First med usually prescribed after migraine diet?

Exercise, Lifestyle & Travel šŸ§˜ā€ā™€ļø
1

Hello,

I was wondering if there is a "usual " first med that drs prescribe after the traditional migraine diet has failed. I have basically been eating the migraine diet for many years due to ear symptoms that at one point was diagnosed as Meniereā€™s Disease.

I have a awesome primary care dr, but a not so awesome neurologist. Neurologist doesnā€™t believe MAV is a real thing, primary care dr does and is willing to help. I have taken Neurontin for about 10 years due to Neurofibromatosis type two. I have a script for Nortrityline that I have filled, but have been hesitant to start taking. I seem to react strongly to new meds and have a fear of it making my current symptoms worse.

Is Nortriptyline a usual first med to be prescribed for MAV? I see quite a few people on the forum take Verpamil.

My current symptoms that bother me the most are ear fullness, hyperacusis, and blurred vision. I have had dizziness for over 15 years off and on. Currently it is not too bad. All of the above symptoms are really impacting my daily life at this time.

Any thoughts and insight are much appreciated!!

2

Every doc has different first line preventatives that he likes. My doc, and a few other docs Iā€™ve seen, chooses from 3 different preventatives as first line treatment. Verapamil, Nortriptyline, and Topamax. I actually went through all 3 in that order before finding that Topamax was the one that actually worked for me.

3

I agree with Jamie, as from what Iā€™ve seen each doctor seems to have their own list of favourites. They are also some differences between countries, e.g. in the UK pizotifen is perhaps more commonly prescribed (Iā€™m not sure if itā€™s even licensed in the USA?).

4

It can be different depending on the doctor and more so on the co-morbidities the patient suffers with their migraine. For example, if you are dealing with an anxiety disorder brought on by the balance problems, you will likely be started on an antidepressant. There are algorithms out there that they use as a guide for prescribing. See the the sticky post above about this.

S 8)

5

Yes my doc decides on which drug to use based on other factors. If you are having trouble sleeping or having anxiety, he usually starts with Nortriptyline (though I found it didnā€™t make me sleepy at all). If you have high blood pressure or are male and slighly older he uses verapimil. Dunno when he starts off with Topamax.

6

If you were overweight, it would be a reason to choose Topamax ā€“ itā€™s a killer weight loss medicine. 8)

7

Yes that is true. Iā€™ve heard that in some cases docs have prescribed it along with anti-depressants for nothing more than trying to counteract the weight-gaining tendencies of the anti-depressants.

I donā€™t know if it works by affecting your appetite or your metabolism. I have noticed very little change in my appetite, but then again Nortriptyline didnā€™t make me gain any weight even when I was on 150mg and drugs that are supposed to make me sleepy donā€™t tend to do much to me either. Maybe I am just really side-effect resistant (definitely not complaining!).

8

Iā€™m on Effexor (generic) and my doctor said I might lose weight which I was extatic about as my active lifestyle vanished once MAV came knocking on my door :twisted: But what it did was eliminate my 24/7 nausea so of course my appetite came back so I have not lost weight. But thankfully I havenā€™t gained more than a few lbs. But still with my appetite back and not enough working out because it increases my dizziness, Iā€™m a bit concerned. Thankfully I see Dr Fife on Monday and we will address this.

Does anyone know what other MAV meds that might cause weight loss? What about Nort?

9

Please, keep this thread going. I need advice and help. I am on Paxil, Nortriptyline, and verapamil. I have gained over 20 lbs and I have never been overweight. I am feeling about 80% better on these drugs, but emotionally about 100% worse, since I am thinking of myself as a ā€œfat ladyā€. ha! I always weigh between 120 and 120 all my adult life. Now I weigh 145 lbs. Depressing and I donā€™t want to be depressed, since I have fought so hard to conquer MAV, and have really managed to overcome so much and get on some good drugs that help alot. BUTā€¦I want to lose this weight and it wonā€™t budge while on these drugs. Did someone say that you could ADD Topomax to counteract weight-gaining drugs? Not sure how THAT would work.

I have heard so many on this forum say that Topomax really helped them, was their drug of choice, the ONE that worked. etc. I also wonder if these people are on just Topomax and that did the trick, or did they have to have other drugs to go along with the topomax??? I would love to be on Topomax all alone and have it work for the MAV and then I would not gain weight and would hopefully lose this weight I have gained.

