Topamax is a VERY dangerous med

Discussion in 'Fibromyalgia Main Forum' started by Tibbiecow, Apr 15, 2006.

  1. Tibbiecow

    Tibbiecow New Member

    I know that there are sooo many of us who have tried just about everything out there before finding that one med, or combination, that helps your quality of life.

    Unfortunately, we sometimes find out, TOO LATE that the drug that we are taking is destroying our body, somehow. For instance prednisone causing permanent heart valve problems, or Effexor becoming the drug from h#!! when we try to get off it.

    Topamax is a very dangerous drug! In my opinion, it is being overprescribed and overused because too many doctors and patients do not know what it can do to you.

    I was carefully titrated onto a high level of this drug to try to reduce my migraines. I was on Topamax for 8 months, I don't believe in a quick trial and give-it-up attitude. It did nothing for the migraines, but put me in a fibro-fog like stupor in which I didn't want to communicate with anyone. I am surprised that people can drive on this med. I do not think that it is safe- you just can NOT think straight on this drug.

    If you read the fine print, this drug can cause 'emotional lability' or depression, and SUICIDAL THOUGHTS. It can also cause permanent and serious problems with your eyes, as well as other organ functions. There is a strong warning that you should NOT become pregnant while taking this med, and doctors must discuss your birth control status before prescribing.

    This has become a popular drug to prescribe, because it is SO expensive that the drug companies are making a BIG pile of money from it. It has been approved as a migraine preventive, and many people clamor for it because it can cause weight loss. It has also shown some possibility of reducing pain due to fibro, but this has not been studied significantly yet.

    I quit taking Topamax because 1)it was ineffective for migraine prevention, 2)I had no significant fibro pain decrease, 3) I could no longer drive tractors or heavy equipment because I could not think and react appropriately, 4)I was becoming increasingly depressed and 5)I WAS HAVING SUICIDAL THOUGHTS. By the way, I only lost 4 pounds. I also am very thankful that I did not kill myself or somebody else while driving a car.

    In my opinion, this is a very dangerous drug whose serious effects we will begin to see soon. It should be used only if you AND your doctor have actually read all of the fine print on the leaflet enclosed with the med, and only when other drugs have proven ineffective; in other words as a drug of LAST, rather than first, resort.

    Topamax is a relatively new drug, and we don't know yet what kind of heinous permanent damage that it can do to our already compromised bodies.

    I have posted several replies to people inquiring about Topamax, and nobody yet has asked about the serious problems I had while taking it.

    I hope somebody reads this and re-evaluates their desire to give this med a try if there are ANY other choices. Once again, I do realize that this may be the one drug that gives somebody their quality of life back, but I do not see enough caution on doctors' parts when prescribing this nasty stuff.

    Tibbie
  2. ilovecats94

    ilovecats94 New Member

    for neuropathy for his feet, but it didn't help him and he quit it. I guess I'm happy he did with all the problems you have had from it.

    Hugs,
    Faye
  3. lmmillion

    lmmillion New Member

    I actually tried it twice, because my Dr. seemed to think it would be so great to help my pain and to lose weight. I did lose a little weight, but I became a raving lunatic! I was aggitated and yelled at my daughter for everything. I felt depressed and overly emotional. It was awful. After stopping the drug, the emotional symptoms stopped.

    Several months later, my Dr. suggested I try it again, except stay at a lower dose for longer. I still had the same type of problems and immediately stopped. Now my Dr. is suggesting Neurontin or Lyrica, and I am afraid to try either one for fear of a bad reaction.
  4. kjfms

    kjfms Member

    ...sorry Topamax did not work for you. It worked great for me...help reduce number of daily Migraines and help reduce FMS pain.

    I lost 70 pounds in a year and a half with out trying. The weight loss is not guarantee it happens for some and for others it does not. I know of a couple of people who took and did not loose any weight.

    As with any medication there are risks, however, these risks do not effect everyone in the same manner. The possible side effects listed on medications are just that possible.

