This blog will show the realities of living everyday with Lupus. It will not always be pretty but it will always be honest. You have been warned!

Posts tagged “Neurological Disorders

List of autoimmune diseases

I was researching autoimmune disease and  found this list of many of them. It is eye opening to say the least. I was amazed how many there are. I actually have several on the list. So, in my attempt to educate others on autoimmune diseases, here is the list I found from the webpage “American Autoimmune Related Diseases Association”:

List of Autoimmune and Autoimmune-Related Diseases

 

  • Acute Disseminated Encephalomyelitis (ADEM)
  • Acute necrotizing hemorrhagic leukoencephalitis
  • Addison’s disease
  • Agammaglobulinemia
  • Allergic asthma
  • Allergic rhinitis
  • Alopecia areata
  • Amyloidosis
  • Ankylosing spondylitis
  • Anti-GBM/Anti-TBM nephritis
  • Antiphospholipid syndrome (APS)
  • Autoimmune aplastic anemia
  • Autoimmune dysautonomia
  • Autoimmune hepatitis
  • Autoimmune hyperlipidemia
  • Autoimmune immunodeficiency
  • Autoimmune inner ear disease (AIED)
  • Autoimmune myocarditis
  • Autoimmune pancreatitis
  • Autoimmune retinopathy
  • Autoimmune thrombocytopenic purpura (ATP)
  • Autoimmune thyroid disease
  • Axonal & neuronal neuropathies
  • Balo disease
  • Behcet’s disease
  • Bullous pemphigoid
  • Cardiomyopathy
  • Castleman disease
  • Celiac sprue
  • Chagas disease
  • Chronic fatigue syndrome
  • Chronic inflammatory demyelinating polyneuropathy (CIDP)
  • Chronic recurrent multifocal ostomyelitis (CRMO) 
  • Churg-Strauss syndrome
  • Cicatricial pemphigoid/benign mucosal pemphigoid
  • Crohn’s disease
  • Cogans syndrome
  • Cold agglutinin disease
  • Congenital heart block
  • Coxsackie myocarditis
  • CREST disease
  • Essential mixed cryoglobulinemia
  • Demyelinating neuropathies
  • Dermatitis herpetiformis 
  • Dermatomyositis
  • Devic’s disease (neuromyelitis optica)
  • Discoid lupus
  • Dressler’s syndrome
  • Endometriosis
  • Eosinophilic fasciitis
  • Erythema nodosum
  • Experimental allergic encephalomyelitis
  • Evans syndrome
  • Fibromyalgia**
  • Fibrosing alveolitis
  • Giant cell arteritis (temporal arteritis)
  • Glomerulonephritis
  • Goodpasture’s syndrome
  • Graves’ disease
  • Guillain-Barre syndrome
  • Hashimoto’s encephalitis
  • Hashimoto’s thyroiditis
  • Hemolytic anemia
  • Henoch-Schonlein purpura
  • Herpes gestationis
  • Hypogammaglobulinemia
  • Idiopathic thrombocytopenic purpura (ITP)
  • IgA nephropathy
  • IgG4-related sclerosing disease
  • Immunoregulatory lipoproteins
  • Inclusion body myositis
  • Insulin-dependent diabetes (type1)
  • Interstitial cystitis
  • Juvenile arthritis
  • Juvenile diabetes
  • Kawasaki syndrome
  • Lambert-Eaton syndrome
  • Leukocytoclastic vasculitis
  • Lichen planus
  • Lichen sclerosus
  • Ligneous conjunctivitis
  • Linear IgA disease (LAD)
  • Lupus (SLE)
  • Lyme disease, chronic 
  • Meniere’s disease
  • Microscopic polyangiitis
  • Mixed connective tissue disease (MCTD)
  • Mooren’s ulcer
  • Mucha-Habermann disease
  • Multiple sclerosis
  • Myasthenia gravis
  • Myositis
  • Narcolepsy
  • Neuromyelitis optica (Devic’s)
  • Neutropenia
  • Ocular cicatricial pemphigoid
  • Optic neuritis
  • Palindromic rheumatism
  • PANDAS (Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcus)
  • Paraneoplastic cerebellar degeneration
  • Paroxysmal nocturnal hemoglobinuria (PNH)
  • Parry Romberg syndrome
  • Parsonnage-Turner syndrome
  • Pars planitis (peripheral uveitis)
  • Pemphigus
  • Peripheral neuropathy
  • Perivenous encephalomyelitis
  • Pernicious anemia
  • POEMS syndrome
  • Polyarteritis nodosa
  • Type I, II, & III autoimmune polyglandular syndromes
  • Polymyalgia rheumatica
  • Polymyositis
  • Postmyocardial infarction syndrome
  • Postpericardiotomy syndrome
  • Progesterone dermatitis
  • Primary biliary cirrhosis
  • Primary sclerosing cholangitis 
  • Psoriasis
  • Psoriatic arthritis
  • Idiopathic pulmonary fibrosis
  • Pyoderma gangrenosum
  • Pure red cell aplasia
  • Raynauds phenomenon
  • Reflex sympathetic dystrophy
  • Reiter’s syndrome
  • Relapsing polychondritis
  • Restless legs syndrome
  • Retroperitoneal Fibrosis
  • Rheumatic fever
  • Rheumatoid arthritis
  • Sarcoidosis
  • Schmidt syndrome
  • Scleritis
  • Scleroderma
  • Sjogren’s syndrome
  • Sperm & testicular autoimmunity
  • Stiff person syndrome
  • Subacute bacterial endocarditis (SBE)
  • Susac’s syndrome
  • Sympathetic ophthalmia
  • Takayasu’s arteritis
  • Temporal arteritis/Giant cell arteritis
  • Thrombocytopenic purpura (TTP)
  • Tolosa-Hunt syndrome
  • Transverse myelitis
  • Ulcerative colitis
  • Undifferentiated connective tissue disease (UCTD)
  • Uveitis
  • Vasculitis
  • Vesiculobullous dermatosis
  • Vitiligo
  • Wegener’s granulomatosis

