April 18, 2013
Chronic pain is often times associated with neurological disorders. According to published medical research, 20 to 40 percent of patients who suffer from neurological diseases also suffer from chronic pain. Chronic pain can make even the simplest activities a challenge.
Neurological disease can result from a range of functional changes including traumatic injury to the central nervous system, the breakdown in functionality of neurons, infection and stroke. Discovering the cause behind the disease helps to better manage the associated pain. Treatment options for chronic pain include acupuncture, stimulation, psychotherapy, relaxation, behavior modification and medications.
About the Speaker
Shrif Costandi, MD is a physician in Cleveland Clinic’s Department of Pain Management. He completed a fellowship in pain management at Cleveland Clinic. Dr. Costandi was a resident at The Brookdale University Hospital and Medical Center in Brooklyn, New York. He graduated medical school from Cairo University Faculty of Medicine in Cairo, Egypt.
Let’s Chat About Managing Pain from Neurological Disorders
Moderator: Welcome to our Online Health Chat with Cleveland Clinic expert Dr. Shrif Costandi. We are thrilled to have him here today for this chat.
Diagnosis of Hip and Leg Pain and Sciatica
jazzy4242: I have had burning hip pain (at times hops just hurt). I have a right paracentral herniated disc at L4-L5. I had two epidurals last year with no luck. I also have burning in my right arm and hand. I notice my hand is colder than the left hand. I've been through nerve tests and nothing is ever found. I also have new daily persistent headache (NDPH) for seven years. Any advice or suggestions are appreciated.
Shrif_Costandi,_MD: Well, the question is whether the herniated disc pushing on the nerves or not. The good thing is your nerve studies are normal. Your case does not seem to be an easy one. I would recommend further work up of the hip by doing hip X-rays or even MRI. As for the NDPH you have to be started on preventive medications and make sure you are not overmedicated, and end up having medication overuse headaches.
cbnome: I have been having bad pains down my right leg. How do you know if the pain is neurological or not?
Shrif_Costandi,_MD: If your pain is associated with other symptoms like weakness, tingling and loss of balance—then it is probably neurological. If your pain follows a certain nerve pattern, then it is highly neurological. The best way to know is to see a doctor to rule it out. Also doing an X-ray or MRI can pinpoint the actual cause of the problem.
Pain after Seizure
loveitaly: My daughter is 31 years old. She is a lovely young lady with a beautiful personality, always smiling and happy. She has brain damage since birth, with cerebral palsy and refractable seizure disorder. Her seizures are small, complex partial, and they happen frequently every month. Does having seizures cause some type of pain? What about her cerebral palsy? Her hands are more contracted than her lower extremities, which are fine. She is nonambulatory, and has scoliosis and hip dislocation.
Shrif_Costandi,_MD: Seizures do cause muscle pain after the seizures. As far as the contractures, there is nothing you can do more than try different anti-spastic agents, orthotics for the limbs, and try to do stretching exercises as much as you can do—and as much as she allows you to do. If this is severe, you might need tendon releases.
loveitaly: I mentioned my daughter who has seizures previously. She does use arm splints, and as a child she used all kind of ankle foot orthoses (AFO). Now she uses a little AFO only to the top of the ankle. She receives at home physical therapy and occupational therapy, uses the prone stander three times a week, and we do range of motion exercises every day. She has severe GERD, and when this began 14 years ago, no doctor knew why she was crying so much. Her way of protecting herself from the pain was curving her arms close to her chest, which is why the contractures are basically in her hands. But we rarely have to give her Tylenol® for the pain because she hardly complains of pain (that we know of).
Shrif_Costandi,_MD: Seizures and contractures could cause pain. Pain is usually worst after the seizures. I agree with you Tylenol® is good for pain control. I cannot stress upon the importance of the exercises.
Chronic Inflammatory Demyelinating Polyneuropathy
Madonna: What is the most effective pain protocol for chronic inflammatory demyelinating polyneuropathy (CIDP) pain? I am a 68-year-old man who weighs 130 lbs and am in a wheelchair. I can't stand and am newly diagnosed as an insulin-dependent diabetic.
