Has anyone had an increase in migrain... - National Migraine...

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Has anyone had an increase in migraines after getting the flu shot?

Purple_22 profile image
13 Replies

I read that someone did, but I’m thinking it could have been caused by something else unless there are more people that have experienced this. Thank you.

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Purple_22
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Cat00 profile image
Cat00

It doesn't cause migraines for me and I have it every year. But to be honest it's such an individual thing, both my kids had it on Thursday my daughter was completely well but son was really unhappy and we had to give Calpol.

Purple_22 profile image
Purple_22 in reply to Cat00

I’m so sensitive to everything and I’m suffering so much, I’m just not sure what to do. Thank you for responding, I appreciate it

Cat00 profile image
Cat00 in reply to Purple_22

Trouble is if your brain is in an 'excitable' state then your trigger threshold may be much lower and things that wouldn't normally set you off will at the moment. So one year it could cause migraines and then then next year it might not.

The best thing you can do really is try and dampen down your brain excitability. Normally that would be things that you personally find relaxing or things like meditation etc basically anything that doesn't over stimulate you. Yoga etc etc. I have 2 kids under 6 and personally its almost impossible to live in a calm environment with them around so you can only do what your environment permits. And it may take a while, you have to have a boring life for a while, either that are you go to the GP and have medications review of some sort?

Purple_22 profile image
Purple_22 in reply to Cat00

Meditation sounds like a good idea. I’m constantly stressed and never feel relaxed. Also, I don’t feel like I ever get a good nights sleep. I’m sure meditating will help that too. I’m always worrying about the future, suffering with these horrible migraines. I will really try to relax, meditate and just stay in the moment instead of worrying all the time.

I started getting Botox a few weeks ago. So far I haven’t felt any relief. The neurologist said that I should feel some changes after the first treatment, but it may take a couple of times. I’m seeing her this week for a follow up. There are two medications, I am going to post to see if anyone has tried them, Namenda and candesartan. I read that it’s helped to reduce the frequency of migraines, but hopefully the Botox will work for me and I won’t need to go back to trying different medications. Thank you so much for your help.

Cat00 profile image
Cat00 in reply to Purple_22

Yes I'm very similar, I'm highly strung, but then of course migraines make people anxious. I was terrible at meditation, tried it for years, but it is the classic de-stresser. I'm better with exercise, that helps my stress levels the most, also swimming is very repetitive so quite good. Listening to music, gardening, reading all things that give you a single focus without having stressful deadlines attached to them.

Botox was life changing for me. I have had it for 6 years or there abouts. I had tried 13 different medications before then. The first round made me much worse though and I had to be convinced by my neurologist to have the second round, so glad I did! They also had to spread the injections out more on my neck because my neck muscles got very sore, but once they did that it was great. Only trouble was I had come off it twice to conceive, carry and breastfeed both of my children so I got a lot worse inbetween . Both times I had to give up breastfeeding at 6 months so I could get it again as I was up to 20 days a month of migraine. Then they stopped it when lockdown came in and so I got worse again. But now I am on one of the CGRP injections and that is proving at least as good if not better than botox, although when I do have migraines I feel really weird which I didn't get with Botox.

I have also been on Candesarten although I had to come off it after a couple of months because I've got really low blood pressure and it lowered me further and I getting even more light headed than usual but it wasn't horrible!

Purple_22 profile image
Purple_22 in reply to Cat00

What did you experience with the first Botox treatment? Four days after getting it I couldn’t pick anything up or even do the dishes. I would get a burning in the lower part of my neck in the spine and on the left side in the muscle. The gp put me on prednisone, (because the neurologist never returned my call) then when I was finished with the prednisone I had a migraine all over my head for two days then a really bad cluster. I’ve had a migraine for a week now and for the first time ever, the maxalt isn’t working like it used to. I’m praying that the migraine goes away soon. I don’t know if this is a side effect that will get better after the next round or not.

I had a facet injection in c1, 2 & 3 in my neck three years ago and haven’t been able to sleep on my back or left side since then. Any pressure on the back of my head or the base of my skull will give me a bad migraine. The neurologist feels that the Botox will help this as well.

The pain in my lower neck has gotten better, but isn’t gone yet. I’m seeing the neurologist this week for a follow up.

