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Lizzie2
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CH and multiple headache types
« on: Jan 9th, 2004, 12:38am » |
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Hi everyone,
Well it was official that my neurologist diagnosed me as having cluster headaches during this past hospital visit. However now we've come to a bit of a dilemma. It seems as though medications used to treat CH aggravate the new daily persistent headache/migraine, and vice versa. For CH he's upped my verapamil to 240mg 3 times a day, and I have O2 as an abortive. I can't use imitrex because they don't work with my tachycardia or for my migraine condition.
For NDPH, I'm on methergine and elavil. My abortives for that are still thorazine and DHE and now I have toradol as a rescue med when all abortives fail for migraine.
I feel like I'm kinda split all over the place treating both headache types. I know verapamil can treat both types of headaches, but a beta blocker is preferred for migraine. Well, OK I need the clusters under control so we're sticking with verap. He doesn't know what other abortive to give me besides O2 because it will just worsen the migraines/NDPH.
I know it STILL sounds like a lot of meds because it is spread out over both headache types, but it is kinda a catch-22 when you are treating two completely different headache types that have their own set of problems. Does anyone have any advice for this? Thanks!
~Lizzie 
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pubgirl
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Re: CH and multiple headache types
« Reply #1 on: Jan 9th, 2004, 1:29am » |
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Lizzie
Is there any chance your NDPH has become medication maintained?
If there is, and the usual caveat of "I'm not a doctor, just a well-informed layman" personally I would consider detoxing and using 02 only to abort for a period of time.
The two reasons I suggest this are:
at the moment I am getting CH and migraine, although usually I only get one or the other, and I am finding 02 is doing well aborting both.
and from my reading NDPH can quite commonly be medication maintained, i.e. is now being CAUSED by the major medication cocktail you are on.
Sorry if others have asked/suggested this before but for some reason I can't make the board check back your previous posts. I am assuming that people here have warned you about Thorazine as we've been here before on this board.
Wendy
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Lizzie2
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Re: CH and multiple headache types
« Reply #2 on: Jan 9th, 2004, 1:46am » |
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I will just state one difference for clarity point. There is a difference between NDPH with rebound and straight NDPH. NDPH is actually quite medication resistant, which is why they try so many different drugs. The people who wind up with a "maintained" type of form are usually those with chronic daily migraine or something called "transformed migraine" where chronic medication overuse and overmedication cause their migraines to become daily. In my case, my NDPH arrived out of the blue not connected to anything at all. Just a random Wednesday morning while I was sitting in a class. I don't bother aborting it unless it gets above a 7 in pain, and when it does get above a 7 and the abortives don't work, I do nothing for it because I don't believe in using abortives that don't work. Know what I mean? I just figure...what's the point. So there is a big difference between NDPH with rebound and NDPH without rebound and it's even defined as a subset of the international headache society criteria, though not fully adopted as such yet. NDPH is a relatively new and not very well understood type of chronic daily headache, which is why I think there is so little information about it out there. While most inpatients with NDPH are rebounding off of an abortive or pain medication, there are many who are not. It just becomes so severe and disabling that it is too difficult to function on a daily basis.
I've tried to go off of all meds before on NDPH, and then I wound up not being able to leave my room or go to school, so in a way they do help. BUT it is difficult to treat multiple types of headaches when the things I suggest to my neuro he nixes by saying that one will make another headache type worse than it already is. ya know?
I really want to do a whole presentation and project on the different forms of chronic daily headache which include transformed migraine, NDPH, hemicrania continua, and chronic tension type headache because I think they also are not well understood, similar to CH. Doctors often ask, "how can you just always have a headache all the time?" But it is crazy like that.
Sorry if I'm rambling. I'm just trying to figure a way where both can be treated without seeming to have to treat two separate conditions. But maybe that is the only real way!
~Lizzie
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pubgirl
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Re: CH and multiple headache types
« Reply #3 on: Jan 9th, 2004, 4:28am » |
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Since you are obviously more well read than me (and good for you for the hard work you have obviously done), just checking that you have read
http://www.primarycarenet.org/cme/CME8.CFM
and draw your attention to the para commencing
"If an individual takes daily medication yet has daily headache, it is assumed that the medication is perpetuating the headache pattern. The medication must be stopped."