Shrif_Costandi,_MD: You will need to try different nerve membrane stabilizers and then titrate the doses to effective doses without developing side effects. It is never a single agent—usually a combination of them has synergistic action and better outcomes. For example, you may try gabapentin and amitriptyline. If they are not effective, then other combinations need to be tried. People respond variably, so we have to try different combinations first. If the pain was never controlled with oral medications, the next step sometimes is to use a spinal cord stimulator or pain pump that infuses medication around the spinal cord.
Numbness and Vertigo with Migraine Pain Management
gabriellesena: Are numbness of feet, aching joints (primarily ankles and knees), balance issues with dizziness, vertigo and a lack of coordination when walking a neurological issue or rheumatoid issue? Could it also be a side effect of Botox® injections for migraines or triptan medications (serotonin receptor agonists) for migraine management?
Shrif_Costandi,_MD: I don’t think it is related to the Botox® or the triptans. I think it is more neurological especially with vertigo, dizziness and lack of coordination. The aching joint might be from arthritis or rheumatologic. I would go to a neurologist first if your neurological symptoms are more serious.
Pinched Nerve Treatment
jdowny: What is the best way to eliminate pain from a pinched nerve?
Shrif_Costandi,_MD: I am assuming you mean pinched nerve in the back. If that is the case, we usually start with conservative measures like oral medications and physical therapy. If there is no response, we try injections with physical therapy, and then finally the last resort is surgery if there is something on the MRI that is fixable.
Mirror Box Therapy
Tazzy: Have you ever heard of using a mirror box for pain relief and does it work? If the pain affects only one side of the body, such as with stroke, amputation phantom pain or pain from injury, you are to place the affected limb behind a mirror to obscure it and concentrate on the mirror image of the pain free limb moving in the mirror. It leads the brain to think the affected hand or leg is the one moving—even though it’s not. It is supposed to retrain the brain to think it can move affected side without pain and eventually you can move without pain. It is also used to restore movement after paralysis. Does this actually work? How long does it take and how many times and minutes per day should this exercise be done? Does the improvement last or is it only temporary?
Shrif_Costandi,_MD: Managing pain after stroke and paraplegia is very challenging. We have tried many modalities, but none of them is 100 percent effective. Usually a multidisciplinary approach and comprehensive program get the best outcomes. Mirror therapy is very effective. Many studies have been done and shown its effectiveness. Some physicians think it is the most effective therapy right now. The effect is usually long lasting, not temporary, but relapses can happen. You have to be evaluated first and depending on the severity of your condition, the therapist usually determines the duration and number of sessions. It really depends on your progress with this therapy.
rfkrause46: I am a 66-year-old male with spasmodic torticollis. I currently receive 300 units of Botox® every 90 days, and have for the past nine years. Are there any downsides to continued use of Botox®? Are there any alternatives with the exception of deep brain stimulation (DBS)?
Shrif_Costandi,_MD: No long-term studies have been done on Botox® showing the long-term side effects. But a theoretical side effect is atrophy of the muscles. But with proper dosages, exercise and proper nutrition, it should not be a problem. Again it is theoretical. There are no other alternatives as of now except DBS.
marta: My daughter gets frequent migraines. What is the best to do to relieve the pain? She takes amitriptyline (10 mg) which helps her sleep, but she is still in pain.
Shrif_Costandi,_MD: We can try to increase the dose, since the therapeutic dose for amitriptyline varies from one patient to another depending on their metabolism and the severity of the pathology. Another consideration is adding Neurontin®. Usually we have better success with the combination rather than using a single agent.
Treatment of Leg and Hip Pain and Sciatica
ssparr: I have severe neurological pain in my legs and hip pain. My primary diagnosis is multiple sclerosis, but I also have bulging discs. Most days I try to manage the pain by stretching and staying active, but nighttime is the worst and prevents sleep. I have Vicodin® (acetaminophen and hydrocodone), but I don't like to take it on a regular basis. It seems to help with the back and hip pain, but not so much for the pain in my legs. I have had allergic reactions to Lyrica® (pregabalin) and other medicines in that family. Are there other therapies that could be beneficial for neurological pain that goes down both sides of my legs?
