Migraine

My apologies if this is long but I need to ask people who understand.

I have had migraines since puberty, now 44, they have gotten steadily more frequent in the past year. My primary put me on Inderal which did not help. Went to a Neurologist who I initially liked, did and MRI, which was fine. Gave me a week of Prednisone to break the cycle, was migraine free for 16 days. Started me on Topamax and gave me some abortive samples, which my primary hesitated to do since I have auras.

After two months on Topamax my migraines are down to once a week, better but still unacceptable to me, since they last two days. Axert, Relpax haven't helped. Trying Imitrex with next migraine.

I have also had asthma like symptoms since about third week on Topamax. Initially did not connect the two nor did I think the symptoms were asthma, thought I was fighting off a chest cold since I have never had reactive airways. Finally accepted it might be related to Topamax, called my MD who said "no it couldn't" but lets lower your dose to 50mg and only once a day. (Topamax says every 12 hours) MD has also said if tingles got too much to take dose only at night. Red flags started going up here.

So I have an appt with my primary tomorrow to address asthma like issues but I truly believe they are related to Topamax. They are not set off by seasonal irritants.

I feel my neuro just has one way to treat migraine patients and although I have not asked to go off Topamax and try something else he has just rubbed me wrong now and I feel like leaving. I do live near Chicago and am thinking of the Diamond Headache Clinic.

Am I jumping ship too soon? I want to ask my primary, who I have a good relationship with but she wasn't able to help with my migraines but I also would like our opinion.

Thank you for listening if you have made it this far, I am so tired of this!!!!!

lisa
who knows life is hard, but God is good

Lisa,
I think the appointment with the PCP is a good step. I would also talk to your pharmacist about side effects of Topamax. They are an excellent resource we often overlook.

You are so close to a Migraine Specialist it does seem a shame to not use them. Also my personally feeling is that a great deal of what can be accomplished with any doctor is the based on how well we as an individual get along with that doctor. We don't need to be best buddies, but there does need to be a feeling of mutual trust and respect. There is a quiz on our site about "Is this doctor right for you". Can I find it, of course not!! Perhaps you can or someone else will post the link. I'm guessing your current neuro isn't right for you.

While your PCP maybe be effective in treating your migraines, he/she maybe very good at helping your evaluate the effectivness of the neuro for your needs in treating your migraine disease.

Good luck.

Cindy

In my opinion, if I were you, I would say no, you are not jumping ship too early.

I am one of those patients though that once a doctor tells me something false, for something I know is TRUE - example: from our Topamax Profile:

This is under side effects:

Rare:
blood in urine
decrease in sexual performance or desire
difficult or painful urination
eye pain frequent urination
hearing loss itching loss of bladder control
lower back or side pain
nosebleeds
pale skin
red or irritated eyes
ringing or buzzing in ears
skin rash swelling
troubled breathing

So yes, I would consider it time to move on, if they say this can't happen on this drug. Although rare, it can happen.

Is your doctor right for you? Here is the link Cindy was speaking of.

Talk things over with your PCP if you are comfortable with him/her. It wouldn't hurt.

Hi Lisa,

Time to "fire his sorry butt" as we like to say. Trouble breathing, although rare, can be a potential side effect of topamax. Another important thing to mention is topamax is not the only Migraine preventive medication available - we should probably tell the neurologist this!!

Yes, I'd say it is time for a Migraine specialist. Our list includes the Diamond Clinc and some others which you can find
HERE

I believe you should go with your "gut." If you're feeling unsure or unsettled with your new doc, it's time to find yet another "new" doc. I would seriously consider the diamond headache clinic. If you have the luxury of having something like that close, it's worth it. You'll always wonder if you don't at least try it.

I had the feeling of asthma on topamax and I don't have asthma. I just felt like someone was always sitting on my chest and it was heavy. Once my doctor took me off of it, that feeling went away.

As far as taking the topamax once a day, my doctor had me doing that to minimize the symptoms. I was taking it at night so I'd sleep through the worst of them. However, when that didn't help and I wanted to try splitting the dose, he was fine with it too. In the end, topamax wasn't working and I had severe side effects so he decided to try something else.

Take care.

Lisa,

I don't think your jumping ship at all. I think moving on to a migraine specialist is a great idea. You need someone who is willing to listen and help you.

There are over 100 medications that can be used for migraine prevention so there are plenty of other options aside from Topamax.

Please let us know how it goes, k?

Lisa, IMO, this is the type of decision you should trust your instincts on. About a month ago I was starting to have some doubts about my (then current) doctor. I couldn't quite put my finger on it, but my gut was telling me it was time to move on. I knew some of the reasons - scheduling difficulties - were enough of a reason, so I decided to move on, and asked my prior doctor to refer me to a new specialist. (That's a little bit confusing - I was seeing doc #3 and had doubts, so I asked doc #2, who I had a great relationship with, to refer me to doc #4.)

This past weekend I had some frightening migraine symptoms crop up, and after I determined with the help of the on-call doc that I did not need emergency attention, I put a call in to doc #3 about these new symptoms. Well, I didn't get a call back for two days, and then it turns out she doesn't even think what I have is a migraine, and these new symptoms "may be" related to this ongoing "headache", and if I'm still concerned, I can schedule an appt with her nurse practitioner.

Needless to say, if she wasn't already fired, she'd be fired for sure. I'm telling you all of this because if I hadn't gone with my gut and fired her a month ago, I'd have to wait that much longer to see doc #4. As it is, I have to wait 27 days still to get in with my new specialist. Meanwhile, I've had a migraine since November that no one's been able to break, and doc #3 didn't even think it was a migraine!

So, if your gut is telling you to move on, go ahead and move on. You can always treat it as a consult and go back to your original doc if the Diamond doesn't work out for you.

Thank you all for your responses. Right now my head hurts too much to respond to more than this: Eileen, the Topamax profile that Teri wrote with the breathing problems listed is based on what? I don't mean to be rude but if I bring a copy into my doctors I want to know what resources she used otherwise I can just imagine him saying "oh, that internet, you can find anything to back up what you think you have"

I have no idea if my MD would really say that I just want to be an educated patient!

thank you again!
lisa

Just reread the Topamax profile and saw the symposium and Dr. Silberstein noted. Are the side effects taken from him also? thanks!

Lisa, the Topamax profile is based on the FDA-approved labeling information, as is all the drug information on this site. (Teri or mods, please correct me if I'm wrong.) This information is publicly available to doctors, pharmacists and patients, and most of it is on the FDA's website, as well as many other websites, such as www.drugs.com.
FDA does not have the most recent approved full labeling for Topamax posted on their website, but the labeling approved in 2005 does mention the breathing problems you are concerned about. This mention would not have been removed from the most recent prescribing information. I'll link you to the full PDF HERE, as well as the Topamax index page HERE.

Let us know if you need anything else, ok? You *never* have to worry about the quality of information that Teri provides us. She doesn't post anything without thoroughly researching it. I can understand why you might be concerned about your doctor seeing you print out internet information, but rest assured that this info is well-researched.

MJ- Great job on the additional information!

Thank you very much MJ! Off to my MD appt feeling strong and thankful for your support!

have a wonderful day,
lisa

Wishing you a great visit, Lisa!

It definately sounds like its time to fire your doc.

I am of the opinion it is never too soon to drop a doc. I dropped my first neuro after one appt w/ that jerk.

It worked out VERY well because my new neurologist is great.

There is no reason for you to stay with a doctor you aren't comfortable with or who you don't think is giving you the best care.
Good luck finding a new doc!!