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Topic: medications for my headaches (Read 570 times) |
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holeinthehead
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medications for my headaches
« on: Dec 13th, 2003, 8:33pm » |
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My neurologist put me on carbitrol. I just need to know whether this will help my condition.
P.S. I am so glad that I am not the only one afflicted with this. My wife thinks that I am out of my mind banging my head around in the middle of the night.
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pubgirl
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Re: medications for my headaches
« Reply #1 on: Dec 13th, 2003, 8:39pm » |
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Hello Hole in the Head!
Welcome to clusterland! You are in the right place for advice, help and a laugh if you need one.
The drug you have been precribed is an anti-seizure medication.
Although there have been some successes with similar drugs (e.g. gabapentin) they are absolutely not the first drugs to be trying for Clusters.
For most people here Imitrex as an abortive and/or 02 fast flow rate, also Verapimil for prevention if your cycles are long, unmanageable or you are chronic.
Have you had a definitely confirmed diagnosis of CH from a neurologist?
Tell us a bit more! (being nosy here but only trying to help)
Wendy
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| « Last Edit: Dec 13th, 2003, 8:54pm by pubgirl » |
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pubgirl
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Re: medications for my headaches
« Reply #2 on: Dec 13th, 2003, 8:53pm » |
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Sorry hole in the head, second post here.
I am hazarding a guess that you are being treated for trigeminal neuralgia rather than Clusters as I found this in a quick search (Tegretol is another name for your drug apparently).
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Chemical Name: Carbamazepine USP
Brand Name: Tegretol (available in generic)
Manufacturer: Norartis
Description: Carbamazepine USP is an anticonvulsant and specific analgesic for trigeminal neuralgia. It is chemically unrelated to other medications designated for these purposes. Its specific mechanism of action is unknown.
Indications and Uses: Carbamazepine USP is indicated for use as an anticonvulsant to treat partial complex seizure disorder, generalized clonic-tonic seizures (grand mal), and mixed seizure patterns. Absence seizures (petit mal) do not generally respond to treatment with carbamazepine. It is also indicated to treat the pain associated with true trigeminal neuralgia. It has also been used to treat glossopharyngeal neuralgia. Psychiatrically, it is sometimes used as a mood stabilizer in the treatment of Bipolar disorder ( Manic-Depression), although the FDA has not yet approved this use.
Contraindications, Warnings, and Precautions: Carbamazepine is contraindicated in patients with a history of previous bone marrow depression, hypersensitivity to the drug, or known sensitivity to any of the tricyclic compounds (e.g., amitriptyline, imipramine, etc.). Aplastic anemia and agranulocytosis have been reported in association with the use Tegretol. It should not be given with MAOIs (monoamine oxidase inhibitors). Rare cases of severe dermatologic reactions (toxic epidermal necrolysis and Stevens-Johnson Syndrome) have occurred. It should be used with caution in patients with glaucoma. Taking carbamazepine with phenobarbital, phenytoin, or primidone produces a marked lowering of blood levels or carbamazepine. Mixing it with lithium increases the risk of neurotoxic side effects. Regular monitoring of blood counts including platelets and possible reticulocytes and serum iron should be done. Carbamazepine should be discontinued if there is any evidence of significant bone marrow depression. Periodic liver function tests should also be done. Carbamazepine should not be used in pregnant or nursing mothers.
Adverse Reactions: Possible common observed adverse reactions, particularly during the starting phases of therapy, are dizziness, drowsiness, unsteadiness, nausea, and vomiting. Patients may also experience edema, skin rash, cardiovascular complications (worsening of pre-existing arrhythmia's), and hematologic changes.
Dosing Range: In adults and children over twelve years the usual starting dose is 200 mg twice an day. Doses generally should not exceed 1000 mg per day in children twelve to fifteen years old and 1200 mg per day in patients over fifteen years of age. A therapeutic blood level ranges from 4 to 12 micrograms per ml of blood. Blood levels and effects should be closely monitored.
