Posts Tagged ‘Topamax’

Return of the Dizzy Dame

October 5th, 2009

Wooo! The world is spinning! No, it’s not really much fun. A year ago when I was first seeing my former neurologist I was being evaluated for vertigo, which I was experiencing very frequently. I had an ENG (Electronystagmogram) – a test to determine if my vertigo is vestibular (inner ear-based) or brain-based (Migraine associated), and the results indicated that I had some of each.

At the time I was experiencing vertigo nearly daily, strongly during and after Migraines, but also at changes in position, walking up stairs, turning, etc. It was August and September of last year when the problem was at its worst. I started Topamax in mid-September, and the vertigo seemed to quiet down and leave within a couple of months. I thought the Topamax was clearing up the vertigo. But since then I have gone up to 75 mg of Topamax and back down to 25 without any change in the amount of vertigo. I’ve been on 25 mg for the last 4 1/2 months now. I am going to eliminate the Topamax in a few weeks, as I have been phasing in nortriptyline for the past month.

For the last week or so I’ve had a sudden return of vertigo. It came in with the pro-drome of a long Migraine last week, and has yet to leave town. I can’t imagine it is related to the Topamax, because I haven’t changed the dosage in months. I don’t see dizziness listed as a nortriptyline side effect anywhere. It’s not constant at this point, but I can’t hang my head over, or bend or straighten up quickly, without getting very dizzy. I’m actually wondering if the vertigo could be related somehow to seasonal allergies, since my fall pollen allergies are kicking in right now as well. I guess a call to my new doctor is in my future.

When I was a kid my brother and sister and I used to spin around and around in the living room until we got so dizzy we would collapse on the carpet. Why isn’t that any fun any more?

- Megan

Spinning break dancer image courtesy of Katie Weilbacher.

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Time for a Change in Medication

May 23rd, 2009

I am stubborn and it takes a while to convince me. At this point I have to finally admit that Topamax is not helping me very much. I diary very carefully and keep statistics on my Migraines, and I can say that since I have been on the Topamax I’ve had about a 20% reduction in my Migraines and overall head pain. Better than nothing, but not much to write home about.  I started on 25 mg in the evening, tried that for a few months, and the first two months saw my Migraines go from 8 – 10 per month to 5 – 6, but I think that was a fluke, because every month since then has been back up in the 6 – 8 range, which is average for me.

My doctor suggested I take the dosage all at night, so that any sleepiness and cognitive side effects would be mostly worn off by morning. This was okay as far as it went, but I discovered after a while that I was having an awful lot of evening Migraines. I also learned that Topamax is pretty well out of your system after around 22 – 23 hours. So the level in my bloodstream must have been getting pretty low by evening, and Migraines were breaking through at that point. When I pointed that out to my doctor, he said that he wasn’t too concerned about it “just for headaches,” he’d be more concerned if I were on the medication for seizures. I have to say I’m getting a bit concerned with a headache specialist who uses the phrase “just for headaches.”

I decided to split the dose evenly between morning and evening and the Migraine preventive effect definitely increased somewhat, but the cognitive side effects became much more noticeable. So much so that after a month on 75 mg I decided it was intolerable; I was getting next to nothing done in the course of a day. So my doctor was certainly right that taking it all in the evening lessened the side effects, it just lessened the main effects as well! I went back down to 50 mg two weeks ago.

But even on 50 mg, I’ve been so slow I am hardly getting anything done and I have almost no days where I am full of energy. I just don’t feel like me, at all. I cut down the Topa to 25 yesterday, as per schedule with my doc. Well I took this morning’s half pill (12.5 mg) and felt all my energy and alertness just drain out of me within about 15 minutes – okay, now I’m eager to be done with the stuff!

The problem is where to go next. My doctor is recommending amitryptaline, an old tri-cyclic anti-depressant. Some people experience sleepiness, fatigue, and weight gain on it. I read on line that some of the top Migraine specialists don’t prescribe it because it is “primitive.” It’s actually off the market as an anti-depressant, but for Migraine prevention is prescribed at a much lower dose than for depression. On the other hand, some people experience no side effects.

I’d like to propose some alternatives to my doctor, but I’m feeling a little overwhelmed by the research involved. I look at side effects lists and I don’t like any of them. I read others’ experience but I know that what was true for them won’t necessarily be true for me. I just know that 6 – 8 Migraines a month is too many. I’ve had worse, and many of you out there live with worse. But I am sure I can do better!

- Megan

Still looking for that magic pill!

Block head image courtesy of Stefan; magic pill image courtesy of [O*] ‘BharaT.

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Hello there Migraineurs – I’m Still Here!

