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topomax and hair loss
Hi---I am 37, a faculty member, living well. I was diagnosed with a seizure disorder at 17 after being found unconscious in the front yard one early morning. EEG showed temporal lobe abnormality. Non intrusive absences followed as I was placed on tegretol. Meds were regulated and I remained on tegretol alone for all these years....until 12 months ago. I moved and began seeing a new neurologist and was going through IVF therapy. I began on topomax, which was a very rough ride. Many vision difficulties and a great deal of language loss for 4 months. As I titrated up to 200mgs per day (6 month process), I noticed my hair thinning---and after the 6 month period, it really began dropping out in masses each morning in shower. I have lost over half of my hair. I made no connection to the topomax until 4 weeks ago when it struck me to check out the drug. There are many listervs with migraine sufferers and epileptics mourning hair loss and topomax---and their neurologists' denial of the relationship. I located a PDR, and it does list alopecia as a "less common side effect". I decided to pursue expert neurologists at a research university 3 hours away from me for help---and a medication switch. They denied my hair loss could be due to the topomax, flatly, and recommended I use Head and Shoulders. I was dumbfounded that they were denying this was an empirically researched side-effect that I was experiencing. At this point I feel completely hopeless. Others on the internet report the loss does not cease. The cuticle is altered and weakened and remains months after the medicine is changed.
Can you affirm my diagnosis? Can the PDR be wrong? What would you do? Keep hunting for a neurologist that will help me? I feel very powerless. It is ironic that my area of research is patient-physician communication.
Help my hair----
Thanks for anything you might have to offer.......
Sunflower
Can you affirm my diagnosis? Can the PDR be wrong? What would you do? Keep hunting for a neurologist that will help me? I feel very powerless. It is ironic that my area of research is patient-physician communication.
Help my hair----
Thanks for anything you might have to offer.......
Sunflower
Hi ladies. To all of you who have experienced hair loss during and after taking topamax, please do yourself a favor and have a doctor run a blood test on your ferritin iron level. Not your regular iron which shows anemia, but your FERRITIN iron. I posted as Ali_gator a few weeks back and had lost an incredible amount of hair after using topamax. Quitting the drug didn't stop the hair loss. Demanding to know my ferritin level and finding out it was 7 did help. My doctor put me on a substantial amount of a blood builder containing iron, coppper, folate,B12 and iodine. I don't know if it will help everyone but the first day I took the supplement, I took 5 doses and the next morning when I woke up and brushed my hair, less than HALF of what had been coming out did. I thought maybe it was a fluke, but 2 weeks later my hair loss is approaching a normal amount. I am exstatic and wanted to share this with other people in the hopes it will help them find their path to restoring their hair and their confidence. Good luck to all and God Bless. Ali
Some doctors...you just can't tell them anything! They think they know everything and don't even bother to do the 20 seconds of research required to look up side effects.
Always talk to the pharmacist! They are the real drug experts and will look up side effects for you.
Also, take your research TO the doctor and show him/her what you have discovered. To this, the know-it-all doctor will immediately criticize the source of the research without actually looking to see what the source is. This is where you have to show the doctor that you found your research from the foremost expert/source available.
A particularly hard headed doctor will still get very defensive and irritated at the suggestion that they just may, god forbid, have been mistaken. At this point it is time to get a new doctor.
Obviously, I've been though this a couple times.
Always talk to the pharmacist! They are the real drug experts and will look up side effects for you.
Also, take your research TO the doctor and show him/her what you have discovered. To this, the know-it-all doctor will immediately criticize the source of the research without actually looking to see what the source is. This is where you have to show the doctor that you found your research from the foremost expert/source available.
A particularly hard headed doctor will still get very defensive and irritated at the suggestion that they just may, god forbid, have been mistaken. At this point it is time to get a new doctor.
Obviously, I've been though this a couple times.
Hello. I too was taking Topamax for a disorder and noticed hair loss at 100mg starting after 4 months of use. The hair loss became so bad 6 months after starting on Topa that I discontiued use of it and went off the medication. However, my hair is still falling out everywhere. My sleeves, arms, neck the floor. It is horribly embarrasing and hasn't slowed down after 6 weeks of being Topamax free. How long were you off of the medicine before your hair stopped falling out? How long before it started growing back? Before starting Topamax I had grown my hair to my rear end and the donated 15 inches of it to Locks For Love. Now it looks like I might need someone to donate hair for a wig for me as if this keeps up I will soon be bald. Already lost about half the thickness of my hair. Please help with time frames to look for improvement. Thanks in advance for any help or answers.
