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        Cluster Headache Help and Support >> Medications, Treatments, Therapies >> New drug called LYRICA
        
(Message started by: MadHatter on Jul 13^th, 2007, 11:54am)

Title: New drug called LYRICA
Post by MadHatter on Jul 13^th, 2007, 11:54am

Hello all. I don't post often but have been a reader for a couple of years when in cycle. Really appreciate everyones input. Very therapeutic for me.
I'vebeen a sufferer for almost 20 years, eposodic with 1-2 cycles every year, except for a 2 year reprive which ended this year. Ive had 3 cycles in the past 6 months and fear I'm in the chronic class. This current cycle has benn going for 5 weeks now with 3-4 Kip 7-10s almost nightly.

As usual, I started on the Verap at the first shadow hoping it would break the cycle within 2 weeks, as it usually does. When that failed after 3 1/2 weeks, I started the Prednisone, (Always a dreaded last resort) but no relief. In fact things got worse. 2 ER visits in which they say they can't do anything except dope me up with Morph (which does nothing as you know). Felt really hopeless and suicidal at times.

Anyway, finally got in to see a Neurologist yesterday (haven't been to one in 10 years). He took an interest but basically said I've done all the tricks except Lithium, but said I'm so deep into the cycle, the Lithium may not work either. Then he said, theres a new epilectic drug called Lyrica which is an anticonvulsant, but works directly on nerve pain. Gave me some samples and said it's a shot in the dark, but give it a try.

I did last night. First PF night in weeks. Now, I know it may be coincidental and when we're hurting we tend to grab hold of any ray of hope. BUT, I can feel the Tri nerve in my head and face. The nerve is numb, like the freaking pain is trying to get through but has hit a wall.

There are some minor(?) side effects. Tiredness, constipation (Verap's already doing that), dizziness (hasn't been that bad), blurred vision (very slight in my right eye. I'm right side predom) and they say confusion or difficult being attentive or focused (not experiencing that at this point).

Anyway, wanted to share and see if anyone else has tried this?

Take care and PF Wishes to all.

Title: Re: New drug called LYRICA
Post by Patrick_A on Jul 13^th, 2007, 3:57pm

Never hear of this, but I have been out of the loop for a while. Isn't that what Depakote is for, epilepsy?

Patrick_A

Title: Re: New drug called LYRICA
Post by MadHatter on Jul 13^th, 2007, 4:40pm

Hey Patrick,
Not sure but I think Depakote is an anti-phsyc drug. At least when they wanted to put me on that a few years back, my wife protested because it would be in a Phsyc class on our insurance claim and wouldn't be approved.

Title: Re: New drug called LYRICA
Post by Ray on Jul 13^th, 2007, 4:45pm

on 07/13/07 at 15:57:43, Patrick_A wrote:

Never hear of this, but I have been out of the loop for a while. Isn't that what Depakote is for, epilepsy?

Patrick_A

Yes, this is primarily indicated for Epilepsy, in the category of "membrane stabilizing" medications.

Ray

Title: Re: New drug called LYRICA
Post by UN solved on Jul 13^th, 2007, 9:30pm

Lyrica has been talked about here a few times. It's not a brand new med .. as it has been out for awhile now. I don't recall anyone saying that it had been a big help either.

I would be surprised if it was the Lyrica that gave you a PF night after only being on it for 1 day. Most of the drugs like that one takes awhile to get into your system. But hey ... if your pain free, I wouldn't switch anything just yet either. Ride it out pain free as long as you can.

I am glad to hear that something is helping. I hope your pain free time continues for a long time.

Goodluck

UNsolved

Title: Re: New drug called LYRICA
Post by MR_FLOOR on Jul 13^th, 2007, 9:48pm

Please let us now if you have any long term success with it.Anything that works is worth a try in my book.At the same time I will ask my doc about it.I have a appointment next week.Keep us posted.

Dave

Title: Re: New drug called LYRICA
Post by Lotus on Jul 14^th, 2007, 4:26am

Lyrica is pregapentin which is a drug similar to neurontin. They work on the GABA receptors. They are mainly anticonvulsants but they have been used for trigeminal neuralgia and also other types of nerve pain.

My husband was initially on Lyrica but it didnt help him very much. It gave him the side effects of a tremor and blurry vision. He was later switched onto neurontin and with verapamil, oxygen, imigran and zyprexa he had CH pretty much under control until the cycle finished.

I hope Lyrica works well for you. All the best and painfree wishes.