**NOTE Fibromyalgia and Chronic Fatigue are listed, not because they are autoimmune, but because many persons who suffer from them have associated autoimmune disease(s)


Tremors In Lupus Patients

To start this post, I find it is important to describe what the definition of tremor is. Here is the definition from wikipedia:

A tremor is an involuntary,[1] somewhat rhythmic, muscle contraction and relaxation involving to and fro movements (oscillations or twitching) of one or more body parts. It is the most common of all involuntary movements and can affect the hands, arms, eyes, face, head, vocal folds, trunk, and legs. Most tremors occur in the hands. In some people, tremor is a symptom of another neurological disorder. A very common kind of tremor is the chattering of teeth, usually induced by cold temperatures or by fear.

This would seem to be a complete definition but the things I experience do not necessarily fit into this tight definition. I do experience hands shaking, sometimes lip quivering, and muscle twitches at times. The shaking I get that drives me bonkers is where it feels like the whole inside of my body is shaking and it may or may not show in my hands or other body area. It is quite frustrating and scary. It makes me stop whatever I am doing and have to try to lay down and rest to relax my body. It does not seem to be anxiety related either. It cans trike me at random and is puzzling and frightening. So, as I usually do, I thought I would research this out too.

Amazingly, I found not one shred of medical information regarding this, other than others who have had this experience. I usually find things on medical boards or places like medline or webmd but not in this instance. It made me wonder if any of you have had this happen to you too.

I know I saw quite a few others asking this same question as well. I know I am not alone in this. It just may take some time until more is known in the realm of medical professionals for me to find anything online.


Periphreal Neuropathy Treatment and Drugs

Part 8 in this series from the Mayo Clinic

Treatment and Drugs

Treatments and drugs

By Mayo Clinic staff

One goal of treatment is to manage the condition causing your neuropathy. If the underlying cause is corrected, the neuropathy often improves on its own. Another goal of treatment is to relieve the painful symptoms.

Medications
Many types of medications can be used to relieve the pain of peripheral neuropathy, including:

  • Pain relievers. Mild symptoms may be relieved by over-the-counter pain medications. For more-severe symptoms, your doctor may recommend prescription painkillers. Drugs containing opiates, such as codeine, can lead to dependence, constipation or sedation, so these drugs are generally prescribed only when other treatments fail.
  • Anti-seizure medications. Drugs such as gabapentin (Gralise, Neurontin), topiramate (Topamax), pregabalin (Lyrica), carbamazepine (Carbatrol, Tegretol) and phenytoin (Dilantin, Phenytek) were originally developed to treat epilepsy. However, doctors often also prescribe them for nerve pain. Side effects may include drowsiness and dizziness.
  • Capsaicin. A cream containing this naturally occurring substance found in hot peppers can cause modest improvements in peripheral neuropathy symptoms. Like spicy foods, it may take some time and gradual exposure to get used to because of the hot sensation this cream creates. Generally, you have to get used to the heat before you can experience pain relief. Doctors may suggest you use this cream with other treatments.
  • Lidocaine patch. This patch contains the topical anesthetic lidocaine. You apply it to the area where your pain is most severe, and you can use up to four patches a day to relieve pain. This treatment has almost no side effects except, for some people, a rash at the site of the patch.
  • Antidepressants. Tricyclic antidepressant medications, such as amitriptyline and nortriptyline (Aventyl, Pamelor), were originally developed to treat depression. However, they have been found to help relieve pain by interfering with chemical processes in your brain and spinal cord that cause you to feel pain. The serotonin and norepinephrine reuptake inhibitor duloxetine (Cymbalta) also has proved effective for peripheral neuropathy caused by diabetes. Side effects may include nausea, drowsiness, dizziness, decreased appetite and constipation.

