Good Ol Migraines
Hello all,
I have been waiting to post something about getting migraines, but here it goes.
As a kid (currently 35) i maybe got 1 or 2 migraines a year starting at age 14. They were bad (throwing up, blurry vision, pounding headache for 2 days), but it wasn't that often so big deal. Fast forward to Oct. 2019. I remember it well, I go my first migraine in about 3 years but it wasn't to bad. Lasted about a hour, then I was fine. The next day I got another one similar to the one the day before. This was the first time I have ever gotten them on back to back days. I went 3 months before I got the next one, which was the exactly same thing, back to back days. Then, on the March 1st started the flurry of Migraines. I got 20 that month, followed by another 18 the next month. This went on for 4 months, having more headache days than good days.
I went to see my doctor. They did scans and blood work and sent me off to a specialist. I was started on Emgality which took my migraines from 15-20 a month down to about 8. It also took down the severity of them as well. I was on this for 1 year, but I noticed by the end of the month, it seemed the medicine was wearing off, so I switched to Ajovy. I have been on that ever since, and its hit or miss. I should say, I do have eye floaties and I do have issues with my c3-c7 verts in my neck which does cause neck pain. I also have had 2 rounds of botox (not noticing any results from that)
I can go as long as 2 months without a migraine or i can get 4-8 in a month, its sooooo inconsistent. I will have to say, my Migraines are not bad. I always get Aura wit them, usually last about 45 mins, and I usually only have a slight headache when its over. So for that, I am grateful for, but it still is getting old.
That is my current situation in a nut shell, which is a lot of info. I guess I am finally getting all of this out there in hopes of learning something new. Its just crazy to me that all of a sudden I go from maybe 10ish in my entire life to almost 100 in a year. Some wires have to be crossing, I just cant seem to figure it out.
Thank you for joining the migraine.com community and posting in the forum! We are glad to have you here. Migraine disease is sort of tricky. It affects each of us in different ways and can be very individualistic. I'm glad you have sought out treatment. This is helpful in getting the disease managed before it has a chance to become chronic. The CGRP class of drugs has been helpful to many people. My husband started on Ajovy and then had to switch to Emgality due to insurance issues. Like you, he has noticed the pain piece of his attack cycles are less severe, but the effects wane around the third week. His worst attacks are generally during the fourth week before the next injection. He also uses Nurtec as an abortive and a Nerivio device to help get through any attacks that break through. Migraine will commonly change and morph over time, too. This makes managing it challenging at times. The crossed wires is a good way to describe this neurological disease. Your brain get short circuited, lol. Are you tracking your attack cycles in any way? This is a great tool to help you and your doctor find patterns that can help you be proactive in managing attack cycles. I'll give you a couple of links to articles you may find helpful as you go along on the journey. Please keep in touch! Warmly, Cheryl migraine.com team.
https://migraine.com/migraine-treatment/what-are-cgrps
https://migraine.com/devices
https://migraine.com/living-migraine/interictal-phase-between-attacks
https://migraine.com/blog/keeping-migraine-diary-basics
Welcome!! Thank you so much for sharing your journey with us. You're not alone - migraine can be frustrating and frankly exhausting to live with.
Try not to lose hope, there are over 100 medications, supplements, devices, complementary therapies and lifestyle modifications that can be used to treat migraine disease and most of us are on a combination of these.gave you great information on devices and here is information on where to start with prevention medications;
https://migraine.com/blog/migraine-preventives-start.Botox can take three, maybe four rounds for some of us before we see a reduction in migraine frequency and severity. It's vital that the health care provider be an expert in the Botox migraine protocol. I've heard from many who don't see results this may be a result of not following the migraine protocol. I've noticed a huge difference in practitioner administration. Have you seen our information on Botox? https://migraine.com/video/video-of-botox-injections. I've noticed a huge difference in practitioner administration.
