oh...help..anyone have reaction to Topomax

Discussion in 'General Parenting' started by Kjs, Dec 25, 2008.

  1. Kjs

    Kjs Guest

    difficult child has suffered such severe headaches for so long. It hurts to know I cannot help him. He has had every test possible. I refused the pediatricians request to go to a pediatric neurologist. Did that for two years. Did tests and put him on topomax for about two years. didn't help so he quit. Weaned off.

    Well with the recent headaches he was put back on Topomax. Pediatrician called the neurologist for advice. Started at 25 mg's, then suppose to go to 50 after a week.

    Well, I need to back track a bit here. For several months difficult child hasn't been feeling well. In addition to headaches he has been throwing up. He takes excedrin almost daily for headaches. Dr. warned him it can cause ulcers.
    He IS very careful to eat each time though.

    His anxiety is out of control. He thinks he is dying all the time. Every ache or pain he thinks he has Cancer. (they are doing the chapter in honors biotech on cancer). It is non stop thinking he is dying. Afraid to leave the house.

    I did write previously about the reaction and not being able to breathe last time we were in E/R for headache injection. He actually asked the doctor if he was going to die. Then made the doctor promise.

    Well, a week ago he was going to spend the night at a friends. About midnight he called husband (I was working). Said he was feeling funny. Didn't know where he was, what he was doing, can't comprehend things, dizzy, light headed, on and on.

    That was Friday. It is still like that but not to the extent. Getting better each day. But what I did was stop the Topomax. I talked to the pharmacist on my way home last Saturday and he printed out all side effects. Everything he was describing. However everything he was describing also are symptoms of Generalized Anxiety Disorder (GAD).

    Called his Dr. on Monday. He called neurologist and called me back. Yes, take him off Topomax. He is still on the very low dose so it shouldn't be a problem. However, the goal here is to get headaches under control. Now we don't know what to do. difficult child is SO full of anxiety it scares me. Every bump. He touched his head and had a sore spot and thought he had a brain tumor. Each doctor, including ER and dentist and pediatrician have ALL said how smart he is, in conversation. His mind is always going and always worrying though.

    Could Topomax DO that? He was on it with no issues before.

    Also, he turned 14 nine days ago. No signs of puberty. NONE. Dr. did a zillion blood tests. Seven tubes. He reported all normal. Testostorone shows "he is out of infancy and puberty should be within the next year".
    That is a long time for a kid in High School who hasn't grown and voice hasn't changed.

    I think if he isn't back to normal I will call psychiatrist. But he has us in and out in a matter of 10 minutes if not less.

    I am so scared for him. Hoping it is the Topomax.
  2. SomewhereOutThere

    SomewhereOutThere Well-Known Member

    Hi there, hun.
    I have had the most extreme side effects from medicines that one can have. I am VERY sensitive. I was told that what I had was anxiety and NOT side effects to certain medications too, BUT IT WASN'T TRUE. I could tell the difference between my anxiety problems and the weirdness I felt on certain medications. This is my advice as a layperson who has been there/done that. If you think your son has changed from the medications, wean him off quickly. Then wait until it is out of his body. That's the only way to tell if it is the medication. I've had a few medications that made me far worse than better. Some made me hallucinate. The doctors always said it was "anxiety." It is easy to blame everything on that if you already have an anxiety disorder. As an adult, I knew better and just stopped taking the medication and I was always right--always felt better after the drug was out of my body. I know that Topomax can cause severe cognitive dulling. It can probably also cause confusion. There are other medications for headaches. Ask for something else. Here are side effects from Topomax that I found on the internet.

    • More common side effects may include:
      Abdominal pain, abnormal coordination, abnormal vision, agitation, anxiety, appetite loss, back pain, breast pain, chest pain, confusion, constipation, depression, difficulty with concentration, difficulty with memory, dizziness, double vision, drowsiness, fatigue, flu-like symptoms, indigestion, language problems, leg pain, loss of coordination, menstrual problems, mood problems, nausea, nervousness, nose inflammation, rash, sinusitis, slowing of movements, sore throat, speech problems, tingling or burning sensations, tremors, weakness, weight loss
    In children, the more common side effects are abnormal gait, aggressiveness, behavior problems, confusion, constipation, difficulty concentrating, difficulty with memory, difficulty sleeping, dizziness, drowsiness, fatigue, increased muscle movement, increased saliva, injury, loss of appetite, loss of coordination, nausea, nervousness, nosebleed, pneumonia, rash, speech problems, urinary incontinence, viral infection, and weight loss.
    Other, less common side effects in children include allergic reaction, digestive inflammation, increased thirst, skin disorders, slowing of movement, vaginal discharge, vision disorders, and weakened reflexes.
  3. smallworld

    smallworld Moderator

    I'm sorry your son is still suffering. I agree that it could be the Topamax. But after he's weaned from it, I recommend a thorough re-evaluation by a psychiatrist and pediatrician neuro (you may need new docs because these ones aren't getting at the bottom of what's going on). Vomiting, by the way, can occur as part of anxiety and/or migraines. It sounds to me as if your son needs to get both his anxiety and his migraines under control.