HOW would I go about getting OFF of Paxil, Verapamil and Nori??? I am sure all three are hard to withdraw from. Would I have to withdraw from ONE drug at a time? Or could I withdraw from all 3 at the same time. AND how to withdraw. I am not sure what the method would be. I wish someone would tell me how long it takes to get off a drug. I did withdraw from Xanax once and did it in a few days time. Big mistake. I had horrible side effects for about 8 days and was very sick. So, is there a good pattern of withdrawl? Maybe skip one dose for one day during the week, then the next week, skip two doses etc.etc. ?? I just donā€™t know.

I am thinking that if nobody really knows, then I might have to either call Dr. Hain or drive back over to Chicago and find out from him personally. I really need to change these drugs and I donā€™t know if I can really even tolerate Topomax, but itā€™s maybe worth a try, IF I only knew how to get off these 3 drugs.

I would just HUG anybody that could help with this. Does anybody have any advice on how to get off these very fattening drugs?? They are worse than a hot fudge sunday, 3 times a day ā€¦every day.!!!

10

Meredith - I totally understand your frustration with the weight gain. That said, Iā€™d be careful about kicking your current meds out which are working (at least to a good degree) for one that is untriedā€¦ While it sounds like Topamax helps a fair number of folks, there are also a good number of us who it either doesnā€™t help or has intolerable side effects. And, my understanding is the reputation for weight loss that Topamax has, like any other potential side effect, doesnā€™t happen to everyone. Iā€™d say take your concerns about the weight gain to your doc and see what he says. Maybe he has an idea on how to help without having to do something as drastic as ditching 3 meds that are helping and starting from scratch trialling new ones. Just a thoughtā€¦ :smiley:

11

Hi Erika,
Thanks for your post. My husband LOVES you, as he read your letter and agrees with you 100%. BUT, heā€™s not the one that gained 20 lbs. I just got back from a 2 mile fast walk and had my psyllium husk and Miralax. Iā€™m on Verapamil!!! I do hate to upset the apple cart, so to speak, as I am getting on quite well on these drugs, but I wonder if itā€™s even possible to actually LOSE weight, with lots of walking and eating sparsly , while taking drugs. I would hate to work like a dog exercising and dieting and NOT lose anything. I havenā€™t really tried, as hard as I should, to exercise and diet, and I am going to try again much harder and see what happens. IF nothing major happens, then I will look at Topomax again. I have read how awful the side effects are and also memory loss etc. SO, itā€™s not a drug I WANT to go on, but if it helps lose weight, then that makes it appealing. Thanks, Erika, for your response. You sound like a wise person. Meredith

12

First off, Iā€™m going to agree that switching up meds if something is working is a risky strategy at best. That being said, I am the kind of person who doesnā€™t believe in settling either, so I think there are options. I believe you should be able to try out topamax without actually changing your current medications.

You can most definitely take topamax concurrently with nortriptyline. I am actually doing it. I am in the process of weening myself of nortriptyline at the moment. Tonight in fact is my last night at 50mg. I go down to 25mg for another few days and then Iā€™ll be off it entirely. I was at 100mg 10 days ago. Iā€™ve been on it at varying doses between my starting dose of 10mg and my max dose of 150mg since about last Octorber. I thought it might be helping, but ever since the Topamax kicked in, I think any help it was giving me was either minimal, or was just from me learning my triggers and avoiding them. Iā€™ve noticed 0 increase in symptoms as Iā€™ve backed the dosage down from 100 to 50. Hopefully Iā€™ll continue to notice no change from 50 to 0.

I donā€™t know if you can also take topamax with verapamil but I suspect you can. They do entirely different things. Probably paxil too, though I know less about paxil.

So the way it would work would be you would add topamax to your existing cocktail. Hopefully what you would see is that your existing symptoms would either stay the same or improve (other than the expected dizziness that seems to occur for 5 days or so with almost everyone who starts up or changes dosages of topamax) but the topamax might help to counteract some of the weight gaining properties of the nortriptyline and paxil.

Hereā€™s where you could then choose to be brave. If your symptoms seemed to be ok, you could then see if you could back off of some of the other medication and see if the topamax was keeping the symptoms in check. Obviously you wouldnā€™t know if this was working or not until it wasnā€™t, so thatā€™s a big risk. Thatā€™s kind of what Iā€™m doing right now, except that since my symptoms didnā€™t go away until after I was ON the topamax, all Iā€™m proving is that it isnā€™t the combo of the topamax and nortriptyline that is fixing me. And since there hasnā€™t really been anything to suggest that there is some magic combo of topamax and nortriptyline helping tons of people out there, Iā€™m not expecting to find that to be true with me.

