Anti seizures are given for migraines?

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This topic contains 14 replies, has 8 voices, and was last updated by Profile photo of Hillhaven Hillhaven 1 day, 19 hours ago.

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  • #382017
    Profile photo of Semandowns
    Semandowns
    Participant

    Hey everyone, I would like to get a bit of your help, my daughter’s (who is 16 years old) pediatrician is now seriously thinking to put her on some anti seizure medications and my doctors thinks to do so because in his opinion, those medications should be helpful for her to control her disabling headaches that she’s suffering for a long time now and it seems that there is nothing that can help. And I say that because, yeah, she did has been on numerous other stuff that I barely accepted either and I really didn’t liked them and now I don’t like them even more as I had to get my daughter take them and they were still not helping… and yeah. We have also put her through absolutely every medical test that it is known to man in order to check it out that she is having no physical concerns that would be causing her to suffer from those headaches (from as much as I have learned, there might be a big number of physical things that might be responsible for those headaches, and that is why we have already had multiple MRIs (they were not believing that on MRI test they do not see anything, EEG, Blood work (of course, lots of them as well), yadda, spinal tap, yadda and yadda etc. etc. no test shows anything and I am idealess of what I should do and how I should feel.

    I am now wondering if here is someone who is having some experiences with all of this. Or maybe some of you is having some advices in regards to this problem I have? I would really appreciate if any of you could help with this, if you could really tell me something more about the anti seizure medications? do you think that this is a good idea? Or you think that this is not a good idea? Also, I want to ask you something more about what are the side effects of the anti seizure medications? what are the risks of taking them? Are there any bigger/ severer side effects with the anti seizure ones than other stuff intended to help with headaches and pains of such kind? I am going to appreciate absolutely every single of your words here… I am so afraid for my daughter and when I see that there’s nothing to help her… that’s killing me.

  • #382020
    Profile photo of lawyn100
    lawyn100
    Participant

    I do understand why you are wondering here about this and I really do think that it is a very good idea that you are doing this. However, I must tell you that I really doubt we could help you very much if you are not going to answer some questions that I have for you, such questions as: what are the anti seizure medications that have been discussed so far with your daughter’s doctor? The reason I ask this is that we just can’t tell you what are the side effects of anti seizure medications at all, there are side effects for each medication individually and if you are going to share the name of the anti seizure medications that you have been discussing with her doctor then I think that we could help you more by saying what are the possible side effects. What I am sure about is that if her pediatrician is recommending some medications for your daughter then most likely that it is safe, that should be safe for your doctor. But anyway, I do understand your concerns so just tell me here what it was recommended to you? Also, while being there… has her doctor explained to you the chemical process in the entire terms of what would happen in order to prevent the migraines that she has? So, from as much as it seems from your post, it does seems to me like the physical symptoms were ruled out, from as much as I see, so normally there shouldn’t be anything physically which means that there’s a problem in her brain… but, to be honest, this is surely not surprising, the causes of migraines are being elusive and I really hope that soon you are going to rule it out.

    Also I want to ask you something else… is that doctor recommending her a single med approach (just an example only, Depakote – only one of those very many anti seizure medications out there alone, or a benzo). Or your doctor is recommending you to have a multi med approach for your daughter (like for example a benzos in combination with a stim)? And yeah… also, you’ve gotta mention here one more thing… I mean, what did she tried in the past and what were the effects? I mean, I understood that it was not helpful for your daughter but… overall? Did she also got side effects or not? I am just trying to help you and your daughter but without answering these questions I doubt that we can help. In general terms I can tell you – anti seizure medications can work wonders for some but they can also get your life ruined… that varies from a person to person, from a medication to medication and situation to situation plus to that I am sure that her doctor is going to pay big attention to the dose that she is going to be put on.
    Oh yeah, one more question that I just remembered… what is triggering her migraines? Just in case this has been identified? Maybe there are something that you have noticed that is triggering them? What does she say? Really hoping that it would be helpful!