MEDICAL PROFESSIONAL
Hi sunflower200,
I am so sorry that you were frustrated and would not get an answer from your physician regarding topamax and hair loss. Topamax was reported to associate with alopecia about 2% of the time. I would recommend to discontinue topamax. However, before you do so, please go to your neurologist/epileptologist and ask for an alternative seizure medication. For further treatment of medication induced alopecia, please consult a dermatologist. I listed below the published known adverse reaction of topamax.
ADVERSE REACTIONS SIGNIFICANT — Adverse events are reported for placebo-controlled trials of adjunctive therapy in adult and pediatric patients. Unless otherwise noted, the percentages refer to incidence in epilepsy trials. Note: A wide range of dosages were studied; incidence of adverse events was frequently lower in the pediatric population studied.
>10%:
Central nervous system: Dizziness (4% to 32%), ataxia (6% to 16%), somnolence (15% to 29%), psychomotor slowing (3% to 21%), nervousness (9% to 19%), memory difficulties (2% to 14%), speech problems (2% to 13%), fatigue (9% to 30%), difficulty concentrating (5% to 14%), depression (9% to 13%), confusion (4% to 14%)
Endocrine & metabolic: Serum bicarbonate decreased (dose-related: 7% to 67%; marked reductions [to <17 mEq/L] 1% to 11%)
Gastrointestinal: Nausea (6% to 12%; migraine trial: 14%), weight loss (8% to 13%), anorexia (4% to 24%)
Neuromuscular & skeletal: Paresthesia (1% to 19%; migraine trial: 35% to 51%)
Ocular: Nystagmus (10% to 11%), abnormal vision (<1% to 13%)
Respiratory: Upper respiratory infection (migraine trial: 12% to 13%)
Miscellaneous: Injury (6% to 14%)
1% to 10%:
Cardiovascular: Chest pain (2% to 4%), edema (1% to 2%), bradycardia (1%), pallor (up to 1%), hypertension (1% to 2%)
Central nervous system: Abnormal coordination (4%), hypoesthesia (1% to 2%; migraine trial: 8%), convulsions (1%), depersonalization (1% to 2%), apathy (1% to 3%), cognitive problems (3%), emotional lability (3%), agitation (3%), aggressive reactions (2% to 9%), tremor (3% to 9%), stupor (1% to 2%), mood problems (4% to 9%), anxiety (2% to 10%), insomnia (4% to 8%), neurosis (1%), vertigo (1% to 2%)
Dermatologic: Pruritus (migraine trial: 2% to 4%), skin disorder (1% to 3%), alopecia (2%), dermatitis (up to 2%), hypertrichosis (up to 2%), rash erythematous (up to 2%), eczema (up to 1%), seborrhea (up to 1%), skin discoloration (up to 1%)
Endocrine & metabolic: Hot flashes (1% to 2%); metabolic acidosis (hyperchloremia, nonanion gap), dehydration, breast pain (up to 4%), menstrual irregularities (1% to 2%), hypoglycemia (1%), libido decreased (<1% to 2%)
Gastrointestinal: Dyspepsia (2% to 7%), abdominal pain (5% to 7%), constipation (3% to 5%), xerostomia (2% to 4%), fecal incontinence (1%), gingivitis (1%), diarrhea (2%; migraine trial: 11%), vomiting (1% to 3%), gastroenteritis (1% to 3%), appetite increased (1%), GI disorder (1%), (2% to 4%; migraine trial: 12% to 15%), dysphagia (1%), flatulence (1%), GERD (1%), glossitis (1%), gum hyperplasia (1%), weight increase (1%)