So I guess you could go into it just trying it out to see if it helps with the weight gain, and then decide down the line if you want to drop other medications. If it makes you feel BETTER, then I think dropping other medications becomes an easier decision. For example, at one point I thought the nortriptyline might be making me 30% better. Now that I am on the topamax, I realize that it was more like 10%. It was almost negligable improvement compared to what I have received from the topamax. But that is just meā€“everyone responds to different medications in different ways, and I think topamax has more serious side effects than anything you are currently on.

Iā€™d be interested to hear what your doctor has to say, given that Iā€™m pretty much just pulling all of this out of my *** based on my very limited personal knowledge from my last year of dealing with this crap. :slight_smile:

13

Hi Jamie,
You really gave me a lOT to think about. Thank you so much for your advice. I was wondering IF I started the Topamax on top of the other 3 drugs, that I would have as bad of side effects as someone who took Topamax alone without any other drug. Probably would, iā€™m thinking. I could stand about 5 days or so, of side effects from Topamax, if I KNEW it would end someday. What I worry about is that the side effects will NOT end and I wouldnā€™t be able to take it at all. I read about so many that could not stand taking the Topamax. I could be very brave and try to drop the Nori althgether after a while AND the Paxil. I am kind of afraid of losing the Verapamil . That was the first drug I was put on and it stopped the hard spinning vertigo and vomitting that I had PLUS the headache. Well, lots to think about. I do have an otologist here in town that helps me with my BPPV, and he might give me a low dose of Topamax to trial. Easier than bothering Dr. Hain in Chicago. Thanks, Jamie for your interest and help. Hope you are doing ok! ? Meredith

14

Hello Meredith
Iā€™ve been following this thread with interest - it seems we all have some kind of unwanted side effects from the meds weā€™re taking and are trying to make decisions about what other drug(s) we might substitute instead. Unfortunately changing meds is so complicated, side effects unknown, as it varies from person to person. Our major problem is trying to get the right advice from our medicos. They are often willing to help but give us scant advice on which way to proceed so it becomes a lottery. My gut feeling is that before ditching any med that has been such a help to you seeking Dr Hainā€™s advice (considering his knowledge & experience of MAV drugs) may be a good starting point.
One of my s/e of my med is constipation which is making me think about changing my med! I will contact my specialist in Sydney before I make a decision. You mentioned Miralax which I donā€™t think is available in Oz but if it works well I may be able to get some online.
Good luck
Barb

15

I agreeā€”get Dr. Hainā€™s advice over mine!! i am just speculating based on my own experience of ramping up Topamax while still on Nortriptyline and then ramping down the Nortriptyline. So far it has worked without a hitch, but I donā€™t really think the Nortriptyline was doing anything so that probably wasnā€™t a really good test!

IF (and that is a big if) you can safely take the Topamax with all of your other medications, then I donā€™t see why you couldnā€™t stay on the Verapamil permanently along with the Topamax. I have done NO research on it, but Verapamil is a blood pressure med and Topamax is an anti-epileptic. They should be totally unrelated unless there is some odd interaction between the two. In fact, Verapamil causes constipation and Topamax can cause diarreah, so that actually works out a bit. :slight_smile:

My only thought with the Topamax is that, if you can safely add it to what you are already taking, you could see if you couold tolerate it without changing anything else. Then, once you know you are tolerating it, you have the option to start weening off of other medications. If at any point during the weening process something goes wrong, well you reverse course. Itā€™s a trial and error procedure, but it might be a way for you to find a different combo, perhaps Topamax + Verapamil, that controlled your symptoms but didnā€™t promote weight gain.

Now, itā€™s obviosly a big risk to mess around with something that is working. I donā€™t know how bad you get at your worst or how long it would take you to restabalize once you realize that taking something away has caused a problem. For me it was an easy call because I wasnā€™t getting better on Nortriptyline and I wanted to try Topamax. So I wouldnā€™t do this unless your doc thinks you can pull it off without it being a big mistake.

Oh and thanks for asking. I am doing great. The topamax has made a huge difference. I am waiting a few months before I call myself a success story, but I feel that Iā€™m well on the way. I donā€™t know if I need to stay on it permanently or what. Iā€™ll find out more on my doctors visit in early July.

