medication Help Needed - A Complicated Case

Discussion in 'General Parenting' started by Josie, Jan 23, 2009.

  1. Josie

    Josie Active Member

    difficult child 2 has Obsessive Compulsive Disorder (OCD) and migraines. To try to make a long story short, her migraines were controlled at one point by Elavil. Then we tried to help her with her Obsessive Compulsive Disorder (OCD) with SSRI's. She tried most of the SSRI's and Anafranil and had enough side effects with each one that we gave up on that for a while.

    Some of the SSRI's required that she give up the Elavil. We have never been able to get her migraines back under control since then. We recently tried the Elavil again and it didn't seem to be helping but now that she is not taking it, she is complaining more about her head. Her head always hurts enough that she is unable to go to school or play with friends, etc. We took her off from it again because we were thinking it wasn't helping much and we wanted to try to work on the Obsessive Compulsive Disorder (OCD) again.

    We are starting with a small dose of Zoloft. She was taken off from the Zoloft the last time because it affected her appetite and she lost a little bit of weight. This was the first one we tried and we thought there would be success with another one. We are trying the liquid form with a small dose. Her psychiatrist is opposed to using Elavil with Zoloft. He suggests that we ask her doctor about Topomax for the migraines.

    I think her neurologist is ok about using Elavil and Zoloft together but since it wasn't all that effective, it wouldn't hurt to try something different. The last time we saw him, about a year ago, he suggested she drink more water and do yoga. The only reason I am going back is that I think he will say she can do the Elavil and Zoloft together or prescribe Topomax. But I am not even sure that is what we should do.

    difficult child 2 has another chronic health condition and I was told by that doctor's office that Topomax could cause weight loss, too.

    Both her headaches and her Obsessive Compulsive Disorder (OCD) are pretty disabling right now. Her headaches are keeping her home from school so her Obsessive Compulsive Disorder (OCD) is less of a social issue now, but if she were living a normal life, I think her Obsessive Compulsive Disorder (OCD) would be a big problem, too.

    Does anyone have any advice about this whole situation? Unfortunately, I think it is up to husband and me (mostly me) to figure out the right approach.
    Last edited: Jan 23, 2009
  2. smallworld

    smallworld Moderator

    What happened when she trialed Anafranil?

    Have you thought about going back to Elavil, possibly at a higher dose to target her Obsessive Compulsive Disorder (OCD)?
  3. Josie

    Josie Active Member

    You must have answered me while I was finishing the rest of my post.

    She tried Anafranil last. That made her have myoclonic twitching and feel sick. She had a low grade fever for weeks after that. The myoclonic twitching lasted long enough that they said it wasn't related to the medication. That was the beginning of what led to her Lyme diagnosis. It is hard to know if what happened was really due to the Anafranil or if the Lyme just kicked in hard then or what.

    Her psychiatrist doesn't want to try it again because it stimulates the nerves which are already under stress.

    Another neurologist told us to increase the Elavil for her migraines. I have never seen it mentioned for Obsessive Compulsive Disorder (OCD). In theory, it should help since it is so similar to the Anafranil. Her psychiatrist doesn't use it for that, though.
  4. totoro

    totoro Mom? What's a GFG?

    I don't know about the neurological issues. But for me Topamax has helped with my Migraines tremendously and it really does help with my anxiety, which makes Obsessive Compulsive Disorder (OCD) worse.
    Are you looking for weight loss? For me I lost weight in the beginning, then it just kind of seems weight neutral now.
    The cognitive dulling issues for me have gone away after time also.
    I can't take too high of a dose of the Topamax though. I was at 400mg I think and had to back down to 200mg, now I am at 100mg which seems to be the best for me.
    Good luck.
    I use Lamictal and Topamax together, but I have BiPolar (BP)...
  5. Josie

    Josie Active Member

    She is already on the thin side. Zoloft made her lose weight before, so adding 2 medications with possible weight loss as a side effect doesn't seem very promising.

    I am interested to hear that Topomax helped with anxiety.
  6. eekysign

    eekysign New Member

    My roomie has has bad childhood migraines since she was a kid---they tried the whole gambit, even things like Darvocet to give her peace. Nothing worked.

    She recently got a script for a blood pressure medication---not sure the name---which is finally helping with them majorly, except for the hormonal ones pre-period. I'll find out what it is, if you want me to. :)
  7. Josie

    Josie Active Member

    Sure, I will take any suggestions.
  8. totoro

    totoro Mom? What's a GFG?

    I believe it was Toprol. It is a beta-blocker. Or Metoprolol I think it is called.
    It does cause weight gain usually.

