warning about Topomax

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zook

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I don't know if anyone here is on Topomax or not. I recently switched from Dilantin to Topomax and would like to talk about my experience because there are some side effects of Topomax that aren't well documented and my neurologist did not discuss with me. I only found out about these side effects after a few months of starting the meds and after I started noticing changes. I went on line and found out for myself.

- Hair loss. Although hair loss is being reported by some people who take this medication, you probably won't find it listed as a documented side effect. But a lot of people experience hair loss with Topomax. I don't know if it's because this medication kills your appetite and you end up losing vitamins or if it's because of something else. But if you plan on going on Topomax, cut your hair, start taking some vitamins and beware of hair loss.

- Flaky nails. Bone pain. I started noticing that my nails were getting paper thin and my bones were aching. It didn't occur to me that it had anything to do with Topomax. Until I took a fall and broke my and dislocated my wrist. Again, I went online and starting hitting the forums. I noticed a lot of people were complaining about long term Topomax use and bone problems. Again, maybe this has to do with the fact that Topomax kills your appetite and it affects your calcium intake. But I suggest you speak with your doctor.

I am getting off this medication right now and staying away from it. It is NOT working for me. The side effects are terrible. The problem with these newer drugs (as opposed to say Dilantin that has been on the market much longer) is that long term side effects haven't been studied as widely. There aren't any studies that look into the less known side effects and patient complaints. So doctors know about these complaints here and there but they don't have stats.
BEWARE
 
I initially started taking Topomax- 400 mgs a day, about 15 years ago and lost about 20 lbs. within a couple of months. I was also very spacey, forgetful. I didn't experience any hair loss on this medication. I still take Topomax, 200 mgs, along with Keppra. But there are side effects that go along with Keppra, also. Once upon a time, I also took Dilantin, but that med didn't work for me. And nearly all AEDs have a warning about depression/suicidal thoughts, including Dilantin. It also can cause hypothyroid problems and effect a person's gums, so beware.

Check www.drugs.com to give info for the consumer and for the healthcare provider.
http://www.drugs.com/sfx/dilantin-side-effects.html
 
Are you meaning the topomax can cause hypothyroidism and affect gums?? I didn't know that.
 
Dilantin has side effects as well. I was on it for a long time. It did cause some problems with my gums. But I will take that any day of the week over hair loss. If you see your dentist on time and take care of your gums, that problem, to me, is manageable. But hair loss and bone problems, over time, are much worse that gum problems. Dilantin can cause problems with your liver too. Again, if you monitor your liver, don't consume alcohol etc, you can manage that side effect. But there is nothing you can do for hair loss.
But the bigger picture is that when you talk about a drug like Dilantin, you know what you are getting because it has been on the market long enough and almost every thing is known and studied. But with Topomax, or newer meds, you are dealing with unknowns.
 
I was on topamax for a little bit. I never made it to a therapeutic level. I was a giggly, word forgetting zombie. Great behavior for teaching at risk teenagers. My hair did fall out at a faster rate. I didn't even lose a normal amount. I used to shed ... a lot. My lips were dry and I found myself drinking more water. It was a fight to eat and my blood sugar would drop. For some people topamax is a great drug for others not so much. Everyone responds differently. Just remember that if things go well you might tell a few people; if things go badly you tell everyone.
 
I was allergic to this medicine and broke out in hives.
That was however in like 2nd or 2rd grade.
 
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zook said:
Dilantin has side effects as well.......Dilantin can cause problems with your liver too. Again, if you monitor your liver, don't consume alcohol etc, you can manage that side effect. But there is nothing you can do for hair loss.
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And Dilantin can cause Lupus and has been linked to Stevens-Johnson Syndrome. It also causes folic acid deficiencies. And if taken while pregnant, it can cause a child to have a cleft palate. I took Dilantin during my 1st pregnancy because there were not many other AED's available. My daughter has a very mild cleft palate.

zook said:
But the bigger picture is that when you talk about a drug like Dilantin, you know what you are getting because it has been on the market long enough and almost every thing is known and studied. But with Topomax, or newer meds, you are dealing with unknowns.
Click to expand...

