Home General Info & Awareness Headaches, Migraines & Clusters : Quick Poll

Headaches, Migraines & Clusters : Quick Poll

by InvisiblyMe
A cartoon woman clutching her head as though suffering a migraine. To the right is 'migraines: quick poll'.

Migraine Nightmares

Thank you for the kind wishes about the surgery; thankfully it all seemed to go okay and all is well with  Mr/Mrs/Ms Stoma. The last few weeks have been pretty rough, however. While I’ve had regular headaches for a few years and I’m no stranger to migraines, more recently I’ve been getting regular migraines and what are apparently daily cluster headaches. Clusters are new to me. Ever experienced these? Or relentless migraines? Either way, it’s not fun and I fully empathise if you have. I thought I’d do a quick poll so we can see how common an issue these might be among InvisiblyMe readers.

Honestly, I’ve never known anything like it. Every day. A similar time. Pain, nausea, my eye about to explode, can’t see properly, it renders me totally useless. And it has massively grumpified me. I’m losing chunks in the day because of them, and I’m behind on so many things that I haven’t been able to do. That includes emails and blog-related jazz, so I’ll apologise now.

I’m grateful that Sumatriptan works reasonably well, even though it does take 1.5hrs to kick in. Apparently clusters can go on for several weeks. My GP wants to try a daily preventative but I’m hesitant after the last trial of a medication that was awful; we’re sticking with Sumatriptan in the short term and hoping this bout will leave me alone before too long. To think I complained of almost daily low-level headaches and a migraine or two a month… Silly me. This is torture.

Migraine Quick Poll

Migraines are a nightmare for many people. Which got me to thinking… I’d like to do a poll. It’d be interesting to see how many of you also suffer from headaches, migraines and clusters, and if yes to any of these, then how you tend to treat them. If you’d like to share in the comments any medications that you’ve found to work so others can check them out and discuss with their doctor then please do. Want to take part?

[[ Poll ended ]]

On another note… Laughter can be a great medicine & we probably all need a few spoonfuls more of it. It may not be enough to kick ass when it comes to migraines & clusters, but it can lift your spirits when you need it. I came across a post from the lovely Elaine, a fellow blogger that I consider to be a wonderful friend online, where she’s shared some chuckle-worthy memes & quotes. I definitely recommend checking out her site as she also does some fab digital paintings.

I hope you’re all managing okay this week. Thank you for reading and I hope you’re able to take part in the polls as it will be interesting to see the results and maybe even hear from you what you’ve found that works!

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31 comments

Coolncreative17 August 7, 2018 - 9:10 am

So you managed to work out the poll thing I suggested. How did you do that? I couldn’t seem to find that option for my latest blog post on Art and recreation. The poll didn’t vote for me so I just did it anonymously. I have suffered from chronic migraines since I was a child sometimes lasting two weeks at a time and cluster headaches. I have had ones so bad that I’ve been paralysed and having funny sensations on one side of my body. Stay away from the computer as that only makes it worse and rest up. Take care.
Hope you feel better soon!

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BRIGID GALLAGHER August 7, 2018 - 10:10 am

I am so sorry you are suffering so much pain. Headaches and migraine are awful.
Many years ago I had two falls off horses and developed migraines. The only thing that helped the pain was reflexology.
I have not had a headache or migraine in a long long time. ????

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InvisiblyMe August 8, 2018 - 5:50 pm

I’m so sorry you ended up with migraines after your falls, that’s the last thing you’d need after such trauma. I’m glad the reflexology helped you though; how regularly do you go? Thank you for sharing – I hope you have a positive rest of the week, Brigid šŸ™‚
xx

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The Invisible Hypothyroidism August 7, 2018 - 10:15 am

So sorry to hear about the migraines and cluster headaches – they sound just awful. I’m thankful for sumatriptan too although I’ve been needing to use it so much lately that I’ve been a bit worried it might stop working at some point. It’s not fun!

