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Topamax And Hair Loss


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#1 jcj

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Posted 17 October 2008 - 08:31 AM

Unless I'm blind or stupid, I can't find a thread that speaks to hair loss. I know it's a common side effect, but what I want to know one thing: if and when I stop the med, will my hair come back?

Funny, the word-finding difficulties, the cognitive difficulties, the taxing of major organs systems this med does has on my body has not bothered me nearly as much as this hair loss.

I have been house bound due to MAV for two years. I'm taking four preventatives and just now am starting to feel human again, starting to leave the house and now this. I don't go anywhere without a baseball cap on. Soon people will think I'm a cancer patient.

Anyway, back to the question: will it come back if i were to stop the med?

thanks guys.
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#2 Anna

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Posted 17 October 2008 - 01:02 PM

Unless I'm blind or stupid, I can't find a thread that speaks to hair loss. I know it's a common side effect, but what I want to know one thing: if and when I stop the med, will my hair come back?

Funny, the word-finding difficulties, the cognitive difficulties, the taxing of major organs systems this med does has on my body has not bothered me nearly as much as this hair loss.

I have been house bound due to MAV for two years. I'm taking four preventatives and just now am starting to feel human again, starting to leave the house and now this. I don't go anywhere without a baseball cap on. Soon people will think I'm a cancer patient.

Anyway, back to the question: will it come back if i were to stop the med?

thanks guys.


Hair loss due to meds is completely reversible upon stopping the med, I think. It might take a while for your hair to regrow. I had hair loss on trileptal and my hair is already thicker at 2 months off it.

Have you asked your doc about any supplements or things you could try to reverse the loss and still stay on the med?

Anna
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#3 jcj

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Posted 17 October 2008 - 01:49 PM

Thanks Anna,

I'll be speaking to him in a month and I will ask him, but he's truly a savant. he's a super-specialist who knows little outside of how to treat MAV. I doubt I'll get much info regarding this from him. But I'll try.

I've talked to one person on my MAV forum who she still has a Topamax-induced bald spot, which worries me.

I would love to hear from others

Thanks again, Anna!

jcj
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#4 Jerod Poore

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Posted 18 October 2008 - 07:31 AM

I've talked to one person on my MAV forum who she still has a Topamax-induced bald spot, which worries me.


The action of losing hair stops when you stop taking Topamax.

But it's not like anything will necessarily reverse once you stop. Any bald spots that form could still remain. Whatever cosmetic treatments one might try should work when not taking a med that causes hair loss.
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#5 In_Remission_OnTheBrink

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Posted 18 October 2008 - 07:48 AM

I lost nearly 40% of my hair while taking Lamictal and Trileptal in huge bald spots. Even after I stopped the meds my hair continued to fall out. I went to a dermatologist and rheumatologist who concluded that the medications triggered an autoimmune response - hair loss. I was prescribed a tapering schedule of prednisone which worked great!
Within the first few days of the pred. my hair completely stopped falling out... and within 2 weeks new growth could be seen. The Bad news is that once the tapering of prednisone ended, my hair began falling out again!!! i did the 8 week tapering schedule 3 separate times, and each time it ended, my hair began to fall out again. soooo i'm on 20mg of prednisone now for long term maintanence-- eventually i will taper off it again. The prednisone at 20mg has not caused weight gain or the "moon" face and my hair is growing in great.

#6 Jerod Poore

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Posted 18 October 2008 - 08:00 AM

I lost nearly 40% of my hair while taking Lamictal and Trileptal in huge bald spots. Even after I stopped the meds my hair continued to fall out. I went to a dermatologist and rheumatologist who concluded that the medications triggered an autoimmune response - hair loss. I was prescribed a tapering schedule of prednisone which worked great!
Within the first few days of the pred. my hair completely stopped falling out... and within 2 weeks new growth could be seen. The Bad news is that once the tapering of prednisone ended, my hair began falling out again!!! i did the 8 week tapering schedule 3 separate times, and each time it ended, my hair began to fall out again.


Welcome to Crazy Meds: home of outliers of all stripes!

