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Topic: Ever been told there is something beyond this? (Read 1433 times) |
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birdman
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Ever been told there is something beyond this?
« on: May 5th, 2007, 8:59pm » |
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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?
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BMoneeTheMoneeMan
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Re: Ever been told there is something beyond this?
« Reply #1 on: May 6th, 2007, 1:24pm » |
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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?
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Guiseppi
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Re: Ever been told there is something beyond this?
« Reply #2 on: May 6th, 2007, 2:07pm » |
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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
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birdman
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Re: Ever been told there is something beyond this?
« Reply #3 on: May 6th, 2007, 7:00pm » |
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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.
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clusterwife
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Re: Ever been told there is something beyond this?
« Reply #4 on: May 8th, 2007, 9:20am » |
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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.
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Charlotte
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Re: Ever been told there is something beyond this?
« Reply #5 on: May 8th, 2007, 10:12am » |
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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
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birdman
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Re: Ever been told there is something beyond this?
« Reply #6 on: May 8th, 2007, 12:45pm » |
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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?
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DannyV
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Re: Ever been told there is something beyond this?
« Reply #7 on: May 9th, 2007, 12:31am » |
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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.
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birdman
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Re: Ever been told there is something beyond this?
« Reply #8 on: May 9th, 2007, 8:49am » |
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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.
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JeffB
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Re: Ever been told there is something beyond this?
« Reply #9 on: May 9th, 2007, 9:22pm » |
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take my Verapamil away and I will shoot the poor son of a bitch that tried.
Besides, helps with the bp!
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BarbaraD
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Re: Ever been told there is something beyond this?
« Reply #10 on: May 10th, 2007, 7:39am » |
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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
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birdman
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Re: Ever been told there is something beyond this?
« Reply #11 on: May 10th, 2007, 8:27am » |
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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.
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burnt-toast
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Re: Ever been told there is something beyond this?
« Reply #12 on: May 10th, 2007, 8:56am » |
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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
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birdman
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Re: Ever been told there is something beyond this?
« Reply #13 on: May 10th, 2007, 2:52pm » |
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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.
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swimchica623
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Re: Ever been told there is something beyond this?
« Reply #14 on: May 11th, 2007, 10:15am » |
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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
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birdman
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Re: Ever been told there is something beyond this?
« Reply #15 on: May 11th, 2007, 2:24pm » |
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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.
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nani
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Re: Ever been told there is something beyond this?
« Reply #16 on: May 11th, 2007, 3:14pm » |
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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
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| « Last Edit: May 11th, 2007, 9:13pm by nani » |
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birdman
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Re: Ever been told there is something beyond this?
« Reply #17 on: May 11th, 2007, 3:18pm » |
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This may be a dumb reply but what is PH?
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nani
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Re: Ever been told there is something beyond this?
« Reply #18 on: May 11th, 2007, 3:46pm » |
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Paroxysmal Hemicrania
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seasonalboomer
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Re: Ever been told there is something beyond this?
« Reply #19 on: May 11th, 2007, 4:25pm » |
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on May 11th, 2007, 3:46pm, nani wrote:
But, no will ever ask you if you've "got a hemi in there" pointing to your head.........
Hav a great weekend.
Scott
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Annette
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Re: Ever been told there is something beyond this?
« Reply #20 on: May 11th, 2007, 8:27pm » |
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on May 11th, 2007, 3:14pm, 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.
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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
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nani
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Re: Ever been told there is something beyond this?
« Reply #21 on: May 11th, 2007, 8:52pm » |
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on May 11th, 2007, 8:27pm, Lotus wrote:
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 |
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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_Intr oduction-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?
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Annette
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Re: Ever been told there is something beyond this?
« Reply #22 on: May 11th, 2007, 9:26pm » |
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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
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Re: Ever been told there is something beyond this?
« Reply #23 on: May 11th, 2007, 9:48pm » |
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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....
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pieface_49
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Re: Ever been told there is something beyond this?
« Reply #24 on: May 11th, 2007, 9:50pm » |
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Paroxysmal Hemicrania is almost identical to CH.
http://www.ninds.nih.gov/disorders/paroxysmal_hemicrania/paroxysmal_hemi crania.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."
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| « Last Edit: May 11th, 2007, 9:52pm by pieface_49 » |
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