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Respected Contributor
Posts: 4,997
Registered: ‎03-12-2010

My 28 year old daughter has been given Neurontin for pain.  No one has been able to diagnose the source of her pain.  No one will give her pain medication, despite 7 doctors, lots of tests, and her life in mess.

 

She has pain in her lower body, in her thighs, knees, ankles, and it just becomes the whole lower body.  She feels unsteady and weak in her legs at times. 

 

She is trying 300mg at bedtime now.  I know that is a low dose overall.  But, she is having the side effects!  She feels dizziness, unsteadiness, and mentally fuzzy.  It is knocking her out for sleep, which is not necessarily bad.

 

Wondering how long it takes and if anyone has had success with this drug.  I know about the drug, but not how long people take to see results.

 

Thanks.

 

Hyacinth

 

 

Respected Contributor
Posts: 3,512
Registered: ‎03-09-2010

Many of these medications have to be titrated for the individual: a low dose may work for one person whereas another may need a higher dose. For some, certain medications may not work at all-or a combination of medications may be needed. That being said, I don't know that too many practitioners would be jumping to give her pain medication without knowing the cause. Seriously, it sounds as if she needs to go to a university hospital and find out the root cause. Has she seen a neurologist? I am not a doctor, but this sounds as if something neuromuscular is going on. We think that diagnosing would be easy, but as you can see with your daughter, it's not clear cut....she could also have some sort of autoimmune disorder. I would say this is the time she needs "big guns".

Poodlepet2

Honored Contributor
Posts: 13,913
Registered: ‎03-10-2010

 

@hycinth003

 

When I had my 6 month bout with shingles a couple years ago, my GP suggested Neurontin for my pain. I told him I would get back to him. I then spoke to my sister that had shingles a few years prior. Her son is a doctor that owns 5 Pain Clinics, 3 in our state/1 in California, and 1 in South Korea.

 

He told her he never prescribes that any longer to any of his patients. The risk of the side effects of many of the patients which he had prescribed Neurontin outweighed any benefits.

 

I called my GP and told him I would stick with tylenol for my pain.

 

 

hckynut(john)

 

 

hckynut(john)
Respected Contributor
Posts: 3,403
Registered: ‎03-14-2010

@hyacinth003 wrote:

My 28 year old daughter has been given Neurontin for pain.  No one has been able to diagnose the source of her pain.  No one will give her pain medication, despite 7 doctors, lots of tests, and her life in mess.

 

She has pain in her lower body, in her thighs, knees, ankles, and it just becomes the whole lower body.  She feels unsteady and weak in her legs at times. 

 

She is trying 300mg at bedtime now.  I know that is a low dose overall.  But, she is having the side effects!  She feels dizziness, unsteadiness, and mentally fuzzy.  It is knocking her out for sleep, which is not necessarily bad.

 

Wondering how long it takes and if anyone has had success with this drug.  I know about the drug, but not how long people take to see results.

 

Thanks.

 

Hyacinth

 

 


Have you gone to the leading physicians at teaching hospitals for a diagnosis?  I haven't been closely following your search.  It would be much better if she could be diagnosed and then treated specifically for her pain source.  Could it be a rare genetic disorder?  Those seem to be the hardest to nail down.  Can they do a DNA workup on a patient to find a genetic marker for certain illnesses?  Just a question.

 

I feel so bad about your daughter's illness!  You've been so strong and have persisted when most people would have given up!!

 

Bless you and HUGS from me to you!!!!!

Respected Contributor
Posts: 2,112
Registered: ‎12-08-2014

I have been on 300mg at bedtime for a year, I have spinal stenosis which results nerve pain in one leg.  I have the same side effects, ideally I would like to take a dose during the day. But I'd be sleepy and spaced out.  Your daughters side effects are normal for Neurontin.  She might adjust after a while.  I didn't but I am just very very thankful that I can sleep and I'm pain free until mid morning when the drug wears off.  It is not a narcotic or a sedative, it only works on nerve pain. My pain doc recently said I can take it 3 times a day if needed but  that is not possible be because I work and I don't like feeling spaced out.   I also have an undiagnosed pain syndrome that affects various parts of my body.  Next  month, I get a lumber spine injection,.  

