Status Migrainosus

By moggiesandmutt

1 min read

My 16-year-old daughter has had a headache now for 37 days. Things did move quickly with blood tests, MRI, and a consultation with a neurologist.

Her treatment plan

She was prescribed Amitriptyline 10mg, then 20mg, and now 30mg. 10 days ago she had a bilateral greater occipital nerve block. We were told that it might take a week to work.

She was prescribed Naproxen 200mg twice daily with Sumatriptan 50mg, if required, along with Prochlorperazine.

Her pain levels

During the day her headache is around a 6, never goes away, and can spike to a 10 at any time. Early evening is when things go wrong as this is her most painful time especially if she has washed her hair. It often results in her lying on the floor holding her head.

Looking for help

She has had an awful few and although we called NHS 24 (Scotland's telehealth organization) - they can't help. Her GP has contacted the neurologist and asked for her to be seen urgently.

As a parent, it is difficult to see your child in so much pain, and not be able to help. I have joined this community to get as much advice and information as we can to help make her life better.

Thanks for reading.

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azreynolds Member
 So sorry to hear she is in so much pain. It seems so unfair for kids to have to deal with this. But don't lose hope! Have you seen the neurologist yet? I dealt with continuous daily migraines for many, many years, often fainting and losing the ability to talk. But finally by using a combination of Aimovig, Botox and special glasses, I've lowered them to only 8-15 a month. If you can find a good neurologist, you might have a chance to find the right combination of medication. I pray for her sake the answer is sooner rather than later.
1. CommunityMember4a562d Member
 <inline-mention username="azreynolds" user-id="3677307"/> yeah we have been very lucky in a sense with the NHS as we have see the same neurologist twice and had an MRI all in the space of 6 weeks. the down side not a lot can be done and she needs to wait on the medication working.
Melissa Arnold Community Admin
Hi. My heart goes out to you. It sounds like you are a great parent, and the fact that you are here with us underlines that. Have you heard anything about when she might get in to see the neuro? I have heard about how long the wait can be with the NHS -- in the meantime, we are here in this with you both, to answer questions or just to listen if that's what you need. We have some articles about children with migraine but right now I just want to share this one with you. Obviously it's not perfectly relevant because the writer also has migraine, but I have a feeling you may see yourself and your daughter here in some ways. <a href='https://migraine.com/living-migraine/circle-of-life-parenting-a-child-with-migraine' target='_blank'>https://migraine.com/living-migraine/circle-of-life-parenting-a-child-with-migraine</a> Thinking about you. Remember to take good care of yourself as well, okay? -Melissa, <a href='http://migraine.com' target='_blank'>migraine.com</a> team
CommunityMember4a562d Member
Thank you <inline-mention username="Melissa Arnold" user-id="3827796"/> for the link I will take a look after work. <inline-mention username="azreynolds" user-id="3677307"/> and for replying. We had our neurologist appointment yesterday pretty waste of time really. He said he didn't have the appointment space to keep seeing her and that her GP was more than capable to manage her symptoms. It's really a waiting game. We should see a difference in 3 months if not then we will change her meds. He has removed her off all medication except Amitriptyline which he has now increased to 40mg he will write to GP on how he can support her. He has prescribed 900mg of aspirin for her to take if it gets really bad. She can only take this 10 times in a month to prevent drug related migraine. He has done an urgent referral to psychologist as he feels they can help her deal with the pain. I asked him if there were any drugs he couldn't prescribe under NHS due to cost? He said no, he also said that due to her age alit of the drugs have not been tested. My daughter and I had a long conversation last night. We are at the conclusion that she needs to be more proactive and focus on beating it herself. No-one is going to help us. We started research and mentally she is in a better frame of mind. Although it's a different story this morning after yet another sleepless night. Thank you. 
1. Holly Harding Moderator & Contributor