That is one freaky rare side effect. Autoimmune alopecia. This is true alopecia, right? That 40% wasn't just on your head was it?
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Current meds: lamotrigine 200mg, topiramate 400mg, buspirone 30mg, protriptyline 20mg, EPA 600mg, Aspirin 162 mg, lorazepam 1mg PRN
Past meds (likely incomplete): Abilify, clonazepam, desipramine, diazepam, Gabitril, lithium, methylphenidate, Neurontin, Paxil, prochlorperazine, Provigil, Prozac, Risperdal, Seroquel, Serzone, Strattera, Trileptal, Zyprexa

#7 Mrs. Singer

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Posted 18 October 2008 - 08:01 AM

I lost nearly 40% of my hair while taking Lamictal and Trileptal in huge bald spots. Even after I stopped the meds my hair continued to fall out. I went to a dermatologist and rheumatologist who concluded that the medications triggered an autoimmune response - hair loss. I was prescribed a tapering schedule of prednisone which worked great!
Within the first few days of the pred. my hair completely stopped falling out... and within 2 weeks new growth could be seen. The Bad news is that once the tapering of prednisone ended, my hair began falling out again!!! i did the 8 week tapering schedule 3 separate times, and each time it ended, my hair began to fall out again. soooo i'm on 20mg of prednisone now for long term maintanence-- eventually i will taper off it again. The prednisone at 20mg has not caused weight gain or the "moon" face and my hair is growing in great.


Now that's weird. I was on prednisone and nasonex for a sinus infection a few weeks ago and the combination of steroids made my hair fall out in clumps. Luckily once I stopped the steroids, the hair loss stopped.

No hair loss with the Topamax so far.
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#8 jcj

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Posted 18 October 2008 - 08:10 AM

I've talked to one person on my MAV forum who she still has a Topamax-induced bald spot, which worries me.


The action of losing hair stops when you stop taking Topamax.

But it's not like anything will necessarily reverse once you stop. Any bald spots that form could still remain. Whatever cosmetic treatments one might try should work when not taking a med that causes hair loss.



Thanks Jerod, for the bad news. This is really depressing.

Shows you just how vain I am, I knew it was taxing my major organ systems. That didn't depress me. This does, big time.

Thanks though, i appreciate knowing.

jcj
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#9 Jerod Poore

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Posted 18 October 2008 - 10:53 AM

Shows you just how vain I am, I knew it was taxing my major organ systems. That didn't depress me. This does, big time.


There's a reason why God invented wigs and Rogaine.

As for taxing major organ systems, unless you're on dialysis or were already prone to problems with temperature dysregulation, I can't understand how Topamax would be a problem.
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Jerod Poore - Owner, Founder and Chief Citizen Medical Expert of crazymeds.us
I am not a doctor, nor do I play one on TV. No doctor, nurse, pharmacist or lawyer was harmed in the creation of this post. No warranty is expressed or implied. Not valid with any other offer. Void where prohibited.

Current meds: lamotrigine 200mg, topiramate 400mg, buspirone 30mg, protriptyline 20mg, EPA 600mg, Aspirin 162 mg, lorazepam 1mg PRN
Past meds (likely incomplete): Abilify, clonazepam, desipramine, diazepam, Gabitril, lithium, methylphenidate, Neurontin, Paxil, prochlorperazine, Provigil, Prozac, Risperdal, Seroquel, Serzone, Strattera, Trileptal, Zyprexa

#10 jcj

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Posted 18 October 2008 - 12:24 PM

Shows you just how vain I am, I knew it was taxing my major organ systems. That didn't depress me. This does, big time.


There's a reason why God invented wigs and Rogaine.

As for taxing major organ systems, unless you're on dialysis or were already prone to problems with temperature dysregulation, I can't understand how Topamax would be a problem.


I admit to being melodramatic, but there's got to be a reason for the safety monitoring of creatinine and HCO3.
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#11 Jerod Poore

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Posted 19 October 2008 - 10:56 AM

I admit to being melodramatic, but there's got to be a reason for the safety monitoring of creatinine and HCO3.


Yes. Read the part in the PI sheet as to when that is required. "Renally impaired." I.e. ON DIALYSIS OR WALKING AROUND WITH ONE FUCKING KIDNEY.

Are you on dialysis? Do you have only one functional kidney? If so, have them monitored. If not, stop worrying about it.
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Current meds: lamotrigine 200mg, topiramate 400mg, buspirone 30mg, protriptyline 20mg, EPA 600mg, Aspirin 162 mg, lorazepam 1mg PRN
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#12 Maddy

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Posted 19 October 2008 - 12:23 PM

Shows you just how vain I am, I knew it was taxing my major organ systems. That didn't depress me. This does, big time.