Therapies
Transcutaneous electrical nerve stimulation (TENS) may help to relieve symptoms. In this therapy, adhesive electrodes are placed on the skin, and a gentle electric current is delivered through the electrodes at varying frequencies. TENS has to be applied regularly.


Periphreal Neuropathy Causes

Part 3 of the series on this subject from the Mayo Clinic website.

Causes

Causes

By Mayo Clinic staff

It’s not always easy to pinpoint the cause of peripheral neuropathy, because a number of factors can cause neuropathies. These factors include:

  • Alcoholism. Many alcoholics develop peripheral neuropathy because they make poor dietary choices, leading to vitamin deficiencies.
  • Autoimmune diseases. These include lupus, rheumatoid arthritis and Guillain-Barre syndrome.
  • Diabetes. When damage occurs to several nerves, the cause frequently is diabetes. At least half of all people with diabetes develop some type of neuropathy.
  • Exposure to poisons. These may include some toxic substances, such as heavy metals, and certain medications — especially those used to treat cancer (chemotherapy).
  • Infections. Certain viral or bacterial infections can cause peripheral neuropathy, including Lyme disease, shingles (varicella-zoster), Epstein-Barr, hepatitis C and HIV/AIDS.
  • Inherited disorders. Examples include Charcot-Marie-Tooth disease and amyloid polyneuropathy.
  • Trauma or pressure on the nerve. Traumas, such as motor vehicle accidents, falls or sports injuries, can sever or damage peripheral nerves. Nerve pressure can result from using a cast or crutches, spending a long time in an unnatural position or repeating a motion many times — such as typing.
  • Tumors. Growths can form directly on the nerves themselves, or tumors can exert pressure on surrounding nerves. Both cancerous (malignant) and noncancerous (benign) tumors can contribute to peripheral neuropathy.
  • Vitamin deficiencies. B vitamins — B-1, B-6 and B-12 — are particularly important to nerve health. Vitamin E and niacin also are crucial to nerve health.
  • Other diseases. Kidney disease, liver disease and an underactive thyroid (hypothyroidism) also can cause peripheral neuropathy.

Periphreal Neuropathy Definition

Well, in light of the progression of my neuropathy, I decided to check out more information. I went to the Mayo Clinic website and found this information. I have re-read the information in light of the new developments in my case. As with any portion of our lupus, or autoimmune journeys always talk to your doctor before starting any new treatments.

From Mayo Clinic website:

Periphreal Neuropathy

Definition

By Mayo Clinic staff

Peripheral neuropathy, a result of nerve damage, often causes numbness and pain in your hands and feet. People typically describe the pain of peripheral neuropathy as tingling or burning, while they may compare the loss of sensation to the feeling of wearing a thin stocking or glove.

Peripheral neuropathy can result from problems such as traumatic injuries, infections, metabolic problems and exposure to toxins. One of the most common causes is diabetes.

In many cases, peripheral neuropathy symptoms improve with time — especially if the condition is caused by an underlying condition that can be treated. A number of medications often are used to reduce the painful symptoms of peripheral neuropathy.

 


Guillain Barre Syndrome Overview

Well, I looked around and found this interesting fact sheet on GBS, or Guillain Barre Syndrome. It is a serious condition and can cause death pretty quickly in some cases. This information came from the website: guillainbarresyndrome.net. For further information, please consult your own doctor or go to the webpage listed above for more detailed information.

 

Guillain Barre Syndrome is a rare and severe disease. It occurs after an acute infectious procedure. Guillain Barre Syndrome initially affects the peripheral nervous system. Normally it is acute form of paralysis in lower body area that moves towards upper limb and face. Gradually patient loses all his reflexes and goes through a complete body paralysis. Guillain Barre Syndrome is a life threatening disorder and needs timely treatment and supportive care with intravenous immunoglobulins or plasmapheresis. Unfortunately many people lose their lives without proper and prompt medical treatment. Dysautonomia and Pulmonary complications are the basic reason for death other fatal complications.