    The recommended dosage for Migraine management is pretty low, as low as 100 mg per day has worked.

    For a while I too was titrated up to a high dosage and it was too much for me caused a lot of memory problems. These went away when I was titrated back down to a lower dosage.

    I agree with you that too many people and physicians are viewing Topamax as the weight loss wonder drug and that this view should be avoided.

    I am glad you shared you view on Topamax but I am very glad to be back on it for a reduction in my Migraine headaches. I get them daily and Topamax has helped for me. I am sorry it did not for you but this happens with many medicines.

    I too feel that when considering any medication patients must do research, weigh the pros and cons in order to make an informed decision on our treatment and to remember while one thing works for one person it is not a guarantee it will work for another.

    Thanks for letting me share my view as well.

    I wish you luck in finding relief,

    Karen
  5. kbak

    kbak Member

    Hi Tibbie,
    Thanks for the warning. I don't take this drug, but I do take neurontin. I didn't know a whole lot about this drug before I took it. Now that I know how dangerous this drug can be, my body is dependant on it. I'm slowly trying to ween off of it. It's not fun.

    My eyes have been affected by the neurontin. I'm angry the docs don't give you better info on the drugs before you take them. I'm an adult and think I can make good decisions about weather I want to use a drug that can have serious side effects.

    The neurontin did help at first, but like so many here, the drug loses it effectiveness over time. Then you find out you can't just stop the drug.

    Granted we may have to take a drug that has side effects, and weigh those side effects against the good the drug might do, but this is hard to do if we can't get good honest info from our docs.

    K.
  6. starmom

    starmom New Member

    This is just another reason to read ALL the info you can find on a med before you try it!!

    I had some very good results iwth topomax for migraines and long term depression. No pain help.

    I only took it at first after a lengthy talk with a psychiatrist. IMHO WAY too many other docs are prescribing heavy duty psychiatric meds!! My psych told me about the pros and cons. I was dealing with major family issues and needed it for the depression. The migraine reduction was a bonus and the weight loss was very temporary!!

    I stayed on it for migraine reduction until it became ineffective. The fog it gave me, in addition to fibrofog, was a real problem. I ended up taking my doses every other day. Daily doses of a lower amount were not working.

    IMHO ONLY psychiatrists should prescribe meds like this and zyprexa and many of the other meds our docs like to "try".

    That is one reason I keep seeing a psychiatrist. He prefers to try older drugs b/c the side effects are KNOWN!!

    Thanks for the heads up!!

    Susie
  7. Tibbiecow

    Tibbiecow New Member

    Neurontin and Lyrica can be very effective for reducing pain. I took neurontin until three months later I developed headaches as a side effect. I wish that I could continue taking it because it reduced the pain so well for me; I wasn't nearly so sensitive to EVERYTHING anymore!

    I would suggest that you find the patient leaflet on each of these drugs and read all of the prescribing information. (You can find prescribing information for any drug on the internet- I do mean the official version!) Use a highlighter pen to mark anything that you do not understand, or concerns you. Then phone your pharmacy, and make an appointment to speak to your pharmacist. She/he can, and will, help you to find out where this drug has been effective, where it has been ineffective, and will also know about the side effects. He also has access to real life 'adverse events' regarding any drug, meaning documented cases of serious problems reported by medical professionals, from people taking a drug. A good pharmacist is worth his weight in gold, and they DON"T CHARGE $$$ for talking to you about your prescriptions!

    Also, you should always ask your doctor questions about the meds he wants you to try, such as What is this med supposed to do? What are the potential side effects? How and when will I know if it is effective for me? Have you personally prescribed this med for your other patients ? If so, how many were helped and how many didn't tolerate it or saw no relief?

    We fibro types are all different. What is really effective for some of us can make others' problems worse. It is always a good idea to have an open mind regarding something that may help us. We must always add a healthy dose of enquiry, though , before we try ANYTHING, be it gentle water physical therapy, acupuncture, chinese herbs, or prescription meds. This board has a wealth of information, but be careful and do your own research.

