Just Diagnosed with Small Fiber Neuropathy

@jakedduck1 @lorirenee1
I don't remember what he said about the hallucinations and I doubt Linda does as she has not mentioned it ever. Her hallucinations were not scary but were very real seeming. She described them as cartoony bubble men floating around her and making faces and doing various antics. She said had they been scary critters, since they were so real, pretty much anyone would probably stop the gabapentin for that alone. She found it a strange phenomenon. I'm not sure I ever heard before that if you keep taking it long enough some of the symptoms subside, and I'm not really sure we knew all that much about the drug while she was taking it. But it was over two years ago now and ancient history in our book.

Best to you both, Hank

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@jesfactsmon
Good morning or perhaps afternoon,
Hi Hank,
I have been taking all sorts of seizure medications for over 50 years and I used to take Neurontin the brand name of Gabapentin but it didn’t help my seizures or my neuropathy so I discontinued it.
Most seizure medication side effects resolve within weeks to several months. i’m surprised her symptoms didn’t improve within two months. hallucinations are very rare with gabapentin. Was your wife taking other medication/s at the time? Another reason for side effects is when the medication is initially started to quickly and/or at to high a dose and the same thing with any incremental increases.
I'm not surprised about the dizziness, balance,
brain fog or memory issues. Those are all very common side effects from seizure medications. However they do usually resolve at least to some degree after a period of time. The hallucinations however really perplex me. Did her doctor by chance have anything to say about the hallucinations?
Take care Hank & Mrs Hank,
Jake

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@jesfactsmon

Chemo-Induced Peripheral Neuropathy: Quality of Life and Treatment Planning
The Foundation for Peripheral Neuropathy is bringing together a panel of experts for this webinar to discuss CIPN and its impact on patients and their physical and mental health.
https://www.foundationforpn.org/events/?blm_aid=116106

Date: November 10, 2020
Time: 12:00 PM – 1:00 PM ET (Please note that this lecture starts at 11 a.m. Central, 10 a.m. Mountain and 9 a.m. Pacific)
REGISTER NOW - https://register.gotowebinar.com/register/5174813403335669772

Panelists for the webinar are:

Thomas Smith, MD FACP FASCO FAAHPM
Professor of Oncology,
Sidney Kimmel Comprehensive Cancer Center, Johns Hopkins University

Stefanie Geisler, MD
Assistant Professor, Neurology,
Washington University, St Louis, MO

Krista Nelson, LCSW, OSW-C, Oncology Social Worker
Providence Health Systems

CIPN (Chemo-Induced Peripheral Neuropathy) can be an unexpected side-effect of certain breast and other cancer treatments. While the treatments save lives, the resulting CIPN can be life-changing and devastating.

CIPN, depending on its severity, may impact future treatment decision-making requiring effective doctor-patient communication about future options and goals of therapy. Patients often find it difficult to find information about CIPN and are at a loss as to how to discuss treatment options with their medical care providers. Patients are equally unaware of the impact on their ongoing mental health that CIPN can cause.

The panelists will provide the latest information about the causes and treatments of CIPN, offer insight into the patient-doctor relationship, and explore the emotional challenges and medical options in coping with CIPN. The webinar will conclude with a Q&A session.

This webinar is generously sponsored by:

The Foundation for Peripheral Neuropathy
485 Half Day Road, Suite 350
Buffalo Grove, IL 60089
847-883-9942
http://www.foundationforpn.org

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@jesfactsmon

Chemo-Induced Peripheral Neuropathy: Quality of Life and Treatment Planning
The Foundation for Peripheral Neuropathy is bringing together a panel of experts for this webinar to discuss CIPN and its impact on patients and their physical and mental health.
https://www.foundationforpn.org/events/?blm_aid=116106

Date: November 10, 2020
Time: 12:00 PM – 1:00 PM ET (Please note that this lecture starts at 11 a.m. Central, 10 a.m. Mountain and 9 a.m. Pacific)
REGISTER NOW - https://register.gotowebinar.com/register/5174813403335669772

Panelists for the webinar are:

Thomas Smith, MD FACP FASCO FAAHPM
Professor of Oncology,
Sidney Kimmel Comprehensive Cancer Center, Johns Hopkins University

Stefanie Geisler, MD
Assistant Professor, Neurology,
Washington University, St Louis, MO

Krista Nelson, LCSW, OSW-C, Oncology Social Worker
Providence Health Systems

CIPN (Chemo-Induced Peripheral Neuropathy) can be an unexpected side-effect of certain breast and other cancer treatments. While the treatments save lives, the resulting CIPN can be life-changing and devastating.