Symptoms and Signs!

guillainbarresyndrome Guillain Barre SyndromeAlthough Guillain Barre Syndrome is a fatal and complicated disorder of peripheral nervous system, however there are many symptoms and signs that enable you to suspect the disease at beginning. Guillain Barre Syndrome is a result of antigens that weakened the immune system. These infectious antigens attack the nervous system and damage the nerves. This auto-immune infection turns the peripheral nerves in inflammation of conduction block and myelin. The primary result would be minor muscle paralysis. Though autonomic disturbances or sensory occurs on acute complications. The most severe and obvious complication of Serum sickness is Guillain Barre Syndrome (GBS). Guillain Barre Syndrome is type of auto-immune disorder by low hypersensitivity reaction. Nausea, vomiting, loss of appetite, stomach pain, migraines, low grade fevers and chills are quite apparent symptoms of GBS. The regular headaches and migraines are result of Central Nervous System Disorder. Constant exhaustion, tiredness and pain in the back of head are early signs of Guillain Barre Syndrome. The disease initially appears in lower limb and affects the muscle reflexes. Paralysis in lower limb and legs are commonly called rubbery legs or tingling and numbness in legs. Afterwards this syndrome travels in upper part of the limb. Generally in short span of time facial muscles and arms get affected and become completely paralyzed. Normally the lower cranial nerves get damaged and lead to bulbar weakness. It affects the swallowing and breathing resulting in constant drooling. In acute cases of Guillain Barre Syndrome patients complains of temporary Bladder dysfunction. The obvious indication of GBS is pain; it is quite similar to the aching that you get after over exercise or jogging.

Diagnosis!

Constant severe pain in muscles and mild fever are common symptoms of Guillain Barre Syndrome. Usually there are many other signs like orthostatic hypotension, hypertension and unusual fluctuations in blood pressure. Prompt medical procedure ensures fast recovery and fewer complications. However If you start the treatment at late or at complicated stage then chances of recovery are very low. Success of any Guillain Barre Syndrome Diagnosis depend upon the medical reports and findings like fast growing muscle paralysis, absence of fever, a possible pro-active incident and areflexia. Normally CSF and ECD are most common treatments used to confirm and cure the disease. Sometime these treatments failed to detect early symptoms of Guillain Barre Syndrome. Generally after a week or two patients recognize the signs and then report the syndrome. At the moment there is no effective cure for Guillain Barre Syndrome. Though there are many possible medical procedures to diagnose, that may help in reducing the fatal aspect of this severe disease.

CSF

CSF is commonly used and quite successful for the findings and evidences of Guillain Barre Syndrome. Average CSF findings contain information and details of albumino-cytological dissociation. Compared to infectious symptoms, CSF is a high level protein 100 – 1000 mg/dL instead of the supplementary pleocytosis. Continuous usage of the pleocytosis may boost the immune system to resist the infections. Research has proven that high quantity of protein and pleocytosis in the CSF is essential for the diffusion of white blood cells in the myelin. In early stages of Guillain Barre Syndrome anti-inflammatory drugs and painkillers combined to offer instant relief in severe pain. Often doctors suggest blood thinners to control and prevent blood clotting.


Antibodies Role in Neurological Symptoms of Lupus

A friend of mine posted this on facebook and I thought it was an interesting article so I am reposting it here as well. This information came from the web page http://www.prweb.com/releases/neurological_symptoms/lupus_sle/prweb4748694.htm

Feel free to share your thoughts on this article int he comments section below…

How Antibodies Play a Role in Triggering Neurological Symptoms of Lupus

Betty Diamond, MD, head of the Center for Autoimmune and Musculoskeletal Disorders at the Feinstein Institute, has collaborated with colleagues at the Burke Cornell Medical Research Institute to identify two distinct mechanisms that explain the how lupus autoantibodies alter brain function and led to such a wide array of neuropsychiatric complaints.

Quote startWe think we understand why some manifestations are transient and some are not.Quote end

Manhasset, NY (Vocus) November 5, 2010

Many patients with systemic lupus erythematosus (SLE) suffer from a variety of neuropsychiatric problems and scientists at the Feinstein Institute for Medical Research have been trying to understanding the mechanism that underlies these devastating problems. Now, Betty Diamond, MD, head of the Center for Autoimmune and Musculoskeletal Disorders at the Feinstein Institute, has collaborated with colleagues at the Burke Cornell Medical Research Institute to identify two distinct mechanisms that explain the how lupus autoantibodies alter brain function and led to such a wide array of neuropsychiatric complaints.