Cat00 profile image
Cat00 in reply to Purple_22

That sounds very similar to me, I had a terrible time the first 3 months. I was supposed to be delivering leaflets at one point but I couldn't bend my neck enough to get things in peoples letter boxes bc it hurt too much so I had to get someone else to do it for me while I went round and pointed at the right houses! Although like you I have always had a sensitive neck. I had fought for 6 six years to get Botox ( this is before NICE sanctioned its use ) so I was gutted to find it made me so much worse!

Prednisone is a pretty serious drug though so god knows what that has added to the mix. My advice would be to try and get through it, without 6 months of Botox treatment you cannot know if it will work for you, I never had another experience of Botox like I did the first 3 months, although I would suggest you ask them to spread the injections sites out to a flare around the base of your neck because that made a big difference to me. I also learnt over the years to not go to the gym for a couple of days after I had the injections bc my neck would be more sensitive. However apparently it takes Botox about two weeks before its operating at its full capacity to paralyse the muscles so you may need to see how you go for a bit longer if you are really sensitive. If you are seeing your neurologist soon you will be able to discuss my experiences with them and see what they think. My neurologist has never been contactable without quite a time lag so you got ask as many questions as you can while you've got them infront of you!

Lastly what I would say is that my body didn't respond the same way to every round so some would be more effective than others but again it can only lower brain excitability not eradicate it.

Purple_22 profile image
Purple_22 in reply to Cat00

She should be fine with spreading the injection sites out next time, I would think. Some of the injections were in the back of my head, but nowhere near the base of my skull. Was that the same for you? I was just thinking if it would help my neck if she injected closer to it. That will be part of my discussion with her this week.

Hopefully this migraine will only be a side effect from this round. It’s definitely different from my normal ones.

Cat00 profile image
Cat00 in reply to Purple_22

I had 33 injections all over my scalp, face and neck. Basically following where the muscles wrap around the skull. I would also have a couple on the bit where your shoulder muscle meets your neck muscle, sorry no idea what the technical term for that is. Maybe she didn't put so many in the neck areas because she new about your previous facet injections and didn't want to interfere with those areas?

Also my neurologist asked for a description of where my migraines most frequently hurt me, although my migraine pain shifts around a lot, I would often get it in the neck and temple areas so she may have concentrated on those areas particularly.

Purple_22 profile image
Purple_22 in reply to Cat00

It was a frustrating visit. It’s a husband and wife at the practice, both neurologists. I went to the wife for the consultation and was supposed to have her give the injections, but her husband walked in and said she was called away to a meeting. I wasn’t happy, but I know he is also a good doctor. I asked him if he needed to know where most of my pain was. He said no and started injecting. I asked if he followed a set protocol for all patients. He made a joke and said, yeah I’m following directions off the internet on how to do this. I guess he got upset with me, but I was very anxious...It just wasn’t a good experience. I did tell him how nervous I was. It would have been nice if he was a little more understanding and compassionate. I wasn’t trying to say that he didn’t know what he was doing, it was just my first time meeting him. I’ve been through so much and I really didn’t think he knew anything about my condition. From now on I’m checking to make sure I see her. Hopefully I’ll have a better experience next time.

Cat00 profile image
Cat00 in reply to Purple_22

In my experience doctors seem to be amongst the most brittle and egotistic people. Its a rare thing when you get a good one, which really shouldn't be the case, I've had so many bad experiences I ran away once when my friends were so worried about me they called a doctor to the house. I was so ill but I just couldnt trust them at all. We are all so vulnerable, they often hold all the keys to our future wellbeing and some of them really act like they know it to. Although the neurologist I have now I really like but its been a long road getting to this point. If it is at all possible take someone with you, it generally makes them try a bit harder if nothing else!

Purple_22 profile image
Purple_22 in reply to Cat00

I’ve had it with all of them. And I feel like I’m at their mercy because I’m in so much pain. And the office staff isn’t always the nicest. I’ve been dealing with so many different ones for years and unfortunately there aren’t many good ones. I’m trying to find a new neurologist, but still haven’t found one that I really like. I think I’m just going to see how the Botox works for me right now. I need to just relax and do one thing at a time. You’ve been so helpful, thank you. I have a lot to discuss with the doctor this week.

Cat00 profile image
Cat00 in reply to Purple_22

Yes I can't remember how many neurologist I've seen. I once had a migraine for 6 weeks and went to Go, she categorically told me a migraine can only last 48 hours! Anyway hang in there If the Botox doesn't work NICE have just sanctioned another CGRP injector and the one I'm on is available now. Sorry I'm assuming you're in the UK but if not the CGRP drugs are even more available. I did like Botox though. Goodluck!

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