Discussion in 'General Symptoms' started by Sasha, May 20, 2014.
Hi Arise - I don't think it's hayfever - it doesn't seem to be seasonal.
I think it is part of the inflammation of ME, like how it is for those with gut sensitivities and the inflammation of the neural stuff like noise sensitivities etc. I think our sinuses are also sensitive to the ME fluctuations. My sinuses ache when I have overdone it. It's one of the first signs I get along with increased head inflammation. So it's not the normal sinusitis, it's sinusitis ME style.
Sinusitis is very common in ME. I guess it could be part of the general inflammation if there is any (my tests show normal) or a downstream effect from whatever's wrong with us all. In which case, trying to treat it directly might not be very effective...
It's probably worth getting anti allergy pillow and matress covers, it's a pain of course because it adds to the laundry but they are effective at reducing symptoms for many allergy sufferers - dust mites being a major problem in most homes.
Mould spores are all around us, though of course there's a difference between normal breathing indoors and sticking one's head in a compost bin. Mould's are undoubtedly a source of allergic response but one needs to be pragmatic about how one deals with something that is with us all of the time. There can be some seasonality to mould concentration in the air - warm wet weather increases it but unlike pollen concentrations our homes will have moulds present in some degree most of the year round. There's little to be done about reducing this in a reasonably well maintained home, though house plants, or more precisely the soil (were talking more than just a single African Violet pot) can be an issue.
GPs will often only refer to Allergy Clinics where there's a reasonable chance that treatment will work - that means where there's a clear cause and the patient can commit to up to 6 months of daily attendance at the clinic for resistance injections. The role of allergy in ME has been talked about a lot, I'm not sure if there's any solid research but allergy is probably part of the symptomology and not easily amenable to 'cure'.
Long term headache should be taken seriously by a GP, it may be worth keeping a headache diary over a couple of months, listing onset and relief times, precise location of pain and interventions used. For your own use, if you are lucky enough to have a varied diet you also might to want log foods that might be problematic in case there is a migraine like element - not all migraines involve aura. Anyway once you have a diary, go back to GP and see what she/he makes of it.
I get myofascial constrictions in my piroformus (sp?) muscles across my butt. When I release them, my sinuses open up.
one more thing to consider would be non-allergic rhinitis
Thanks - it's worth a go.
Interesting. I've got no house plants, though, and my headaches aren't seasonal.
I'm largely housebound and daily attendance at a clinic would pretty much kill me. Also, it's not obvious that there's an allergic cause so maybe that one's out.
I've kept a daily symptom diary for years, including when I get headaches, so I've got that information already. Onset and relief times are pretty constant - if I'm going to have a headache it turns up late morning, builds, and is sometimes better by evening and if not, is resolved by my overnight sleep. Pain location is always the same and all interventions have had no effect. I kept a food log for about three weeks when I was trying to determine which foods were causing my hand eczema (several, as it turned out). I'll check it and start it up again.
Thanks, N.A. - some interesting ideas there. I think it's time I went back to my GP - I'd been assuming we were at the end of the road with it when the steroids failed but maybe that's my fault for not pursuing it. I've also been a bit reluctant to go back because I don't want to take stuff that will make my ME worse and once I'm referred to a consultant it's a lottery as to whether I'll get someone who will take that into account or is up to date on the microbiome and all the other things that are emerging as possibly important.
Interesting. I'm not around any of those triggers, though. Argh!
Still, something to bring up with my GP.
@Sasha I just noticed your headaches are resolved by overnight sleep - same with me.
Do you notice a lot of heat in your head with your headaches ? I find by afternoon I have to lie down with cold face cloth on my forehead for a good 4 hours, it's amazing the amount of heat that comes out onto the face cloth. After about 4 hours my headache has eased and overnight sleep fixes the rest of the headache. I can't take painkillers as it gives me a worse rebound headache the next day.
Hi Rosie - wow, that's really something, if your head can heat a facecloth! I've only tried a cool facecloth briefly because... come to think of it... it heats up too fast to be worth it.
I'm sorry you don't have much luck with painkillers. I use them but stop them before the evening, even if I've still got the headache, because I know that sleep will resolve it. That might be helping avoid rebound headaches - also, I tend not to get them one day after another, so I'm not on painkillers for days at a stretch.
Does drinking coffee give you any temporary respite?
