I had posted the other thread saying how bad my hairloss was starting to get since starting on the Topamax. I know others have suffered hairloss from this med, so I have not entirely ruled it out as the culprit. Also, the quick weight loss and my poor eating habits could have added to the problem. I have since remedied these two situations and I have an update that I thought warranted a new thread.
I have since found out that my B12 level is below what is considered to be an acceptable range. Normal range is 300-900 and I am in the high 200s.
B12 deficiency can most definitely cause hairloss and I just naturally assumed it was the Topamax. I have never had my level tested before, so I have no means by which to compare it to.
Interestingly enough, a low B12 level can also cause confusion and cognitive issues, according to my dr, (which I have), so now I'm wondering if Topamax lowers B12 levels. I wonder if any studies have been done on this. Think about it, if Topamax causes hairloss and confusion, perhaps it lowers B12 levels. I'm just putting this out there in case others who've had similiar symptoms want to have their B12 levels tested and it may be as simple as taking a supplement to counter the side effects of the med.
Anyway, I was started on 1,000 mcg of supplements daily and I'm very curious to see if anything changes over the next few months. This is my own scientific study and will post back in three months when my B12 levels are up. At that time, I will either be very happy or very bald, LOL. I hope this is the culprit, as I really do not want to get off of the Topamax. I still think of it as my little wonder drug. Will keep you posted.
I took topomax from 2003 until Oct. 2007 for headaches. Within a year of being on topomax, I was diagnosed with serious B 12 deficiency. Although my internist ran several tests to determine the cause, he said he really could not find one but named it pernicious anemia and said I could not absorb the b 12 in my system. I am not sure what tests he ran, but since that time I have had to receive B 12 injections. They really help but are a hassle. My vision also worsened on topomax and did not improve after I went off of it. However, I just turned 55 so that is part of the vision issue. I was very moody and depressed at 200 mg of topomax but that went away at 400 mg. Wish I still had the weight loss. I gained it all back and then some.
Interesting - thanks for your input. I haven't repeated my B12 level yet, (I will in July) but I do see a difference in my cognitive ability since taking the 1000 mcg daily. I'm actually able to read (and follow) a 400 page book, whereas I couldn't even comprehend a newpaper article before, so I know it's working.
As for the hairloss, it's too early to tell. It's still coming out and I'm pretty concerned. Thankfully, my hair is very long, but thinning out pretty quickly.
I know I have some type of autoimmune anemia. I make enough iron, my body is not just absorbing it....is that the same thing as what you described?
Knowing that the weight does come back after coming off the Topamax is enough to keep me on this medication for the time being. Did you go off of it because of the vision problems?
I am doing research on my own about Topamax and Vitamin B-12 ,as I cant find a Dr that will help me . I have been taking Topamax for about a year for Migrane headaches 6 months into it my hair was thinning but I didnt pay much attention to it about a month ago my hair started to really thin out , I went to a dermatologist and he said it was from the Topamax and to stop taking it . I then went to my family Dr she ran blood work and found out I had B-12 deficiency I had my thyroid tested it is normal all other labs came back normal . If anyone has any info on the effects of Topamax or knows anyone who could give me advice on what to do about B-12 deficiency?
I am trying to research on my own about Topamax and Vitamin B-12 ,as I cant find a Dr that will help me . I have been taking Topamax for about a year for Migrane headaches 6 months into it my hair was thinning but I didnt pay much attention to it about a month ago my hair started to really thin out , I went to a dermatologist and he said it was from the Topamax and to stop taking it . I then went to my family Dr she ran blood work and found out I had B-12 deficiency I had my thyroid tested it is normal all other labs came back normal . If anyone has any info on the effects of Topamax or knows anyone who could give me advice on what to do about B-12 deficiency?
I was on Dilantin since 1991 until two months ago when I was switched to to Topamax. Now my thoughts are scattered, I'm easily confused, not to mention it has taken me almost ten minutes just to type this small post.