    Good luck,
    Tibbie
  8. Hope4Sofia

    Hope4Sofia New Member

    So far I haven't had much luck with meds period. I just tried tramadol and can't tollerate it. I get nauseous and it causes my mind to race. Doc wants me to try Neurontin but I'm feeling cautious about it.

    I took prednisone in college. It never really helped. I've never had my heart checked to see if I did any damage to it during that time.

    Anyway. I'm trying to handle this with diet and supplements but it's difficult. I'd love a pill that works but so far - for me - nothing really helps. I thinks it's the whole chemical sensitivity issue.

    Sofi
  9. claudiaw

    claudiaw New Member

    Thanks for the info, I was going to ask my doc. about it, but now I won't.

    I alway's get all the side effect's with little to none of the benefit's. Sometime's I think my doctor and P.T> just think I am being difficult, but I'm not on purpose anyway.:)

    What has helped me the most, was adding muscle relaxer's. I hear alot about pain med's but not too much about muscle relaxer's.

    For me i was alway's "chasing" the pain w/pain med's, becauses my muscles were so tight.

    When I was able to address the muscle tightness, it helped decrease my pain.

    Now don't get me wrong, I take pain med's too. I nned both , but can go many day's ( if I take it easy) with muscle relaxer's only.

    I get wicked migraines, that migraine med's don't help, because they start out as tension headaches in my neck and shoulder's.

    I have built up a tolerence to darvocet, so i will be asking about another alternative. I am kind of nervous, because I know how doctor's are afraid of prescription drug abuse.

    i hate that a few people who have abused these make it hard for the rest of us. i would love to get off of all these med's.

    Anyway, I'll quit now.:) Just my thought's and opinion's.

    Wishing everyone the best (a pain free life!:),
    Claudia
  10. dancingstar

    dancingstar New Member

    I took Topamax for a while for weight loss, and it did work, I guess. I only lost about five pounds, but that was okay. It was also supposed to help with headaches and muscle pain, but I never found that to be true.

    During the time I took it, I went through a certificate program at UCLA and maintained a B+ average; so I'm not sure if it had any affect on my brain function or not. It's possible, and I did worry about it. I found memorizing to be more difficult..but I'm not as young as I used to be either.

    Actually, I believe Topamax has been on the market as a seizure med for more than 25 years. I was surprised that I didn't have any problems with it, but I didn't, though now that I'm off all meds except for hormones, heparin, and a pain med, I would never take it again. All of the meds that affect our brain function are scary to me.

    One thing it helped me with is that when I quit taking Effexor cold turkey, there were many times that I thought I might actually have a seizure, which was frightening to me, especially since I lived alone. Don't misunderstand, I've never, ever had one, but I was just so darn sick...and scared and thought I might die. I think Topamax might have actually helped to prevent seizures in that situation. My internist said that no one has seizures during the withdrawal from Effexor, but I've since read that many people actually do, which I didn't know at the time.

    I'm sure I'll never take it again at this point.
  11. Tibbiecow

    Tibbiecow New Member

    I knew that there would be several people for whom Topamax has worked well enough to truly change quality of life. I am glad to hear that most of you are well aware of the potential problems.

    I am genuinely appreciative that Topamax is available for the people that really need it. I don't want to see it taken off the market, but I would like to see a change in tha cavalier way in which it is pushed by drug reps and prescribed by doctors.