CIPN, depending on its severity, may impact future treatment decision-making requiring effective doctor-patient communication about future options and goals of therapy. Patients often find it difficult to find information about CIPN and are at a loss as to how to discuss treatment options with their medical care providers. Patients are equally unaware of the impact on their ongoing mental health that CIPN can cause.

The panelists will provide the latest information about the causes and treatments of CIPN, offer insight into the patient-doctor relationship, and explore the emotional challenges and medical options in coping with CIPN. The webinar will conclude with a Q&A session.

This webinar is generously sponsored by:

The Foundation for Peripheral Neuropathy
485 Half Day Road, Suite 350
Buffalo Grove, IL 60089
847-883-9942
http://www.foundationforpn.org

Jump to this post

@jesfactsmon

Chemo-Induced Peripheral Neuropathy: Quality of Life and Treatment Planning
The Foundation for Peripheral Neuropathy is bringing together a panel of experts for this webinar to discuss CIPN and its impact on patients and their physical and mental health.
https://www.foundationforpn.org/events/?blm_aid=116106

Date: November 10, 2020
Time: 12:00 PM – 1:00 PM ET (Please note that this lecture starts at 11 a.m. Central, 10 a.m. Mountain and 9 a.m. Pacific)
REGISTER NOW - https://register.gotowebinar.com/register/5174813403335669772

Panelists for the webinar are:

Thomas Smith, MD FACP FASCO FAAHPM
Professor of Oncology,
Sidney Kimmel Comprehensive Cancer Center, Johns Hopkins University

Stefanie Geisler, MD
Assistant Professor, Neurology,
Washington University, St Louis, MO

Krista Nelson, LCSW, OSW-C, Oncology Social Worker
Providence Health Systems

CIPN (Chemo-Induced Peripheral Neuropathy) can be an unexpected side-effect of certain breast and other cancer treatments. While the treatments save lives, the resulting CIPN can be life-changing and devastating.

CIPN, depending on its severity, may impact future treatment decision-making requiring effective doctor-patient communication about future options and goals of therapy. Patients often find it difficult to find information about CIPN and are at a loss as to how to discuss treatment options with their medical care providers. Patients are equally unaware of the impact on their ongoing mental health that CIPN can cause.

The panelists will provide the latest information about the causes and treatments of CIPN, offer insight into the patient-doctor relationship, and explore the emotional challenges and medical options in coping with CIPN. The webinar will conclude with a Q&A session.

This webinar is generously sponsored by:

The Foundation for Peripheral Neuropathy
485 Half Day Road, Suite 350
Buffalo Grove, IL 60089
847-883-9942
http://www.foundationforpn.org

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I haven't taken gabapentin, after reading several reviews it does not seem effective for many people and the noted side effects are undesirable to me. I'm young, dx at 35 and considering I will have this for a lifetime, I'm weary of using it.

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@strikeanerve

Gabapentin/neurontin didn't help me, and my wife says that it affected my thinking. I have 5 siblings, and Gabapentin worked for all of them.

By this point in my pn journey, I am willing to try any medication my doctors prescribe. I've had idiopathic sfpn and autonomic polyneuropathy since 2012, and I've tried a lot of medications. Some just did nothing, some didn't have any effect on my neuropathy, and had unacceptable side effects. Some reduced my pain for up to six months, then stopped working, and had no side effects. I have a team of great doctors whom I trust to give me any appropriate treatment, whether it's medication, or stimulator or surgery. After working with them for up to 15 years, I know that they have my best interest in mind.

I wish that one of the medications I've tried would treat the non-stop pain. Neuropathy is one of the diseases that has no cure, but there are many things that treat symptoms. I wish you the best in finding a treatment that works for you, and that you're comfortable with.

Jim

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