  • #382021
    Profile photo of Semandowns
    Semandowns
    Participant

    Yeah, indeed, those are all very and very good questions that you can present to the doctor… I mean, some questions that I should present to the doctor myself now in this situation of mine… and yeah… if you ask ME then I must tell you that he has not discussed with us in regards to what mediations he is considering to give to my daughter. The only thing what I can say in regards to the physical abnormalities is that the radiologist who has read her first MRI has later reported an abnormal growth on her pituitary gland, that was the only one, but therefore the reason we were just kept on being sent to a neurologist for getting multiple tests. They couldn’t rule it out surely and so they started to ‘develop’ this idea more and more. Anyhow, then later a follow up MRI which was a year later has showed that she has no change in her pituitary gland. However, my daughter still continued to have the migraines. I’ve gotta say that we did have been instructed at our last appointment to keep a food/ fluid/ migraine journal in order to at least try to learn what might be triggering her migraines. I also must say that her pediatrician has indicated on the fact that in case we would not be able to identify any specific trigger (or maybe triggers because we were told that there might be multiple ones) then he is going to prescribe an anti seizure medication (but as I have already said it earlier, he has not mentioned which one exactly and I have not thought about asking him about this). So well, without really digging very much through the records myself, I just cannot outright recall the exact names of those 2 medications that my daughter has been prescribed so far… whatever th case, as I already mentioned it, none of them has worked for my daughter… of course… if any of them did then I wouldn’t be even writing this and I wouldn’t be searching for an answer anymore. I must mention here that the only ever treatment that has ever worked for her it is one combination a ‘cocktail’ that they have inject her with while she has been in the ER during the time when she have had some extremely bad and even disabling migraines (which, from as much as I know, it does includes Benadryl, ibuprofen as well as caffeine and if my memory serves right, there were something else too, however I am not very sure what other). However, I just know (and I have never been more sure than this) that it would be just so so so much more beneficial and more ‘helpful’ to prevent her from getting those migraines/ headaches she gets… rather than to just treat them after the fact. And I can feel that there IS something that we can and that we must do in order to make those migraines stop appearing anymore. To prevent them.. but it is just the thing that I am not sure what we can do in regards to this…

    Anyhow, I must mention here that my concern (my biggest) concern here is whether or not the anti seizure medications might be really bad for my daughter or not…. I am very afraid of this… I am afraid that this could create some very serious side effects for her and I would, of course, wish to prevent this from happening if there are such risks… what I think that those things might be doing a good job with a migraine or 2 per week, however I am afraid that it might be more harmful in the long run. What I ry to say… if taking it for like once or twice (like only a few times per year) then this might be safe. But if taking it every week 2 times then in the long period that might pose a problem. Not sure if it would, again, but I am afraid of this.. as any other parent, of course, I just want to be sure that my daughter is safe. I also can say that we are going to continue on writing the journal, I do feel that in the end, that journal is going to be helpful and I will try my best in order to check if there is anything (any trigger) that can be identified which would be really helpful if we would and then, after that, we are going to start on asking a LOT of questions before we are going to be agreeing to get any kind of anti seizure medication for my daughter. And, as you said, I am going to learn as much as I can about the specific medication that the doctor would say to start my daughter on. Thanks for everything, hope this is all going to end soon.

  • #382022
    Profile photo of Pringre
    Pringre
    Participant

    Hey there OP, you should know that first off you need to know what you are exactly talking about (or better said, what your doctors is talking about) when saying anti seizure medications. the reason that I ask this is that the hospitals as well as there are some doctors who are considering Ativan to be an anti seizure medication as well, however I am currently on this medication and I take it for my anxiety and to be honest, I have big doubts that it is primarily considered an anti seizure drug.
    Anyhow, what I can tell you about is that it indeed does calm one down if it is taken in some small dosages and it is also can be really helpful in easing the headaches as well that I am having as well, or at least, that’s what I have noticed and the effects that I noticed I get from using it. What I can say with certitude is that I personally surely would not recommend you to let your so young daughter (who is only 16 years old) go on any kind of benzo related medication… I might be wrong, I am not very sure as I am not an expert here, however I am thinking that this is just way to risky and not worth it, but then again, I am not a professional and I do think that you’ve gotta do it all the way her doctor tells to do.