    I believe that it is Depakote that has been available and in use for 25 years. Drug companies that own the original patent release 'new' extended release versions to keep their market share when generics become available. I do not have prescription drug coverage and so I always work with doctors and pharmacists to get free samples, generics which may have to be taken 2 or 3 times a day, and prescriptions in a number which matches the supply bottle that the drug comes in. In one case, 30 pills cost $25 but 100 pills cost $7.89, because the bottle was sealed and they didn't have to count the darn things.

    yyznzn, I would certainly re-visit your depression, migraine, menopause and Topamax concerns with your doctor. I would make sure that you let him know that you have done some research about Topamax and depression- that it can help OR harm- and ask to be titrated off. Your doc may want to simply increase the Wellbutrin. In any case, don't change more than one med at a time, because you will not know which med change was the right decision! If your migraines come back worse with a Topamax reduction, you know the answer. But PLEASE make sure that you visit the depression issue.

    I found it very interesting, while taking Topamax, that even despite my severe depression my suicidal thoughts were very abstract. I didn't create plans to kill myself, I just kept thinking over and over about how the fibro and migraines were soooo hopeless and maybe suicide was an option. Weird- I don't want to kill myself, but I repeatedly think about suicide. When I talked to my DH, I pointed out the warning on the drug insert about suicidal thoughts and the fact that I was having them- he got me to the doctor RIGHT AWAY. I made sure to bring the leaflet to my appointment, and point out the Suicidal thoughts part.

    As for migraine prevention, my rheumy finally got fed up with all of the increasingly dangerous meds that I was giving trials being ineffective. The next thing I was going to ask him was for a referral to a pain clinic to be put on a narcotic full time- I had the research papers in hand even. My neuro would never put me on opiates. I never got that far, my rheumy said "I am SO tired of you being miserable in pain from fibro and migraines!" and ripped out his script pad and spoke with me for 1/2 hour about finding an opiate that would work for me. Fentanyl didn't, Methadone gave me my life back. It is unbelievable to me how the side effects profiles went from, OK, NEVER get pregnant on this stuff, it causes x, y and z serious problems that we will monitor you for, etc. to methadone- we will monitor you for addiction issues and you may get constipated. (Please don't tell me that an overdose could kill me. Almost any med overdosed can kill you!) My OB-GYN even said, hey, I have no problem with you getting pregnant and having a child on this med, you just can't breast feed and we will have to wean the child off the med slowly when it is born. (Before I found out I can't get pregnant...)

    Regards,
    Tibbie


    [This Message was Edited on 04/16/2006]
  12. Tibbiecow

    Tibbiecow New Member

    I know that some of you are considering using topamax.

    I hope that you do read about and understand the possible side effects first!
  13. texasmaia

    texasmaia New Member

    I actually went to my doc and requested it! I do, however, extensively research meds before taking them as well as any supplements. This was the reason I requested it.

    After suffering from migraines three to four times a week, I was desperate. My doc agreed to try it and I am on an extrememly low dose...25mg a day! Yet, at that rate I am still migraine free except for one every 2-3 months.

    It has been a godsend to me!

    You are very correct in your analysis of the drug and your fears are well founded. I see so many folks that appear to only get their information from this board and not do other research.

    It is imperative that folks take a thorough examination of things that are going into their body. Whether that be a powerful drug or a mineral. We need to be a strong advocate for ourselves, ....who else is going to be???

    Maia
  14. TxSongBird

    TxSongBird New Member

    I take pain med's only when needed, but I do take my Soma every evening before bedtime and get better sleep from it. I never take it when I have to operate a car, because it makes me loopy as all get out and I don't want to go to jail over that or kill someone by operating a vehicle while under the influence of a medication that can cause extreme dizziness.

    TxSongBird
  15. PepperGirl52

    PepperGirl52 New Member

    I'm not sure where you're getting this info, but it was originally developed for the treatment and prevention of seizures, just like neurontin and a few others that some of us use for pain control.

    I have been on a small dosage (25mg) for 2 years now, with no untoward side effects. But, when I did go up to around 100mg, my eyes would hurt and I'd get very blurred vision.

    I'd know then, that I had exceeded the dosage that was right for me.

    With the other meds I have on board now, I was able to lower the dosage of the Topamax down to just 25mg at bedtime, for nerve pain. Fibro isn't the only problem I have-I also suffer from a degenerating spine. And fortunately, no migraines; however, it is used to treat that, as well.

