Headaches as well as fibro: Hi everyone... - Fibromyalgia Acti...

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Headaches as well as fibro

Mac333 profile image
36 Replies

Hi everyone,

I keep up to date on this forum and I find it very helpful. I would like to ask if anyone else suffers from chronic headache, or migraine. I'm really suffering at the moment, I have had my eyes tested and can rule out that as a problem. I'm desperate to know if anyone else gets headaches as well as the usual fibromyalgia pains.

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Mac333 profile image
Mac333
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36 Replies

Hi

It's funny you should say that, I've had a banging head tonight, don't normally suffer with them, I hope it's not a sign of things to come. Hope you feel better soon Lynne

CheetieCat profile image
CheetieCat

Hi Mac333

Yes I do! Took a while to find medication that helped as I was constantly sick with them, tried the ones you put between your gum & lip but no use, anti sick no good either as couldn't keep it down, so ended up on a beta blocker which did help some but now on Topirimate daily and have Almatriptan which so far has been working well 🤞

Migraines are horrible aren't they, hope this helps & you get some relief soon.

CC

Entela15 profile image
Entela15

I do. As well as facial pain. Stabbing throbbing headache , sore scalp and occasionally migraine. Saw a neurologist last September who suggested I take Indomethacin. Didn't do anything . I tried a muscle relaxant for my stiffness and that worked for my headaches. They not as bad as they used to be. I take 6 mg in the morning.

VintageMustard profile image
VintageMustard in reply to Entela15

Which muscle relaxant please?

Entela15 profile image
Entela15 in reply to VintageMustard

It's called Tizanidine. It comes in 2 mg tablets. I take 3 a day. It really works for me. Give it a try. I've read it's used for chronic headaches. If you Google chronic headaches it'll come up as a treatment. Hope it works for you. 😊

Emk68 profile image
Emk68

Hi I have at least one headache a day I also have migraines touch wood not had one for a month or so and I have also started with sinus problems too along with neuralgia I never had sinus problems before fibromyalgia began affecting my everyday life hope you find some relief x

Topcat64 profile image
Topcat64

Hi

Yes I've had migraines for years, I also get agonising jaw pain which effects my left side of my jaw,

All to do with Fibromyalgia.

Shazzzy profile image
Shazzzy in reply to Topcat64

Same jaw pain but on right side. Christmas horrendous as so painful to eat and can barely open mouth. Have you found any relief ?

Suehad profile image
Suehad

Hi, I know exactly what you are talking about. My headaches were waking me up during the night. My neurologist sent me for a lumber puncture looking for the pressure in my brain. Very painful procedure, first time after 1.25 hours of trying to get the needle in I had to return a few days later & Have the procedure repeated using an x-ray machine. Came back with a pressure of 23.5 so they said it was migrains. I was refered back to my gp has I have an high intolarance to medication & was prescribed gabapentin. The night time attacks are less frequant now but the headaches happen during the day now. Bright lights, noise,stress & windy conditions seem to be triggers that I have noticed. Hope this helps😌

Shazzzy profile image
Shazzzy in reply to Suehad

Same triggers

Yes, always had migraines and general headaches. I remember my mother complaining of them too and my daughter gets them even more frequently than I do.

I found mine were hormone related. And also food related. I cannot drink or eat the tiniest amounts of coffee, chocolate, alcohol, pineapple, grapefruit. Ginger and spices are also suspect.

New GP checked thoroughly and prescribed sumatriptan, take one if headache really kicks in. Working well so far and far less headaches.

My daughter has been diagnosed as a night time teeth clencher. This is causing headaches, it’s related to TMJ ( I think it’s called, joint in jaw)

I react badly to light, wear sunglasses most of the year outdoors, have subdued lighting indoors.

Sandra600 profile image
Sandra600

Yes I have chronic headaches and migraines. I’ve got a migraine right now and I’ve got a hospital appointment in an hour followed by a dentist appointment and all I feel like doing is crawling back into bed.

lolacat profile image
lolacat

Hi - I have had daily headaches (on waking) for the last 15 months. They are not the most severe headache in the world, but feel rather as if I am waking with a moderate hangover every day. I developed dizziness and balance issues at the same time. Have been seen by ENT consultants, neurologists and now, privately, a Professor of general medicine, in an attempt to get to the bottom of it. And been variously diagnosed as opiate related (came off them and it wasn’t), inner ear related (balance tests suggested that but treatment didn’t work), and polypharmacy (down to the wider cocktail of medication).

But also suggested to me in a chance conversation with an orthodontist that it might be because of grinding my teeth at night. I’m going to explore that, as well as going through a process of systematically eliminating/reintroducing/changingmedications. Although my own instincts are that it is a inner ear issue.

But worth saying at no point has anyone suggested it might be fibro related, so I wouldn’t just put your headaches down to that without further exploration.

Patdoyle profile image
Patdoyle in reply to lolacat

Yes I too have mild headache every day like a band around my head and I squint in the light. I have balance issues and was told that was the cause of the headaches. They said I am concentrating on staying balanced so my eyes are working hard and the brain too.

Mac333 profile image
Mac333

Hi,

Thank you all for the very helpful replies. It's so good to know we do not suffer alone. I have taken a few of your tips on board for when I see my doctor next. Also I am going to make an appointment with dentist to see what they can input. As with all of you I would love to get to the bottom of this. I'm so tired of the constant pain, and the constant explanations I have to give to people. Once again thank you for your support

Psulli profile image
Psulli

Hi Mac333. Yep I get awful headaches. I often wake up at night with a terrible headache, if I even turnover in bed it causes my head to feel like it’s actually splitting in two. I always have pain relief on my bedside table as I cant bear to get up and get them from the kitchen. You have my absolute sympathy , I think it’s just another thing we have to endure...best wishes.