Speaking of practitioners, it may be time to see out help from a doctor who is a true expert in treating migraine and headache disease. These doctors are different from general neurologists as they are certified in headache medicine, all neurologists are not. General neurologists may be fine doctors but have a hard time being experts in one area because they treat many conditions such as stroke, epilepsy, multiple sclerosis, Parkinson's and more. A true migraine/headache disease doctor treats migraine and headache all day, every day. Here is more information on how these doctors are different and how to find one;
https://migraine.com/blog/really-find-headache-specialist/
https://migraine.com/living-migraine/neurologist-vs-specialist
https://migraine.com/living-migraine/change-thoughts-new-care. I've found seeing an expert doctor can have a huge impact in our care.
Please let me know what you think and I'm wishing you a low pain day, Nancy Harris Bonk, Patient Leader/Moderator Migraine.com Team
Similar has happened to me too. I've had migraines since being 13 years old I'm now 33 but they started off once a month then stopped after my second child but 4 years later they returned. I was only having 1 every 6 months but since we came into August I have had a migraine every single day each time with Aura. I don't know what's triggered them I think possibly my back and neck so I've booked into see physio to see if that will help. I have also been put on Topiramate 25mg which I'm going to start tonight so I'm hoping my migraines can be reduced because I am struggling to carry on like this. I'm depressed and have outburst of crying episodes because it all gets to much for me. I am praying for migraine free times but I'm not hopeful. My Drs don't care they wont transfer me to a neuro which I feel is essential with migraines because drs don't get it unless your lucky enough to get a dr that also has them. I wish you all the best
Dearest
- I'm so glad you reached out to share what you are dealing with. Sounds incredibly upsetting to have shifted into chronic migraine with little answers and not much support from your doctors. Many of us have experienced similar journeys and understand what you're navigating. Even though it can feel very isolating- you are not alone in this.
I'm guessing by some of what you shared that you might not be living in the US, is that correct? Even so, are you not able to bypass your doctors to seek evaluation and care from a migraine specialist or neurologist? I agree with you that connecting with a doctor who has more specialized training may lead to better care and relief. I've lived with chronic migraine for decades and have learned that since there is no cure, the goal becomes to manage the symptoms and pain. Having a healthy partnership with a doctor is key. There are thankfully many types of preventative and rescue treatments available these days. Topamax (which I've been taking for over 20 years) is a popular preventative though it is not without side effects. Many in our community report feeling brain fog - especially when adjusting to the dosage. I experienced this and it faded with time. If the medication helps you, this troublesome side effect (if you experience it) can be worth it. If it's too bothersome, as I said, there are many other options out there. Here are our resources on Topamax: https://migraine.com/search?s=topamax. And here is a helpful interactive page on currently available rescue and preventative options: https://migraine.com/treatment-options.
It is normal to feel overwhelmed emotionally by the weight of migraine. It is a demanding and depleting condition that asks so much of us. Please know we are here for you to provide support and compassion anytime. It can help to connect with others who are facing the same issues. We also encourage anyone living with chronic migraine to consider having a counselor to support them through the journey due to the deep challenges involved. Also, it's helpful to keep in mind that migraine is a complex neurological condition that comes with many symptoms and comorbid conditions. Depression is one of those conditions that often accompanies migraine: https://migraine.com/blog/depression-more-than-just-comorbid-conditions.
As I said - we are here for you to provide information and support anytime. I hope you will keep in touch. Thinking of you. Warmly - Holly (team member)
Thank you for replying back to me.
I live in the UK so not has much here like the US but I have found a migraine centre they are in London about 300 miles from me but they do over the phone appointments if I didn’t want to travel which is good. They emailed me yesterday to ring them to book an appointment think it’s about £300 per appointment but it’s worth it if they at least give me something to make my migraines less frequent. Sorry for the late reply I had a really bad migraine yesterday worse one I’ve had in 7 days and it really wiped me out. Regarding my back issues I am unsure if the back pain is my migraine letting me know it will be starting at some point on that day because once my migraine starts my back ache goes so not sure now if this is just another new symptom of a migraine starting. I did notice yesterday though that my headache came on before the Aura this time something that’s never happened before and normally if I get the Aura on the left side then my headache comes on the right side but yesterday my headache was on the same side has the Aura so not sure what was happening yesterday but I have noticed that the more I keep getting numbness the more that feeling doesn’t fully return back which is scary.