Shrif_Costandi,_MD: There are different classes of medications that work for the pain radiating down the leg, but the question is which one is the best for you? People respond differently and variably. There are tons of those medications and they work with different mechanisms. Some of these include Neurontin® (gabapentin), amitriptyline, Lamictal® (lamotrigine), Topamax® (topiramate), duloxetine, venlafaxine , maprotiline, baclofen, Keppra® (levetiracetam), and so on. I do not recommend taking Vicodin® or other narcotics for long term. No studies have shown any good outcomes for using long-term narcotics in non-cancer pain conditions. The other option is to consider a spinal cord stimulator, which is usually the next step if patients do not respond to oral medications. Another option is a pain pump.
gladly: I am waiting for a neurological appointment. In the meantime, what is best for sciatic pain?
Shrif_Costandi,_MD: The best way is to try oral NSAIDs (nonsteroidal anti-inflammatory drugs, such as ibuprofen, Motrin®, Advil®, etc.). If you are having numbness, you might want to start a nerve membrane stabilizer. The other option is to try to see if neurology or pain management departments offer a ‘same day’ appointment that can accommodate you earlier.
Nerve Membrane Stabilizer
Tazzy: What is a nerve membrane stabilizer?
Shrif_Costandi,_MD: Medications that decrease firing of the nerves. There are so many classes of them and they work with different mechanism. Examples include Lyrica®, Neurontin®, amitriptyline, Cymbalta®, etc.
derekl: I have sarcoidosis and have been diagnosed with small fiber neuropathy. My symptoms were muscle pain and twitches, and numbness in my hands and feet. I've recently started (intravenous immunoglobulin) IVIG infusions every three weeks. After the first treatment my symptoms become much worse—with more pain, numbness, pins and needles sensation, and burning hands and feet. My second treatment was one week ago, and the symptoms were not as bad this time, but still there. Is this common with IVIG? When can I expect to see improvements of my worsened symptoms as well as my original symptoms? And are there any other treatment options that have proven successful?
Shrif_Costandi,_MD: IVIG is a common treatment for such conditions, but they can be associated with major side effects. Sometimes the first session is the worst, but then the body adapts eventually and builds tolerance. Usually the latter ones are more effective for the cumulative effect. Usually the multidisciplinary approach is accompanied with the best outcome. In addition to the IVIG (if indicated), oral nerve membrane stabilizers and physical therapy can be used.
Side Effects of Medication
joyrp: My mother has been diagnosed with autonomic dysreflexia and her doctors also believe there is another undiagnosed autonomic disorder. She appears to fall asleep while doing everyday tasks, has huge gaps in memory and confuses reality with what she was thinking about during these episodes. More often than not, she is often in a semi-lucid state and has limited (slow motion) motor control, often leading to falls. The pain management team attributes these episodes to her pain medication instead of looking for biological reasons. She has had nerve blocks, epidurals, Botox®, TENS (transcutaneous electrical nerve stimulation) and acupuncture. Between the pain and the severe hypotension and hypertension, the number of decent days she has in a month can be counted on one hand. What specific questions or tests should we request to encourage her physicians to look further into a specific diagnosis?
Shrif_Costandi,_MD: Pain medications can cause all of the above symptoms But your question is valid—what if there is an underlying organic cause for all of that? The tests that could be done include MRI and CT scans, blood levels of electrolytes and EMG (electromyogram). Another consideration is to try to slowly taper the pain medication. You’ll be able to see if there is any improvement in her symptoms and if there is any difference in her pain control. If her pain gets bad and the symptoms are the same, then you will know it is not coming from the pain medications and they can increase the medications to optimize her conditions. In addition, her autonomic dysreflexia should be controlled to minimize these symptoms (especially falls).
joyrp: Are side effects of pain medications for neuropathy, autonomic dysreflexia and autonomic nervous system pain known to cause repeated syncope-like symptoms?
Shrif_Costandi,_MD: It really depends on the classes of pain medications. But all pain medications could potentially cause dizziness, excessive sedation, drop in blood pressure, fatigue, daytime sleepiness and insomnia.