Does this ring familiar with anyone else on Tomamax? and if so does it last?
omg - yes. It sounds sooooo familiar. A typical email can take FOREVER to organize and gather your thoughts. You're definitely not alone in that - and it all started with the Topamax. It does get better, but you have to have
a-l-o-t of patience. I began the Topamax last July and I'm finally doing so much better now. I'm really glad I stuck it out, I'm really happy with this medication overall.
I have been on Topamax for approximately over 4 years. The only major side effects I have had is loss of appetite loosing over 30 pounds and still today I can go times and days without eating much. It is a struggle to eat at times and just not really being hungry which leaves me with no energy. Now with confusion....I am not relating with the typing the emails as I have to type reports and assessments at work weekly. I do get scatterbrained when talking at time if I do not take by time, it will come out mumble jumble ever since being on the medicine. The only other side effect is the tingling of feet and hands.
However I love Topamax because I am fully controlled with my epilepsy!
My 20-year-old daughter has recently experienced a low B12 in the 200s. She too has had a 22-pound weight loss, but we figured that was from the vomiting, nausea, and diarrhea she has also had in, what we believe, is a separate illness. Along with the low B12 level, she has had a low HGB of 10. She is on Topamax for migraine headaches.
She has no history of seizures, although recently she did have a strange episode, after 16 hours without sleep and working the night shift around the clock, of amnestic events which involved wrecking her car. She says she did not fall asleep, but she cannot remember what happened for about 10-15 minutes of time. She was actually at a pet store and does not remember what she bought, paying for anything, leaving the store, or driving back to her apartment. She only remembers hitting something, does not even know which entrance she entered her apartment complex. Sounds like a fugue state of consciousness??? Anyone else ever experience this? She is on Topamax, like I said, so this should prevent any partial complex seizures, or any form of seizures, right?
Your daughter should be taking B12 supplements with levels that low. I went through the same stomach issues as your daughter did when adjusting to the Topamax. Eventually, it subsided, but it took quite awhile. I am now down 55 lbs. My B12 levels were almost as low as hers and it has helped me tremendously. My dr. put me on 1,000 mcg daily and it took about 2 months to feel the results.
Sleep deprivation can definitely bring on seizures, even in people who've never had seizures before. I wouldn't swear that the Topamax would have covered her, if it was, in fact, a seizure.
Your best bet, if you haven't already done it, is to have her have an EEG, just to have her checked for seizure activity. Perhaps, the accident was just caused by sleep deprivation and nothing more. It's the amnesia episode that has me thinking that it should be looked into further.
Many people who take Topamax have difficulty with memory, it's a known side effect...but I've never heard of it causing amnesia. However, I HAVE had seizures where I've been on "automatic" and continued to function normally, with absolutely no memory of it. On the side of caution, consider having her checked out.
Last edited by life_is_good; 06-17-2008 at 03:46 AM.
Wow! Your input and info has been so very helpful. Thank you. In early March of this year, my daughter first established with a new physician who did baseline lab studies, and started her on Topamax for her migraines. So, actually it was the baseline labs that first revealed the low B12 in the 200s, hemoglobin of 10, and also an increased white blood count of 12. This was BEFORE beginning on Topamax just a few days after her first appointment, but on every lab draw since March, her B12 has been low. Anyway, her main symptoms began after beginning on the Topamax, i.e. nausea, vomiting, diarrhea, abdominal pain, weight loss of 20 pounds, and then coupled with the abnormal blood results. The doctors have put her through a VERY thorough investigation including a colonoscopy, CT scans, and even a diagnostic laparoscopy with appendectomy. ALL have been normal and negative. Next step is to refer her to OSU to a GI specialist. Could this all be simply side effects from the Topamax???? In the beginning of taking Topamax, she had the usual confusion, taste abnormalities, but these have resolved since beginning it. She is now taking 100 mg daily. She has been getting B12 injections since March, when she went back to her doctor in followup of her first visit. Right now, her B12 level is in the 400s, even after monthly B12 shots. She still has a hemoglobin in the 10s and her white count is still very slightly up. She also had intermittent low grade fevers and sweats. Not sure about the increased white blood cell count and low-grade temperatures, if this could possibly be from Topamax too (??) The side effects that I found on line though state "flu-like symptoms," and "feeling of illness."