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InvisiblyMe August 8, 2018 - 6:01 pm

I’m sorry you’re having to rely on the Sumatriptan too; good that we have something that actually has a beneficial effect, but not so good with any side-effects or need for regular use. I’m not sure how much use is too much, ie. to inhibit it working in future. I do hope you have a good week and don’t need to use the Triptans too much. Thank you for the comment Ā ā™„
xx

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Hopeless Wonderer August 7, 2018 - 10:40 am

Migraines are the worst thing, I always use a wet flannel on my head when they wont get any better, it just soothes the pain in the mean time, hope you make a speedy recovery from surgery! <3

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InvisiblyMe August 8, 2018 - 5:49 pm

Wet flannels are good, and the Therapearl mask I did a post about before (have you ever seen those?) I’d recommend that. Thank you so much for the lovely comment, and I’m sorry you also get these nasty things! Ā ā™„

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ribbonrx August 7, 2018 - 10:53 am

Iā€™m so sorry to hear about these headaches, Caz! ???? I get migraines when there are significant weather changes, but even a slight change in weather will bring on a headache, My intractable migraines a few years ago were caused by my brain tumor, but I highly doubt you have to worry about such a thing!

Let me throw on my pharmacist white coat for a second. ???? Keep in mind that triptans shouldnā€™t be used more than 2-3 times a week. (Meaning, 2-3 separate episodes, since you can redose once after two hours during the same episode). Otherwise you can wind up with a medication-overuse headache. Also, be sure youā€™re taking your triptan at the first onset of a migraine, because if you wait until itā€™s in full swing, the medication is less likely to work. Iā€™m not sure what all triptans are available in the UK, but the general rule I learned in pharmacy school is if one doesnā€™t work, try another triptan or even a third. If those all donā€™t work, then the class as a whole wonā€™t work for you, which I believe happens in about a third of people. I for one found that rizatriptan works better for me than sumatriptan.

Before my brain tumor diagnosis when we didnā€™t know what was causing my intractable migraines, I saw a neurologist who put me on some ā€œnaturalā€ preventives: magnesium oxide 400 mg daily, vitamin B2 100 mg twice daily, and coenzyme Q10 400 mg daily. There is actually a lot of evidence out there for the effectiveness of this combination. Because of the source of my migraines, the preventives didnā€™t work, but I still take the magnesium daily to possibly help with other conditions.

Iā€™ve never had cluster headaches (they sound so terrible!) But I did see a blog post recently that seemed to provide some good anecdotes for helping with them.
http://theunchargeables.com/conquering-cluster-headaches/

I hope you can find some relief soon! Gentle hugs! ā¤ļø

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InvisiblyMe August 8, 2018 - 5:12 pm

That pharmacy coat suits you! I wasn’t sure what the ‘recommended’ use of Sumatriptan was, just that it shouldn’t be ‘overdone’. I’ve only used one per ‘attack’ but I’m using them more often the past 2 weeks because I literally can’t take this anymore, it’s awful. I’m just glad your tumour was (eventually) diagnosed; I had a brain MRI a couple of months ago because of the migraines and eye pain but apparently it was ‘fine’. So I’ve no idea. I was on magnesium OTC prior to the stoma so I’ll have to get back on that, see if I can cut the tablets as I struggle with tablet form since ileostomy. Thank you for sharing the article too, it was quite insightful! Thank you again for taking the time to comment, I really do appreciate it Ā ā™„ Caz xx

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Comedy Plus August 7, 2018 - 1:40 pm

I hope you can find a way to not suffer from these so much. Fifteen hours to kick in is a very long time.

Have a pain free day. ā™„

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InvisiblyMe August 8, 2018 - 5:07 pm

That made me chuckle, it’s actually 1.5 hours (an hour and a half) but with the font you can’t see the dot very clearly. Thank you for the lovely comment Ā ā™„

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The Britchy One August 7, 2018 - 1:53 pm

Youā€™re so lucky to have a GP thatā€™s evenheard if Clusters (CH)!
THat being said, sumatriptan tablets are worse than useless. Itā€™s available in injections and thatā€™s actually actually considered only method of sumatriptan suitable for CH because of the ridiculous time it takes to work. There are other triptans too which are better but my wonder drug of choice is High flow oxygen.. at 15-20 literss a minute through a non rebreather mask this stuff is a godsend!
Please contact OUCHUK for more help. Theyā€™re fabulous. (Organization for Understanding Cluster Headaches)
Please also ask for a referral to a headache specialist neurologist. Emphasize the HA specialist!! Neurology is a huge field and you need to be precise. If there isnā€™t a headache neurologist in your area you can have an out of area referral. In that case ask to be sent to the Institute of Neurology in Queens Square London .
If there someone anything else I can do to help please let me know!!