Patients with lupus, an autoimmune disease that targets many different organs of the body, including the brain, generate autoantibodies that frequently bind double-stranded DNA and cross react with specific glutamate receptors that are toxic to brain cells. The autoantibodies can mediate the cognitive and emotional problems (depression, memory problems and confusion) that are common among lupus patients.

Patricio Huerta, PhD, and Bruce T. Volpe, MD, of the Burke Research Institute have worked with the Diamond lab at the Feinstein to figure out what is going at the level of the neuron that could help explain why the symptoms are so varied. They report in the latest issue of PNAS that the anti-DNA antibody binds to open receptors and that the antibody to the glutamate NMDA receptor only targets activated neurons. At low concentrations, the antibodies augment (NMDA) excitatory post synaptic potentials and at high concentrations they alter mitochondria permeability and cause cell death. This could explain, said Dr. Diamond, why the severity of the symptoms differs from patient to patient.

“This finding helps explain why some cognitive problems are transient and some are permanent,” she said. “Low concentrations of antibody cause transient problems and high concentrations (that lead to cell death) cause life-long problems.”

While this part of the research was conducted in lab dishes, they also studied cerebrospinal fluid samples from lupus patients and found that the levels from low to high concentrations are associated with their symptoms. “We think we understand why some manifestations are transient and some are not,” said Dr. Diamond.

The scientists have worked with medicinal chemists at the Feinstein Institute on the development of drugs that block the antibody from binding to the NMDA receptor. There is now work underway in laboratory models to test whether these can prevent the devastating neuropsychiatric symptoms of lupus.

About The Feinstein Institute for Medical Research

Headquartered in Manhasset, NY, The Feinstein Institute for Medical Research is home to international scientific leaders in cancer, leukemia, lymphoma, Parkinson’s disease, Alzheimer’s disease, psychiatric disorders, substance abuse, rheumatoid arthritis, lupus, sepsis, inflammatory bowel disease, diabetes, human genetics, neuroimmunology, and medicinal chemistry. Feinstein researchers are developing new drugs and drug targets, and producing results where science meets the patient, annually enrolling some 10,000 subjects into clinical research programs.


Migraine medication Frova

This is one of the new meds my neurologist prescribed for me. I found this imformation on the webite, www.migraines.org. Many of us with lupus also suffer from migraines as well. I am not aware of anything linking the two specifically, but if you know of an article or study that has linked these two, feel free to let me know and I will post it here. Thanks and enjoy reading…

Drug Profiles:
FROVA
® (frovatriptan succinate tablets)

elan

CAUTION: Federal law prohibits dispensing without prescription.

What is Frova®?
Frova (frovatriptan) is an abortive medication used for the treatment of Migraine attacks in adults. It is one of the Triptan group of drugs which also includes Imitrex (sumatriptan), Amerge (naratriptan), Maxalt (rizatriptan), Zomig (zolmitriptan), and Axert (almotriptan).

   
Description
Frovatriptan (froe-va-TRIP-tan) is used to treat Migraine attacks. Many people find that their Migraine symptoms go away completely after they take frovatriptan. Other people find that their symptoms are reduced, and that they are able to go back to their normal activities even though their Migraines are not completely gone. Frovatriptan often relieves many symptoms that occur together with the pain of a Migraine, such as nausea, vomiting, sensitivity to light, and sensitivity to sound.

Frovatriptan is not an ordinary pain reliever. It will not relieve any kind of pain other than Migraine. This medicine is usually used for people whose Migraines are not relieved by acetaminophen, aspirin, or other pain relievers.

Frovatriptan may cause serious side effects in some people, especially people who have heart or blood vessel disease. Be sure that you discuss with your doctor the risks of using this medicine as well as the good that it can do.

Frovatriptan is available only with your doctor’s prescription.Before Using This Medicine
In deciding to use a medicine, the risks of taking the medicine must be weighed against the good it will do. This is a decision you and your doctor will make. For frovatriptan, the following should be considered:

Allergies-
Tell your doctor if you have ever had any unusual or allergic reaction to frovatriptan. Also tell your health care professional if you are allergic to any other substances, such as foods, preservatives, or dyes.

Pregnancy-
Frovatriptan has not been studied in pregnant women. However, in some animal studies, frovatriptan caused harmful effects to the fetus. These unwanted effects usually occurred when frovatriptan was given in amounts that were large enough to cause harmful effects in the mother.

Breast-feeding-
It is not known whether frovatriptan passes into human breast milk. Although most medicines pass into breast milk in small amounts, many of them may be used safely while breast-feeding. Mothers who are taking this medicine and who wish to breast-feed should discuss this with their doctor.

