Suggestions welcome 🙏

[Tiggywoos]

Hi everyone

Sorry to sound like cracked record but as the “ waking” headache enters its 6th year I’ve noticed a change .

The headache is still very intense around temples every morning when I wake but also strong pain behind bridge of nose like someone screwing from one side to the other .

No other sinus symptoms , no running nose, no mucus . Mouth is incredibly dry and use 2 zylimelts every night . Pretty sure I’m mouth breathing despite best intentions not to. Had a steroid nasal spray last year but made pain worse . Also used sterimar . tried many medications . Only thing that helped was 10mg of pred but that was for something else not head. Currently take hydroxy and 2.5mg pred .

Has anyone had any success with nasal strips or nose ring ?

I’ve been waiting 2 months for results of sleep apnea tests but I’m guessing they were ok . Due to have tele call with headache nurse maybe end of year .

Open to ANY suggestions of what I could try ?

Also forgot to say if I get up say at 3am and walk around the pain goes . If I then go back to bed the pain returns when I wake again so it’s like round 2 🤦‍♀️.

Thank you so much for reading appreciate this forum and all of you so much 🙏 xxx

ps. Checked humidity in room was normal

[Carcrashgal]

I'm so sorry to hear this; it's been a tough ride so far, hasn't it. I can't remember if I have suggested this before (and if I have, apologies for repeating myself) but can I suggest you explore Botox injections in the head (not the face, although I'd probably have accepted that too!). It's not a permanent fix, but for me at least, each course gives me about six months pain-free.You may have to hunt around to find a consultant who does this - the NHS is very specific about who can use the toxin for what. I know this because my pain consultant tried this to relieve the pain in my (broken) neck - it did nothing for the neck, but it *really* helped the permanent screaming headache. She agreed to do it again, but said it had to be to relieve the neck pain as she wasn't allowed to use it for heads. (No, makes no sense to me either!) It's not fun - a lot of needles jabbed sharply into the head, one after the other, but it's done quickly, and though each one is uniquely painful - it's only for a moment, and once it's done, that's it. For me, it usually takes a day to kick in . . . Hige good luck with finally finding something that works for you.

[Tiggywoos in reply to Carcrashgal]

Hey chick thank you so much for reply . I didn’t realise but it is national migraine week and on the local news a lady was at a clinic in Totnes I think having Botox injections in head . It was NHS . It’s definitely worth a discussion with the headache nurse if she rings me at the end of this year .

Really appreciate your kindness 🙏😘

[Carcrashgal in reply to Tiggywoos]

I'd phone her now and not wait for her to remember you! Good luck!

[Tiggywoos in reply to Carcrashgal]

It’s on list to chase the snore report tomorrow as nurse wouldn’t speak to me until I’d had negative snore 😴 report . Honestly sometimes I do wonder 🤷‍♀️ if it’s to fob you off for a couple more week !!!

[Carcrashgal in reply to Tiggywoos]

Don't you wish to heavens they'd all just *talk* to each other?! Keeping thumbs held and digits crossed for you!

[Tiggywoos in reply to Carcrashgal]

They are even on the same floor in same building 🤦‍♀️. Thank you so much and I’ll defo post if I get anywhere !

[Carcrashgal in reply to Tiggywoos]

👍

[OldTed60]

Dear Tiggywoos, I’m replying mostly in sympathy but also because I relate somewhat - not so much to the location you describe - but to the feeling of screw tightening - in my case in my top front teeth just under my nose.

Also, as it gets colder, I get neuralgia pain around my weakest teeth - the ones that now need crowns once Rituximab has worn off enough. I was finally diagnosed with late onset migraine by my neurologist - who previously told me that no history of migraine when young meant I wouldn’t have these. Also cervicogenic headaches when I’ve exacerbated my neck arthritis by poor position, stooping or long journeys or infusions with no neck support. But hey my mouth and throat are also very dry these days so I’m used to blaming Sjogren’s, using heated eye mask, neck support in car or reclining and taking 5mg diazepam when it kicks off badly, sometimes 30mg codeine if it’s persistent. None of this helps you and for this I’m so sorry but my main suggestion is Sjogren’s neuropathy, Raynauds, neck arthritis and for treatment - a heated face mask which can cover your nose and mouth? X

[Tiggywoos in reply to OldTed60]

oldTed I always love your posts and thank you for replying . I love the heated eye mask and often use it and I am beginning to feel i am more “sjogrens ish “ than I was before . Thanks to you I realise how impacting it can be and not to poo poo it as just dry eyes etc like I think a lot of people do . The dry mouth is terrible isn’t it as food tastes of cardboard and it’s hard to breathe at night .