    Propranolol is a medication that will treat both anxiety and migraines. My son's migraines were not controlled on anticonvulsants (Depakote, Topamax), but he's done very well on Propranolol.
  4. klmno

    klmno Active Member

    Hi, no advice on the medication but wanted to suggest a thorough and complete physical by a pediatrician, too. Just to make sure something doesn't go un-noticed that might not fall in the specialty range of psychiatrist or neurologist- unless the dr you are referring to that had blood tests done was a pediatrician. Have they done a sleep-deprived EEG?
  5. ML

    ML Guest

    I wouldn't worry about the pueberty thing, everyone develops at their own rate. Kind of like our periods, some of us get them at 11 and others not till 15.

    I hope that the weening off the T helps. I'm really sorry to hear that he is still suffering. I'm saying prayers and visualizing healing white light around him.


  6. Nomad

    Nomad Guest

    Here's my "short" answer...
    Topamax is the medication I love to hate.
    I love it 'cause it has really helped my headaches. I hate it cause it has nasty side effects.
    For me, I try to take the MINIMUM dosage that will help me.
    I do whatever I can to help my headaches get better in other ways.
    Together, small dosage of Topamax plus other things has been beneficial.
    It is not perfect, but it is a nice alternative.
    I am grateful to Topamax, but don't be fooled into thinking this is a safe/easy drug.
    For me personally, I didn't care or appreciate the "duh" factor....meaning it makes me have ADD/memory type issues.
    I'm even taking a small amount of a second drug to help with that since I'm in school. UGH!
    Again...I DO appreciate the headache help...it is a weirdo drug.
    I say...take the lowest dosage possible to help the situation at hand, experiment with other things to add on to help your situation and monitor closely.
    Hang in there. Hope this is helpful. Happy Holidays!
  7. Steely

    Steely Active Member

    Topomax was just added to one of the FDA's list of medications that can cause suicidal ideation. It is very, very rare - however - if he is feeling psychologically worse on it, then heed that and get him re-evaled.

    Can he not take Imitrex for the migraines, or is he too young?
  8. Kjs

    Kjs Guest

    I really appreciate all your replies. Helps put MY mind at ease. I feel bad, sometimes when he asks a million times if he is dying, I try telling him to quit worrying because you cannot change anything anyway. But sometimes I just blurt out, there is nothing I can do to help you. Just to answer a few.

    He had a complete physical. totally complete. Including 7 tubes of blood to check absolutely everything.

    He did see a pediatrician. neuro from Childrens Hospital of Wisconsin. He did a 48 hour eeg. MRA, MRI, CT-scan. All normal.

    difficult child is getting to the point that even though he doesn't feel well, he doesn't want to go to the doctor because they do all these tests and it is always normal. HOWEVER...he worries he is dying. ALL the time. He asks every doctor he sees. What does he think???they are going to say YES, you ARE dying. Geez. I remind him that ALL tests are normal.

    Thank you all again. I feel much better.

    Merry Xmas. I am getting ready to pack up and go home. Still have 35 minutes though. Then an 45 - an hour commute.

  9. susiestar

    susiestar Roll With It

    I am sorry he feels so bad and is so worried. It is SCARY to hurt for long periods of time and not know why.

    If he is taking excedrin daily he NEEDS to STOP taking OTC pain relievers fro several WEEKS. He likely is having rebound headaches. His body gets used to having the excedrin (or aspirin or motrin or aleve or tylenol) and then when it doesn't have it the body creates the symptoms to get the medicine.

    the headaches are REAL. They have some cause that is NOT rebound. i truly believe this.

    BUT the excedrin /pain reliever on daily basis IS causing rebound headaches. do a google search on that, you will find interesting info.

    In past messages I have given you lists of medications that help prevent migraines. If you want them and didn't save them I will retype them. If you don't, well, I do send hugs.

    it hurts to see your baby hurt.

    I think maybe some medications to treat the anxiety might treat the headaches too. Also, have you considered massage therapy or accupuncture? They can be quite effective, esp if you are sensitive to medications and/or can't find a medication that works.
  10. Nomad

    Nomad Guest

    I agree about Exedrin. I'm a long term headache/migraine person.
    I will only take Exedrin once in a great while. I know that I can't take in regularly at all. That Rebound situation is horrible and it takes a very long time to get out of it. I daughter not seem to get Rebound from Imitrex...although I suppose it is possible if I were to take it every day for many, many days. It just seems that I have much more leeway with Imitrex.

    The low dosage of Topamax has been a helpful preventative for me. I also take co-q10, the B vitamins, calcium, magnesium and the latest word is high dosages of Alpha Lipoic Acid might be helpful. There was something on the Life Extension Website about it (LEF)...if I have a moment, I will try to post a link later.

    in my humble opinion, for a severe problem...a small amount of Topamax and perhaps a small amount of a second prescription (Propranolol, Elavil) combined with the natural products could prove very helpful.
  11. gcvmom

    gcvmom Here we go again!

    Was he having any of his symptoms during the 48-hour EEG? I ask because a negative EEG doesn't necessarily rule anything in or out, and I'm thinking that if he wasn't symptomatic, they wouldn't have caught whatever event is causing his problems.

    Sometimes seeking an even more specialized specialist is necessary -- perhaps a neurologist that specializes in neurovascular issues, or an epilepsy specialist? They would have more targeted knowledge than a general neurologist. Does your son see a psychiatrist? What does he say about this?

    Keep pressing for answers like you are. It's the only way he's going to get relief.

    I hope you can make some progress for him soon! (((((HUGS)))))