Children-
Studies on this medicine have been done only in patients 18 years of age and older, and there is no specific information comparing use of frovatriptan in children with use in other age groups.

Older adults-
Many medicines have not been studied specifically in older people. Therefore, it may not be known whether they work exactly the same way they do in younger adults. Although there is no specific information comparing use of frovatriptan in the elderly with use in other age groups, this medicine is not expected to cause different side effects or problems in older people than it does in younger adults.

Other medicines-
Although certain medicines should not be used together at all, in other cases two different medicines may be used together even if an interaction might occur. In these cases, your doctor may want to change the dose, or other precautions may be necessary.

Do not take frovatriptan if you have taken a monoamine oxidase inhibitor (MAOI) such as isocarboxazid (Marplan), tranylcypromine (Parnate), or phenelzine (Nardil) within the last 14 days. The combination could cause seizures, nausea, vomiting, sweating, flushing, and dizziness.

Do not take frovatriptan if you:

  • have taken an ergot-based medication within the last 24 hours–ergot-based medicines include methysergide (Sansert), ergotamine (Ergostat, Ergomar, others) dihydroergotamine (D.H.E. 45, Migranal Nasal Spray), and ergotamine combination products (Bellergal-S, Cafergot, Ercaf, Wigraine, Cafatine, Cafatine-PB, Cafetrate)
  • have taken another serotonin receptor agonist within the last 24 hours – these include frovatriptan (Frova), naratriptan (Amerge), rizatriptan (Maxalt, Maxalt-MLT), sumatriptan (Imitrex), and zolmitriptan (Zomig, Zomig-ZMT); or
  • have taken ketoconazole (Nizoral), itraconazole (Sporanox), ritonavir (Norvir), or erythromycin (E-Mycin, others) in the last 7 days.

Taking a serotonin receptor agonist with any of the medicines listed above may be dangerous.

Before taking frovatriptan, tell your doctor if you are taking a selective serotonin reuptake inhibitor (SSRI) such as citalopram (Celexa), fluoxetine (Prozac), fluvoxamine (Luvox), paroxetine (Paxil), or sertraline (Zoloft). You may not be able to take frovatriptan, or you may require a dosage adjustment or special monitoring during treatment if you are taking any of the medicines listed.

Drugs other than those listed here may also interact with frovatriptan. Talk to your doctor and pharmacist before taking any prescription or over-the-counter medicines, including herbal products.

Other medical problems-
The presence of other medical problems may affect the use of frovatriptan. Make sure you tell your doctor if you have any other medical problems, especially:

  • Uncontrolled high blood pressure—Use of frovatriptan may cause this condition to become worse.
  • Coronary artery disease
  • Heart attack (recent)
    Heart disease or Risk factors for coronary artery disease such as high cholesterol, family history, diabetes, obesity, women after menopause and men over 40 years of age—Use of frovatriptan may cause problems in patients with these risk factors.
  • Blood vessel disease, especially in the intestines and fingers—Use of frovatriptan may cause these conditions to become worse.
  • Bleeding in the brain or Stroke (or history of)—Use of frovatriptan may increase the chance of having a stroke

Proper Use of This Medicine
Do not use frovatriptan for an episode that is different from your usual Migraines

To relieve your Migraine as soon as possible, use frovatriptan as soon as the pain begins. Even if you get warning signals of a coming Migraine (an aura), you should wait until the pain starts before using frovatriptan. Using frovatriptan during the aura probably will not prevent the pain from occurring. However, even if you do not use frovatriptan until your Migraine has been present for several hours, the medicine will still work.

Lying down in a quiet, dark room for a while after you use this medicine may help relieve your Migraine.

If you feel much better after a dose of frovatriptan, but your Migraine comes back or gets worse after 2 or more hours, you may use one additional dose of frovatriptan

Your doctor may direct you to take another medicine to help prevent Migraines. It is important that you follow your doctor’s directions, even if your Migraines continue to occur. Migraine-preventing medicines may take several weeks to start working. Even after they do start working, your Migraines may not go away completely. However, your Migraines should occur less often, and they should be less severe and easier to relieve. This can reduce the amount of frovatriptan or pain relievers that you need. If you do not notice any improvement after several weeks of Migraine-preventing treatment, check with your doctor.

Dosing-
The dose of frovatriptan will be different for different patients. Follow your doctor’s orders or the directions on the label. The following information includes only the average doses of frovatriptan. If your dose is different, do not change it unless your doctor tells you to do so.

