Chronic Pain Whatever the cause, support for managing long term or intractable pain.


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Old 01-22-2014, 06:17 PM #1
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Default off lyrica...now other issues

hi all,
I got off all my pain meds back in November to determine my baseline for pain and start from scratch. because I am have been on so many different drugs for so long, over 10 yrs. I had not been getting a lot of pain relief and just want to see where I stood and try to determine if my cognitive issues were just med related.

long story short. I could not stay off my pain meds, am back on norco, oxyir, soma, lorazepam but because Lyrica was so hard to get off of, I have not gone back on it. Naturally, my neuropathy is bad.

On the plus side, I have taken off 10 pounds and am attending aqua therapy classes.

My question to those of you who have managed to get off Lyrica, do you experience a tightening, cramping feelIng in your body? I am experiencing a feeling like my nervous system is tightened, like the turning of a dial., like a taut guitar string and nothing makes that pain discomfort go away. My intuition tells me it is a side effect of coming off the lyrica and perhaps I should try to ride if out. Any experience or ideas? Thanks Diandra
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Old 01-23-2014, 07:20 PM #2
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all I can think of is magnesium. It relaxes the nervous system. It is the only supplement that works for me, I have nerve pain and whenever I take the magnesium the nerve buzzing really calms down...I tested the supplement twice, gave it a 2 week break and when I went back on it again I really felt a change.

And it wasn't even the fancy expensive magnesium, just plain old mag. oxide !
I never tried lyrica but it cured some people and am keen to start
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I have...vulval nerve pain
I take...50 mg Elavil/Ami, 150 mg LYRICA
+magnesium oxide (works for me)
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Old 01-23-2014, 08:55 PM #3
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Thanks Mary Jane..., great suggestion....what dosage do you take?
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Old 01-24-2014, 01:47 PM #4
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My wife has been using Celestial Seasonings Tension Tamer—and it seems to work for her.

Doc
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Old 01-24-2014, 01:51 PM #5
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Quote:
Originally Posted by mary jane View Post
all I can think of is magnesium. It relaxes the nervous system. It is the only supplement that works for me, I have nerve pain and whenever I take the magnesium the nerve buzzing really calms down...I tested the supplement twice, gave it a 2 week break and when I went back on it again I really felt a change.

And it wasn't even the fancy expensive magnesium, just plain old mag. oxide !
I never tried lyrica but it cured some people and am keen to start
I have to pipe in here... magnesium oxide does not get absorbed appreciably. It remains in the GI tract as a laxative.

I think you'd get far more results with another type. A chelate or SlowMag, if you can get it where you are. Only about 8mg gets absorbed from mag oxide 400mg total weight tablets, according to new studies, and that is about what an egg has in it. You need about 360mg a day. Assuming you eat beans and nuts, you should aim for 200mg elemental from a supplement.

More about magnesium here on my informational thread:
http://neurotalk.psychcentral.com/thread1138.html
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Old 01-25-2014, 01:22 AM #6
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Quote:
Originally Posted by mary jane View Post
I never tried lyrica but it cured some people and am keen to start
CURED What has it cured?
It has also put many people through much worse than what they were taking it for.

The following side effects are associated with Lyrica:
and Lyrica (pregabalin)

Lyrica Withdrawal - How Long Will This Last?

Lyrica Withdrawal Syndrome

Lyrica Side Effects??

It's your choice, but I hope you have—or will have—looked into it carefully and thoroughly.

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Old 01-25-2014, 02:15 AM #7
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Default No no to lyrica

If you haven't taken it then don't. They put me on it in 2012 after my big seizure, there is a reason why they start you at the lower dose and then move you to higher, the body needs to adapt to it and then once it has, it wants it, when I stopped I felt just like that, a really taught string on a guitar, what a good way of describing it, strung out, tanning and not making any good music sounds at all. My very good friend had been on it in 2011 for nerve pain and having been in hospital for 9 weeks after nearly losing her foot she began to wean off it, not for one minute expecting it to give her the withdrawal symptoms she got. I remember her telling me what it was like and I only stayed on the lyrica for 12 weeks. Took it from October thru to January. Never again thank you very much. I'm so sorry for anyone who goes on lyrica without the warnings if what it can do to you down the track.
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Old 01-26-2014, 09:00 PM #8
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what an incredible disconnect between the maker of lyrica and the withdrawal experience of patients. I have been doing a lot of searching on the Internet and it is horrible how much people are suffering from lyrica withdrawal. I don't recall having these symptoms when getting off neurontin.