Mac333 profile image
Mac333 in reply to Psulli

Thank you Psulli, I too keep my pain relief pills by bedside for the exact same reason. I also keep a small torch because I can't bear the light. I have tried everything for my headaches topiramate works most of the time but I need to top up with other forms of painkillers.

Psulli profile image
Psulli in reply to Mac333

I find the only pain relief that may work for my headaches is headex extra...if I take ordinary paracetamol they don’t work. I’m not sure if it’s psychological (lol) but it works for me so hey ho. I have sumatriptan nasal spray if it’s a migraine and that works well but does make my heart pound a bit.

Mac333 profile image
Mac333 in reply to Psulli

Thanks I will mention it to my doctor. Keep well

Shazzzy profile image
Shazzzy in reply to Psulli

I use same nasal spray, do u have dry mouth and nose because of this ?

Psulli profile image
Psulli in reply to Shazzzy

Hi shazzy yes and my nose can get really sore inside too. The other thing is a really bitter taste in my mouth. Having said that tho anything is better than a migraine........take care

Shazzzy profile image
Shazzzy in reply to Psulli

I wonder if the dry nose and mouth causes even more migraines like dehydration ?

Psulli profile image
Psulli in reply to Shazzzy

Hi shazzy I think there is a link to dehydration causing migraines. I always have a dry mouth anyway because of the amitriptyline I take, it also makes my eyes dry too.....what a nightmare!!!!!

Awful profile image
Awful

Oh yes they are a permanent thing,also migraines which l have had this week from Sunday and today a little easier, l am having permanent noises in my ears a doctor said Tinnitus so annoying, but apart from the top half the bottom half is awful with permanent Diahorrea under the hospital for this apparently diverticulitis which l have had for years but never as bad as this before, Every appointment make has to be cancelled due to this problem. I hope you get some help with your headaches l feel for you.

Bradyblue profile image
Bradyblue

Hi Mac

I have headache and nausea every day I find lights and smells make it worse also I find that when im walking outside (when I can) it feels like im walking on cotton wall most of the time. I have noticed that I'm always grinding my teeth or sucking my lips but I thought it was a side effect of taking gabapentin.

You might like to try a traditional Korean buckwheat pillow you may be very surprised at the relief. There are also facial exercises of clenching certain parts of your face and raising your eyebrows and holding your breath in your cheeks. Great to do in the shower. YouTube them. Meds don’t do everything you need other things to go with

Shazzzy profile image
Shazzzy

Hi Mac, I have had chronic migraines for years alongside the fibro. Usually about half of each month is taken up with them. January has been awful though with only 5 days migraine free. Still trying f to figure out why. Neurologist has abandoned me saying nothing more can be done as tried ALL meds available and botox injections to no avail. Have just booked appointment with hypnotherapist who thinks she can help.

Mac333 profile image
Mac333 in reply to Shazzzy

Hi Sazzzy. I also tried Botox my God that made things worse I was lucky I had someone with me when I had it do because I had such a bad reaction. I am a trained hypnotherapist and trust me I can't make the pain go away if I could I would. Like many others on here the pain at this time of the year seems to worsen, my headaches this month have been so bad I honestly have even contemplated another overdose. My grandchildren keep me going.

Shazzzy profile image
Shazzzy in reply to Mac333

Hi Mac, understand completely how you feel, I don't ever remember having it as bad as last month. Thankfully the seem to be wearing off now. Have been using the cbd vape for last fortnight so does seem to be a result, not consistent but definitely an improvement but of course could be coincidental. I only left the house twice in January and hardly spoke to anyone other than my daughter who has been amazing through this time.The botox was nightmare too, made it much worse . It is very hard at times not to give up, I am so glad you have grandchildren, their love is wonderful isn't it . Cant believe you were hypnotherapist, only just thought of it this week and have appointment for next week. Have you tried being treated by someone else ? Just a thought. So sorry you have to live with this too, but it is good to hear from someone in similar situation. Feel free to pm me if you want.

Psulli profile image
Psulli in reply to Shazzzy

Hi shazzy. I have always thought my migraines were hormonal as when I had a total hysterectomy and both ovaries removed they diminished drastically. I had to deal with the dreaded menopause instead though...you just can’t win sometimes (lol)

Mac333 profile image
Mac333 in reply to Psulli

Very true it's hard being a woman with fibromyalgia. Lol take care everyone out there. X

Shazzzy profile image
Shazzzy in reply to Psulli

I was told trigger is hormones too. Not affected by food etc. But they are so frequent that I am permanently sensitive to light, noise, smell etc. But ihave gone through menopause and still they keep b÷÷×÷y coming !

Mac333 profile image
Mac333 in reply to Shazzzy

I am exactly the same . Noises smells light all effect me and not slight but badly. It's so good to know other people feel the same.

Mac333 profile image
Mac333

And to make matters worse I have a face to face assessment on Monday. So not looking forward to that, having to explain to yet another person what my symptoms are, knowing full well they have no clue and moreover don't care

Shazzzy profile image
Shazzzy

Don't give up on assessment yet, I have been through quite a few and tribunals as well but my last assessor did listen AND understand and I was awarded 10 year light assessment. The relief is wonderful. We all know the stress of the assessment makes things so much worse. All the best, wishing you well for Monday

Mac333 profile image
Mac333

Thank you

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