  • Adults—Take one tablet (2.5 mg (milligrams) anytime after the start of your migraine headache. You may take a second tablet if your headache comes back after relief from the 1st dose. You should wait at least 2 hours between doses. Do not take more than 3 tablets in a 24 hour period. 
  • Children—Use and dose must be determined by your doctor.

Storage-
To store this medicine:

  • Keep out of the reach of children since overdose is especially dangerous in children.
  • Store away from heat and direct light.
  • Do not store in the bathroom, near the kitchen sink, or in other damp places. Heat or moisture may cause the medicine to break down.
  • Do not keep outdated medicine or medicine no longer needed. Be sure that any discarded medicine is out of the reach of children.

Precautions While Using This Medicine
Drinking alcoholic beverages can make Migraines worse or cause new Migraines to occur. People who suffer from severe Migraines should probably avoid alcoholic beverages, especially during an attack.

Some people feel drowsy or dizzy during or after a Migraine, or after taking frovatriptan to relieve a Migraine. As long as you are feeling drowsy or dizzy, do not drive, use machines, or do anything else that could be dangerous if you are dizzy or are not alert.

Side Effects of This Medicine
Along with its needed effects, a medicine may cause some unwanted effects. Although not all of these side effects may occur, if they do occur they may need medical attention.

Check with your doctor immediately if any of the following side effects occur:

  • Less common: Chest pain

Other side effects may occur that usually do not need medical attention. Some of these effects, such as nausea, vomiting, drowsiness, dizziness, and general feeling of illness or tiredness, often occur during or after a Migraine, even when frovatriptan has not been used. Most of the side effects caused by frovatriptan go away within a short time (less than 2 hours). However, check with your doctor if these side effects continue or are bothersome.

  • More common: dizziness 
  • Less common: Acid or sour stomach, belching, heartburn, indigestion, stomach discomfort, upset or pain; dry mouth; fatigue, such as unusual tiredness or weakness; flushing, such as feeling of warmth, redness of the face, neck, arms and occasionally upper chest; headache; hot or cold sensation; nausea; skeletal pain, such as pain in bones; tingling, burning, or prickly sensations; sleepiness or unusual drowsiness. 

Other side effects not listed above may also occur in some patients. If you notice any other effects, check with your doctor.


10.01.2010 neuro visit

Today I went to see my neurologist for a re check and other issues. He is a relatively new doctor on my list, so I am still seeing how he reacts to me. I have been pleasantly surprised so far that he is not only very personable but knows his stuff too. He also has passed my test for researching my issues and passed with flying colors.

On to the visit.  We discussed the periphreal neuropathy in my feet and hands and it was decided that I should start upping my dosage of neurontin as slowly as I feel comfortable doing it. My feet are also turning purple (as I have discussed before on here) and so he checked them and said I have slow capillary refill so he is ordering a vascular study of my legs and feet. I also need to have new bloodwork (oh yippee).

Now onto the migraine situation. I am on midrin, an older migraine medication that treats the headache when it occurs. I have taken it for years now to help with these awful migraines. It has done the job pretty well, although I have breakthrough pain at times. After discussing this, my neurologist suggested we try topomax instead. He said that it helps to prevent them from starting and that we should see how it works. It also has a quality similar to neurontin but in smaller quantity for the neuropathy as well so it would help a little in thaat department as well. I do have to watch for kidney stones, since I am prone to them and this medication can cause them. I know how they feel so I hope to keep the stones at bay.

If anyone out there has used topomax, please let me know how it works for you. I am always curious to find out from others how a medication helps them. Since this is a new one for me, I will be interested in hearing from anyone on it.

Now, I am off to the campground for a night or two to digest this latest development in my care and research it as well. I am sure I will be posting the results here. In the meantime, thanks for all the support I get from you all. It really does help me to cope with all the manifestations of the wolf.


Social Networking for the chronically ill

I found this article fromt he NY times and thought it relevant so enjoy!

Social Networks a Lifeline for the Chronically Ill

By CLAIRE CAIN MILLER Published: March 24, 2010 

A former model who is now chronically ill and struggles just to shower says the people she has met online have become her family. A quadriplegic man uses the Web to share tips on which places have the best wheelchair access, and a woman with multiple sclerosis says her regular Friday night online chats are her lifeline. 

 Amy Tenderich, who has diabetes, writes a blog and manages the social network Diabetic Connect from home in Millbrae, Calif.