    My Neurologist loved Toprol. I didn't like it due to the weight gain and the slowing down of my heart, and lowering of my Blood Pressure which is already low.
    Some people take Beta-Blockers prior to a public speaking engagement because it helps with anxiety by slowing down the heart.
    I don't know how this would work long term?
    It does say Mental Depression may be worsened by Beta Blockers.
    This may have been one of my reasons why I did not like them?
    I took them many years ago. Hmmm
    I just remember not liking them.
    But I was at the Diamond Headache Clinic in Chicago and Dr. Diamond used Toprol in particular a lot!
    On his website he goes into a lot of the medications I think.
  9. susiestar

    susiestar Roll With It

    I have had migraines since I was 4 years old, Wiz since he was 2 and Jessie since she was 3. There are several classes of medications that are used to prevent migraines. Some are older drugs with side effect profiles that are better known, some are newer medications that we are just learning about. These are NOT medications to take to get rid of a migraine when it hits, but medications to take daily to keep from getting migraines.

    The first class of drugs are beta blockers. These are blood pressure medications and they DO lower your blood pressure. It is often helpful to remember to sit up and stand up slowly, esp the first few weeks on the medication. Propranolol, metoprolol, atenolol are all some examples of beta blockers. One advantage to beta blockers is that they are usually VERY inexpensive (last time I got atenolol for husband's blood pressure it was under $3 for a month).

    The next class that is usually tried is calcium channel blockers. Verapamil is the only one of these I know off the top of my head. These are also usually avail in generic form.

    After that the tricyclic antidepressants like elavil are usually tried. There are a number of these. Liquid elavil or doxepine can actually be titrated to a very small amount, or with small adjustments in amount taken daily. They are also used for fibromyalgia the same way, with the dose changed a bit each day depending on how you feel.

    After these medications have been tried, then anti-seizure medications like topomax, neurontin and lyrica are tried. Even depakote is sometimes tried.

    Most of the people I know with chronic severe migraines do NOT get sufficient help from SSRI's and SNRI's for migraine prevention. Effexor was marketed as a migraine preventative for a while and was NOT successful for anyone I know who tried it.

    I would encourage the doctor to start with beta blockers and to let your daughter try several different ones if she has problems with one. It truly is the safest class of medications for prevention, propranolol (Inderal is the brand name) was considered the gold standard for migraine prevention for years. Then I would work through the medication classes in the order I listed them, unless there is a compelling reason to not try a certain type of medication.

    Going for topomax right out is maybe not the best way to handle it. It truly has some amazing side effects. And it is rare for teh cognitive dulling to go away, though it does for some people. But if you can take a medication with less side effects, one that has been in use for decades, so more is known about it, it seems safer to me. And it is what we have done with each of my children.

    Docs want to go ahead with topomax or neurontin or depakote because they hear more about these. The drug makers put $$ into advertising these medications, esp for new uses, because they make more $$ off of them. But it surely doesn't help you or your daughter to trial her on a medication that will cost several hundred dollars a month and can have very serious side effects like weight loss, seizures, etc.... (neurontin, topomax and lyrica are antiseizure medications and if you skip a dose you run the risk of a seizure).

    That is what my neuros have always told me, I hope it can help you. You might look at the list of medications that Walmart has on their $4/month or $10/3 months list before you go to the doctor. Then you can ask if you can try one of those medications first to see if it works. Otherwise, check your insurance co formulary. They may have limitations or forms that have to be filled out for topomax or lyrica or other medications.
  10. Josie

    Josie Active Member

    She did try one of the beta blockers last summer and it didn't help. Does that rule out all of the beta blockers, do you think?
  11. susiestar

    susiestar Roll With It

    From what I have gone through with my docs over the years, having one beta blocker not help does NOT mean that all the beta blockers are useless. I get OK results from atenolol, NO results from metoprolol, and usually great results with propranolol - though over time the propranolol dose has to be increased until I max out on the dosage, then we try another one for a while.

    Unless she has some strange reaction like the extrapyramidal reaction my Jess got from elavil (amtryptiline), then I would push the doctor to try another beta blocker and to give her several weeks to find the right dosage and get that level in her system. Beta blockers don't work the day you take them, it takes time for them to work. And the starting dose may not be enough, so it does take some patience.

    I guess i am just more inclined to try several because they are not as likely to have the serious side effects that topomax and depakote and neurontin and lyrica have. Right now I am just on lyrica, but I am taking it for a totally separate reason, the migraine control is just a side benefit.

    There are also a number of calcium channel blockers and tricyclic AD's that can work.

    Not sure how these will impact the Obsessive Compulsive Disorder (OCD), that is a ??? for the neurologist. but make him explain WHY he recommends certain medications, because sometimes it makes good sense and sometimes you need to further discuss it.
  12. Josie

    Josie Active Member

    After reading all of this, I think I will look for a different neurologist. It seems there is more to try than what her neurologist does.