I have an optician appointment today just to have my eyes checked because I feel when I’m looking at the phone or screen to much my eyes go blurry so all this could be to do with me needing glasses I hope anyway at least then I know why they have become more frequent.
I will book in for counselling because I am truly struggling I’m hardly eating because I feel so sick all the time and I don’t know if that is from taking pain relief everyday for the headaches or if it’s from me constantly being worried about my migraines I me feel better if I knew that I was only having a few a month but I am getting them everyday without fail so it’s actually made me very anxious now. I’m lucky enough to have a supportive husband and we have our own business so he can be at home looking after my little boy if the pain is too much for me like it was yesterday.
I’m still trying to think of what could be causing these everyday food wise and drinks etc but nothing is standing out.
I’ve not had cheese for a week I’ve cut down my sugar intake I was drinking 3 cans of Coke a day some days now I’m having 1 can of that I’ve also stopped all chocolate for a week now. Sometimes the only thing I have eaten on a day that I’ve still had migraines is toast, fish and chips and a drink of Coke oh and I always start my day off with a cup of tea and I don’t have anymore then that 1 cup cos I was worried that was causing it but nope still getting them. My husband did read up about something though regarding vaping I was a smoker before I had my children 20 plus a day but stopped when I had kids then after went onto vapes been vaping for a few years now but he said vaping and smoking can cause migraines to increase but surly after doing it years it would affect migraines now would it? Or does the triggers change from month to month? So it won’t always be the same things triggering you that once maybe used to trigger you?
Sorry for the long post and thank you so much for taking your time to reply back it means a lotGood for you for evaluating your life in a comprehensive manner looking for potential triggers. I often say that we have to become detectives looking for clues in every corner of our lives as migraine triggers can hide just about anywhere. Similarly, as migraine is a complex neurological disease- it is often comprised of many unique symptoms - and rarely do two people with migraine have the same experience of it.
I'm so glad you are getting connected with a migraine clinic in the UK. Even though it is far away and expensive, I hope it will be worth it as these types of doctors have received advanced training in this complex condition. I hope you will receive a proper evaluation and resulting treatment plan that is tailor made for you.
Looking for dietary triggers is an important exercise. Many people with migraine try an elimination diet to gain clarity on this front: https://migraine.com/blog/whats-elimination-diet-manage-one. Through my own elimination diet, I learned that dairy, gluten, alcohol, and grains triggered migraine attacks. Removing those triggers hasn't stopped my attacks as I have multiple other triggers- but it has helped me avoid attacks related to my diet.
Regarding smoking- this is a question worth asking your doctor. I agree that it wouldn't seem like a current trigger if you stopped actively smoking years ago.
Triggers can evolve and change over time- but I think you have to be actively exposing yourself to the trigger for it to be problematic. All that said, I also tend to believe that migraine is a condition, like diabetes, that lives within us. We can trigger and worsen it by exposing ourselves to our specific set of triggers, which is why it's helpful to understand what they are- however, migraine is a condition that also resides within us. So, we can get attacks and experience symptoms sometimes for no rhyme or reason. It can become exhausting to constantly try to find "the reason" for "this attack" - it sometimes just hits us.
Of course if the trend is increasing and getting unmanageable, we do our best to avoid our triggers and find preventatives to quiet that trend.
Good of you to get your eyes checked- this, like the numbness, could be its own matter or may likely be related to the migraine condition. Would be worth mentioning to the migraine doctor when you have that appointment. We have a lot of resources on numbness: https://migraine.com/search?s=numbness.
Also glad to hear you'll be connecting with a counselor. You've done a great job outlining how migraine can become a full-time job. The management of it- responding to it- lining up care for it- and the anxiety and fear related to waiting for the next one to hit. It's a lot.
I encourage you to make note of all of your concerns - symptoms - potential triggers, etc to take to your appointment with the migraine centre doctor (whether in person or not). This way, whenever another concern arises, you can put it down and outside of yourself, knowing that you have a place you can air it. Hopefully doing so can lighten your proverbial load a bit during this especially challenging time.
We are 100% here for you as you navigate this journey. I hope you'll stay in touch. When is the appointment, do you know yet? Thinking of you. Warmly - Holly (team member)