    However, if I would be you and if he tries that I would surely ask for something that it is less benzo like. Not sure if this is going to help you but I hope so…

  • #382023
    Profile photo of Semandowns
    Semandowns
    Participant

    hey there, thank you very much for your answer, I appreciate it a lot. I just wanted to ask you… how many different medication categories are existing (basic chemical used) for use as an anti seizure medication? If this question is making any sense at all… if you understood what I tried to say and you would answer it I would be really thankful… pretty much as I already am. All the best of luck to you.

  • #382024
    Profile photo of Pringre
    Pringre
    Participant

    Oh well… from as much as I know about all of this… the benzodiazepines can be used or another kind (which, unfortunately, I cannot remember the name of that kind) and that is why I am thinking that there are just 2 types of medications that can be used….

    I do think that you are also able to combine those 2, however I just think that this kind of combonation is going to be very and very potent (way too potent for your daughter) and this is the reason why I personally wouldn’t really recommend for your daughter to try it out! I hopes this makes any sense and it would be for any help for you.

  • #382025
    Profile photo of Fujiwara
    Fujiwara
    Participant

    Hello there OP, I am not an expert neither here, however I still do think that your daughter’s doc might want to consider to put your daughter on Topamax. I think this way because I personally do have migraines and I personally have used specifically this medication called Topamax in order to controlled those migraines and I can tell you that it did has controlled them pretty well. And trust me I am not the only one who benefits from it… from the research that I have done I have seen that this thing is also helping a lot of other people to deal with their migraines as well so I do think that it must be a really helpful medication for the headaches/ migraines. At least it was for me as it worked… or kind of… I’m just trying to say that I still have had a few migraines… perhaps there were fewer migraines that I have been getting but generally, I have been fine. What made it worse for me is that it has been having some quite strange side effects that I could not bear with. What I am trying to say is that I have lost some weight (great thing… however…) due to the fact that I have been feeling a little bit of queasy very often, I have also been having heartburn very and very much, it was extremely often for me and that’s especially taking in consideration the thing that I have never ever had a heart burn in my entire life…. The first time I felt one is when I have been on it… I didn’t even knew what it is…. And one more ‘strange’ side effect that I must mention here is that soda, for me, has been tasting pretty much like metal or something, that’s super strange for me… in addition to that I must say that my breasts have also been aching too (why would they?) and I have been overall feeling spacey too (even though I am thinking that this might be me only… not sure if that’s the medication so not trying to blame it all on it only). Whatever the case, if I would be you then I one would much rather only use a fioricet whenever I am having a headache much rather than to be on some kind of a strange medication… fioricet does it good, I mean, it does the job very well… however, I can tell you here that I am having headaches like around every 2 or maybe 4 weeks and that is why I can tell you with certitude that fiorocet is working for me and my migraines… or at least it usually does. With the help of this stuff I am able to do a lot much more and with less headaches… I mean, now, I am missing maybe around 3 days of work in a full year because of those insupportable headaches and to be honest, I really just did not see the Topamax changing very much this equation. I am really hoping that this is going to be at least for any help to you. Not sure if what I say will or will not help you, however I just told you what in my opinion is going to be the best option for you.

    And yeah, not sure if this is going to make any difference at all but I can tell you that I have had migraines like this since I have been around 10 years old or so… I remember I was having them when I was really young and trust me I did have tried to rule out any physical symptoms. Lots of doctors were thinking that it could be something with my brain, with my glands and even with my back thinking that I might have scoliosis or something which can give me headaches. No… lots of tests have proved that there is nothing wrong with my glands, nor with my brain or anything… I am all fine. It simply is what it is and that’s it. Maybe something deeper that doctors so far can’t understand. maybe it is genetics. I don’t know… that’s just it.

