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Al

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Yes it is prescription. Not sure if Zinman gave it to me or GP. I've been using it quite a while. 2 10mg Baclofen and the Quinine have kept me cramp free for at least 2-3 years.

AL.
 

sral

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Thanks Al.

I purchased a homeopathic one called "something legs" and it was ineffective. I'll see if I can get a prescription for the quinine.

thanks.
 

Craig Mattice

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I know I'm a little late to this thread but still wished to contribute.

Having HSP (Hereditary Spastic Paraplegia) I am in chronic pain. I currently talk a regimen of Baclofen, Neurontin, Clorazepam, and Ibuprofen just to get through the day. Am I pain free? Not by a long shot but prefer to "suck up" the pain rather than become more medicated.

I have recently had a near fatal brain stem stroke so am taking PT to get back to baseline prior to the stroke. This has added a whole new level of physical challenge to me that I'm having difficulty dealing with on a daily basis. I can only hope the more in-shape I get the pain will reduce, or am I just exacerbating the current pain threshold?

Not whining, just presenting my situation for your review and comment.
 

sral

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thank you all for your advice.

My next venture is a TENS machine. Some PLSers have found it beneficial for dealing with pain - hope it works!
 

MtPockets

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Is Neurontin for you? Up to you and your Doctor.

Does anyone know of anyone studying this drug Neurontin as related to causing MND ALS? Here are a few quotes I have found:

It is given commonly for nerve injury to reduce the pain and the company that makes it states that it does not know how it works. But somehow it stops the nerves from relaying the pain to the brain. The reason I am concerned I was on this drug at 2500mg per day for over 10 years due to a spinal injury from a plane accident 18 years ago. If this drug contributed to my ALS in any way it needs to be pulled off the market before others get the same disease.

Here is a partial list of the side effects from the Neurontin website:

"Nervous System:

Frequent: vertigo, hyperkinesia, paresthesia, decreased or absent reflexes, increased reflexes, anxiety, hostility; Infrequent: CNS tumors, syncope, dreaming abnormal, aphasia, hypesthesia, intracranial hemorrhage, hypotonia, dysesthesia, paresis, ystonia,hemiplegia, facial paralysis, stupor, cerebellar dysfunction, positive Babinski sign, decreased position sense, subdural hematoma, apathy, hallucination, decrease or loss of libido, agitation, paranoia, depersonalization, euphoria, feeling high, doped-up sensation, suicide attempt, psychosis; Rare:oreoathetosis, orofacial dyskinesia, encephalopathy, nerve palsy, personality disorder, increased libido, subdued temperament, apraxia, fine motor control disorder, meningismus, local myoclonus, hyperesthesia, hypokinesia, mania, neurosis, hysteria, antisocial reaction, suicide."
I just finished filling out a report to the FDA about how the Neurontin had affected me. I doubt that it will do any good, but if anyone else out there is taking it, I would reconsider. It's too late for me but maybe someone else might not have to go through this ALS. That is why I was wondering if any scientist or group is studying this drug.
An interesting thing I found out while filling out the form for the FDA is the company that makes the drug, Neurontin, is Pfizer and they do not know or have any idea how the drug works? They said that from their own website. You got to be kidding me.
God Bless,
Big AL:cry:

To see the original post and all the comments go to:
https://www.alsforums.com/forum/showthread.php?t=1355&highlight=Neurontin&page=2
There are currently many law suits against this company for off brand use of this medication. It was originally approved only for add-on use in epilepsy.
For more information just do a search about pending lawsuits. One link is at: http://bipolar.about.com/cs/neurontin/a/neurontin_suit.htm

Caution; Only you and your Doctor can make the decision if this is best for you. It might be good to make this information available to him or her in case they are not aware.
Just trying to help.
 
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MtPockets

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Now that I got that off my chest, sorry for the soap box. I too have been dealing with chronic Pain for over 20 years now. I have been to the pain management clinics, acupuncture, hypnotized, Bio-feedback, etc.
None of which have helped me.

I was told by one highly educated "Doctor", if people can lay on a bed of nails and skewer their skin, then all you need to do is tell your mind that it really is not hurting, and it won't hurt. Mind over matter.
Such kindness and understanding from one so knowledgeable. :twisted:

What does work for me? I have learned what my body needs in the way of narcotic pain relievers such as Lortabs, Valium, and Demerol. I use the bear minimum I can to manage the pain and still be able to function.
There is always the danger with this level of drugs of becoming addicted. After 20 years, I have managed to learn what I can and cannot bear with the pain.

I understand your frustration and hope you can work this out for yourself. May God give you rest and peace with this difficult journey.
 

Frizzel

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Heat for PLS

If I can get heat up to my neck, it helps. Very warm soaks in a bath, shower or hot tub. Then, turn the electric banket on high with a down comforter, get in, turn it back to about a 4-5 I can lower the pain.

I'm on 50 mil of Bac a day. I HAVE to do what it takes to get warm, stretch and get warm again. I will become very stiff with PAIN if I get cold. I actually go into full body seizure like spasms if I don't stay on top of the spasticity and cramps or when I get overtired or very cold.