Annette

Title: Re: New drug called LYRICA
Post by Pinkfloyd on Jul 15^th, 2007, 12:09am

on 07/14/07 at 04:26:57, Lotus wrote:

Lyrica is pregapentin which is a drug similar to neurontin. They work on the GABA receptors. They are mainly anticonvulsants but they have been used for trigeminal neuralgia and also other types of nerve pain.

My husband was initially on Lyrica but it didnt help him very much. It gave him the side effects of a tremor and blurry vision. He was later switched onto neurontin and with verapamil, oxygen, imigran and zyprexa he had CH pretty much under control until the cycle finished.

I hope Lyrica works well for you. All the best and painfree wishes.

Annette

You better do another goggle search...the last one gave you some faulty information on Lyrica, doc.

Here's a hint. Lyrica is not pregapentin. Lyrica is Pregabalin.
When we discuss medications here, we try very hard to be accurate.

What does "mainly anticonvulsant" mean? It's either in a class of drug or it's not.

Lyrica specifically does not work ON the GABA receptors as you say and has a different mode of operation than Neurontin.

Lyrica works on the nerve pain associated with epilepsy and assorted nerve pains. It's not used as an anticonvulsant...so I guess that would make it "mainly not an anticonvulsant?" It is mainly used for diabetic nerve pain, not trigeminal neuralgia.

Your husband was taking it and you don't even know what it is. ::) ......doc.

BTW, what is pregapentin anyway? Gabapentin is Neurontin. I think you got your gaba's mixed up with your pentins.

Bobw

Title: Re: New drug called LYRICA
Post by Lotus on Jul 15^th, 2007, 3:18am

Lyrica is an anticonvulsant and it has the similar effects of the neurotransmitter GABA. It is used as an add-on treatment for adults whose epilepsy has not been well controlled by other anti-epileptic medicines. It is used to prevent partial seizures, and partial seizures that spread to secondary generalised seizures. It is also used to treat peripheral neuropathic pain such as diabetic nerve pain and trigeminal neuralgia. It can also treat central nerve pain such as in cases of spinal cord injury. It is also used to treat generalised anxiety disorder. I guess it makes it a "mainly" anticonvulsant with other uses.

Correction: Lyrica is pregabalin and Neurontin is Gabapentin. I guess I did get the balin and the pentin mixed up. Whoa! That is such a sin isnt it? The sky has fallen! It seems to give you, Mr Pinkfloyd, such massive pleasure to be able to spot any weany tiny little mistake that I may make and to point it out loudly! " Quick ! Annette has made a mistake, jump on it and shout it to the world! It would make me appear so clever and intelligent ! " LOL !

They say people who have a self esteem problem have a need to attack others, to make others look bad in order to make themselves look better, guess its true.

I have to say I feel pretty special to have a personal " spell checker " and "proof reader" who would be here in a flash to point out any mistake I may make. Almost tempted to make more just to keep him happy and occupied! ::)

By the way, Mr KnowItAll, where did you get the information that Lyrica is used to treat nerve pain associated with epilepsy from? What types of nerve pain does epilepsy cause? Which types of epilepsy cause nerve pain that needs to be treated?

Also why dont you double check with your neurologist as to whether Lyrica is used as an anticonvulsant and whether it has been prescribed for trigeminal neuralgia?

Annette

Edited to add : I wonder how long will it take the rest of his pack to come galloping in to give him some extra Oomph now?

Title: Re: New drug called LYRICA
Post by Klusterkopf on Jul 15^th, 2007, 5:19am

Tried Lyrica-made me dizzy and spaced out, didn't do anything for CH pain-be careful with it, it can cause serious problems with driving, operating machinery and thinking.

Title: Re: New drug called LYRICA
Post by MadHatter on Jul 15^th, 2007, 7:52am

Thanks all. BTW, it's not working. had te
he 1st night PF followed by 2 nights of hell. :o

Title: Re: New drug called LYRICA
Post by Karla on Jul 15^th, 2007, 8:25am

I took lyrica for 8 weeks for back pain and it did nothing for my ch or my back.

Title: Re: New drug called LYRICA
Post by Pinkfloyd on Jul 15^th, 2007, 12:25pm

on 07/15/07 at 03:18:59, Lotus wrote:

Stop cutting and pasting passages you find during your google searches (as you did above...again) and making them appear as though you wrote them, and I'll have fewer problems with you.

Maybe you think it's acceptable to take the work of others and make it appear to be your own. It's not acceptable in most of the world, including the cyber world.