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InvisiblyMe August 8, 2018 - 5:06 pm

You’re right about the Sumatriptan taking ages to work. I read up on clusters and noticed oxygen being recommended as a treatment – don’t think my GP would be prescribing that but if they carry on for much longer I’ll have to mention it. Thank you for the recommendation for OUCHUK, will get on that now. Clusters are new to me so it’s all new territory; I’m just used to daily headaches and then migraines. I appreciate your comment, thank you so much! I’m just sorry you have to deal with these too… Take good care and have a good rest of the week xx

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Terri, Reclaiming HOPE August 7, 2018 - 6:36 pm

Iā€™m so sorry youā€™re dealing with the cluster headaches Caz. I know they must be miserable. Iā€™ve had both regular (pretty much daily) headaches and migraines my whole life. My doctors tried everything they could think of to treat them but the small amount of relief I got wasnā€™t worth the side effects. Now I just take over-the-counter meds and hibernate until Iā€™m functional….

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InvisiblyMe August 8, 2018 - 4:35 pm

I’m sorry you’ve dealt with such awful regular headaches & migraines too, that’s rough. The side-effects of migraine meds, which are often Triptans, can be awful; why aren’t there effective treatments with less nastiness attached yet? Thank you for sharing, Terri. I wish there were something I could do to help you, but I do empathise and can only hope that you don’t need to hibernate too much with headaches & migraines this week Ā ā™„
xx

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DeeDee August 7, 2018 - 6:58 pm

I am so sorry this is dragging on! I do so hope that you are back to feeling better soon????

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InvisiblyMe August 8, 2018 - 4:35 pm

Thank you very much, I appreciate it – I hope you have a good rest of the week šŸ™‚
xx

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Alyssa August 7, 2018 - 7:57 pm

Great post my dear! I am not sure if my votes went through because I tend to forget passwords. I guess I can chalk my memory issues up to the fun MS brain!! I get migraines, cluster headaches and the “normal” headaches daily! They are so frustrating and I think it is probably because I am always on a computer!!!

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InvisiblyMe August 8, 2018 - 4:37 pm

Aw well thank you for trying, I’m sure the vote probably went through. You’re not alone in forgetting passwords, among other things.. I swear I’m getting worse. Thankfully some genius invented sticky notes as I have them everywhere! I’m sorry you get the same with daily ‘normal’ headaches plus migraines and clusters. I get them with or without screen time so I’m not sure what’s behind them. Have you tried a tech-free day, see what happens? Thank you so much for sharing Alys, I hope you have a good week and manage not to over-do things at work(!) Ā ā™„
xx

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da-AL August 7, 2018 - 10:49 pm

the only good thing about migraines & headaches is when they’re gone — wishing you the best.

oh — & they shouldn’t be ignored if it’s unusual for someone to get them (tho am not one of those folks)

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InvisiblyMe August 8, 2018 - 4:38 pm

Hah, that’s very true – a day without them is blissfully amazing! You’re absolutely right on the second part; any unusual headaches or eye pain should be checked by a specialist. Thank you for the comment – have a good rest of the week šŸ™‚

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Wendy August 8, 2018 - 5:33 am

for some reason Wordpress would not let me post to your poll so I had to do it Anonymous, but I wanted you to know I took your poll and what I said….I have daily headaches, intractable migraine with aura, vestibular migraines (cause vertigo), and clusters)…regularly. I’m taking prescription meds, supplements, cannabis, soon I’ll get the gammaCore, try to avoid my triggers….
I hate you are getting clusters I wouldn’t wish that on my worst enemy….well maybe some politicians. šŸ™‚
I hope it doesn’t make you too grumpy. haha If it does, know that I’m still right there with you.
My surgery went well and I’m actually able to type so I’ll write a post soon, right now my hand is too swollen to type long.
xo Wen

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InvisiblyMe August 8, 2018 - 4:46 pm

Thank you so much for doing that Wendy, I’m sorry it was a bit glitchy; it was the first time doing a poll so I may try a different plugin next time. I’m so sorry you suffer so much with regular headaches, migraines & clusters. You’ve been through the mill with meds too, I just hope that something else, maybe the gammeCore (that’s nerve stimulation, right?) can be more effective. I thought migraines were bad enough, but mix them with clusters and there’s the definition of a clusterf*ck right there, absolutely awful. I’m so glad your surgery went well; rest up & give your hand time to heal – sending love, Wen, and thank you for getting in touch Ā ā™„