Wasn't suggesting that your NDPH was caused initially by medication, just floating the possibility that it is medication 'maintained'.
Wendy
P.S. Can I stress to clusterheads only that the daily medication quotation doesn't apply to CH.
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Lizzie2
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Re: CH and multiple headache types
« Reply #4 on: Jan 9th, 2004, 8:12am » |
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Wendy,
Thank you for the link! Let me explain what it's trying to say if you don't mind! I believe when they are talking about a medication maintained headache due to acute medication overuse, they are talking about "rebound" by using a lot of scientific jargon. It's true, too, because I have watched this happen to many people with a form of chronic daily headache --whatever that may be. You have a headache all the time, and every time it gets bad, you want to take an abortive -- be it fioricet, imitrex, DHE, thorazine (if that's what they've given you)....whatever will take the pain down. However, I don't know the rule for CH on this one, but for most other headache types, the rule is only to use each abortive medication no more than 2 days out of the week.
So let's say mine are the thorazine and the DHE. I can take one for 2 days and the other for 2 days...leaving me with 3 days of no abortives at all. That's actually a pretty safe way of avoiding a self-perpetuating headache.
I have met people with forms of chronic daily headache who do their abortives 3 times a day 7 days a week. You can bet that their headache is most definately in part maintained by medication overuse! And they feel a LOT better after detoxing off of some of those abortives.
So that's what I got from reading the article. If you are ever interested in reading some more stuff on NDPH, just let me know. It isn't very well understood or known about, but there is starting to be some information out there.
My neuro doesn't know how the hell I managed to get clusters on top of it, but our best shot now is to find (in my opinion) as minimal as medication as possible that will actually treat both things...instead of trying to medicate the hell out of two different conditions, both involving the head. Does that make sense? LOL OK Take care and PF!
~Lizzie
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pubgirl
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Re: CH and multiple headache types
« Reply #5 on: Jan 9th, 2004, 8:20am » |
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That article seems to suggest you by no means alone in what you are suffering:
"Frequently, patients with CDH experience a periodic disabling headache superimposed on the baseline headache pattern that waxes and wanes in intensity. These disabling headaches may have characteristics of an IHS migraine while others may not"
I hope your neuro is as good as you hope he is, and he gets to the bottom of it.
W
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pubgirl
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Re: CH and multiple headache types
« Reply #6 on: Jan 9th, 2004, 8:23am » |
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The article goes on in much more detail but I won't quote any more, it SEEMS well written and he SEEMS to know what he is talking about. I certainly learned stuff from it.
Anyway
Good luck
W
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Lizzie2
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Re: CH and multiple headache types
« Reply #7 on: Jan 9th, 2004, 8:35am » |
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AHA! Found what I was looking for. BillyJ found this for me when I was looking for a basic description of NDPH to show to people before when people were like...what? huh? It's from Robbins Headache Clinic. I wonder if this puts things any differently or just uses different words?
The Clinical Characteristics of New Daily Persistent Headache
D Li and TD Rozen
Posted May 2002
Cephalalgia 2002; 22:66-69
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New daily persistent headache (NDPH) is a subtype of chronic daily headache. The literature on NDPH is scant and its true etiology is unknown. A retrospective chart review was carried out from a computerized database at the Jefferson Headache Centre from August 1997 to May 2000 to identify patients with NDPH using the Silberstein et al. criteria. Forty women and 16 men were identified. Age of onset ranged from 12 to 78 years. The peak age of onset was the second and third decade in women and the fifth decade in men. Eight-two percent of patients were able to pinpoint the exact day their headache started. Onset occurred in relation to an infection or flu-like illness in 30%. A prior headache history was found in 38% of patients. A family history of headache was documented in 29%. The duration of daily headache ranged from 1.5 h to 24 h; 79% were continuous. Nausea occurred in 68% of patients, photophobia in 66%, phonophobia in 61%, and lightheadedness in 55%. Laboratory testing and neuroimaging in all patients was normal except for Epstein-Barr virus antibody titres, which were positive in 71% of seven patients tested, representing past infection. NDPH appears to be a female-predominant disorder, marked by a continuous daily headache with associated migrainous symptoms. Over 80% of patients could state the exact date their headache began. One-third of patients developed NDPH with a flu-like illness.