I don't drink coffee - I'm on a restricted (Paleo) diet. But when I'm getting a sinus headache I take paracetomol (plus an NSAID) and paracetomol contains caffeine. It's not very effective but maybe better than nothing.
I find that caffeine temporarily takes off the edge and works pretty quickly. When I have one of these excrutiating hedaches (which happens pretty often), I can't even put my thoughts together to speak. A pin falling, would sound like a bomb going off near my ear. If I take a few sips of coffee, it minimizes this pain but, it only lasts for a short time. NSAID also takes off a small edge temporarily.
I am different than you though in that many times I wake up with it.
Like @rosie26, a cold towel on my forehead, somewhat relieves it but soon enough the towel is very hot.
@Sasha, i have similar problem, cept pain is always present, just made worse by things like food and MCS, etc. Been to many docs, no one has a clue. still after all these years not sure if there is problem in sinus, or gut, or brain, or immune system (though likely outside of sinus if food is issue). i requested cutlure of sinus once, but ent refused - saying there was nothing there (that he could see, macroscopically; however, i gotta believe there are microbes in there (or lack of the good kind) wether you can see em with the naked eye or not).
Though there are many ideas to be considered, one thought that comes to mind is kinda a positive feedback loop, in that the sinus/olfactory sense is all hyped up, causing the brian issues, causing lack of control of the immune sytem, which in turn keeps the sinus inflamed...
anyhow, if you ever find some answers/relief, please let me know.
do you have pets? or possibly a medication your on is causing this? normally for me only dairy including eggs causes this. that being said i had a low grade infection in my sinuses for years and 3 days of 500 mg of glutathione reduced took care of it, I could actually hear the fizzing as the infection was dying. good luck hope it goes away entirely!
I've had headaches, mainly migraines, for years. Unlike most of you, mine are made worse by cold. I need heat. Using a cloth gives me the same problem though; it cools down too quickly just as yours heats up fast.
I have been using those reusable hot/cold packs. They have gel that stays flexible. You either heat them by boiling water, remove water from heat, then put the pack in for 7-10min OR you put it in the freezer until it's cold enough.
They keep the desired temperature much longer. Stay flexible hot or cold. Just wrap it in a cloth to protect your skin. I use a tea towel. Not very expensive and they last quite a long time. I have a couple on the go and always have a spare on hand in case one springs a leak.
Hi - no, I have no pets and I'm only on one long-term medication (Pregabalin) for insomnia, which I take every night.
That must have been exciting when your infection was dying! Fancy being able to actually hear it going on.
That's a good idea - I had one of those and gave it away to a guest with backache for her long drive home. Must get another one.
Update! I've tried a couple of things recently that have given me very considerable relief.
One has been to use the Neilmed nasal irrigator (the squeezy-bottle one) not every day but two days on, two days off. A doctor suggested that to me and I almost didn't bother trying it but when I did, I went for three or four weeks without a sinus headache, which was pretty amazing - normally I get a couple of headaches a week and the longest stretch I'd been without one previously was nine days (a record!).
I've had a few headaches since that good stretch although they seem to be fewer. Luckily, I accidentally hit on another thing that helped.
My sinus headaches start in the late morning and build until they're really painful by mid-afternoon and they normally put me in bed. If I'm lucky, they mostly clear by late evening (and if they don't, resolve after a night's sleep).
One day, I had a headache well underway but forced myself to go out and meet a friend as arranged in a cafe. I ordered a weird tea made of osmanthus, jasmine and green tea (this stuff) and by the end of an hour, my headache had gone. That never happens, no matter what painkillers I take!
I wasn't sure whether it was me going out (when I normally go to bed) or drinking the tea that did it, but the next time a headache started, I went to the same cafe, drank the same tea, and the headache went away.
I bought some of the tea from the cafe to have at home and I'm not sure it's effective on its own (that is, perhaps it's me leaving my flat for a while that helps, or a combination of the two things).
Having googled, if it's the tea, the most likely helpful ingredient is probably the green tea. There's a guy on the net who recommends chewing the green tea straight from the packet and says that your headache will be gone in two minutes (I tried that and it didn't work for me).
So, for the last six weeks or so I haven't been so totally at the mercy of my sinuses. I still don't know what's causing the problem - I'm trying to get my GP to refer me to an ENT.
Steam from tea as well and warm water through the roof of the mouth into the sinus area?
You can also try a Google Site Search
Separate names with a comma.