 

 

 

 

 

 

Respected Contributor
Posts: 4,997
Registered: ‎03-12-2010

@fortune wrote:

@hyacinth003 wrote:

My 28 year old daughter has been given Neurontin for pain.  No one has been able to diagnose the source of her pain.  No one will give her pain medication, despite 7 doctors, lots of tests, and her life in mess.

 

She has pain in her lower body, in her thighs, knees, ankles, and it just becomes the whole lower body.  She feels unsteady and weak in her legs at times. 

 

She is trying 300mg at bedtime now.  I know that is a low dose overall.  But, she is having the side effects!  She feels dizziness, unsteadiness, and mentally fuzzy.  It is knocking her out for sleep, which is not necessarily bad.

 

Wondering how long it takes and if anyone has had success with this drug.  I know about the drug, but not how long people take to see results.

 

Thanks.

 

Hyacinth

 

 


Have you gone to the leading physicians at teaching hospitals for a diagnosis?  I haven't been closely following your search.  It would be much better if she could be diagnosed and then treated specifically for her pain source.  Could it be a rare genetic disorder?  Those seem to be the hardest to nail down.  Can they do a DNA workup on a patient to find a genetic marker for certain illnesses?  Just a question.

 

I feel so bad about your daughter's illness!  You've been so strong and have persisted when most people would have given up!!

 

Bless you and HUGS from me to you!!!!!


We are somewhat limited in who we can see due to her being on Medicaid.  She has to have something under the law, and she doesn't get it from work.  Most doctors don't want to take Medicaid.

 

But, we are seeing specialists at the U of I for neurology and pain management.  She has seen 2 rheumatologists, 1 internal medicine specialist, and 1 family practice.

 

She will have a repeat thoracic MRI due to them seeing something, but they think it is artifact and a lumbar MRI since that hasn't been done yet.

 

They have even implied that this may be psychogenic.  I told them I totally DISAGREE, as I know her, watch her, and there's just no reason for her turning her life upside down. I wish it was!

 

Thanks for your kindness.

 

Hyacinth

Respected Contributor
Posts: 4,997
Registered: ‎03-12-2010

@hckynut wrote:

 

@hycinth003

 

When I had my 6 month bout with shingles a couple years ago, my GP suggested Neurontin for my pain. I told him I would get back to him. I then spoke to my sister that had shingles a few years prior. Her son is a doctor that owns 5 Pain Clinics, 3 in our state/1 in California, and 1 in South Korea.

 

He told her he never prescribes that any longer to any of his patients. The risk of the side effects of many of the patients which he had prescribed Neurontin outweighed any benefits.

 

I called my GP and told him I would stick with tylenol for my pain.

 

 

hckynut(john)

 

 


Good that you could get away without using it.  Some people have such severe pain after shingles outbreak.

 

Shingles was the first thing that they discovered Neurontin helped (other than seizure disorder).

 

Hyacinth

Respected Contributor
Posts: 2,326
Registered: ‎10-21-2011

Have they looked at her SPINE? Pressure on the spinal cord causes pain and weakness, pain in thighs, and weakness can start at ankle. All kinds of things can press on the spine. 

Valued Contributor
Posts: 769
Registered: ‎08-28-2010

They prescribed neurotin for my mother for pain and she took it once and never took it again.  She said it made her feel like she was drunk or out of it.  I would not take it.

Respected Contributor
Posts: 3,512
Registered: ‎03-09-2010

Usually when it's a spine issue such as stenosis, disc bulges, herniation or tumors, they are easily visualized on MRI or CT scans and there are tell tale neurologic defficits. This sounds like more is going on. Hyacinth, I know you aren't buying the suggestion that this is psychogenic

Poodlepet2but that element could be in the mix: it does not mean that her pain or weakness is imagined-but don't scoff if she is offered a low-dose antidepressant such as Elavil. Where pain management is concerned, it's in the arsenal of medications used.  Depression an chronic pain go hand in hand, but in pain management it's often used as an adjunct to other medications.