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Hope this helps
Wendy
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| « Last Edit: Dec 13th, 2003, 8:54pm by pubgirl » |
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holeinthehead
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Re: medications for my headaches
« Reply #3 on: Dec 14th, 2003, 12:26pm » |
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I am still taking more tests but the doctor truly believes that i have cluster headaches.
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forgetfulnot
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Re: medications for my headaches
« Reply #4 on: Dec 14th, 2003, 2:06pm » |
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Take the cluster quiz far left 4th from the top. Kinda let's you see if your leaning towards a cluster diagnoses, by the way only 1 out of 5 neuros I have seen really knew what cluster headaches were, much less what to do about them.
Good luck, Lee......
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| « Last Edit: Dec 14th, 2003, 3:23pm by forgetful » |
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pubgirl
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Re: medications for my headaches
« Reply #5 on: Dec 14th, 2003, 2:50pm » |
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Hi again Hole in the Head
If the doctor is sure it is CH and the quiz/reading this site confirms this, then (though the usual add on of "I'm not a doctor" ) then I would suggest quite strongly that carbitrol is a very bizarre first choice of drug.
I personally would ask the doctor to think again and ask for the more normal CH treatments, not an anti-seizure medication.
Wendy
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| « Last Edit: Dec 14th, 2003, 2:51pm by pubgirl » |
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Charlie
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Re: medications for my headaches
« Reply #6 on: Dec 14th, 2003, 3:34pm » |
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Welcome and if you have clusters, you're in the right place. It's a shame our club is growing at such a rate.
I have seizures as well but my neurologist hasn't yet tried Tegritol. It does work for some epileptics but has to be monitored frequently. I don't think its widely used for CH.
I've been free of CH for 12 years and have almost no experience with CH drugs but the others will help you.
I hope you stick around. There are many good ideas here. Let us know how you're doing.
Charlie
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jadedgazer
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Re: medications for my headaches
« Reply #7 on: Dec 14th, 2003, 4:26pm » |
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Welcome Hole,
I have used Tegretol for my clusters and it did work for me for a while. As you will find around here, some drugs work for clusterheads work for Chers for a while and then stop. Don't be disenheartened, it may work well for you. I have used a few other anti-siezure meds and have gotten some relief with them, i.e. Topomax and now Lamictal.
There are others here using Topomax as well.
You should check into oxygen and read all that you can here, as there is a wealth of information to be found here.
Good luck to you and PF days and nights to you.
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Jackie S.
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cathy
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Re: medications for my headaches
« Reply #8 on: Dec 14th, 2003, 5:03pm » |
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Hi Holeinthehead...my husband Wes was prescribed Tegritol Retard before he was correctly diagnosed with CH it had no effect on them at all....you should have regular blood tests if on this medication I believe they recommend every 6 weeks although I dont remember Wes having one until we requested it!
I hope you get the right meds soon.
Welcome to the site but sorry you have had to find us.
Cathy
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don
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Re: medications for my headaches
« Reply #9 on: Dec 14th, 2003, 9:34pm » |
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My guess is the diagnosis is correct but the treatment is wrong. Read Read Read and educate the neuro on what treatments and meds are most effective.
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jadedgazer
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Re: medications for my headaches
« Reply #10 on: Dec 15th, 2003, 7:57am » |
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Tegretol is on the same lines as Topomax, isn't that correct?
If that is the case, aren't there others here being treated with Topomax and finding that it is working for them?
If that is the case, are they taking the wrong meds? I am a little confused. 
I am talking about as a preventative, not as an abortive here.
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| « Last Edit: Dec 15th, 2003, 7:58am by jadedgazer » |
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Jackie S.
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pubgirl
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Re: medications for my headaches
« Reply #11 on: Dec 15th, 2003, 8:18am » |
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Jackie
There are quite few people I have read about who take various anti-seizure medications as a preventive (carbitrol not even being the common one of those though! ) but the success is unproven and it is certainly not advocated over here by our experts as the first thing to try (Verapimil is the one normally used first, or a Verap/Lithium mix).
Most of the preventives need close monitoring, but as far as I understand, anti-seizure drugs and steroids taken for prevention particularly do as they are powerful drugs.