There's a reason why God invented wigs and Rogaine.

As for taxing major organ systems, unless you're on dialysis or were already prone to problems with temperature dysregulation, I can't understand how Topamax would be a problem.


I admit to being melodramatic, but there's got to be a reason for the safety monitoring of creatinine and HCO3.

Yeah and it's for people like me who have to take topamax (currently 500mgs) for seizures. I also have to watch my potassium intake because my kidneys are fucked from autoimmune disease. I'm currently pissing blood and and leaking protein and on prednisone treatment which is fucking with my moods, so please excuse my language and short temper. Back in '05 I was on cyclo/something (can't remember what the name of it was, sorry) treatment to bring my immunesystem in check because my immune system was fucking several of my organs over. It brought my immune system down so low that I got pneumonia in DEC of that year and had to be jerked off of it ASAP.

So with all of that in mind, it may put your melodrama in check.
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#13 medi

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Posted 20 October 2008 - 08:08 AM

Thanks Anna,

I'll be speaking to him in a month and I will ask him, but he's truly a savant. he's a super-specialist who knows little outside of how to treat MAV. I doubt I'll get much info regarding this from him. But I'll try.

I've talked to one person on my MAV forum who she still has a Topamax-induced bald spot, which worries me.

I would love to hear from others

Thanks again, Anna!

jcj

Topamax is not the only culprit. In the past 15 years, I've lost hair on Depakote, Topamax, Lamictal, and who knows what else. These were the obvious ones. In my case, hair loss will stop if I stop the medication causing it, but will not come back. In my case too, I am practically always on something that causes hair loss. It's gotten to the point where my teen-age son, who typically would not notice if I dyed my hair blue, has noticed (or maybe my ex commented). I have bought supplements that I heard help: selenium, zinc, biotin, and butterburrh (sp?). I have not been on them long enough to speak. I contemplated Rogaine, but I know that the minute you stop, you lose all it gave you. Also, I worry about what is entering my system and interactions with my meds.
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<p>Dx Axis 1: BD II. Had been diagnosed with MDD. Am sometimes also diagnosed with PTSD.Has undergone ECT in 2008.Current Meds: Lithium 600 mg, Synthroid 75 mcg, Inderal 40 mgs, Ativan 2 mg or more, as needed, Zolpidem.Have had experience with: Tricyclics (useless back then), Paxil, Celexa & Lexapro ( the three caused jitteriness&/or mixed states), Wellbutrin (also jitteriness, more severe), MAOI-B (Emsam patch)(hypomania, fun, but no way I could sit at my desk and think), Neurontin (innocuous), Depakote (too much weight gain, hair loss, sleepiness, lack of energy, and no noticeable benefit), Topamax (I'll only cite the suicidality obsession as of 75 mgs....), Lamictal (no benefit), Zyprexa (heart palpitations and shortness of breath at only 2.5 mgs), Abilify 2 mgs (serious GI pain), Calcium Channel Blockers (weak --- verrrry).

#14 tcane

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Posted 05 September 2015 - 06:02 PM

I know this is some 9 years later, but I believe I may be having an autoimmune reaction from Topamax, as in remission had mentioned.  Ive lost over 50% of my hair, eyelashes, eyebrows, pubic region and thinning hair in other places. too.  I lean more toward depression than mania, and had an eating disorder before topamax, so they needed to take me off topamax anyways.  I started tapering because I had suicidal thoughts, became isolated and withdrawn, and this is now worse due to my extreme hair loss.  My loss has gotten worse as I've tapered, and am now off topamax (was on 200mg) and being prescribed something else by my pdoc, but I was curious as the continued loss provokes more anxiety than I can handle at times.  Does this autoimmune response eventually regulate itself off the medication?  Or is it something I now will need to deal with the rest of my life?  Is the hair loss reversible, that is.  I am experiencing more than simply hair loss, but other autoimmune symptoms such as rashes, fatigue, amenhorrhea, extremely dry painful eyes (like i have sand or dirt in them), and slight joint aches.  By far the most distressing is my loss of my menstrual cycle, hair loss and fatigue.  Is this reaction something that will eventually stop after I have been off Topamax for a while, or do I need treatment?  