I love the idea of a neck support and I could try that in bed . Car journeys are often short as they make me feel so rough but neck support could be good for me watching tv before bed .

How are you doing at the moment after Covid ? Big hug and thanks for all your posts . Knowledge is defo power ! xxx

[OldTed60 in reply to Tiggywoos]

I’m fine thanks. Rather anxious about second Rituximab on Wednesday as have to stay over this time after having had a delayed mild allergic reaction last time. Hate staying over as mixed ward and shared toilets - more dread worthy now with stoma! Xx

[Tiggywoos in reply to OldTed60]

God mixed ward you’d like to think they could find a little room for you given the complexities but I guess on ward they’ll be more nurses to keep eye on you . Do they give you some form of antihistamine in case of reaction ?

Marshmallows at ready 😌xx

[OldTed60 in reply to Tiggywoos]

Yes they give me (and I also take daily) lots of antihistamine. Plus they infuse steroids as a pre-med. This really worried the GP pharmacist when we spoke last week about my possibly changing from liquid Piriton to Cetirizine as my rheumy suggested. She reminded me that once we have a delayed allergic reaction to a drug or other then more likely to have a severe reaction next time. Yikes! My husband was listening and almost yelled at me to email my rheumy back and suggest, as pharmacist had, that I stay over. He’s had bad dreams nightly since that I die of anaphylaxis when he can’t get me help in time. I think he’s feeling guilty at making me spend 24 hours in that place but my rheumy organised this immediately once I suggested it. I’ve only ever had slow onset anaphylaxis 3 times. Once to a feral kitten many years ago, once to Sulfasalazine and also to Hydroxichloraquine. Nothing immediate, just a slow but steady swelling of face with hives, then lips and finally tongue. The kitten was the most dramatic time - finally walked in to GP’s office and she leapt across her desk at me and stabbed me with an Adrenalin shot - nearly gave me a heart attack with fright! When I told her this she said that I was the one who nearly gave her a heart attack walking in casually complaining that my swollen eyes were closing up and I felt “a bit off!” 😂xx

Ps also acute pancreatitis with Azathioprine and Steven’s Johnson with IVIG two years ago this month - both delayed reactions too! 😬🤦🏼‍♀️

[Tiggywoos in reply to OldTed60]

blimey OT ! No wonder the husband has nightmares bless him … I’m the same with oromorph .. had a knee op and they gave me child’s dose . They thought I was having heart attack and did 10 ecgs ! I explained it always happens with opioids .. I said just switch tele on and leave me to rock on all 4’s and it will subside 🤦‍♀️. What are we like !!!! I also get the closing over eyes and gp looks horrified . You defo sound super sensitive on the drugs front xx

[OldTed60 in reply to Tiggywoos]

Aye we are both quite touchy it seenms! Dr E Price once told me she thinks allergies are more common in Sjogren’s people than in other autoimmune diseases. But for me I think it’s the HSD/ EDS thing - which Prof Denton sort of implied was also a precursor to my scleroderma antibody regarding associated environmental triggers. I have to be very cautious in my occasional use of codeine and even more occasional dismorphine - but this has always been a problem re dysmotility issues since I was a wee lass. And I have similar reaction to yours with Tramadol causing a stroke-like effect on my left side. What a pair we are!! Xx

[Tiggywoos in reply to OldTed60]

Never knew Sjogrens could affect liver . I’ve been diagnosed and undiagnosed with autoimmune hepatitis in past and still have deranged LFTs . From memory you’re the same …

[OldTed60 in reply to Tiggywoos]

Oh yes the liver is notoriously affected in Sjogren’s. I don’t have any issues now with mine but did have non alcoholic fatty liver prior to my dramatic scleroderma related weightloss in 2019. Also my liver reacted badly to methotrexate over my two year spell on it. But never considered that I had autoimmune hepatitis or common Sjogren’s related PBC (primary biliary sclerosis - the most common form of gastro involvement in Sjogren’s I was told)? I often think Lupus/ Sjogren’s/ Scleroderma friends such as yourself have worse Sjogren’s than they realise - especially those who carry the anti Ro antibody X

[Tiggywoos in reply to OldTed60]

Eeekkk … I was prescribed methotrexate by private rheummy but GP said no as needed shared care plan with local hospital . I always had little doubt in my mind that my liver might not cope well so maybe it was for the best . Jeepers OT you’ve been through it x