 <inline-mention username="CommunityMember4a562d" user-id="6620752"/> Hi there- I'm sorry that you both felt less than enthusiastic about the neurologist. Are there other neurologists you could see? As to the ear pain- I wanted to give you this link to look around to see if you might find anything of interest: https://migraine.com/search?s=ear%20pain. Also I wanted to ask, since it sounds like we are in a between a bit of a rock and hard place due to your location, her age, the doctors in reach all making access to the most current and potentially effective treatments being out of reach - this might be about finding ways to make her comfortable for the time being. As you, said, giving her a hug is what you are trying. And there are many natural approaches that can really help to offset some of the symptoms of a migraine. I know that, for instance, for me - I turn to a very spicy ginger beer (a type of ginger ale) because it works better to stop my nausea than some of the medications out there. I also reach for an ice pack at the first sign of an attack as it can really help calm things down. I know others like heat. And then there are lots of natural remedies that people have tried and some have had success with. Here's a list: <a href='https://migraine.com/migraine-treatment/natural-remedies' target='_blank'>https://migraine.com/migraine-treatment/natural-remedies</a>. Besides ear pain - what are her primary symptoms? We are here for you - please stay in touch and know we are thinking of you and your daughter. Warmly- Holly <a href='http://-migraine.com' target='_blank' rel='noopener noreferrer ugc'>-migraine.com</a> team. 
2. Melissa Arnold Community Admin
 <inline-mention username="CommunityMember4a562d" user-id="6620752"/> It's so hard when we walk away from a doctor's office feeling like we haven't made any progress. As the two of you are working on your own, I also want to recommend a migraine journal. First, this does not have to be fancy or complicated. A note file on a cell phone or a document on the computer are fine options, as are traditional notebooks if she would rather choose a fun design. The idea is to keep track of what each migraine attack was like -- what she felt, how long it lasted, and what helped -- as well as anything that stands out about the circumstances surrounding the migraine. What did she eat? How was her sleep the night before? What was the weather? As an example, you might write: 1 Nov. 11 a.m.: Dizzy, ear pain, head pain 8/10. Took amitriptyline and pain dropped to 5/10. Incoming storms, had salty food at last night's dinner. See, nothing crazy. But over time, you may start to notice patterns that emerge in such a way that you can identify what could be triggers for her. At the very least, if you identify a trigger or two you can work on avoiding them. Here is a link that talks more about journaling: <a href='https://migraine.com/blog/keeping-migraine-diary-basics' target='_blank'>https://migraine.com/blog/keeping-migraine-diary-basics</a> There is also a lot you can do with diet but I will hold off on that because there's a lot to absorb here. Let us know if you have more questions! Hugs to you both. -Melissa, <a href='http://migraine.com' target='_blank'>migraine.com</a> team
Holly Harding Moderator & Contributor
<inline-mention username="moggiesandmutt" user-id="6621238"/> - I just wanted to chime in to thank you for sharing some of your and your daughter's journey with us and to welcome you to our community. We are here for you. Like you said, it is painful to see your child in pain. You are not alone in this. This community is made up of people who are living with migraine every day and people who are supporting those who have migraine. Or both! I have chronic migraine and my son also has migraine. He had a very challenging time with the condition as a teenager and has managed to shift from chronic to episodic now that he's a young adult, thankfully. He only has attacks maybe once a month now and they are manageable. I'm glad your GP has reached out to a neurologist on her behalf to have her seen ASAP. There are a lot of great treatment options out there these days in addition to (or instead of) those she's already tried. Here is an interactive list of current treatment options (both preventative and rescue): https://migraine.com/treatment-options. As I said, we are here for you and so glad you reached out. Please let us know if you have any specific questions in advance of the appointment with the neurologist. I hope that comes up very soon for you. Warmly- Holly <a href='http://-migraine.com' target='_blank' rel='noopener noreferrer ugc'>-migraine.com</a> team.
CommunityMemberba5417 Member
I have found that Aimovig works to prevent migraines, Nurtec works to stop one, and fragrance-free (unscented) shampoo helps, since that was a trigger for me.
1. Holly Harding Moderator & Contributor
 <inline-mention username="CommunityMemberba5417" user-id="4380135"/> Thank you so much for sharing what works for you. It's so helpful to share resources with one another! We're grateful you're with us. It can be hard to find fragrance-free shampoos these days! Warmly- Holly <a href='http://-migraine.com' target='_blank' rel='noopener noreferrer ugc'>-migraine.com</a> team. 
2. CommunityMember4a562d Member