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pubgirl
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Re: CH and multiple headache types
« Reply #8 on: Jan 9th, 2004, 8:44am » |
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Think we'd better shut up now, or the next post will be someone saying "This is a CH site you know"
Wendy
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Lizzie2
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Re: CH and multiple headache types
« Reply #9 on: Jan 9th, 2004, 8:48am » |
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LOL probably true....hence my initial question of how in hell do I treat both of these damn things in my head??
They are sending me in circles telling me treatment for one will aggravate the other one. Can't use trex it will make NDPH worse. Can't use beta blockers - not effective for CH. OK so what drugs are COMPATIBLE for both types? That's what I want to know so I can quit taking so many darn horse pills a day!! I'm trying to get off em....I really am...ditched 3. Dumb pills. Grr
AHHHHHHHHH!!!!! LOL
~Lizz 
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CJohnson
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Re: CH and multiple headache types
« Reply #10 on: Jan 9th, 2004, 9:23am » |
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Inderal is a beta blocker which has been reported to have some success with clusters. Do you mean they have no success with YOUR clusters?
Do you know if Topamax is contraindicated with your other headaches? Verapamil in AM and Topamax in PM worked for me.
PFDANs
-Curtis
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CJohnson
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Re: CH and multiple headache types
« Reply #11 on: Jan 9th, 2004, 9:57am » |
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Here it is suggested that topiramate (topamax) can be effective in treating CDH of which NDPH is a subgroub. Wouldn't that be a lucky break?
Specific Drug Treatments for Chronic Daily Headache
Tricyclic antidepressants (prothiaden, amitriptyline) and anti-epileptics (sodium valproate, gabapentin, topiramate) were found by chance to be effective and are introduced at lower doses.
http://www.headachetest.co.uk/chronic-daily-headache.htm
PFDANs
-Curtis
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Through water and fire. From the lowest dungeon to the highest peak, I fought the Beast. Until at last, I threw down my enemy and smote his ruin upon the mountainside.
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Lizzie2
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Re: CH and multiple headache types
« Reply #12 on: Jan 9th, 2004, 4:55pm » |
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Hiya Curtis,
I'm going off of topamax because I have been on it since very early 2002. If it hasn't worked by now, my guess is that it isn't going to! I've been trying to get my doc to ditch it for quite some time now, but he wouldn't. Guess he was holding out? Don't know. I went up to 375mgs on it and I no longer had a brain, and now I'm on 100mgs at night. On the 21st I will taper down to none.
About the beta blocker....it wasn't that it wouldn't HELP clusters necessarily, it was just that verapamil would have been better in his opinion. He didn't want me on 2 different blood pressure meds, so he figured we'd go high on the verap for now and see how that goes. I will get an EKG next week to make sure verapamil isn't causing any problems or long QTc's. The beta blocker is ideal for the NDPH but verapamil isn't a bad choice, necessarily. It's just that inderal is usually chosen first.
Can't wait till I'm a nurse and actually know more about this stuff!!!!!!!
~Lizz
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Prense
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Re: CH and multiple headache types
« Reply #13 on: Jan 9th, 2004, 5:10pm » |
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I am curious what the symptomatic differences for you are with these two HA types. Additionally, are you a chronic CH sufferer, or episodic?
I have no idea what the pain intensity of NDPH is, but I have had a model airplane propeller go completely through my entire thumbnail (about 15.5k RPM) and out the otherside of my thumb...nothing compared to CH. If CH is more painful, I'd settle for relief with that and bite the bullet on the other...assuming chronic.
Again...admittedly, I know jack about NDPH.
Curious...
Chris
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