When things are cut and pasted here, especially medical information, it's common netiquette to mark it as such, either using italics or quotation marks or any one of a number of ways, to make it appear different than your own words. It is also common netiquette to site the reference so those of us that are less informed, can look up the reference and learn more about the subject.

When people make mistakes about medications or treatments, on a message board devoted to helping people with a medical condition, it's important (at least to some of us) to correct the mistakes. I guess you better get used to it.

One little mistake? No, there were several mistakes. "One little mistake...." Thats what the doctors and hospitals say when 10,000 people die every year due to medical mistakes in hospitals with medications and treatments, that could have been avioded with a little oversight.

Bobw

Title: Personal opinion time....
Post by Ray on Jul 15^th, 2007, 2:12pm

Welcome to the human condition -- we all make mistakes sometimes. Even doctors make mistakes. Even septic tank cleaners. Let's get real for a moment.

In order to save embarassment, and to appear to consider other people's feelings, why not use PM to offer a correction. It comes across as a personal attack to air these things in public (in the open forums).

I realize that we are not all best friends here, although we are a "family." Let's try to consider others' feelings and not embarass them unnecessarily.

Just for the record, this is not intended to be just to defend Lotus and correct Pinkfloyd, rather it is a general statement. I would prefer to get along with my family and concentrate on defeating the beast, one moment at a time.

Climbing off my soapbox now,

Ray

Title: Re: New drug called LYRICA
Post by nani on Jul 15^th, 2007, 2:49pm

That's a nice sentiment, Ray. For the most part, I agree.
However, when someone gives treatment advice, and it's wrong, I think we have an obligation to point out errors. After all, especially when talking about meds, people's health and well-being are at stake.
I shudder to think how many desperate newbies would fly to Syria for "Dr" Ali's brain surgery if we didn't all jump his ass everytime he comes here trolling...

Title: Re: New drug called LYRICA
Post by thebbz on Jul 15^th, 2007, 4:17pm

;;D I dont post medical information unless I know it to be fact. If not I dont post. Or I will state that this is my own speculation. I also post references to factual information garnered in searches for the benefit of all. But thats just me. One should be careful taking infomation of the top of their head or be ready for correction. So whats the problem with being corrected. If I had a problem with that my wife would have no reason to talk ever. [smiley=laugh.gif] [smiley=laugh.gif]
I do have to wonder when one becomes so defensive when corrected. Get over it. Drugs suck....all of em.
Mr. Perfect
jb
Hope your getting better MadHatter
all the best

Title: Re: New drug called LYRICA
Post by kcopelin on Jul 16^th, 2007, 10:05am

MadHatter-I'm sorry to hear that the Lyrica didn't continue to work. I have tried Neurontin-no help at all. Anectdotally, some of us use melatonin alone or with benadryl for the night time hits-seems to have helped me a great deal.
By the way, welcome to the board and to the family. We do indeed put the "fun" in dysfunctional. There is a storehouse of information here for CH, and an incredible support team.

PFDAN y'all
kathy

Title: Re: New drug called LYRICA
Post by MadHatter on Jul 17^th, 2007, 12:16am

Thank you Kathy. There is truly a wealth of information here and terrific input from so many who can actually relate with what we go through. I get so sick of the "oh you have migraines?" question. Have gotten to the point where I just say, yeah, something like that.
Anyway, Lyrica isn't working, 02 did not work all of last night either. Very frustrating. Have had 5 hours of sleep in 3 days and afraid to try tonight.
Have been on Melatonin for about a week now. Will try the benadryl cocktail and see how it goes. My neuro and wife have encouraged me to get another MRI, (haven't had one in 10 years) even though I know it's a waste of time and money. Just in a particularly bad cycle and it too will end someday.
For those who go through this for months on end, I so feel for you. I don't know how you get by without going nuts.
Anyway PF wishes to all.
Thanks

Title: Re: New drug called LYRICA
Post by godsjoy777 on Jul 17^th, 2007, 7:09pm

So sorry you are having such a painful time....I don't know how many mgs of melatonin you are taking but you can go up to 12 and I've even heard someone takeing 15mgs...plu take magnesium to help it work...or thats what my Chiropractor said....and keep on trying the oxygen...Have you heard of the clustermax? That is a better and easier way to suck oxygen...

I actually found that taking so many of the other drugs-the triptans and the preventatives- was actually causing major rebounds....I just tapered off them all and went with O2 and Melatonin & Magnesium....It got me through the hardest part ....until I found the neutrients this last cycle.

Blessings!
Karen