Again as far as I understand, anti-seizure drugs are often used when the patient either can't take Verap for health reasons, or Verap doesn't work.
I wasn't (and I doubt Don was) saying you MUSN'T take the anti-seizure meds, just that there are more proven alternatives to go through first
Wendy
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| « Last Edit: Dec 15th, 2003, 8:22am by pubgirl » |
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pubgirl
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Re: medications for my headaches
« Reply #12 on: Dec 15th, 2003, 8:25am » |
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If it helps, Goadsby and Matharu's CH article breaks prevention down into short and long term. Under long term prevention they say
Verapamil
Verapamil is the preventative drug of choice in both episodic and chronic CH. Clinical experience has demonstrated that higher doses than those used in cardiological indications are needed, so outpatient assessment and follow-up is appropriate. The dose is increased until the cluster attacks are suppressed, side-effects intervene or the maximum dose of 960mg daily is achieved.
lithium
Lithium is an effective agent in CH prophylaxis, although the response is less robust in ECH and CCH. Renal and thyroid function tests are performed before therapy begins. Patients are then started on 300mg bd and the dose titillated using the protocol outlined in the British National Formulary, aiming for a serum lithium level in the upper part of the therapeutic range. Most patients will benefit from dosages between 600mg and 1,200mg daily. The concomitant use of non-steroidal anti-inflammatory drugs, diuretics and carbamazepine is contraindicated.
other drugs
Although sodium valproate, pizotifen, topiramate, gabapentin and melatonin are often used, as yet they are of unproven efficacy.
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jadedgazer
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Re: medications for my headaches
« Reply #13 on: Dec 15th, 2003, 8:51am » |
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I understand that the anti-siezure meds may not be the 'drugs of choice' but they can be effective. And I just don't feel that it is fair to say to someone that they are the "wrong" drugs to be taking is all.
Verapamil was completely useless to me, however, that does not mean that it is the wrong drug for someone else. I have not tried Lithium, but that is a personal choice. The anti-siezure meds have done the most in giving me what relief I have found.
I think it is important that we are careful in how we word what we say to new people here, as there are many drugs out there. Though we may not have tried each personally, each one works differently for each person. People come here looking for answers to questions, it is important to give them information so that they can make decisions for themselves. To tell someone that a particular drug is probably not what they should be taking, is in my opinion, not what we should be doing. I am sorry if this offends, but this was done to me when I arrived and it left me very confused and drove me away from the board for a time, I would hate to see that happen to anyone else.
Hole, take all the information you find here on the active boards and in the archives and make educated decisions for yourself. The tegretol may do wonders for you and it may not. You may have to change drugs a few times, or lots of times before you find the right combination for yourself, don't lose heart. You will find it. Take the information here and arm yourself with knowledge for your visits with your neuro. Knowledge is power, and with that power you are better able to fight the beast raging in your head.
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Jackie S.
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pubgirl
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Re: medications for my headaches
« Reply #14 on: Dec 15th, 2003, 9:46am » |
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I'm not offended, but I DIDN'T SAY IT WAS WRONG!
I posted a breakdown of the drug Hole was being prescribed, which included the suggestion that it is good for trigeminal neuralgia. There are quite a lot of doctors and even neurologists who wouldn't know the difference between this and CH if it slapped them in the face! I also said very clearly that some people HAVE had success with anti-seizure drugs. Frankly though the number must very small in comparison with the success rate for the main choice preventives.
If you want to get really detailed though, The Rome Conference was suggesting some better success with gabapentin, not Tegretol or any other one.
I agree that we are all different and respond differently to different drugs and we do need to be careful what we say about any drugs, BUT there ARE doctors out there who are ignorant and are not prescribing the most effectiveand 'safest' treatments.
In my case, when I was a newbie, if people here on this board and OUCH UK hadn't told me that what my doctor was prescribing was not the normal choice of treatment, and advised me what I should be asking for I would be taking powerful oral opiates and doing my head and body in in a different way while still having CH.