    Some days of work because of the headaches per year and I simply did not see the Topamax changing this equation really really much.

  • #382026
    Profile photo of Ewan
    Ewan
    Participant

    So well… I have tried to persevere with the Topiramate for my migraines for a really long period of time. My neurologist just kept on getting the dose of that stuff higher and higher and hoping for efficacy… that’s until I have already reached a dose of 250 mg per day but I tell you – don’t try it out yourself. This is nothing you would want to get through. I am not sure if someone else feels fine on such a dosage… but I have found out that this amount of this drug is completely and fully poleaxing… but then again, at least personally for me… I just couldn’t word, find properly and worst all… it sent me in to an unbearable depression… it was so SO bad that I never even knew that a depression can be so… bad it was so bad that I have been suicidally… I’ve never been like that in the past. It was obvious that it already got all too far, it would have been much better if I could have stopped it earlier…

    I am currently taking clonidine permanently and then when a migraine is still appearing (but it does appears from time to time, although by far not as often as it used to appear in the past), I just try to keep it under control with the help of Dihydrocodeine and I’m fine.

    I must say here that I do know very well that Topiramate is working very and very good for some people… however it did not work for me, unfortunately (because I would be happy if it would) and also, due to the fact that I have had cerebral haemorrhage around 6 or so weeks ago I just cannot take Triptans or Ergotamine either and so… I am pretty much left with nearly no other option…

  • #382027
    Profile photo of Semandowns
    Semandowns
    Participant

    Hey, I just wanted to say that I am so so so much thankful for everything that you have done here for me, for every word and every information, I appreciate the input a lot. I can tell you that I have also been reading some information in other threads and on others sites as well in regards to migraines. In fact, I can tell you that I am now reading everything that I just am able to find about it. I want to learn everything about it, I want to know everything. And as much stories in regards to migraines as it is possible. I feel that this is going to help me. I feel that by knowing all the information and by knowing as much stories as I can – that would help me to understand it better and to make some kind of a statistic that could, ultimately, help me as well. Also I should say that it occurred to me that I do not believe that we have had any hormone testing done for her so far (but as I said it earlier in my previous posts, she has been put to subject to absolutely every single and other test that exists on this planet,) however when I was checking around what tests she has done and what tests are possible to do, I just realize that I don’t really know if that has been done. Anyhow, I am currently hoping that I am going to be able to explore as many other options as it is possible before I am even going to consider to get such kind of strong/ potent medications for such a young and dear person for me. But we all perfectly know that giving strong medications to young people that’s beyond risky. I must tell you that based on all of the above comments that I have read earlier, I am starting to get even more concerned now than I have previously been about putting my daughter on the anti seizure medications… not even sure why, but this is just the way I am feeling and I really don’t want to risk with my daughter’s health…

  • #382028
    Profile photo of Takalond
    Takalond
    Participant

    Wow, that’s just an amazing coincidence… I mean… everything (and I mean absolutely everything) that you have described up there in your original post it is the exact same thing that there’s a family friend that has been going through with her, (back then she was exactly 16 years old as your daughter) and now it is her 17 years old daughter. As I said, everything exactly as it was with you: she has done absolutely all tests known to man. All of those tests, the ER trips, the meds and so on and so forth. Everything. They have done it and exactly as you said, absolutely all of this for no avail. Well, in the end, at some point they have suggested her to take anti seizure medications as well (kind of like a last resort or something), both were barbiturates; common for the treatment of seizures. Well, to be honest in regards to her results… those side effects that she has got have been more than she could handle in her day to day life.

    I must say here that I am very sorry to speak before I can give you the out come, however, she is in the service right now and they do seem to be under control. However, be sure that I am going to contact this friend I am talking you about here as soon as possible and I am going to ask what you need. I will find out for you what they finally ended up doing for their daughter who seemingly has the exact same issue that your daughter has (and both pretty much same age). However, I just felt as if I had to post something here, that’s pretty much because it does sounds to me like you have been describing that young girl up there I am talking about. I am being very and very curious about all of this now.