My doctor is also wanting me to be put on Lamictal instead, yet I am somewhat terrified of anti seizures because of all thats happened since topamax.  Besides the autoimmune symptoms, does anybody know other drugs that I could be on that have less effects than the topamax did? 


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#15 Blue Heron

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Posted 05 September 2015 - 06:12 PM

Have you tried Rogaine? I'm not sure I'd classify this as an autoimmune response, and I would imagine it'll fade, though it'll take some time (weeks).

Edited by Blue Heron, 05 September 2015 - 06:12 PM.

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#16 VAL

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Posted 06 September 2015 - 03:25 AM

Who diagnosed with an autoimmune disorder? Have you  asked to be referred to a specialist (rheumatologist I would think)?

 

Are you saying that the Topamax caused your suicidal thoughts, isolation and withdrawal or was it simply ineffective?

 

I'm just trying to understand more about your history. I assume you have BPI since you have mania and depression. Have you been on a number of other meds that failed to stabilize you and then put on Topamax? It's a bit of a weird choice as a first med trial, especially in light of not previously trying Lamictal. Lamictal is great for BPII because it can help with depression but BPII only has hypomania symptoms and depression, not mania.

 

Lithium is a non AED med that is great at preventing mania and can help with depression. My pdoc wanted to add on a low dose of lithium as a adjunct to my AD. A good website in general is psycheducation.org and it has a good lithium page.

 

If you've been on Lithium before then perhaps you could mention all the meds you've been on we don't suggest things you've already tried.


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#17 tcane

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Posted 09 September 2015 - 09:53 AM

Hello

 

Who diagnosed with an autoimmune disorder? Have you  asked to be referred to a specialist (rheumatologist I would think)?

 

Are you saying that the Topamax caused your suicidal thoughts, isolation and withdrawal or was it simply ineffective?

 

I'm just trying to understand more about your history. I assume you have BPI since you have mania and depression. Have you been on a number of other meds that failed to stabilize you and then put on Topamax? It's a bit of a weird choice as a first med trial, especially in light of not previously trying Lamictal. Lamictal is great for BPII because it can help with depression but BPII only has hypomania symptoms and depression, not mania.

 

Lithium is a non AED med that is great at preventing mania and can help with depression. My pdoc wanted to add on a low dose of lithium as a adjunct to my AD. A good website in general is psycheducation.org and it has a good lithium page.

 

If you've been on Lithium before then perhaps you could mention all the meds you've been on we don't suggest things you've already tried.

Hello VAL, thank you so much for your quick response.  I saw an internist who saw I had elevated ANA, and suspected that reducing my dose then going off of topamax triggered an autoimmune response.  I have gone to a rheumatologist, and she has done further testing where I can expect my results by next Monday.  She stated it is possible to have drug induced lupus with my ANA levels, and wanted to find out further if this were the case as it sounded like it was.  Topamax was certainly effective for around 1.5 years.  However, during that time I did not amount to or accomplish much, and became less energetic, less motivated and overall somnolent.  I enjoyed staying home more than going out, and did not feel a pull that I used to have to succeed, or even care.  I think these several years adding up is what contributed to feelings of sociality.  At year 2, I began to have obsessive thoughts, depression, suicial thoughts, and anxiety more so than I ever had in my entire past of having mood symptoms.  I have never isolated myself from depression, and began to feel unable to socialize and had extreme fears and irrational thoughts.  As I've gotten off of the topamax, my mood has significantly lightened- albeit this extreme hair loss from eyebrows, eyelashes and eyebrows.  I am desperate to know if it will grow back once its out of my system- or if not treating inflammation will further my issue.  If this is the case- how do I treat it.

 

My doctor believes lamictal will help with my mood issues- however I have always leaned more towards anxiety and depression, and never have a true manic state.  When my mood feels elevated from depression, I feel good- this is incomparable to mania, and I have never had true symptoms.  I believe an SSRI may be more helpful and less damaging physically.  I am unsure though.  I was on lexapro for sometime prior, as well as prozac.  In both, I was able to stop having symptoms for some time, and believe they would be most helpful- not AEDs.  

 

So my question is: if this is an autoimmune issue,

is it treatable and reversible

and what drugs would be best if an AED caused such lack of motivation and drive?  I am looking to feel happy again, not at a mood plateau.

 

Thanks very much in advance.


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