Genitourinary: Impotence, dysuria/incontinence (<1% to 4%), prostatic disorder (2%), UTI (2% to 3%), premature ejaculation (migraine trial: 3%), cystitis (2%)
Hematologic: Leukopenia (1% to 2%), purpura (8%), hematoma (1%), prothrombin time increased (1%), thrombocytopenia (1%)
Neuromuscular & skeletal: Myalgia (2%), weakness (3% to 6%), back pain (1% to 5%), leg pain (2% to 4%), rigors (1%), hypertonia, arthralgia (1% to 7%), gait abnormal (2% to 8%), involuntary muscle contractions (2%; migraine trial: 4%), skeletal pain (1%), hyperkinesia (up to 5%), hyporeflexia (up to 2%)
Ocular: Conjunctivitis (1%), diplopia (2% to 10%), myopia (up to 1%)
Otic: Hearing decreased (1% to 2%), tinnitus (1% to 2%), otitis media (migraine trial: 1% to 2%)
Renal: Nephrolithiasis, renal calculus (1% to 2%), hematuria (<1% to 2%)
Respiratory: Pharyngitis (3% to 6%), sinusitis (4% to 6%; migraine trial: 8% to 10%), epistaxis (1% to 4%), rhinitis (4% to 7%), dyspnea (1% to 2%), pneumonia (5%), coughing (migraine trial: 2% to 3%), bronchitis (migraine trial: 3%)
Miscellaneous: Flu-like syndrome (3% to 7%), allergy (2% to 3%), body odor (up to 1%), fever (migraine trial: 1% to 2%), viral infection (migraine trial: 3% to 4%), infection (<1% to 2%), diaphoresis (1%), thirst (2%)
<1% (Limited to important or life-threatening): Accommodation abnormality, anemia, angina, apraxia, AV block, bone marrow depression, deep vein thrombosis, dehydration, delirium, diabetes mellitus, dyskinesia, electrolyte imbalance, encephalopathy (with valproate therapy), eosinophilia, erythema multiforme, euphoria, eye pain, granulocytopenia, hepatic failure, hepatitis, hyperammonemia (with valproate therapy), hyperthermia (severe), hypokalemia, hypotension, liver enzymes increased, lymphadenopathy, lymphopenia, manic reaction, migraine aggravated, neuropathy, oligohydrosis, pancreatitis, pancytopenia, paranoid reaction, pemphigus, photosensitivity, psychosis, pulmonary embolism, rash, renal tubular acidosis, Stevens-Johnson syndrome, suicidal behavior, syncope, syndrome of acute myopia/secondary angle-closure glaucoma, tongue edema, toxic epidermal necrolysis
Thank you for using MedHelp forum.
THIS INFORMATION IS PROVIDED FOR GENERAL MEDICAL EDUCATION PURPOSE ONLY. PLEASE CONTACT YOUR PHYSICIAN FOR DIAGNOSTIC AND TREATMENT OPTIONS OF YOUR SPECIFIC MEDICAL CONDITIONS.
I am so sorry that you were frustrated and would not get an answer from your physician regarding topamax and hair loss. Topamax was reported to associate with alopecia about 2% of the time. I would recommend to discontinue topamax. However, before you do so, please go to your neurologist/epileptologist and ask for an alternative seizure medication. For further treatment of medication induced alopecia, please consult a dermatologist. I listed below the published known adverse reaction of topamax.
ADVERSE REACTIONS SIGNIFICANT — Adverse events are reported for placebo-controlled trials of adjunctive therapy in adult and pediatric patients. Unless otherwise noted, the percentages refer to incidence in epilepsy trials. Note: A wide range of dosages were studied; incidence of adverse events was frequently lower in the pediatric population studied.
