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Medication Help & Misdiagnosis Questions

Hi! I am new to and would love to get some advice on medications and misdiagnoses.

I am currently on my 5th or 6th migraine medication, I started with preventative pills (nortriptalyn, topamax, 1 other I can't remember the name of). When those didn't work I went on Emgality which did work for a while, reducing my monthly migraines from 13/month to 3/month. I was on this for about a year but it slowly started not working as well. I think some inconsistencies in when I was taking it each month was affecting it but I also noticed that right after I started this medication I started gaining weight. In the year that I was on it I gained 20+ pounds and when looking at forums online, saw that this was a common problem people had with Emgality. I talked to my doctor about this and we switched to Aimovig which I was on for about 3 months but was not seeing any improvement in my headaches. Since then, I've switched to Nurtec and have been on this for about 3 weeks but I still consistently have a headache almost every day so it doesn't seem to be working. Has anyone else had similar issues with these medications and does anyone have any suggestions for what has worked for them?

Also, with so many migraine medicines not working for me, I'm wondering if I'm misdiagnosed. I have some symptoms of migraines (triggers: alcohol, lack of sleep, skipping meals) and triptans always help to end the migraine. At the same time, I don't usually get Auras and other common symptoms of migraines. Has anyone else experienced a misdiagnosis? Does anyone have suggestions for what else it might be? Some suggestions I've had could be that it's tension headache or something to do with my thyroid.

Lastly, does anyone have any good suggestions for what gives them relief? I haven't found any OTC medications that help just my prescribed triptans but I do use a ThermaICE RX headache hat which has been great but would love any suggestions. Thank you in advance!

  1. Hi Caroline! Welcome to the community. I'm glad you found us. I'm not an expert, but for me, your experience sounds very similar to that of many others who live with migraine disease and have shared their stories with us. The reality with migraine is that each person's experience and body is so unique. We still don't know exactly what causes migraine in the first place, so treating it can be tricky. As you've seen, it can take a great deal of trial and error to find the right combination of treatments, lifestyle changes and other therapies to start making a dent. It's also common for a medication to quit now and then, because it's not unusual for migraine to change at various points throughout your lifetime.

    Have you s

    1. Hi, I just joined today. Re meds. I’ve been a sufferer for about 25 years. My doctors here in Uk made my try about 20 different meds over the years, but none really helped. Finally, in a random conversation with a French lady, her sister in law(from Sweden)used something called Zomig 5mg Nasal Spray. Zolmitriptan. It’s a pack containing 6 individual nasal puffers. One per migraine. I have to take when the migraine has arrived fully, and then lie down in darkened, quiet place for a few hours. When I wake up, it’s gone. Some users take, and when it’s kicked in, carry on as normal. However, I’ve found that if I do this, the migraine comes back worse the next day. Again, may just be for me. I’ve been using it for many years now. It doesn’t prevent the migraine, but it does take all the pain away and bring me out the other side. Obviously, other users may have different results, but it has worked for me. I also keep a supply on frozen …. I think Americans call them wash cloths, in the freezer. I have to have really cold cloths applied to back of my neck/shoulders and over my eyes/forehead at the same time.
      Zomig is not an over the counter medication here in Uk, so probably same in US.
      Hope that helps and you find relief. Kind regards

      1. Aren't you wonderful to chime in with your compassion, wisdom, kindness and support on your first day with us? Welcome! We're so happy (and clearly blessed) to have you with us in our community.
        Zomig is in the triptan family of drugs and terrific to hear how well it works for you. Like with many migraine rescue interventions, its efficacy can depend greatly on when we choose to take it. And this we learn through trial and error but generally, the earlier the better at the first sign when an attack is brewing.
        Thanks, too, for the tip of the cool, frozen cloth. What mentions above is a wonderful invention- called a headache hat- a cool frozen squishy thing to be kept in the freezer. There are many versions of it that can be purchased from amazon- some can be worn like a hat, others velcroed around the neck and head. All with the same purpose of what you describe- something nice and cool.
        I think you might both enjoy this video that invited our community to share what strategies they employed for both cold and hot therapies to manage pain: Be sure to read the comment section that follows it. Some good ideas there.
        So glad to have you with us! Welcome and grateful you chimed in with your well-earned wisdom from a quarter of a century in the field of migraine. We have undoubtedly a lot to learn from you. Look so forward to hearing more! Warmly- Holly team.

    2. Hi there- welcome to our site! So glad you're with us. It seems 's message was partially cut off so I'll see if I can continue on where she might have been headed.