    ALL meds have dangerous side effects for different people, and most meds can be god-sends for others. As someone else said, we MUST be informed and aware before we put ourselves at risk.

    For most of us, the treatment and relief we get outweighs the risk that we take to live a fairly 'normal' life. PG
  16. mme_curie68

    mme_curie68 New Member

    I was on Topamax for about 6 months.

    I ended up having terrible problems with my cognitive function - not great in the best of times, but disasterous in my job. My term for it was "Brain Freeze" - it was like I got stuck in this loop for a particular problem and ended up obsessing about it all day long and unable to do anything else.

    When I described it to my psychiatrist, she told me that she was taking me off right away and that while it was a great mood stabilizer, her "higher functioning" patients seemed to be having issues related to cognitive processing.

    I had to switch and went through hell - because I'm bipolar, I have to go off Topamax and go on another at the same time. Even with careful titration I had the worst manic episode of my adult life.

    Now I am on Seroquel and Cymbalta only and the combination is working great for me - keeping moods level and brain functioning.

    Everybody's brain is different - where I had a problem, someone else may not. I would never tell someone NOT to try it because it might help them without the "side effects" I happened to experience.

    I have been on many of these drugs and what works great for one person is terrible for the next one. That's what makes treatment of depression, bipolar, schizophrenia SO DARNED DIFFICULT.

    Hugs,
    Madame Curie


    [This Message was Edited on 06/27/2006]
  17. Illusionznc

    Illusionznc Member

    My doctor put me Topamax. After being misdiagnosed in the past, finally diagnosed with bipolar 1 disorder and also suffer migraines. I have slowly been titrated up to 100 mg so far. The side effects were a bit disturbing to begin with up to 75 mg, but they all went away at 100 mg for me. The drug has worked great for my migraines. They started slowing in frequency and then at 100 mg they have stopped. I was in a car accident as a teenager and had head injuries, so the relief i get from the migraines is very welcome relief. The drug does nothing for the mood disorder though.
  18. Mikie

    Mikie Moderator

    Thank you all for your really important and informative posts. With our conditions, unfortunately, it's usually trial and error before we find things which help us. Always do research on any med you are considering and discuss it with your doc and pharmacist. I've gotten good and bad advice from docs and pharmacists so the research is really vital.

    Everything is always a tradeoff and there are no drugs without potential side effects. I always look at the potential risks versus the potential benefits before deciding on anything. By pooling our experiences, it provides anecdotal information to help us. Thank you all again.

    Love, Mikie
  19. tishyann

    tishyann Member

    I have been on Topamax since January 2017, (This is August 2017). I was actually prescribed it to help me stop drinking, which it has helped - a lot, plus I have lost 75 pounds. I had not connected all of the dots however until reading all of these posts. I am more irritable and more emotional, but I just thought it was due to stress and menopause. I am 51. My current does it 400 mg /day. There was a mention of Effexor, which I did try to get off of, Ha! won't do that again! That is a terrible drug and my body is terribly addicted to it. I am starting to have trouble with my vision, so I am going to get that checked, hopefully it is not due to Topamax. I stay very tired, even after the weight loss! I am just trying to take the bad with the good. So far they are running neck and neck.
    Good Luck to Everyone!!
  20. mainegal

    mainegal Member

    I have found Topomax to be very helpful for fibromyalgia. I initially started taking it for headaches and was hoping for some weight loss as well but it didn't help with either. It unexpectedly eliminated my muscle tenderness and for the first time ever I am able to wake up in the morning without an alarm and without feeling like a sleep starved zombie. After a few months I started to get facial tics and I really hated the cognitive decline so I tapered down my dosage to eliminate side effects. For me, I've found 50 mg. taken at bedtime is enough to preserve my new found restorative sleep and keeps my muscles from feeling bruised. I still have muscle soreness but now I can get my arm or leg squeezed without cringing.