>10%:
Central nervous system: Dizziness (4% to 32%), ataxia (6% to 16%), somnolence (15% to 29%), psychomotor slowing (3% to 21%), nervousness (9% to 19%), memory difficulties (2% to 14%), speech problems (2% to 13%), fatigue (9% to 30%), difficulty concentrating (5% to 14%), depression (9% to 13%), confusion (4% to 14%)
Endocrine & metabolic: Serum bicarbonate decreased (dose-related: 7% to 67%; marked reductions [to <17 mEq/L] 1% to 11%)
Gastrointestinal: Nausea (6% to 12%; migraine trial: 14%), weight loss (8% to 13%), anorexia (4% to 24%)
Neuromuscular & skeletal: Paresthesia (1% to 19%; migraine trial: 35% to 51%)
Ocular: Nystagmus (10% to 11%), abnormal vision (<1% to 13%)
Respiratory: Upper respiratory infection (migraine trial: 12% to 13%)
Miscellaneous: Injury (6% to 14%)
1% to 10%:
Cardiovascular: Chest pain (2% to 4%), edema (1% to 2%), bradycardia (1%), pallor (up to 1%), hypertension (1% to 2%)
Central nervous system: Abnormal coordination (4%), hypoesthesia (1% to 2%; migraine trial: 8%), convulsions (1%), depersonalization (1% to 2%), apathy (1% to 3%), cognitive problems (3%), emotional lability (3%), agitation (3%), aggressive reactions (2% to 9%), tremor (3% to 9%), stupor (1% to 2%), mood problems (4% to 9%), anxiety (2% to 10%), insomnia (4% to 8%), neurosis (1%), vertigo (1% to 2%)
Dermatologic: Pruritus (migraine trial: 2% to 4%), skin disorder (1% to 3%), alopecia (2%), dermatitis (up to 2%), hypertrichosis (up to 2%), rash erythematous (up to 2%), eczema (up to 1%), seborrhea (up to 1%), skin discoloration (up to 1%)
Endocrine & metabolic: Hot flashes (1% to 2%); metabolic acidosis (hyperchloremia, nonanion gap), dehydration, breast pain (up to 4%), menstrual irregularities (1% to 2%), hypoglycemia (1%), libido decreased (<1% to 2%)
Gastrointestinal: Dyspepsia (2% to 7%), abdominal pain (5% to 7%), constipation (3% to 5%), xerostomia (2% to 4%), fecal incontinence (1%), gingivitis (1%), diarrhea (2%; migraine trial: 11%), vomiting (1% to 3%), gastroenteritis (1% to 3%), appetite increased (1%), GI disorder (1%), (2% to 4%; migraine trial: 12% to 15%), dysphagia (1%), flatulence (1%), GERD (1%), glossitis (1%), gum hyperplasia (1%), weight increase (1%)
Genitourinary: Impotence, dysuria/incontinence (<1% to 4%), prostatic disorder (2%), UTI (2% to 3%), premature ejaculation (migraine trial: 3%), cystitis (2%)
Hematologic: Leukopenia (1% to 2%), purpura (8%), hematoma (1%), prothrombin time increased (1%), thrombocytopenia (1%)
Neuromuscular & skeletal: Myalgia (2%), weakness (3% to 6%), back pain (1% to 5%), leg pain (2% to 4%), rigors (1%), hypertonia, arthralgia (1% to 7%), gait abnormal (2% to 8%), involuntary muscle contractions (2%; migraine trial: 4%), skeletal pain (1%), hyperkinesia (up to 5%), hyporeflexia (up to 2%)
Ocular: Conjunctivitis (1%), diplopia (2% to 10%), myopia (up to 1%)
Otic: Hearing decreased (1% to 2%), tinnitus (1% to 2%), otitis media (migraine trial: 1% to 2%)
Renal: Nephrolithiasis, renal calculus (1% to 2%), hematuria (<1% to 2%)
Respiratory: Pharyngitis (3% to 6%), sinusitis (4% to 6%; migraine trial: 8% to 10%), epistaxis (1% to 4%), rhinitis (4% to 7%), dyspnea (1% to 2%), pneumonia (5%), coughing (migraine trial: 2% to 3%), bronchitis (migraine trial: 3%)
Miscellaneous: Flu-like syndrome (3% to 7%), allergy (2% to 3%), body odor (up to 1%), fever (migraine trial: 1% to 2%), viral infection (migraine trial: 3% to 4%), infection (<1% to 2%), diaphoresis (1%), thirst (2%)
<1% (Limited to important or life-threatening): Accommodation abnormality, anemia, angina, apraxia, AV block, bone marrow depression, deep vein thrombosis, dehydration, delirium, diabetes mellitus, dyskinesia, electrolyte imbalance, encephalopathy (with valproate therapy), eosinophilia, erythema multiforme, euphoria, eye pain, granulocytopenia, hepatic failure, hepatitis, hyperammonemia (with valproate therapy), hyperthermia (severe), hypokalemia, hypotension, liver enzymes increased, lymphadenopathy, lymphopenia, manic reaction, migraine aggravated, neuropathy, oligohydrosis, pancreatitis, pancytopenia, paranoid reaction, pemphigus, photosensitivity, psychosis, pulmonary embolism, rash, renal tubular acidosis, Stevens-Johnson syndrome, suicidal behavior, syncope, syndrome of acute myopia/secondary angle-closure glaucoma, tongue edema, toxic epidermal necrolysis
Thank you for using MedHelp forum.