Not necessarily. They are always discovering something with meds.

http://en.wikipedia.org/wiki/Phenytoin#History
In 2008, the drug was put on the FDA's Potential Signals of Serious Risks List to be further evaluated for approval. The list means that the FDA has identified a potential safety issue, but does not mean that FDA has identified a causal relationship between the drug and the listed risk.

According to the FDA's New Safety Information Identified by the Adverse Event Reporting System (AERS) Phenytoin Injection (Dilantin) has been associated with the risk of Purple Glove Syndrome.

A 1981 study [8] by the National Institutes of Health showed that antacids administered concomitantly with phenytoin "altered not only the extent of absorption but also appeared to alter the rate of absorption. Antacids administered in a peptic ulcer regimen may decrease the AUC of a single dose of phenytoin. Patients should be cautioned against concomitant use of antacids and phenytoin."
Click to expand...
 
I am

on Topamax, and have been for a number of years now. I guess I am lucky in that I have really not had any problems with it,though I would guess that my hair loss....I do lose more hair than most people....might be attributed to it.

I do make it a point to eat several yogurts a day to help with my calcium, and cheese as well. I will admit to a bit of bone pain here and there, but I do have arthritis, so cannot attribute it completely to the Topomax.

I also drink a lot of water as well, but that is something I have done for years...
 
Cint you are proving my point. Here the FDA is actually looking into possible side effects of Dilantin.
But with something like hair loss and Topomax, no one is looking into it. It is not even listed as a serious side effect. The same is true with issues related to bones.
Anyway I am not here to argue about this. I posted this as a warning to anyone who is on Topomax or thinking about taking Topomax.
Be warned, there are some side effects that are not discussed. It doesn't mean that you will get them, but you might. So discuss them with your doctor and be prepared.
Cheers to all
 
zook said:
Cint you are proving my point. Here the FDA is actually looking into possible side effects of Dilantin.
But with something like hair loss and Topomax, no one is looking into it. It is not even listed as a serious side effect. The same is true with issues related to bones.
Anyway I am not here to argue about this. I posted this as a warning to anyone who is on Topomax or thinking about taking Topomax.
Be warned, there are some side effects that are not discussed. It doesn't mean that you will get them, but you might. So discuss them with your doctor and be prepared.
Cheers to all
Click to expand...

ALL drugs have side effects that the doctors may not discuss with you.

Just because all of a drug's side effects aren't listed in the PDA, doesn't mean it isn't being further investigated. Speaking from experience.
 
About four years ago I was on topamax, and crappy side-effects aside, I really liked it. I forgot simple things (couldn't remember what the washing machine was called-- "That thing... that washes clothes" lol), and had that "jumbled my out came words" problem. I still have the latter to an extent, but much slighter, it's more of a "my mouth moves faster than my brain can think." I felt great on it though. And I gave up drinking soda since it tasted flat, and also sour cream & onion potato chips (for some reason they tasted off while I was on topamax.) Bonus: no migraines. I'm honestly not sure why my np at the time took me off of it.
 
I research every drug my doctor prescribes before I take it. I look at:

- The package insert: http://dailymed.nlm.nih.gov/dailymed/about.cfm

- I listen to patients: http://www.askapatient.com/

- I do a google search: www.google.com

- I add the drug to my list of drugs that I keep stored on drugs.com. Then I run the interactions checker to make sure that it doesn't interact with any of my current drugs, or any over the counter drugs or foods. The doctor and pharmacist are supposed to do this, but I've been surprised how much has slipped through so I do it myself now, too. http://www.drugs.com/

- I search old forum posts, if it applies.

It seems like a lot of work, but I know I'm not the only one that's on a complicated list of meds. I want to make sure I stay feeling as good as possible in spite of it.
 
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