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Vickle

neuropathic pain (syndrome?)

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Had appointment with my neurologist this week.  One of the things we discussed was the ongoing burning sensation in my right occipital area. He suggested it may be neuropathic pain and prescribed Lyrica.

Any other chronic mish mosh heads been diagnosed with this?

Feedback on Lyrica?

I have not started taking it yet. 

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Vickle,

Not heard of that.  But honestly.  Anything the doc prescribes would scare me.  Make sure you read all the warnings (as I'm sure there's a lot) on that Lyrica.

PFW,

J

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Lyrica is an "advanced" version of Neurontin (gabapentin).  At least in theory, it could help with neuropathic pain.  Very strong side effects (particularly that Zombie-like business) in some people. Sometimes prescribed for CH itself.   If you type lyrica into the search bar at upper left, you'll see a few discussions of it.  I don't know whether it has been established whether it might block busting. 

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My experience is that my feet and ankles swell terribly. Also, it costs 548.00 for 90 - a months supply.

The patent was supposed to run out years ago, but they got it approved for diabetic nerve pain and thus extended the patent.

It did not help my CH either. Why they consider it a drug of 'potential' abuse is beyond me!!!!!

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Vickle,

I'm not a doctor...  but the burning sensation around the eye is likely cluster headache and not just the general description "neuropathic pain."

Both Lyrica (pregabalin) and Neurontin (gabapentin) will have only a slight efficacy in lowering the frequency and severity of your CH... or burning pain around the eye...  Both will give you a 2 to 3 martini buzz at around 300 mg/day and both will result in swollen ankles after a week to 10 days... 

There are other side effects that taken with the buzz and fat ankles coupled with less than desirable efficacy result in a poor risk reward ratio... i.e., bad bang for the buck...

I tried both, one right after the other and stopped taking them when my ankles got so bad I needed hydrochlorothiazide, a potent diruetic and support stockings to combat the swelling.

Your NHS won't cover the lab test for 25(OH)D, but there are several labs in Canada that provide either walk-in service or they'll mail you a DIY blood spot kit for the 25(OH)D lab test... no Rx needed.  These tests run $50 to $65.  GrassrootsHealth.com will mail you a home test kit for $65 (USD).  I've had them ship test kits to a friend in Kelowna, BC recovering from breast cancer surgery... no problem.

The reason I suggest this lab test is you are likely vitamin D3 deficient and that deficiency is contributing to frequency, severity and duration of your CH... and burning sensation around the eye.  25(OH)D is the vitamin D3 metabolite that's used to measure its status.  The normal reference range is 75 to 250 nmol/L and anything less than 75 nmol/L is deficient.  It's a safe bet you're vitamin D3 deficient...

The simple course of action and least expensive way to go is pick up some 1000 IU vitamin D3 liquid softgel capsules, some 400 mg magnesium capsules, and a good mature multivitamin.

Take 10,000 IU/day vitamin D3, 400 mg/day magnesium and one of the mature multivitamin tablets...  If you're like most CH'ers, you'll experience a significant reduction in the frequency, severity and duration of your CH in a week or less.

If that happens, you can order the complete list of supplements in the anti-inflammatory regimen from iherb.com.  A CH'er in the UK has done all the legwork and posted the "How To" at the following link:

http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1291969416/1890%20#1890

The following table represents the latest list of anti-inflammatory regimen supplements and doses:

LatestAIFRegimen_zps0e931cc5.jpg

If youÂ’re in doubt about starting this regimen read Zd10Â’s post in the following link:

http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1393027277#2

I have hundreds more posts, PMs and email just like it.

BTW, this regimen works well with busting... no detox required.

Take care and please keep us posted.

V/R, Batch

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Thanks Batch.

The burning is in the right occipital area  (back of head).

I hugely appreciate the info on getting the 25 (oh)d testing.  I was doing the d3 before without much luck.

I am willing to start from scratch again with it. 

Also, great info about lyrica.   Thanks to you all so much for your feedback and support.  You all are life savers. 

Hugs and pfw

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Hi Vickie, I'm a lil' late to the lyrica party here - my impressions are actually all about its predecessor/close cousin neurontin (gabapentin), which I've seen more reports of being prescribed specifically for CH. I do know Lyrica gets prescribed for various sorts of nerve pain.

So ANYHOO I've seen that while the occasional CH'er swears by neurontin, probably a higher percentage swear at it. Personally I was a lucky one who actually got good results with it back in my pre busting / D3 days. It brought down the intensity and frequency of hits in a high cycle that was about to spin completely out of control, making aborting all remaining attacks manageable.

And I didn't mind the Side effects of feeling a little different and food tasting way too good. :D

I don't know if the food thing happens with lyrica too.

Just another example of how various individuals can respond quite differently to the same drugz.  8-)

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