Wendy
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don
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Re: medications for my headaches
« Reply #15 on: Dec 15th, 2003, 5:21pm » |
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Quote:| To tell someone that a particular drug is probably not what they should be taking, is in my opinion, not what we should be doing. |
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So in other words if someone comes here and states
"My doc has prescribed 80 mg oxycontin with Fiorocet for breakthrough"
then we should just let that slide?
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forgetfulnot
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Re: medications for my headaches
« Reply #16 on: Dec 15th, 2003, 5:44pm » |
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Quote:| I just need to know whether this will help my condition. |
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This looks like someone seeking advice or an opinion. For the most part he got what he was looking for, he will have to sort out the information for himself. What's new about that? Do we all believe everthing we read on the net?
Den got it right "Take what ya need leave the rest"
Lee 
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| « Last Edit: Dec 15th, 2003, 5:47pm by forgetful » |
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Prense
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Re: medications for my headaches
« Reply #17 on: Dec 15th, 2003, 7:24pm » |
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on Dec 15th, 2003, 8:18am, pubgirl wrote:Jackie
There are quite few people I have read about who take various anti-seizure medications as a preventive (carbitrol not even being the common one of those though! ) but the success is unproven and it is certainly not advocated over here by our experts as the first thing to try (Verapimil is the one normally used first, or a Verap/Lithium mix).
Most of the preventives need close monitoring, but as far as I understand, anti-seizure drugs and steroids taken for prevention particularly do as they are powerful drugs.
Again as far as I understand, anti-seizure drugs are often used when the patient either can't take Verap for health reasons, or Verap doesn't work.
I wasn't (and I doubt Don was) saying you MUSN'T take the anti-seizure meds, just that there are more proven alternatives to go through first
Wendy |
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on Dec 15th, 2003, 8:25am, pubgirl wrote:| Although sodium valproate, pizotifen, topiramate, gabapentin and melatonin are often used, as yet they are of unproven efficacy. |
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Although anti-siezure meds have not been "proven effective" (nothing has yet been proven effective, btw) there are numerous folks here taking topamax (topiramate) with success. I would say that the majority are taking CCBs and/or lithium though.
If tegretol is used to treat TN, then maybe the doc was trying to rule out TN? I really do not know.
Regards!
Chris
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pubgirl
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Re: medications for my headaches
« Reply #18 on: Dec 15th, 2003, 9:05pm » |
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pubgirl may have 'wrote', but pubgirl was only quoting Goadsby who, until someone tells me otherwise, I would prefer to believe knows what he is talking about.
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don
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Re: medications for my headaches
« Reply #19 on: Dec 15th, 2003, 9:59pm » |
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Quote:| (nothing has yet been proven effective, btw) |
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Are you kidding me?
Verap has been a proven effective med for some time.
Lithium has been a proven for chronics.
O2 is proven
Imitrex is proven
Prednisine is proven
DHE is proven
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Linda_Howell
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Re: medications for my headaches
« Reply #20 on: Dec 15th, 2003, 10:09pm » |
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Dear Holeinthehead,
If you can get your wife to read some of the posts here and also get her to log on to the supporters corner, she won't think you're "nuts" anymore for the head-banging. She will see for herself that, for some illogical reason, many of us do the same thing.
I personally, am responsible for keeping the dry-wall guys in business. lol
LindaH
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Kindness, is gladdening the hearts of those who are traveling the dark journey with us.
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jadedgazer
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Re: medications for my headaches
« Reply #21 on: Dec 15th, 2003, 11:46pm » |
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Excuse me for stepping on toes. It won't happen again.
Hole had stated that he has already been dx'd with cluster headaches. It was clear to me that wasn't in question.
Don, Verapamil isn't 100% effective for all cluster sufferers. Verapamil did nothing to relieve my pain in the year that I took it. The triptans are not an option for all sufferers. So sometimes for reasons that are outside what information may be given, doctors are prescribing different alternatives. That doesn't necessarily mean that the doctor or neuro in question is a quack. Just something to consider.
Again, I apologize for asserting my opinion and I assure you it won't happen again.
Hole, my deepest apologies to you. This whole thread got out of line and it is my fault. I should have never said anything. Please accept my apologies and I wish you the best on your quest to PFDAN.
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Jackie S.
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