For many people, social networks are a place for idle chatter about what they made for dinner or sharing cute pictures of their pets. But for people living with chronic diseases or disabilities, they play a more vital role. “It’s really literally saved my life, just to be able to connect with other people,” said Sean Fogerty, 50, who has multiple sclerosis, is recovering from brain cancer and spends an hour and a half each night talking with other patients online.

People fighting chronic illnesses are less likely than others to have Internet access, but once online they are more likely to blog or participate in online discussions about health problems, according to a report released Wednesday by the Pew Internet and American Life Project and the California HealthCare Foundation. “If they can break free from the anchors holding them down, people living with chronic disease who go online are finding resources that are more useful than the rest of the population,” said Susannah Fox, associate director of digital strategy at Pew and author of the report. They are gathering on big patient networking sites like PatientsLikeMe, HealthCentral, Inspire, CureTogether and Alliance Health Networks, and on small sites started by patients on networks like Ning and Wetpaint.

Sherri Connell, 46, modeled and performed in musicals until, at age 27, she learned she had multiple sclerosis and Lyme disease. She began posting her journal entries online for friends and family to read. Soon, people from all over the world were reading her Web site and telling her they had similar health problems. In 2008, she and her husband started a social network using Ning called My Invisible Disabilities Community. It now has 2,300 members who write about living with lupus, forthcoming operations or medical bills, for example.

“People have good and bad days, and they don’t know a good day’s going to come Wednesday at 5 o’clock when a live support group is meeting,” Ms. Connell said. “The Internet is a great outlet for people to be honest.” Not surprisingly, according to Pew, Internet users with chronic illnesses are more likely than healthy people to use the Web to look for information on specific diseases, drugs, health insurance, alternative or experimental treatments and depression, anxiety or stress. But for them, the social aspects of the Web take on heightened importance. Particularly if they are homebound, they also look to the Web for their social lives, discussing topics unrelated to their illnesses. Some schedule times to eat dinner or watch a movie while chatting online.

John Linna, a pastor in Neenah, Wis., did not know what a blog was when his son suggested he start one after discovering he needed to stay home on a ventilator. “That day my little world began to expand,” he wrote in a post last year about blogging. “Soon I had a little neighborhood. It was like stopping in for coffee every day just to see how things were going.” When Mr. Linna died earlier this year, people all over the Web who had never met him in person mourned the loss.

Others use the Web to find practical tips about living with their disease or disability that doctors and family members, having not lived with it themselves, cannot provide. On Diabetic Connect, a diabetes social network with 140,000 members, people share recipes like low-sugar banana pudding, review products like an insulin pump belt and have discussions like a recent one started by a patient with a new diagnosis. “I don’t like to talk to my family and friends about this,” she wrote. “Honestly I feel helpless. I really just need some advice and people to talk to who might have been experiencing the same things.”

Amy Tenderich is the community manager for Diabetic Connect and writes a blog called Diabetes Mine. “There’s no doctor in the world, unless they’ve actually lived with this thing, that can get into that nitty-gritty,” she said. “I’ve walked away from dinner parties with tears in my eyes because people just don’t understand.”

Patients often use social networks to interact with people without worrying about the stigma of physical disabilities, said Susan Smedema, an assistant professor of rehabilitation counseling at Florida State University who studies the psychosocial aspects of disability. From her home in Maine, Susan Fultz plays online games at Pogo.com and commiserates with people who are frustrated that they do not have a diagnosis for their symptoms. “There’s no worry of being judged or criticized, and that is something that I know a lot of us don’t get in our daily lives,” said Ms. Fultz, who has Lyme disease and psoriatic arthritis.

Those with chronic diseases or disabilities, like all Internet users, have to be wary about sharing private health information online, particularly with anonymous users. Research has also shown that emotions can be contagious, said Paul Albert, digital services librarian at Weill Cornell Medical Library in New York who has researched how social networks meet the needs of patients with chronic diseases. “If you hang out on a message board where people are very negative, you can easily adopt a negative attitude about your disease,” he said. “On the other hand, if people are hopeful, you might be better off.”

Some people also worry that patients might exchange erroneous medical information on the Web, he said. Yet most patient social networks make clear that the information on the site should not substitute for medical advice, and the Pew study found that just 2 percent of adults living with chronic diseases report being harmed by following medical advice found on the Internet. Instead, the sites are used to share information from the front lines, said Lily Vadakin, 45, who has multiple sclerosis and works as a site administrator for Disaboom, a social network for people with disabilities.

For instance, she has discussed with other patients how to combat fatigue by working at home and taking vitamin supplements. “That’s what the community can give you — a real-life perspective,” she said.

A version of this article appeared in print on March 25, 2010, on page B3 of the New York edition.


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