  • #382029
    Profile photo of Semandowns
    Semandowns
    Participant

    Oh wow… if you could do that for me that would be just amazing, please do it, I will appreciate it a lot and be sure that absolutely any thoughts/ ideas are completely welcome! Thank you for saying at least what you posted… although there is no ‘answer’ you still gave at least a bit of hope by at least knowing that we’re not the only ones getting through this.

  • #382030
    Profile photo of Takalond
    Takalond
    Participant

    As I have promised that I am going to contact my friend asking her what they are doing and come back here with an update – here I am keeping my word. And so… well playful, that young girl that I have been talking about in my previous post is now using Topomax, as very have had taken at one time. They did mentioned that she is still having migraines, however they are not by far as many as they used to be prior to take this medication. Also they said that some are not as severe either. I just can guess that the benefits are out weighing the side effects that she gets, for that young girl.

    Also I must say here that the young girl and her mother are talking often, and I am going to call after she is going to speak to her personally. I am not sure if there is anything else that I can add here, however I am going to make sure that I will let you know if there is anything else more that I can pass along here and maybe it will help you. Good luck to you and I really wish that your daughter is going to be safe and healthy.

  • #382031
    Profile photo of Quarles
    Quarles
    Participant

    I can tell you that I have been prescribed Topamax for my migraines for quite a while but then later I have quit using it… it has been way too expensive for me and I have found botox in the areas around my stress points to do a better job and I have been having no side effects only except for looking better and that’s it. I’ve gotta tell you, Topamax is having some several really strange side effects possible to appear to your daughter if she uses it. But she must firstly try and see, I think.
    Also, I can tell you completely sincerely – I’m very sorry that your daughter is getting them (the migraines). I really am. I have been started to get the migraines since I have been a younger age than your daughter. By the way, if you are interested, fioricet really does help pretty well for onset as well, I would suggest to look at this more. Maybe in the end you are going to have the actual CAUSE that makes your daughter have the migraines and you would be able to exacerbate it. Good luck to both you and your daughter.

  • #382032
    Profile photo of Semandowns
    Semandowns
    Participant

    Takalond I just wanted to make sure that you do know how important it is for me to let you know that I am very and very thankful to you for the follow up information, it is so important for me that you discussed with your friend and updated for me. That’s amazing! Thanks! I must say here that it is surely nice to see what other people in these quite the same circumstances as we are now are choosing to do because, such kind of choices are really hard and that’s because we all know that this is life changing.

    Anyhow, I do perfectly understand that at some point out there, I am 100 sure that we (and mostly she) is going to have to weigh the med risk on a balance with the pain. It surely seems to get a bit more harder and harder as she has been suffering for at least one migraine per week for approximately the last 2 years now and I guess it is no need to explain how hard it is for me, as her parent, to see her suffering like that… it’s, at least heart breaking…

  • #382035
    Profile photo of Hillhaven
    Hillhaven
    Participant

    Hi there OP, I am not very sure how much I would help you with this post of mine, however I am speaking from experience from my absolutely worst migraines that I have ever had. They were so so bad that whenever I was getting them, I knew that my day is over. I was not literally able to do anything at all. The pains were taking over me. It is obvious that I was trying my best to either control it (prevent them from appearing) or to get rid of them as soon as they appeared. However I couldn’t do it. I wasn’t even touching it. The pain medications that I have been taking all along with all those benzos I was taking have been doing absolutely nothing for me, as I said, they were not touching my migraines. I have been put on the gabapentin as well as Elavil (which, by the way, was absolutely knocking me out), however it did worked nonetheless. Not trying to say that this is the combo that would absolutely work for you or for anyone else out there, but it did for me (when, again, migraines were insupportable) and that is why I think that it might be worth at least trying it out and see how it would work for you. Best wishes.

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