December 30th, 2008

Hello dear readers – I think this may be my the longest break between posts since I started blogging last January. I apologize for leaving you alone so long! I’m happy to report that the reason for my silence is not that I’ve been off having Migraine attacks – well, not many. I’ve had two since I last spoke to you on December 11th – that’s a great 3 weeks for me! Actually I have felt well, and I have had the opportunity to do quite a bit more paid work, which made me quite busy, and which makes our family budget very happy! And then, of course, it has been the holiday season, and even with a toned-down, taking-it-easy and not-over-doing-it kind of holiday season, I’ve been busy with that!

It’s appropriate that my last post was about balance. Remember that see-saw. Balance is always about adjusting – it shifts, and shifts again. I’m in the middle of a big shift right now. I’m finding that I have more energy to work during the day, and more energy to be with my family and friends, and care for my home, than I have had for a long time. Where’s the energy coming from? I think the Topamax is working well for me. I think the relaxation practice is working well for me, and leading some of you in relaxation sessions has reinforced my own relaxation. I also think that adding CoEnzyme Q-10 to my supplement list has helped a lot. Just having fewer Migraines makes a world of difference. I didn’t even know how much constant low level head pain I was living with – until most of it went away over the past few months.

The other side of the see-saw is that I need to still find the time for this blog, for the writing and creating that is important to me, for staying connected with the Migraine community that sustains me. I need the reminder that I am not, will never be, and don’t need to be, Superwoman, and that I still need plenty of rest and down time.

I love this week between Christmas and New Year’s when things are quiet and slow. Yes, there are celebrations and parties, and yes we’ve been to some of them. Some people go away on vacation, and though we went visiting over the weekend, for the most part we are staying put. I catch up on all sorts of paperwork, get my files in order, straighten up. For some reason the tasks I put off and hate the thought of all year become very satisfying to get finished. It’s interesting to me that this year I really get a chance for a kind of a fresh start, with a new level of control over my Migraines, with new work to do, with my desk clear and files in order to make room for new things. Then whatever those new things turn out to be, they will have to be worked into the balance. The balance will shift.

Thanks to all of you for being on this journey with me this year – it has been one of great learning and growth for me, I hope it has for you too. If I don’t talk to you again in 2008 (25 hours of it to go!) I wish you a happy and healthy new year!

- Megan

Christmas see-saw image courtesy of Tomeppy.

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Fun with Eye Exams – Bright Lights, Big Migraine

December 7th, 2008

Last week I had an eye exam. It’s not something I had ever thought was a big deal. The purpose was to check the pressure in my eyes. A particular type of glaucoma can be a side effect of Topamax, the Migraine preventive medication I am on. In addition, there is a correlation between low-tension glaucoma and Migraine. I learned this about a month ago when I first went in for the eye exam, in the early stages of a Migraine, and asked to be taken out of the bright noisy waiting room. The optometrist scolded me a bit for never having told them (in seven years as a patient) that I had Migraines. My experience has been that most doctors know very little about Migraine, and it never occurred to me to share it with them. I didn’t know it was relevant.

That first visit was a very satisfying patient experience. My optometrist was sympathetic and clearly quite knowledgeable about Migraine; she also refused to dilate me and do the full exam while I had a Migraine. She did a partial exam and I was scheduled to come back in a week. There followed a month where I had a Migraine every Wednesday. It was a good month for me, because those were the only Migraines I had. But for some reason, they kept coming on Wednesdays, and I kept rescheduling the eye exam for the next Wednesday. Finally last week I got a Migraine on Tuesday evening. It was still hanging around, slightly improved, on Wednesday, but I decided I would not cancel the appointment a fourth time. I decided to go ahead with the exam, come hell or high water. I’m not sure whether you would call what followed hell or high water. Maybe both.

First we did a visual fields test. No big deal. Lots of little lights blinking on in my visual field, and I had to press a button when I saw them. Apparently I did well. No blind spots. Then she dilated me. And shined very bright lights in my eyes. Very very bright lights. And then brighter ones. And I had to look directly into the bright lights. That is not something I have done in a very long time. I have spent several years shying away from bright lights.

When I got home I spent the evening in a dim room, blurry eyed, in sunglasses. I tried to read, work on this blog, watch tv. My Migraine came back to life with a vengeance. And hung around another 24 hours, wringing me out like a wet rag. It took days for me to feel well again. So, no, I don’t recommend getting an eye exam with a Migraine. Problem is, if I hadn’t had a Migraine I’d say the chance is pretty high I would have gotten one. The good news is I don’t have any kind of glaucoma, and I was approved to increase my medication dosage. My eyes are in good shape. It’s my brain that’s a little iffy.

- Megan

Eyeball image courtesy of Rob Bell; retina image courtesy of Eliya Selhub.