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Wendy August 12, 2018 - 5:40 am

Yes, the gammaCore is nerve stimulation, I look forward to trying it if they can ever get the paperwork right so I can get the dang thing! If I didn’t need it so much I’d tell them to stick it. It’s the doctor’s office, not the gammaCore people. This office has moved since I was there and my doctor is brand new, add those together and they really don’t have their shit together yet. Stuart is so used to calling my headache specialist in North Carolina and they all knew him everyone who answered the phone knew what each med does, and they knew my case. There was only one doctor there though, but she was a very busy doctor. So, he’s having a hard time calling an office where the staff don’t really understand what he’s talking about, they seem a bit confused there. After I get more established here with a PCP I will probably transfer my care to a different clinic. One that isn’t part of a huge system or a teaching hospital.
I agree with other’s O2 is really a life saver, if you can get it.
If there is anything I can to do, please ask. I’m very familiar with headaches.
(can you tell I’ve taken my medical cannabis? I’m rambling a bit. haha)
love to you Caz….
Oh, I also have DHE injections, they help clusters too. But it’s very hard for me to be still enough to get a shot when I’m in that much pain
xo wen

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Richa August 8, 2018 - 5:14 pm

Iā€™m so sorry to hear about these headaches, Caz! ????
Healing prayers!Iā€™m so sorry to hear about these headaches, Caz! ????

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Jo August 8, 2018 - 6:56 pm

Losing chunks in the day must be very frustrating! Sorry to hear that!

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Karen Horsley August 9, 2018 - 8:02 am

I feel your pain, even the occasional migraine is hell on earth. I hope they recede soon and if not maybe try the preventative meds.
I get fewer migraines since I stopped working in an office, whether it was the lights, the stress, or coincidence I’m not sure. I find being dehydrated can trigger migraines and also strong smells, like perfume – I can’t wear perfume because of it. When I get a migraine my sense of smell is heightened, in addition to light/noise sensitivity.
oh and I’m convinced orange juice is a trigger too!
Take care xx

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Eda August 10, 2018 - 2:52 am

I really feel for you. I used to suffer with chronic migraine – up to 3 per week at one stage. I had them regularly between the ages of 15 and 30. Often it would be tension headaches that turned into migraines. After I became pregnant they have drastically reduced. I hardly ever have them now which is so strange! Same thing happened to my mum although they restarted after she had the menopause so I’m not looking forward to that!

I’d definitely recommend pushing for a neurologist referral. I waited months for an appointment but when I got one I gained some valuable detailed information. I didn’t get on with preventative meds (I tried beta blockers and they made my arms feel numb all the time!) They can suggest alternatives though, and might invite you to clinical trials for new treatments. I know there is a new injection being tested that is specific to migraine.

Sorry for the long comment, it is something I feel strongly about and I truly sympathise with you and anyone else suffering from this horrid condition. Sumatriptan is great if you can put up with the thirst/tiredness side effects. Could you try the injected version if you find tablets take too long to work?

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Jeff August 11, 2018 - 5:59 am

Never had cluster headaches but have had migraines off and on for many years, along with regular headaches. As you know, migraines can be debilitating and most of the time a dark room and a quiet place is a necessity. Prescription meds can help sometimes but it’s scary to think about becoming dependent on them. The best solution so far has been to take an over the counter remedy like Excedrin Extra Strength Migraine and then take a cool shower and very vigorously scrub or massage the head, scalp, and back of the neck with a strong peppermint shampoo, scrub or peppermint oil and rinse with very cool to water – as cold as you can take. Then lay down in a dark, quiet place and try to sleep or meditate while focusing on slowly breathing to fully relax. After 30 minutes to an hour, the migraine tablets will begin to work and the migraine subsides. It doesn’t always go away until the next day but most of the pain dulls enough to function and sometimes stops almost completely. Try it and see if it helps you too.

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Coolncreative17 August 22, 2018 - 6:31 am

You totally stole my idea. THis was my suggestion. I have always wanted to do a poll but unfortunatley I don’t have a plan where I can install the Yop POll plug in. šŸ™

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InvisiblyMe August 25, 2018 - 4:17 pm

I had struggled with doing a poll in the past and removed it as the format messed up the WP theme. But this poll works a little better since changing my theme. I don’t mean to ‘steal’ any ideas. There should be other plug ins you can use to do your own, check out the plugins section on your Wordpress šŸ™‚

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