Here is a good article filled with a lot of good info, like others things folks use for nerve pain. thanks mrsd for magnesium details, I had no clue. drsmith...thanks for tea suggestion.

http://www.peoplespharmacy.com/2013/08/01/post-11/

all my best to everyone dealing with neuropathy issues....thanks for sharing what you know.....Diandra
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Old 02-01-2014, 10:38 PM #9
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Hi PamelaJune,
Yesterday I had to restart my lyrica because my seizures started again( just partial complex seizures). You mentioned you took lyrica for seizures but you are now off it. Do you mind me asking what you are taking for seizures and is it a drug you tolerate OK?
Thanks, Diandra
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Old 02-02-2014, 02:07 AM #10
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Default Grand Mal

Quote:
Originally Posted by Diandra View Post
Hi PamelaJune,
Yesterday I had to restart my lyrica because my seizures started again( just partial complex seizures). You mentioned you took lyrica for seizures but you are now off it. Do you mind me asking what you are taking for seizures and is it a drug you tolerate OK?
Thanks, Diandra
Hi Diandra, my seizure in 2012 was the first I have had since 1966. At the time I was 5 and now I'm 52. As a child I had them fairly often, 1966 was a biggie causing my heart to arrest. After much testing with in childhood terms lots of "pink and blue buttons stuck to my head" they concluded I was experiencing febrile convulsions, down the track they determined I would never be able to regulate my core body temperature. To this day I'm the only one I know who goes to the beach and takes a jumper! if I lie down to rest in the day my temp plummets, on waking I'm shivering with cold, in winter I go to sleep with the fan on beside my bed as I'm hot. In 1968 they said if I overheated it would cause me to seize again.

The seizure in August 2012 came out of the blue, but I was suffering acute pain with an extreme headache and had all the signs something big coming, experiencing a really offensive smell and taste for days before it hit. They just don't know what caused the seizure but the really nasty doctor I saw told me it was because of acute pain. I remember nothing, lost 3 hours completely.

My neurologist put me on Lyrica increasing me up to 300 with the plan to further increase it, tbh I couldn't see or feel that it was making any difference to me and as my friend had suffered such withdrawal I weaned off it instead. I have so many problematic illnesses my GP wants to resolve one issue before tackling another. I had a small seizure in the December of 2012 while I was still taking the Lyrica and once my script ran out, in discussion with my GP I chose not to renew it.. I've concentrated on resolving the spinal problems before tackling the head. IMO the headaches come from stress of pain I'm suffering with my chronic back pain.

The GP put me on Xanax to control my anxiety and headaches as the evidence indicates it's the headache that caused the grand mal. With Xanax you can have even worse withdrawal symptoms than lyrica as I learned it too can cause you to have a seizure! I take Xanax only when I recognise the headache is entering dangerous waters, i.e. I smell offensive odours no one else can smell, experience a horrid taste, have visual disturbance or feel like my brain is in a little boat bobbing around on the ocean or slipping sideways, sounds weird I know. I take it only on the basis I am at home, someone is here and the idea is I will go to bed and stay there until the following day. So far it's worked, this year I've only taken it 3 times, maximum dose 1mg. I will not take it daily ever again.

Lyrica is an expensive drug in AUS. I have taken amytriptaline previously but, as they increased the doseage I began to get tremors and the feeling of fogginess that came with it I disliked. Not much help to you I'm sorry, and I'm so sad that you are experiencing seizures.

I know a lot of us dislike Lyrica and in reality, nearly all drugs have side effects and or withdrawal symptoms. If you need a drug and it works for you, so long as you are aware of the withdrawals and or side effects, you can prepare and ensure you are never be in a situation where you will run out. Eventually if and when you can come off it, do it with your physician and develop a schedule so it's not putting your body or mind at risk. The drug does work wonders for many people and if you are one that can notice the improvement it may be worth the risk. Many people do not experience any withdrawal symptoms at all although you indicate you did, I'm so sorry.

Last edited by PamelaJune; 02-02-2014 at 02:11 AM. Reason: Wording
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