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Migraine Prevention – Early Success

November 12th, 2008

Shhh… I’m whispering so the Migraine monsters don’t hear me and punish me… Oh yeah, that’s kind
of like believing in ghosts. But I seem to be having some success with the topamax I’m on for Migraine prevention. I have a Migraine this evening, but I’ve been running six to eight days between Migraines, for the last three or four weeks. For a year and more before that I had been getting several Migraines a week. So the frequency is cut in half, which makes a big difference. These are early results – I’ve had good 3 or 4 week stretches before, so I can’t predict whether this will continue. But I am hopeful!

I’m still on the minimum topamax dosage. I would have increased it several weeks ago but for a switch in insurance carriers making it necessary to delay the glaucoma test Dr. Gerhardstein wants me to have before increasing the dosage. Now I am happy we have taken it so slowly. Clearly my body has had a chance to acclimate itself to the medication. I am not experiencing any of the side effects I had in the first couple of weeks, either.

The biggest surprise to me is that I have more energy generally. I am not exhausted in the afternoon and evening; I feel motivated and I am getting more done. The constant low level of head pain I lived with most of the time is just gone – it seems to me that pain may have been responsible for a lot of my fatigue in the last year. The last two weekends I have done yardwork and projects around the house that I have wanted to do for ages.

There is a downside, though. It’s very easy to start feeling like Wonder Woman in contrast with how I felt before. So once again I need to practice what I preach! Along with my clients, and you dear readers, I need to find that middle ground! For over five years now I have known that to have balance and well-being, to keep my energy up and my Migraines minimized, I need to pace myself. I need frequent breaks, and shifts in focus. I need time off in the middle of the day where I truly rest. I need to pay attention when I feel myself getting wired, when my blood pressure goes up, when I start moving and talking fast, when I feel the muscles in my forehead and scalp begin to contract. These are danger signs for me. Not least because I enjoy them – I like that edgy feeling of moving fast and powering through. But that energy is inevitably followed by a Migraine crash.

A few energy management tips:

  1. Take a break or shift your focus every 45 – 90 minutes. If you are at a computer get up, stretch and do something else for a few minutes.
  2. Take “green breaks” where you go outdoors, look outdoors through a window, look at a green plant, or at the very least look at a picture of a green plant. 2 – 5 minutes can make a huge difference.
  3. Take deep breaths to slow yourself down if you feel your energy or stress level mounting.
  4. Be sure to take a real break in the middle of the day – don’t work through lunch.

I failed at finding the middle ground today. I got a lot done, but there’s a price and I’m paying it. And so I learn my lesson again. I’m grateful to have more energy and less pain, and I’m committed to maintaining my energy by using it wisely! Let me know how you’re doing with your energy today!

- Megan

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Migraine Preventive Medication: Move it on up Slowly

October 24th, 2008

Most medications in use for Migraine prevention have a number of side effects, and many, if not most, migraineurs are sensitive to medications and their side effects.  Topamax, which I am currently using, is used successfully by many and considered to have intolerable side effects by others.  Some months ago I read Teri Robert’s report on Dr. Stephen Silberstein’s (of the Jefferson Headache Center) recommendations for a gradual increase (titration) schedule on My Migraine Connection.  You can read Dr. Silberstein’s Topamax Recommendations
here, regarding how to slowly increase the dosage.  He observed that “proper dosage and titration (tapering up the dosage) is essential for successful use of Topamax.”

Being naturally rather suspicious of medications, I went into my headache specialist with this information, and asked that we titrate slowly.  I was pleased to discover that Dr. Gerhardstein takes an even more cautious approach than I do.  At this point I have been on the minimum dosage for about a
month. I saw Dr. G in New Brunswick again this week and he
wants me to have an eye exam to rule out glaucoma before increasing the
dosage. I have that scheduled for next week. Assuming that exam result
is okay (no reason to think it won’t be), I will go to 50 mg daily after

I asked Dr. G about instituting an increase schedule after that point and he told me
he doesn’t want to go on a regular weekly or bi-weekly increase
schedule because it is easy to “blow right past” the minimum effective
dose that way. He said he thinks many incidents of intolerable side effects
may be from being on too high a dosage. The plan is for me to try each
increased dosage for about 3-4 weeks and then call him to discuss. He
wants me to keep a detailed diary and stay very aware of my body’s

I really like this approach. I know we are all
impatient for results, no one wants to stay in pain and with the
disruptions of frequent Migraines. But I think this way I can minimize
side effects and have the most control and awareness over what is
happening in my body.  If more side effects are experienced on higher dosages, and we could end
up on a higher dosage than we need by not giving each level a  long
enough try, maybe a very slow titration increases our chance of finding the
level that is optimum for each of us, with the best balance of Migraine
prevention to side effects.  In the meantime, we can be listening carefully to our bodies and observing their reactions.