      I've had migraine since I was 5 - first episodically and then for the past 20 years chronically. I can relate to so much of what you shared. While it is tempting to wonder about diagnosis - I'm afraid to say that migraine is frequently the cause of our challenges (side note- aura only presents in around 25% of migraine patients). I'm assuming you were diagnosed by a medical professional at some point? It's wonderful to get a real work up/evaluation at some point, if you haven't already. I went to a three-week in-patient clinic and was hoping to emerge with a diagnosis other than migraine as there's no cure for this condition. I was heartbroken when they told me that's what I indeed have- plain and simple. It felt like a life sentence:

      The meds you're on- which are a combination of preventative and rescue sound like a pretty classic approach to managing migraine - and it is very normal to encounter exactly what you described. For whatever reason, we do seem to evolve away from the efficacy of treatments. Our symptoms change- side effects shift- treatments that worked for a while fade and we have to return to the drawing board for another try at things: Luckily, as the very kind and compassionate community member shared in this feed (welcome to you to the community as well!) -that you are not alone and there are plenty of treatment options for migraine out there these days. The drug she mentioned- Zomig- is in the class of drugs known as the triptans. Sounds like you're already taking those.

      But, to back up- back to the topic of CGRPs- these are the drugs you were mentioning earlier (Emgality, Aimovig, Nurtec) these are the newest class of migraine drugs that have come out and have a pretty high success rate. However, what works for some doesn't work for others. I'm interested that your doctor went from Emgality to Aimovig. Although these drugs fall under the same umbrella they have a different way of operating. So if Emgality was working for you - and Aimovig didn't, you may want to consider Ajovy (works more closely to Emgality). This article helps to explain how all the CGRPs are the same or different from each other:

      Since you're interested in hearing about various treatment options- you might want to try navigating our interactive treatment page that will help walk you through various options (preventative and rescue):

      It's not to be discounted- the exhausting process of trying new treatments. It truly asks a lot of us. I just wrote a 2-piece article on this topic. We have well-meaning people in our world who will say "have you tried this or that?" and they don't understand that with every new treatment comes potential new side effects, as you noted with Emgality- and potential interactions with the other meds we are on, etc:

      My last question, for now, is to ask if you feel happy with the connection you share with your migraine specialist. Are you seeing a specialist? We'd encourage you to do so given your frequency without meds is near the chronic range. If we can help connect you with a specialist, please let us know. These doctors, though there is an unfortunate shortage of them, are most well-trained to help navigate the complex neurological condition that is migraine.

      I hope I've not overwhelmed you with information here. The point is, that we do have a lot of resources and we are here to provide you with support and compassion. We are absolutely here for you and in this with you. So glad you reached out and are with us. Stay in touch. Warmly- Holly team.

      1. Thank you all for this information!! this is super helpful! I have a few initial questions for you (I'm sure I'll have more as I comb through these resources). First is - have you heard of the side effect of weight gain with Emgality? I'm not sure there is much research on it but I know a lot of people on forums similar to this had complaints of it as well. Along with that, do you know if this is a potential side effect for Ajovy?

        Also, I have had a decent neurologist over the past few years, while I've had testing done (MRI and bloodwork) most of our meetings have been telehealth and he seemed unsure based on my mix of symptoms so I'm not sure I got a proper diagnosis. I just started a new job and am going to move so by October my health insurance will have kicked in and I will be in a new state. I've been doing some research on neurologists in my new city but if you guys have any resources for finding a good specialist that would be super helpful. Thanks again!

        1. Such good questions! First, as to Emgality and weight gain - I've not personally experienced that. I've been taking it for three years now. But, there are definitely people who have reported what they believe is a connection between that drug and weight gain. Here's a link to our various (and there are more than several) forums created by community members who raise this topic repeatedly: I do not see those correlations when I do a similar search for Ajovy. That said, Ajovy seems to be less prescribed than Emgality and Aimovig, for whatever reason. We do invite our community members to share the side effects they experience with various medications, so you'll find that here regarding Ajovy:
          And yes, we absolutely can send you a list of migraine specialists in the United States. The only unfortunate caveat is that there is a shortage of these types of doctors so there may not be one close to where you are moving. Still, good to be looking now and see if you can get on a list to be seen as there is often a waitlist since they are in demand:
          Hope these resources prove helpful for you. Please let us know if you have any further questions or need for support. We are here for you and in this with you. Warmly- Holly team.

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