you are going with this?

Charlotte

Title: Re: Ever been told there is something beyond this?
Post by Lotus on May 12^th, 2007, 5:28am

Thanks Charlotte. :)

I was confused by Nani's statement that one TAC can morph into another type and that if you responds to Indomethacin then it means you have PH. The literature quoted didnt seem to say it.

Trying to learn something new ....

Annette

Title: Re: Ever been told there is something beyond this?
Post by pattik on May 12^th, 2007, 8:03am

This seems more like your misunderstanding of Nani's use of the word "morph". When Dr. Rosen said " Given that a patient may change their presentation over time, is it worth retrying medication? ", I interpret his word "change" as similar to the word morph as it is often used here on this board.

Title: Re: Ever been told there is something beyond this?
Post by Lotus on May 12^th, 2007, 8:51am

on 05/12/07 at 08:03:37, pattik wrote:

Thank you very much Pattik for your interpretation. :)

So when a patient "change presensation" means his/her condition has morphed from one type of headache to another?

I would have thought if your headache has morphed into a different type as Nani explained, it would have meant that the whole diagnosis has changed, for eg from CH to PH ????

While I thought the word "presentation" would only mean the "presenting symptoms" ???

But then what do I know! So I will gladly listen to the experts :)

Annette

Title: Re: Ever been told there is something beyond this?
Post by Charlotte on May 12^th, 2007, 10:47am

Annette, I love you, but whatever is bothering you, you need to get over it.

Charlotte

Title: Re: Ever been told there is something beyond this?
Post by pattik on May 12^th, 2007, 11:03am

on 05/11/07 at 14:24:10, birdman wrote:

birdman, Even the experts have problems with the labeling of the TAC group of headaches. It's like a work in progress as more information comes to light. Here is a link to the International Headache Society's classification info from around 2003. If you scroll down to around page 44-45 you'll find some of what you're looking for.
http://216.25.100.131/ihscommon/guidelines/pdfs/ihc_II_main_no_print.pdf

Title: Re: Ever been told there is something beyond this?
Post by LeeS on May 12^th, 2007, 11:20am

And here's a layman's interpretation with reference to the dissimilarities of PH to CH:

http://www.ouchuk.org/html/other_parox.asp

I think that all primary headaches - especially the TACs but even migraine - are closely similar and are mediated by similar mechanisms. The major difference with TACs was the identification of the ipsilateral (same-sided) hypothalamic activation within the brain during an attack (which is not seen in migraine). One major problem is as Charlotte says is that it is relatively common (amongst sufferers) to have more than one type of headache; and I'd even go so far to say that interictal headaches (shadows) are a different type of headache altogether, yet still closely related.

-Lee

Title: Re: Ever been told there is something beyond this?
Post by birdman on May 12^th, 2007, 1:22pm

Wow quite a flurry of information. Thanks to all. And by the way I meant to ask what TAC stood for not PH. My mistake. It got answered evenutally anyway.
One of the symptoms of PH is drooping and tearing eye which I have never had with CH. I am starting to think that I got hit with two cylces in the same year which is rare for me and by the time I tried getting off the meds for the first cycle, the second started. I taper very slowly as I always felt a quick tpaer of verap cuased me to rebound. Maybe maybe not. Anyway, I know have lots of reading to do this weekend and many thanks to all of you. Any additioanl info please forward.
Tim

Title: Re: Ever been told there is something beyond this?
Post by jaynik on May 12^th, 2007, 6:00pm

wow the possibility that ch's could get worse is very scary, since this is the worst pain i have ever had in my life!!! I couldn't even begin to imagine

Title: Re: Ever been told there is something beyond this?
Post by starlight on May 13^th, 2007, 4:28pm

I think your doc was probably worried maybe you had turned chronic?
I have been getting episodic for 20 years but never felt it morphed into any other headache type.
You are on verapamil? Do not attempt to discontinue or taper off of it until you have had absolutely no head pain (not even a twinge of pain) for 2 weeks. B/C if you do not wait for a period of 2 weeks of NO head pain of any kind, what will happen is the headaches will resume and then you will go back and forth with this problem. Wait 2 full weeks of no head pain.
I hope this helps.

Title: Re: Ever been told there is something beyond this?
Post by rolo65 on May 19^th, 2007, 11:18pm

My neurologist said I have CDH (chronic daily headache) I don't know what else there is to morph into? [smiley=laugh.gif]