- Megan Oltman

Ocean daybreak image courtesy of Hideyuki Kamon.

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Migraine News from Between my Ears

October 17th, 2008

A funny thing happens when you start blogging.  There is this little bit of celebrity that arises.  I can admit that like many people I once secretly wanted to be famous.  My friend Laura told me in High School that she pictured me as a kind of revolutionary leader, with thousands chanting my name.  If that had ever been my ambition, I’d have to say that I failed miserably.  I’ve made it through nearly 50 years of life and I don’t think even dozens have ever chanted my name.  Not at the same time, anyway.

But I digress.  I started this blog for a few reasons.  I wanted a place to share my thoughts on living with Migraine disease, and the other chronic illnesses I live with.  I particularly wanted to share my hope and strength, as someone who has come a long way in managing a life with these conditions.  I wanted to join the warm, intelligent, funny and committed community of Migraine and headache
bloggers and advocates who are making such a difference in the lives of patients and in advancing the understanding of this disease.  The big reason was this moment of truth I had almost a year ago, when I realized that my chronic illnesses are not just an impediment in my life; they
are an opportunity to
share my professional tools and skills, and the
wisdom I have accumulated, to help others manage their lives with
Migraine.  I wrote a bit more about that a few months back in My Migraine Story.

I didn’t really start the blog to keep the world posted on the doings in my own life.  I tell a lot of stories, partly because I come from a family of storytellers,and partly because I’ve always made points (with clients and anyone who will listen) by telling personal stories, about things that happen and lessons I learn.  So it’s been a lot of fun doing that here.  And lo and behold, I learn that people are actually following (to some extent) what’s going on in my life.  Little old me, Megan, Rachel & Adam’s Mom, Danny’s wife, Joan & Jim’s daughter, Jon & Ellen’s sister, the lady in the house on the corner by the field, the little red-head… that one.  It’s a small and gentle sort of celebrity, but I find when I don’t follow up on things I’ve mentioned, sure enough, you’re actually listening, and sometimes you ask.

So the news between my ears…

Hope your heads treat you well and you have an AWAP weekend!
- Megan Oltman

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Topamax Trials

October 8th, 2008

Just a quick update on my trials of/on Topamax.  No tribulations so far, knock wood (picture me
knocking on my head.)  I’ve just finished my third week on the minimum dosage.  This is too soon to tell whether it is working as a preventive.  I have had 5 Migraines in those 3 weeks – which is on the low side of average for me, but three weeks is not a good sample – any given three week period could be better or worse.  More to the point I may need a higher dosage for full effectiveness, and the medication takes some time to build up in the system.

Topamax is an anti-seizure medication, originally developed for the treatment of epilepsy.  Its Migraine preventive effect was discovered in some epileptic patients who were also Migraineurs.  It is currently one of very few medications actually approved by the FDA for Migraine prevention, all of them originally developed for other purposes.  There are 100 other medications that have been effectively used to prevent Migraines; Topamax is not the only game in town.  It may be the first some doctors try, since it is fairly well known, but unfortunately also has a high side-effect profile.  For people who are sensitive to medications, as are many Migraineurs, this is a dilemma.

Typically people feel tingling in their fingers and toes, less often in the lips and other places.  I emailed my doctor after about a week on the stuff when I was having intense itchy tingling in my lips and nose, tongue and TEETH (who ever heard of itching teeth?),
top of my scalp, behind my ears, my kneecaps, elbows, ankles, tops of
my fingers, outsides of my thighs, shoulder blades, upper eyelids. It
kept waking me up one night.  I was worried that this might be an allergic reaction.  Dr. G emailed back that unless there was a rash, it was probably not a problem.  I had no rash and the tingling disappeared the next day.

The other side effect I was most concerned about was mental cloudiness.  Some people have reported so much mental fog and forgetfulness that the drug has earned the nick-name Dopamax!  I’ve had a little trouble with finding the right words, but that seems to be passing.  I’ve found that my ability to multi-task, or keep a sequence in my mind is somewhat impaired.  I have to concentrate harder, write more lists since my ability to make a mental list is less than usual.

I’ve been pretty sparse with the posts here the last few weeks and I put that down to adjusting to the new medication.  I am lucky that I’m not spacier still.  After nearly 50 years you get used to the way your brain works, and to find your thinking change is a big adjustment.  It’s like re-routing around road work.  I’ve always had a good internal GPS system, but these days I have to pull out a map.  And check it again every few minutes.

- Megan

Block head image courtesy of Stefan; road work image courtesy of Hubbers.

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