 <inline-mention username="CommunityMemberba5417" user-id="4380135"/> I did ask about different drugs but was told there aren't a lot out there that have been tested as safe for under 18. I had read about Aimovig I will certainly keep a note of the names thank you
Cardgal Member
If she is complaining about her ears, try an OTC mouth guard. I’ve been getting weird earaches and found that using one cuts the ear pain. Think it’s all part of my TMJ pain, occasionally I will sleep with one in also if my jaws hurts too.
1. Holly Harding Moderator & Contributor
 <inline-mention username="Cardgal" user-id="6641327"/> Thanks so much for sharing how your mouth guard is working for you. This a great tip. I do think TMJ can be very far reaching in terms of migraine. Really great to hear you've had success with an OTC one as the ones created by dentists can be quite pricey- though I've heard they can work well too: <a href='https://migraine.com/blog/update-on-nti-device-for-tmj-discomfort' target='_blank'>https://migraine.com/blog/update-on-nti-device-for-tmj-discomfort</a>. You, or those reading this thread, might be interested in this resource that mentions night guards and other strategies to help with easing tight muscles during sleep: <a href='https://migraine.com/living-migraine/waking-up-triggers-relief' target='_blank'>https://migraine.com/living-migraine/waking-up-triggers-relief</a>. The comment section that follows that piece is full of good insights from our community members. So glad you're a part of our community and hope you'll stay in touch. Warmly- Holly <a href='http://-migraine.com' target='_blank' rel='noopener noreferrer ugc'>-migraine.com</a> team.
CommunityMember4a562d Member
Its been a very difficult few days where my daughter has been in a lot of pain. Her headaches might ease off a little but they never go away so its constant. On Thursday night she had a really bad head and on Friday she had to come home from school. We called the doctors and they have now prescribed Zomig nasal spray. I have major concerns about all the drugs she is taking and thing they may actually be causing her more issues. Tonight after a another awful day she has broken down and cried, she is 16 and to expect her to continue the way she is when she has exams is not the solution. I have an appointment with her GP tomorrow and I intend to ask for a 2nd opinion. If not on the NHS then I will arrange something private. Breaks my heart seeing her like this. I just can't believe in this day and age that there is nothing that can help her. Has anyone tried reflexology or acupuncture with any success although she is not keen on either. We are at that desperate stage now.
1. Melissa Arnold Community Admin
 <inline-mention username="CommunityMember4a562d" user-id="6620752"/> Hi there. Good to hear from you again, but sorry things are still going so poorly for your daughter. I think a big part of why we haven't figured out more, scientifically, about the mechanics of migraine is because headache medicine is still in its early stages. Neurology has always been a huge field that includes so many different conditions ... some are starting to focus exclusively on headache diseases which is what is needed! I can only hope that your daughter will reap the benefits in her lifetime. It's good timing to mention acupuncture, we just had one of our advocates write about it last week. Here is her article: <a href='https://migraine.com/living-migraine/trying-acupuncture' target='_blank'>https://migraine.com/living-migraine/trying-acupuncture</a> Also, I believe our Cody Leach does acupuncture and really enjoys it! I can't seem to tag him here but I will ask him to stop by here and give his thoughts. Hang in there, you are working so hard. Staying with the process is key. Hugs to you both! -Melissa, <a href='http://migraine.com' target='_blank'>migraine.com</a> team 
2. Cody Leach Community Admin
 <inline-mention username="CommunityMember4a562d" user-id="6620752"/> I think it's understandable that you feel concerned about your daughter's health, and that you want to help her make medical decisions that are best for her health. I am currently doing acupuncture and find a lot of success with it. I am unsure how different acupuncture would be with a minor versus an adult, but I am sure you could look into it. Acupuncture for me is mildly painful, and most of the time there is a feeling of euphoria and relaxation. Most of the time when I am at my appointment I become so relaxed that I fall asleep on the table. It has been helpful for me to reduce muscle tightness in my shoulders and neck, which I believe has helped reduce tension in my face related to my migraines. After starting acupuncture, I went from taking 8-9 sumatriptan per month to about 2. Please do let us know how the GP appointment went. We are all here to support you and do what we can to help. It seems like you are doing everything you can to assist your daughter through these difficult migraines, and it's clear that you love her very much. Warmly, - Cody (Team Member)

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