At last Migraine breakthrough

There is a great news at last. It has been in all the news this morning here in UK, and it has been long time in development, but there is a completely new concept in migraine treatment. What is more important it works, and there are practically no side effects. It does not seem believable, since we have been let down in the past so many times with false hopes. But it is a completely new drug, specifically created for M, a new approach to M treatment.

A miracle? We will see how it works, but it is real so I thought I will pass it on, so you can do more of your own research.

I am very lucky, and this is the reason why I do not come here very often any more, since after decades of suffering M hell, I no longer get them (getting older has it's own benefits). I think my M was mainly hormonal, I also used HRT, but when I stopped taking it my M practically stopped. I have other chronic health/pain issues now, but  without M they are easier to handle.

Here is the link to the article telling you more abut it (BTW Prof Goadsby was in the past my neurologist and he was extremely helpful to me personally, and determined to keep on trying to find help for all M sufferers):
http://www.bbc.co.uk/news/health-42154668

Thanks for sharing Mini. I, too, have stopped using this forum as my life has gotten busier and busier. CGRP-targeted treatments have been on the horizon since about 2016, and so I have been waiting eagerly for them. It seems they will be commercially available in the US beginning this spring!! If anyone has tried them or is going to try them, please post here to keep us in the loop.

Thank you for your response. I do hope that despite being busy, you also had some improvement in your M frequency, or intensity. I am glad that you have been following the new developments in M treatments.

I know that despite suffering so much many people have given up trying, after too many disappointed.
We have all been through such feelings, but even when my M were at its worst, I went on looking and because of this, I have come across preventatives (like Gabapentin) which did make some difference.

Then Imitrex/Imigran was a true life changer when it first appeared, it was a revelation. I still remembering both crying with relief, and dancing around the room because at last "something worked", that something stopped the pain. It was like miracle, But  M kept returning .

I do not expect any medicine to be 100% effective,  simply because not two person have exactly the same symptoms, or causes of M. So, the greater variety of treatments we have, the better.

Somehow, I believe that if this new preventative works, it might just be the game changer because this kind of medicines is a new concept.

I cannot wait to see the first reports here, when this new preventative becomes available, so please do let us know.
With best wishes
Mini

Hi Everyone,

It has been a long long time since I have posted anything on this forum but I do check the posts from time to time for updates. I saw your message re: Aimovig, Mini, and felt that I should share my experience, as a warning for those who are thinking of trying it.

First off, I should say that my migraines are mostly a daily occurrence and have been for almost a year now. By the end of last summer, I was starting to feel pretty desperate as I have a four-year-old daughter to look after and she has lots of energy. Despite my reticence to try a brand new med, I decided to give it a go because it was reportedly very safe and had very few side effects. In Canada, we are able to get the drug for free for the next couple of years so that was an added bonus.

The first month, I didn't notice any difference at all but I guess it takes the drug a while to get into your system and I was visiting family in Mexico so my schedule/diet/self-care routine was all off.

The second month, I basically experienced what felt like a miracle. I was having fewer migraines and the ones that started up seemed to burn out before they really got going. I was taking way less abortive meds and was finding that my meditation practice was sometimes enough to stop the migraine completely. I needed less sleep and was waking up feeling energized for the first time in a long while. It was fantastic!

Then month three hit and I started dealing with some pretty major side effects along with daily migraines again. Not only was I dealing with the fatigue from the migraines but I was just plain exhausted most days, more so even than usual. I began gaining weight because I didn't have the energy to exercise nearly as often as usual. I was also having more trouble than ever concentrating and felt like I had a fairly constant case of brain fog. Plus, I had sore breasts, I was feeling irritable a lot of the time and was sometimes depressed.

I spoke with my neurologist about my symptoms and he felt that because I had had mixed results, I should have one more injection and see how things go.

I did my fourth injection on March 10 and I am counting down the days until the stuff clears my system. I feel miserable a lot of the time now and all I really want to do is hide away in my bedroom, reading and sleeping. The side effects seem to have intensified and the migraines are as bad as they've ever been. If anything, I'm having more severe migraines now than I was before I started the Aimovig.

So, I just wanted to warn those of you who are thinking of trying this drug that there are far more possible side effects than those listed on the information pamphlets. After doing some internet research, I have found that many of the side effects I have been experiencing are the same as those others have reported.

While I generally prefer to base medical decisions on research studies, I feel that the side effects of this drug have really been downplayed and would therefore advise anyone who is thinking of taking it, to obtain information from a number of different sources. Good luck!

Thank you for your feedback Cookie M. It is always good to have a feed back, so we can compare things. This is what this forum was so good at, in the past (before it was sabotaged by an aggressive group which deliberately damaged this site, and should remain nameless). Anyway, I know many  migraneurs still come here to read it, for comfort and information, so your comments are helpful, I am sure..

I am so sorry that the new medication did not work for you due to the side effects, this must have been a big disappointment to you, because I know that, in the past, I had similar results with medicines that worked for other people, but were useless for me,.

I also know that each person's body reacts differently to the same medication, so I kept on trying and I had some great improvements as a result. I came to conclusion, that unless we try we will never make any progress.

In meantime, I hope that you will find something that works for you, so do not loose hope Cookie M. Unexpected happens, even if we have to wait for it a long time.

Thanks for your kind words, Mini. I know that this too shall eventually pass and that there is always something else out there to try. At the moment, I am just feeling so very tired. But I won't give up hope. I have a wonderful family and I need to keep going for them.

I am so happy to hear that you are doing better these days.

I saw your reply Cookie and wanted to add my own experience as well:

I started Aimovig Oct 2018. For 6 weeks my migraines were cut by half or more (going from 4-5/week to 1-2). My quality of life improved so significantly I could hardly believe it! But around 6 weeks the migraines came back with a vengeance. It coincided with the Christmas holiday, which I worked and we were understaffed, and the next few weeks in January were also stressful, so I chocked it up to that. But after the stress subsided the migraines did not. Similarly. my neuro could not explain why I would respond so well for 6 weeks and then it was like the meds backfired. My theory is placebo. And since this has happened I have learned more about placebo and apparently the more invasive the intervention (pill vs injection vs surgery), the greater the placebo effect. I did not experience the side effects you describe Cookie, except maybe some weight gain. I have also learned that these injectable drugs work fairly quickly--you should notice the effects the next day after you take it, which was the case for me, but it does not explain why it suddenly stopped working. I have heard that some people are "super responders" who have near elimination of migraines, some people respond slightly (I would put myself in this category), and some people don't respond at all.

My neuro seemed unphased and acted like "well there's no harm in staying on the drug!" but I insisted that I stop. Then I switched neuros and the new one suggested I try Emgality because it has a different mechanism of action. Tomorrow I take my 3rd injection of Emgality (week and so far I have made it longer with similarly positive effects. I have had between 0-4 migraines a week, averaging 2 a week, and once again my quality of life has improved. But I'm not holding my breath. I follow the migraine literature fairly closely and next time I see my neuro I will ask about Gepants (CGRP antagonists used for acute treatment) and Ditans (serotonin 1F receptor antagonists), which are still coming down the pipeline. There are also a number of noninvasive treatments that past neuros were less excited to get for me but I would like to try (trigeminal or vagal nerve stimulators, and single pulse transcranial magnetic stimulation).

I am so sorry your headaches are worse, but there is always hope they will get better! Keep your chin up!

CG