Could it be possible that this whole 4-month long stint of symptoms are actually from the Topamax?? She has seen 3 doctors in this amount of time, including the surgeon; could it be possible that 3 doctors have missed the simple fact of side effects from this medication???
In regards to the state of unconsciousness she had, this was definitely strange and out of the normal for her, and was definitely an amnesic event. She bought things at the pet store that she normally would never have bought. She did not hit her head during the accident. She stumbled up the steps to her apartment after the accident and fell and scraped her hand. She was absolutely normal and feeling fine just an hour before the episode, as I can attest to that from talking with her on the phone myself. She said she had had no medicines at all except at 12 midnight the night prior she took some nausea medicine.
She is on medicine for nausea and vomiting, medicine for diarrhea, and was on medicine for abdominal pain....all which could be symptoms from Topamax. This seems ridiculous.
I was talking with her surgeon after the appendectomy, just last week, and I mentioned to him the recent unconscious state, and he first brought up the term "fugue" state. So I researched it and I find that this term fits her well. She did have an EEG 3 years ago, and it was normal. She had a head CT last year, and it was normal. She had an MRI of the brain also 3 years ago which was normal.
Anyway, thank you for allowing me to share, and also for your great input. Everyone's input has been very, very helpful! :-)
You're enlightening me as well, I never heard of the term "fugue". I just did a search on it. It's not what I was referring to. I had seizures where I would continue typing or doing an activity, but had no knowledge of doing it. "Fugue" seems to mean something different - unrelated to epilepsy - more of a psychological phenomenon. I wonder if that would show up on an EEG like a seizure would. By the way, she is on such a low dose, that even if it was a seizure, that would not have protected her adequately.
Unlike your daughter, the taste abnormalities I've experienced since starting the Topamax still continue for me. I still cannot drink soda or enjoy chocolate. These are my two favorite things! Maybe that's why I've lost so much weight, lol.
I've never had the flu-like symptoms, but I've heard it could be a side-effect. I can't comment on the bloodwork, as I don't know alot about it.
I too, was on medication for the abdominal problems and strangely, once I stopped taking the medication, my stomach issues resolved. I don't understand it, but that's exactly what happened. I've learned to watch what I eat. I do know that I have difficulty digesting cheeses, fatty things, fried stuff, sauces, even find myself being lactose intolerant (carry Lactaid now)...things I NEVER had problems with before the Topamax. Does your daughter recognize any particular pattern with food? I agree that it's crazy to take meds to counter the side effects of the Topamax, which is why I stopped taking the stomach pills in the first place. The funny thing is, the stomach issues got so much better once I stopped them, simply by watching what I ate. However, it does control my seizures, and my weight, so I'm sticking with this med.
Since her last EEG was three years ago, I'd still recommend another one. Since the CT was just last year, the EEG should be enough. If you want to try to reenact the brain activity of what happened that day, ask the dr. to do a sleep-deprived EEG. That would require her to be awake for a 24 hour period - not very hard for someone that age. Perhaps, this is not the best medication for your daughter - especially if you can properly rule out seizures.
Please post an update when you can.
Last edited by life_is_good; 06-17-2008 at 12:52 PM.
The sleep-deprived EEG sounds like a great idea. I have strongly encouraged her to get an appointment with a neurologist ASAP as he would be the expert on Topamax and the known side effects, as well as be able to address the migraine issue and the strange state of amnesia she experienced. She has been through so many expensive, painful tests and procedures trying to figure the whole picture out, it just pains me to think that it is all because of side effects from a medication, and that more diagnostics are planned in the future (upper endoscopy, consultant with a GI specialist) if in fact it can all be explained by the medication. I have encouraged her to maybe contact her physician about tapering down and going off to see if indeed her other symptoms are affected, maybe even perhaps goes away. Then she would certainly know for sure. She, however, is not convinced it is the side effects, and said she does not want to have to go through the initial 8 weeks of side effects when she would restart the medication, i.e. the cognitive side effects she had initially when starting it which have now subsided.
I thank you again for your helpful insight and will keep you posted later on what is decided and discovered. :-)
The definition I received from "fugue state" from an online medical dictionary was "An altered state of consciousness in which a person may move about purposefully and even speak but is not fully aware. A fugue state is usually a type of complex partial seizure." This describes my daughter's episode to a "T". I also seen the other websites that describes what you were talking about..."dissociative states," etc. and that does not describe the episode.
It does make sense to wean off the medication to see if that's the culprit, but I completely understand your daughter's position. It took so long in getting through all of the side effects that she'd hate to do it all over again.
Well, best of luck on whatever the two of you decide to do. I look forward to hearing an update down the road. Take care.
Glad I popped back online to see the P.S. that you added. I missed it, I must have been typing my response at that time.
When I looked up "fugue", I only saw the "disassociative state" that you had mentioned. I didn't realize it could mean the "altered state of consciousness". Those are the words that I used to describe my complex partial seizures to my neurologist. If this is how your daughter describes her episode(s), then an EEG should definitely be in order.
Last edited by life_is_good; 06-17-2008 at 01:20 PM.
I completely agree. Can I ask just one more question...can partial complex seizures last 10-15 minutes? I always thought they just lasted seconds at a time, in the upwards of a minute at a time, very brief. We figured my daughter's lapse of memory encompassed about 10-15 minutes of time...no more than a 5-minute drive home from pet store, and maybe 5-10 minutes in the pet store. Just wondering.
Sorry I didn't get back to you last night. I started to post, but then got caught up in family matters.
I'm kinda new to complex partial seizures myself, so I'm probably not the most qualified to respond to your question. I've only had this particular type for the past year, although I've had grand mals and other types of seizures for many years. Confusion is quite common following a seizure and they can go on for quite a few minutes, as there are different stages to it.
From what I know, CPS can last several minutes, but there is a period of time after a seizure that can go on for quite a while where there is quite a bit of confusion. Sounds like it could possibly be generating from the temporal lobe. Many times, complex partial seizures can generalize - meaning they can go into grand mal seizures. I don't think that's what happened in your daughter's case, as you didn't mention it. Just curious, was she alone at any point in time? Could she have had a grand mal and not have known it?
Last edited by life_is_good; 06-18-2008 at 08:16 AM.
I doubt it. There was no evidence of such, i.e. tongue biting, etc. Her roommate seen her upon her returning to her apartment, after she had wrecked her car, and told her she looked bad and needed to go to bed. She did stumble up the 3 flights of stairs to her apartment, fell and scraped her hand pretty good. Sounds like she had drugs in her system, I know, but really did not. She does not abuse drugs or alcohol, and the only medication she had taken in days was Compazine for nausea at midnight prior (nausea probably, my money is on, the Topamax). And again, she was perfectly fine when I talked with her for at least half an hour between 8 and 9 o'clock hour in a.m. She works in the local hospital ER and was coming off the night shift. She was all excited about her night because it was her first night on the job as this was a transfer from another department. I'm sure she had an adrenaline rush all night as she eagerly told me in our phone conversation about all of the thrilling cases they got in and she was able to participate in the care for. She did not bump her head either during the accident as she realized she had no tender spots anywhere on the head or face.
She is very concerned about this situation herself also but is afraid to go to her family doctor because she is afraid he will tell her not to drive. I have reinforced to her, however, the danger to herself and other innocent people if she were to have another episode like this one, whether it be a true complex partial seizure or a phenomenon of a fugue state of sleep. I do believe, however, that whatever it was it was undoubtedly brought on by stressors from lack of sleep, excessive nausea, vomiting and diarrhea; dehydration, weight loss, etc. (which, again, could all be from the Topamax).
Thanks again for your helpful input. I'll keep you posted once we find out anything for certain. It helps to have information from people who have experience with this type of condition.