[OldTed60 in reply to Tiggywoos]

Thanks - yes I have but always feel like a self harming masochist when my body rejects another treatment. I mean it’s not as if the consultants don’t know I’m highly allergic to lots of things and they are the ones prescribing of course. But still I always feel I’ve asked for it somehow and Wednesday will be no exception if anything untoward occurs. I’ll be glad when I’m on the other side of this and have lived to tell the tale - hopefully entirely unscathed! X

[Tiggywoos in reply to OldTed60]

Make sure you keep us posted and you’ve got a fan club I’m sure x

[OldTed60 in reply to Tiggywoos]

Aww will do - shucks and thanks ☺️😊😚

[Brychni]

Hi T, I've been getting migraine most of my adult life and the pain and pattern sounds similar to yours. I have been on monthly Ajovy injections for 2.5 years now and they have changed my life. (Everything else going wrong, but head a lot better?)I toyed with the offer of botox too, because of the location of the pain, but in reality I was getting more and more in the back of my neck in recent years.

Will never know the underlying cause. Could be my antiphospholipid antibodies or other issues. However most up to date research shows it comes from excitable trigeminal nerve. No one knows why people have this but triggers are things like lack of sleep, alcohol and strong light but different for everyone.

Sumatriptan tablets or Zomig nasal spray are really good for when you have an attack. Good luck.

[Tiggywoos]

thank you so much for reply . So sorry you suffer too 😟. The zomig spray made the headaches worse but I generally respond badly to medication (even allergic to paracetamol ) . I’ve never heard of excitable trig nerve I’ll look at that so interesting . I’ll defo keep you posted if anything becomes clearer or helps . So glad injections helping you . xxx

[Buttsy]

Hi good morning,

Do you bring your teeth ? Could you have TMJ in jaw causing pain?

[Tiggywoos in reply to Buttsy]

Good question but according to dentist no I don’t x

[MissusTee]

I get nocturnal headaches (hypnic), with severe night and day sweats, and we’re thinking that it is my Sjögren’s syndrome (overlap with scleroderma and PBC) that is causing the problems due to neuralgia.

[Buttsy]

sorry ,grind that should say.

I have it and I get headache , face pain ect, had the Sleep apnea test too that came back okay. I am now under Dental hospital and they made me a hard mouth guard that helps with the pain s it decreases grinding and help to align the jaw.

[Tiggywoos in reply to Buttsy]

Thank you yes I thought you meant grind . How did they know you were grinding your teeth were they worn down ?

[Buttsy in reply to Tiggywoos]

Hi, no , but the pain I was experiencing was awful, and was worse in the morning,even had face ache ,headache, neck ache,temple pain and sometimes pain or discomfort on eating.so spoke to Dentist and who said it could be coming from the Jaw and she referred to hospital , mandible and jaw department I think, they assessed where pain was and said muscle around jaw were tight ect, probably due to clenching or grinding and my jaw is out of line slightly and clicks when I open it wide and if I look in mirror ,whilst doing it , it moves more to one side.

They diagnosed TMJ dysfunction and referred me to the dental hospital, it was the dentist who referred me to sleep clinic , they wanted that checked out first as I don’t sleep well either.

Then after assessment ,as I said, they made me a hard mouth guard, which has helped a lot.

I am supposed to ween of it, but it helps so much I would rather keep using it.

Good luck x

[Tiggywoos in reply to Buttsy]

That’s so helpful thank you . When sleep study comes back Im going to talk to dentist again (he’s been stressed last few visits ) don’t ask lol ! Really appreciate you replying and glad it helped xx

[Buttsy]

again sorry ,Dentist at hospital who referred to sleep clinic. Not with it this morning.

[Tiggywoos in reply to Buttsy]

I can add this to question I can ask headache nurse when I hopefully speak to her x

[Otto11]

Hi I was referred to a headache nurse by my Epilepsy nurse as I was waking up with a headache most days & still am. She suggested rebound headaches from Paracetamol which I took before bed. I was told to reduce Paracetamol to one or 2 days a week only. It helped a bit but not much as I still wake up with a headache which usually goes by lunchtime. It’s mostly at the left side often round my eye. I spoke with the headache nurse again but was just given the general advice of drink more fluids etc to prevent dehydration. I do have arthritis in my neck though so can only think it’s coming from there. I’ve tried different pillows as I’m sure you have. Hope your nurse has some better suggestions.