16

Thank you for all the suggestions and advice. I am considering getting a prescription for Topamax and starting it and seeing what will happen. I think Jamie, you thought I could try that without too much ā€œhurtā€ and if it didnā€™t work, then I would still be on the other 3 meds. If I possibly could tolerate Topamax ( I seriously doubt it as I am SO very med sensitive), then I would start looking into stopping the Nori and Paxil gradually. I just donā€™t know HOW gradually you have to do it. THAT is what I need to know. Is it a matter of days or is it weeks, to slowly get off a med, without having horrible withdrawl effects.?I want to start soon to get off the Paxil, as I donā€™t really think itā€™s doing anything for me. I am sure the Nori is helping, but I also think THAT is whatā€™s making me gain this weight. I will let you know what happens, after I make the appt with my local dr. to see if he will give me Topamax. I am also going to call Dr. Hain and talk to his nurse and let her ask him if I could start Topamax and see what HE says. Maybe he will just send in a rx for me. He always did before. I just hate to keep bothering him, not that I have but once, trying to withdrawl from Xanax. So, Iā€™ll be back on the forum when a decision is made and Iā€™m doing something. Thanks again and best wishes to you and hope you stay feeling well. xoxo and hugs, Meredith

17

I donā€™t have experience with Paxil so I donā€™t know what the withdrawl time from it is.

I can tell you how I am pulling off of Nortriptyline. I was at 100mg for several months. I backed down by going to 75mg for 5 days, then 50mg for 5 days, now Iā€™m at 25mg for 5 days, then Iā€™ll be done. That is slower than my doc told me to do itā€“he suggested 50mg for 10 days and just be off of it. But heā€™s always really aggressive so I tend to ramp things a little slower than he recommends. Iā€™ve noticed no withdrawl issues at all so far, but I donā€™t seem to be very med sensitive.

I will definitely warn you that the Topamax hits HARD whenever you start it or change a dose. You are going to want to start out with a very low dose and give yourself some time where you just expect it to make you very dizzy. I started out at 25mg and it made me feel really bad for about 2-3 days. Then I started feeling a bit better, and by day 6 I was back to being ok again. This repeated every time I went up 25mg. So if you do it, being med sensitive you probably want to use a smaller dosage. I know some on here have used a half-pill of 12.5mg. I was told to not break the pill in half so I donā€™t know how that works exactly. And do it at some time where you know you donā€™t have to be at your best because more than likely you arenā€™t going to have your best days, even if the medication will eventually help you out.

I donā€™t know who you would check with to be sure all these meds can be taken at the same time. **According to drugs.com, there ARE some issues with taking them all together. There is even an issue with just topamax and nortriptyline: **

http://www.drugs.com/interactions-check.php?drug_list=1734-0,2297-0,1800-1156,2216-1469

Heckā€“I was stupid. I didnā€™t know this and I probably did something really stupid the other day. I was late for a plane flight and was rushing around in 100 degree heat trying to get my family to the airport. I suddenly got really hot and started feeling faint like I was going to just pass out. I never get like that and it really surprised me. I didnā€™t know the combo of topamax & nortriptyline could cause you to not shed heat properly. My doc probably warned me and I forgot. We ALL Have to make sure we stay on top of all of this stuff and make sure we remember what to keep an eye out for.

18

Meredith - glad I could help a bitā€¦ And, Jamieā€™s probably right - I suspect you could try adding Topamax in with your other meds, rather than kicking them out first - though Iā€™d check with my doc AND a pharmacist to see what they think. Anyhow, Iā€™d be concerned about being on that many powerful meds all at onceā€¦ But I tend to be fairly paranoid about these meds, so it could just be me. :wink: Oh, and from what Iā€™ve read, Paxil a hard one to get off. But, I think most of the MAV meds have that kind of reputation, since they all have to do with brain chemistry.

Jamie - Topamax does have a warning on it about sweating/overheatingā€¦ Hereā€™s what one site says (not sure if itā€™s directly off the label, but I do remember the insert saying something to this effect): The use of Topamax has been associated with high body temperature and decreased sweating. This is a potentially dangerous side affect, so avoid getting overheated during exercise and hot weather. Monitor your sweating and keep hydrated with plenty of water. If you notice that your body temperature is higher than normal and have decreased sweating, notify your doctor right away. (I only remember because I was concerned about whether I was going to keel over while mowing the lawn, while I was on itā€¦ :wink: )

19

Right, the issue is that Nortriptyline apparently makes the overheating problem of topamax WORSE. So not only did I forget about the problem, but I didnā€™t realize the Nortriptyline was making it even more likely. I probably almost gave myself heatstroke. I should have been dripping with sweat, but I wasnā€™t.

I felt like I was about 30 seconds from passing out when my wife brought me a big thing of lemonaide to drink. That probably got my electrolytes back into balance. Sheā€™s a good woman. :slight_smile: