Another Failed Medication Trial - What Next?

Medication đź’Š
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I was just told to taper off zonisamide over the next week. I had worked my way up to 100 mg. without any deal-breaking side effects. Then my doctor told me to try for 125 mg. (150 mg. was to be next), and I developed a cough and tightness in my chest. I tried waiting it out for a week, but it didn’t get better. I dropped back down to 100 mg. six days ago. The cough has improved some, but it has not gone away, so I call the doctor this morning to ask if I should wait it out longer. He wants me to give this trial up altogether. I guess this side effect is a deal-breaker for him. I am rather bummed about it. I was really hoping this would be “the one” for me. I had been optimistic since I didn’t have the horrible cognitive side effects I had from its cousin, Topamax.

What do I try next? I have a trip to Europe planned for the end of June. I was hoping to have a medication that would ensure at least some stability for the trip, since I won’t have total control over my diet and sleep. It is an educational tour with a large group of students, including my daughter. I signed up for it last August on a 95% day. :?

I have tried:

Verapamil (calcium-channel blocker) - It helped get my persistent vertigo under control. I stopped it after 4-5 months or so because I was no longer seeing any benefit and I was tired of the constipation.

Topamax (anti-seizure) - It got rid of my mild to moderate headaches, but it turned me into a depressed, bumbling idiot so I stopped after two months. It did not help with my aura symptoms. It seemed to make them worse, if anything.

Toprol (beta blocker) - No side effects, no benefit. Stopped after a four-month trial

Zonisamide (anti-seizure) - Like Topamax, it got rid of my mild to moderate headaches, but it has not yet helped with my aura symptoms. I’ve been titrating up for two months. FYI - 100 mg. is the “normal” starting dose. It figures that my migraine brain can’t handle any more than that and it took me six weeks just to get there! I didn’t mention above that I felt pretty sick at 125 mg. and my vertigo returned. The breathing trouble was the deal-breaker, though. I’m used to dealing with the rest.

I’ve also tried numerous supplements without any magical results.

Does anybody have any suggestions for my next med trial?

Marci :frowning:

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I am so sorry for what you are dealing with!! I know the frustration that comes along with Migraine!! I am currently on 3 migraine preventatives. I am on 360 mg Verapamil (sr or er), 75 mg of nortriptalyne and 75 mg of Effecor SR. All three are recommended for Migraine. I have had no side effects from any of them and I have always hated meds because I have always been so med sensative. The only thing these 3 meds did for me is to get my life back. Hang in there there are many to choose from.

Pam

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That’s a tough spot, isn’t it?

Interesting that you were OK up to 100 mg but not 125. Was the 100-to-125 jump a bigger increase than your prior ones? (e.g., did you work your way up to 100 in 25-mg increments, or was it slower than that?) Maybe your threshold was 100, or maybe the dosage increase was simply too fast. Effexor (for migraine) generally goes up in 12.5-mg increments, for example.

Zonisamide has quite a long half-life, by the way… up to 105 hours, I think… so if you were on 125 for a week, it may take a while to return to normal…

I’m no doctor, but you could always call your doctor back and say you want to re-discuss the matter. Yesterday the doctor I saw wanted me to dump verapamil and go to Effexor, but I made a case for staying on verap. for a while longer, and I guess he felt my idea / my reasoning were sensible – he agreed to let me try it my way.

Of course, if you want to make a case for staying on, then that’s your decision, and you should decide how you want to argue it. Personally, I might say, “Look, I was doing well at 100, and obviously 125 is too much, but since I didn’t suffer at 100 mg, I really don’t want to drop it completely.” Ask him why he wants you to leave it. As Pam mentioned, some people require a multi-drug approach to solve the problem. If the doctor really won’t budge from the “drop zonisamide” stance, tell him your frustrations (even show him your post, if you want!), including with your long history of difficulty finding good medicines, and ask him what your options are – including if he thinks combining medicines is possible.

P.S. You didn’t mention – at least in this post – how useful zonisamide has been for you (you mentioned “few side effects” before 125 mg, but not how much it’s actually helped). If it was doing you some good at 100 mg, make sure to mention that, especially if you want to ask him to keep you on it. Maybe he doesn’t know it was helping (if it was)?

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Hi Marci,

Sorry to hear this med didn’t pan out. How do you feel about trying something from the antidepressant class of drugs? Maybe a tricyclic (nortrptyline), SNRI (Effexor, Cymbalta) or an SSRI (Zoloft, Paxil or Lexapro). If you look at the drugs of choice by Hain they follow along something like this: Effexor -->Topamax – > Verapamil → Propranolol → Nortriptyline. Rauch starts with Nortriptyline. So maybe that should be your next stop followed by Effexor. It’s hard to believe Propranolol would work considering Toprol was ineffective but is another beta blocker worth a shot down the road? Also, Adam seemed to do well on Neurontin without cognitive issues … maybe another one to think about.

How bad/manageable are your MAV symptoms right now?

Scott 8)

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Pam - thanks for the encouragement. I know I will find the right med or combination of meds eventually. I’m just frustrated because this one wasn’t it.

George - Thanks for the input. I thought about questioning the decision to stop the med completely because I remember Rich had breathing difficulties with Topamax at a higher dose that subsided when he decreased the dosage. I have an appointment with my neurologist next Tuesday. Unfortunately, I was only able to speak with his nurse today. She was playing the go-between.

To answer your questions: I started at 25 mg and added 25 mg each week until I hit 100 mg. I stayed at 100 mg for three weeks and then tried going to 125 mg. I had side effects with each titration starting at 50 mg. They improved within a week or so until this last time. Besides the breathing issue, I couldn’t live with the other side effects at 125 mg for much longer anyway. I missed two days of work last week because of it. I don’t really know its overall effectiveness yet because of the side effect rollercoaster that came with each titration. However, I do know it pretty much eliminated my almost daily mild to moderate headaches and I had some almost 100% days on occasion. I don’t know how much credit to give the medication. Part of me would like to stick it out at a lower dose for a while, but I really want the coughing and chest tightness to go away.

Scott - I’m considering Effexor. On one hand, some folks like Jen have had good results with limited side effects. Also, I have taken Wellbutrin, another SNRI, in the past with no side effects. I don’t know if that means anything, but it makes me wonder if my brain is receptive to SNRIs (wishful thinking :wink: ). On the other hand, there are MANY of you who have had terrible side effects from Effexor. I’m afraid to jump on the bandwagon the way I did Topamax. I’ve tried Paxil and Zoloft for depression in the past. Zoloft made me anxious after a few months, and Paxil made me horribly sick after one dose. I’m not ashamed to admit that I don’t want to try a tricyclic at this point because of the risk of weight gain. Neurontin is an option, although I think it can cause weight gain too, uhg! My last neurologist had it on his short-list and my new neurologist has mentioned it too.

— Begin quote from “scott”

How bad/manageable are your MAV symptoms right now?

— End quote

I have been on an MAV symptom rollercoaster lately. Both before and during the zonisamide trial, I would estimate I’ve been varying between 55% and 95% of normal with most days in the 70-80% range. I’m able to stay at a functioning level if I am strict with my diet and sleep schedule and I don’t overdue it. I am trying to find a medication that will keep me at a consistent 90-100% most days.

Thanks for your input.

Marci

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Hi Marci,
Sorry to hear you’ve been suffering on the medigoround.
Question: after going off your last antidepressants or meds, did you go into remission?
It’s just that I remember you saying you were using diet alone, and feeling OK
I’ve gone into remission after stopping a med before, only to find the mav returned, I’m curious about this phenomenon, as I know it’s happened to other mav’ers as well.

PS
I also had ongoing breathing problems coughing ect… on anti seizure meds (topamax)
And higher doses of neurontin .
Almost cracked a rib after months of coughing
I also noticed it was dosage related. Horrid!

Marci, Do you migriane every day, or once in a while?

Cheers
jen

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Hi Jen,

I haven’t been in remission since this started in October 2007. However, I’ve had periods where I have felt better than others. After going off all meds last summer, I went through a period of mostly 80-90% days using diet alone. I started feeling worse again when the weather started to change in the fall. I have MAV symptoms every day, all day, but the severity varies. I have headaches intermittently. They are usually mild to moderate. I really want to get the brain fog, head pressure, visual aura, and false sense of motion symptoms under control (or gone! :smiley: ).

Marci

P.S. I just thought of something else zonisamide helped me with; I am less fatigued since starting it.

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Marci ,
I’m sorry to hear that, my memory is still poor.
all the best with what ever you try.

Thanks
jen :smiley:

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Hey Marci -

Paxil made me horribly sick after one dose.

Not good. I’m about to try it tomorrow. I know it can go either way though … just unreal how one med can be so good for one person and so lousy for another. None of these migraine meds is a walk in the park … such a bummer.

S

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Scott,

I wish you the best with Paxil. Hopefully, it will be the one for you. I took that one dose about ten years ago for depression, long before my MAV saga. Thinking back, the way it made me feel was very similar to a VERY bad MAV day with vertigo, nausea, and the whole bit. I had a similar experience when I stupidly quit Zoloft cold-turkey probably a year or so before the Paxil trial.

As you say, we are all affected differently. That is why I will have to try Effexor for myself if I want to know if it will work for me or not. We’ll see. I have some thinking to do.

Good luck, and keep us posted.

Marci

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Well, I’m three days off all meds, and I had a 95% day today. I wonder how long it will last this time. My worst complaint today was the persistent cough left over from the zonisamide. Hopefully, it will go away soon. Other than that I just had some intermittent tingling and numbness in my hands, and of course the visual snow that I think may be permanent. I improved rapidly after stopping Topamax too. I wonder why that is.

I go back to see my neurologist on Tuesday. I was really hoping to find a preventative that works before my trip to Europe at the end of June. Assuming I may have a run of good days now, should I start a new preventative while I’m feeling good, or should I wait until I slip again, which seems to be inevitable based on the rollercoaster ride I’ve been on for the past 18 months? Any thoughts?

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Marci,
I’ve talked to other mav’ers about this phenomenon and wonder if we should have stuck it in as a question for Dr Hain ,Dr Rauch in neuro’s Questions posts….

Every time I go off a medication this happens, I’ve had it last for months at times.
There has to be an answer for it, I can’t help but wonder if this phenomenon holds “the secret”
To a cure for migraineurs.
You know ….something the trials and Docs haven’t picked up on yet.
Why???
Our Brain is obviously telling us something, but what?

I’ve Googled my heart out over this question and havent come up with any evidence or studies why that this should be happening.

Enjoy your remission and lets hope it’s the end of this Mav madness for you.
If I were you, I’d stay clear of all triggers for as long as I could.
That should help to prolong your remission.

Excellent!! :mrgreen:

jen

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Hi all,

I went back to the neurologist today. I’ve decided to give Effexor a try. If it turns out to be a nightmare right away, I have a prescription for my next trial - lisinopril (an ACE inhibitor). I was feeling a little crazy (or stupid, however you want to look at it) today and decided to take a full 37.5 mg. capsule after eating a hearty lunch. That was three hours ago. So far I don’t feel any worse than I did this morning. We’ll see how it goes. I’m hoping the fact that I took an other SNRI before without side effects is an indicator I will do okay with Effexor. I guess I’ll find out if that is just wishful/foolish thinking.

Wish me luck!

Marci

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Hey Marci!

Wow … you’re living on the egde :wink: Really hope it pans out for you. If there’s one thing that we know, it’s that we all have to try these meds no matter what someone else experienced. Unfortunately there’s just no guarantee with meds in the land of migraine.

Good luck with it all … Scott :slight_smile:

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wow!
Good on you Marci , I hope you start feeling relief quickly.
you go girl.

jen :mrgreen:

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Thanks, Scott and Jen!

I didn’t have any side effects yesterday, but I did have some trouble sleeping last night. That is nothing new for me since I have had bouts of insomnia throughout my life. However, I have been sleeping better lately (until last night), so I hope it resolves itself rather quickly. I felt well enough last evening to scrub carpets in my new house. I was very relieved that my head didn’t spin around like Linda Blair’s in The Exorcist after my first dose. I was rather worried something like that might happen! :lol:

I’ll keep you posted…

Marci

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“I felt well enough last evening to scrub carpets in my new house”.

Hi Marci,

That made me laugh out loud - I’ve got an image in my head of a smiling, happily medicated 1950s domestic goddess in a cocktail dress and full make up, with a martini in one hand and a scrubbing brush in the other.

Maybe I’ve been watching too much “Mad Men”. :lol:

Victoria

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— Begin quote from “Victoria”

That made me laugh out loud - I’ve got an image in my head of a smiling, happily medicated 1950s domestic goddess in a cocktail dress and full make up, with a martini in one hand and a scrubbing brush in the other.

— End quote

Yep, that’s me! NOT!!! :smiley: What is “Mad Men”? I’ve never heard of it.

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Mad Men is a new(ish?) show about the advertising world of the early 1960s. The “Mad” is short for Madison Avenue. It’s a glorified soap opera but lots of fun. Has nervey housewives with shaking hands and drinking problems etc. Has just started here in Australia.