THIS INFORMATION IS PROVIDED FOR GENERAL MEDICAL EDUCATION PURPOSE ONLY. PLEASE CONTACT YOUR PHYSICIAN FOR DIAGNOSTIC AND TREATMENT OPTIONS OF YOUR SPECIFIC MEDICAL CONDITIONS.
EC---Your name describes you so well. All of your words were like salve on a deep wound. I still have no medical community or solution for this vanity crisis in my health life, but I continue to work on it. Appointment wait times, recovering from doctors who essentially scoff, and travel to offices that are three and four hours from my home do create challenges in seeking help. But I am doing it. This is my only option.
Your words, ideas, and advice are invaluable.
S
Your words, ideas, and advice are invaluable.
S
*Soft warm smile* First take a breath hon. And please know you are not alone. Previously, I too was taking Topomax. And like you, I began to notice hair loss. Large clumps would come out when I brushed my hair or washed it. It kept getting thinner and thinner. After several months of this it dawned on me that maybe it was the medication. This was after I had already resorted to going to a dermatologist to no avail and changing shampoo and such. Like you, I researched the side effects and found that yes, it was indeed one.
By this time, I had moved and was now under the care of a new Neurologist who was thankfully a doctor who listened to *me* and understood that *I* know my body better than anyone else does. When I explained what had been happening over the period of months and what I'd already tried, he was very open to change my medication especially when I had brought my research results with me to my appointment and of course he could see how thin my hair was.
I am now taking Zonegran. Please understand my diagnosis is different than yours. I have Idiopathic Intracranial Hypertension aka Pseudo Tumor Cerebri. The Topomax did help my decrease my headaches, but it didn't stop them. The Zonegran seems to be working much, much better.
It's taken a great deal of time for me to be able to get my hair back to a healthy state. But please know it is possible and can happen. It did for me. My hair is just now becoming somewhat thick like it used to be.
To answer your question. YES! Keep hunting for a Neurologist that will help you! *You* know your own body better than any one else possibly can. The doctor you choose to go to should always *LISTEN* to what you have to say as you have a great deal to do with your own care. Not only that, but doctors are supposed to take care of their patients and do what's best for them at all times. Be persistant! Stick up for yourself! Don't give up! There is help out there.
I have no idea if the medication Zonegran is an acceptable replacement for you or not. Your Neurologist should know and be able to give you other alternatives as well. But for *your* sake, yes, yes, yes...keep on researching! Continue to take care of yourself and monitor your care! Sometimes we can surprise the doctors themselves. *Wink*
Best of luck to you hon!
-enchanted soul
By this time, I had moved and was now under the care of a new Neurologist who was thankfully a doctor who listened to *me* and understood that *I* know my body better than anyone else does. When I explained what had been happening over the period of months and what I'd already tried, he was very open to change my medication especially when I had brought my research results with me to my appointment and of course he could see how thin my hair was.
I am now taking Zonegran. Please understand my diagnosis is different than yours. I have Idiopathic Intracranial Hypertension aka Pseudo Tumor Cerebri. The Topomax did help my decrease my headaches, but it didn't stop them. The Zonegran seems to be working much, much better.
It's taken a great deal of time for me to be able to get my hair back to a healthy state. But please know it is possible and can happen. It did for me. My hair is just now becoming somewhat thick like it used to be.
To answer your question. YES! Keep hunting for a Neurologist that will help you! *You* know your own body better than any one else possibly can. The doctor you choose to go to should always *LISTEN* to what you have to say as you have a great deal to do with your own care. Not only that, but doctors are supposed to take care of their patients and do what's best for them at all times. Be persistant! Stick up for yourself! Don't give up! There is help out there.
I have no idea if the medication Zonegran is an acceptable replacement for you or not. Your Neurologist should know and be able to give you other alternatives as well. But for *your* sake, yes, yes, yes...keep on researching! Continue to take care of yourself and monitor your care! Sometimes we can surprise the doctors themselves. *Wink*
Best of luck to you hon!
-enchanted soul
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