THe Quinine helps. Thanks Al. It helps with the leg cramps.

I also try to not stay in one position for too long. With ALS it may not be possible. With PLS I can.
Even with PLS the disease affects each of us differently. All we can do is the best we can do for today. Is it frustrating? YES!

I also have taken long white crew socks and filled them with white rice and a little lavendar essential oil. Tie or sew up the end and put it in the microwave for a couple of minutes to put on the area that hurts the most. Sometimes it works, sometimes it doesn't. We do what we can do.

All the best as we travel this road less traveled together. Hi Captain Al! Frizz
 

sral

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Thanks Captain AL and Frizz for your responses.

I think that for pain it really takes alot of experimentation to see what's right for each person. The unfortuante thing is that if someone has been suffering for very long and has tried more than a dozen things it gets discouraging. It may even feel like nothing is going to work.
 

Frizzel

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Discouraged

Yes, at times it is discouraging. I've been in the car traveling for the last 5 hours and I'm about ready to go over the edge with leg pain. I'm trying to keep my mind on something other than the pain. The other part of the picture is when i am not in pain I savor every moment.

AL mentioned taking his cushioned chair pad wherever he sits throughout his house. I take my cushioned chair pad EVERYWHERE! Ieven use a heating warmer when I go out on my lower back.

Yes, it is a personal journey how we can work through the pain or not. Sometimes it IS possible, sometimes it is not...I am hoping for a cure for ALS and I am hoping that if we with PLS can get studied as well, we may be able to be a part of finding one.

To each of us who 'struggle'...I want to say, "Thank you for giving of yourselves to cheer each other on over the finish line. We're all going to one day....No one really knows when right? Thanks for listening to me rant on...All the best! Frizz
 

Frizzel

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Thanks for taking the time to let people know the effects of Neurontin Captain. We need to be informed on the pros and cons of keeping ourselves going. You sure did your homework! I won't be taking Neruontin THAT's for sure! Especially after the above post! YIKES! Get on that soap box when you find out what you shared. You are always an inspiration to me! All the best! Frizz
 

Isabella Harley

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Hi Rodstew,
I too am new from Scotland and you kindly said hello, thankyou cookie. I get an enormous amount of pain and I take MST which is a slow release morphine. It keeps background pain down but I do get breakthrough pain. I use codiene and servadol, another morphine drug. Diazapam also helps as I find it helps the spacticity which alleviates some of the pain. My drugs are much reduced from what they once where, I was a wee bit zombie like! So the balance between pain and a life is a hard one-so much for this "painless" condition! Hope you find something to give you some respite. Cheers and chin up!
 

sral

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Welcome Isabella.

Every time I see someone else who has run into the "painless" definition for PLS it P##@# me off. I'm yet to find someone with this disease that is pain free.
 

BethU

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About Neurontin ... my husband has had chronic pain for over 20 years, and has been taking heavy-duty meds for the last several years. The pain clinic switched him off the patch he was wearing because of the side effects (nausea, etc.) to another strong med and added neurontin because of the type of nerve pain he has.

He has not had any break-through pain since he switched, and for the first time in years and years is almost pain free. (I don't think the pain will ever go away completely ... but on the pain scale from 1 to 10, he is now in the range of 2 to 4 instead of 8 or 9.)

I don't know if it is the neurontin or the other med, or the combination, but so far, he has had relief and no troublesome side effects. I think we all react differently to meds. Capt. Al, he is taking much less than the dose you were given, so hopefully he will be able to continue without problems. That was very interesting information you posted. Thanks for sharing it ...
 

MtPockets

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I also meant to mention another medication I am taking that is suppose to help with nerve pain called Lyrica. Here is more information on this medication:
Lyrica is used for: Treating fibromyalgia or nerve pain caused by certain conditions (eg, shingles, diabetic nerve problems). It is thought to bind to certain areas in the brain that help reduce seizures, nerve pain, and anxiety.
A good source for more detailed information can be found at: http://www.drugs.com/

Some side effects of this drug may cause;
Call your doctor at once if you have any new or worsening symptoms such as: mood or behavior changes, depression, anxiety, or if you feel agitated, hostile, restless, hyperactive (mentally or physically), or have thoughts about suicide or hurting yourself.

Boy that sounds risky. I have not had any problems with this medication, but as usual check with your own Doctor before taking this drug. I just love the way they add all the scary possible side effects. Almost makes you want to take nothing to help yourself. Is anything really SAFE?

Even with all the meds I am taking, there is still pain. Most of my pain has been associated with nerve damage to the spinal cord in the area of L4-L5-S1. Due to any accident over 20 years ago.

I hope somehow by sharing this with you it will give you some ideas to discuss with your Doctors at least.
 
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wheeler641

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I have taken lyrica, my doctor prescribed it for neuropathy, I took it for a few days than stopped, it gave me a strange feeling, kind of like "Alice in Wonderland" it made me feel kind of displaced. When I was driving I had to keep telling myself red light means stop, green means go, felt like I was zoning out ,kind of depersonalized. I take vicodin 10/325 as needed for the pain. margaret
 
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