New Treatments for Neuropathic Pain
Tracy Z.: I have geniculate neuralgia, occipital neuralgia with major headaches, severe Chiari malformation type 1, a rebuilt cervical spine and degenerative disc disease, and POTS (postural orthostatic tachycardia syndrome). I have been working with pain management specialists since 2001. Neuropathic pain is very challenging to treat. What is new on the horizon as far as new therapies? I have literally tried everything except spine catheterization.
Shrif_Costandi,_MD: Neuropathic pain is very challenging. If you have tried different medications and pain rehabilitation programs, then you are left with spine catheterization. Local anesthetics (numbing medicine) such as narcotics can be put in. A new medication is called Prialt® (ziconotide) is available, but the person who delivers this drug needs a lot of experience in titration of the medication since it has serious side effects.
Tracy Z.: Why do medications that treat neuropathic pain have such horrible side effects, including brain fog, word loss, word blindness, headaches, lethargy, weight gain, memory loss, and so on. Most of these medications are crossover medications being used to treat other diagnoses or in some instances orphan drugs. Would it not be better for drug companies to develop new medications for neuropathic pain?
Shrif_Costandi,_MD: I agree with you completely. We need to develop certain medications that target the neuropathic pain only. Currently, there is a lot of animal studies with different drugs and trying to tailor those medications. The biggest problem though is funding. Companies really look for drugs and medications that will bring more revenue and neuropathic pain is not one of them. Companies want to invest in medications for cancer and heart disease. That being said, there are studies that are ongoing, but they could be conducted faster if there was more funding. The other problem, there has been more success with intervention—like spinal cord stimulators than medications. They tend to treat pain better than medications, but they have a higher cost and require implantation of a device, which is a major drawback.
really: I have nerve damage from a bad cut in my arm. Along with the pain, I get burning, tingling and severe itching. Will this ever go away and is there any way to relieve this?
Shrif_Costandi,_MD: It depends on the severity of the nerve damage and the duration of nerve damage. Sometimes the nerves heal, but that may take long time—usually three to six months at least. We usually try conservative measures first and give the nerves a chance to heal on its own. If your pain persists even with different medications and you fail conservative measures, we can consider Bioness NESS H200®, which is a novel technique that treats neuropathic pain caused by damaged single nerves. It is a tiny implant that is placed along the course of the nerve. This technique is under investigation, and Cleveland Clinic is part of this multi-center study. We are having great results with it.
Tazzy: How effective is therapeutic ultrasound for pain relief? What about fluidotherapy, iontophoresis or photophoresis? There is something called IontoPatch®, which I think is sort of new. It's like iontophoresis except it’s wireless and uses a battery within the patch that slowly releases the medication (dexamethasone) over a six-hour period. They claim it works better than the short delivery method. The medication stays in the painful area longer and, therefore, works better to reduce inflammation and pain. Which of these methods do you think works best, or which do you think are least effective for pain relief?
Shrif_Costandi,_MD: The published literature data with all these modalities have been very controversial. No solid data supports or disapproves the use of them. Maybe in the future with the new advances in technology, we might have better results. As you said those modalities are good for painful inflammatory musculoskeletal conditions. The new patch sounds promising, but don’t be discouraged if it doesn’t work—it is a 50/50 chance. I think they are all the same.
Complementary Medicine: Yoga and Acupuncture
clearly: I have read reports that yoga can help relieve neurological pain. Is this true? If so, how?
Shrif_Costandi,_MD: Yoga can help with musculoskeletal pain, as it relieves the tension and stress being built up. It enhances the endurance of the muscles. Usually exercises and working out releases endorphins—chemicals made by the body that helps to relieve the pain.
ethel: Would you recommend acupuncture for multiple sclerosis-related pain?
Shrif_Costandi,_MD: I would give it a try. The response to acupuncture varies from one person to another. It might work and it might not.
Moderator: I'm sorry to say that our time with Cleveland Clinic expert Dr. Shrif Costandi is now over. Thank you Dr. Costandi for taking your time to answer our questions today about Managing Pain from Neurological Disorders.
Shrif_Costandi,_MD: Thank you so much for your time. I hope this was helpful.
To make an appointment with Dr. Costandi or any of the other specialists in our Department of Pain Management at Cleveland Clinic, please call 216.444.PAIN (7246) or 800.392.3353. You can also visit us online at www.clevelandclinic.org/painmanagement.
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