Headaches and dry nose: I have lots of... - Ehlers-Danlos Sup...

Ehlers-Danlos Support UK
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Headaches and dry nose


I have lots of debilitating symptoms but there is something really troubling me I would like to get help with. I wake every morning with severe headache. As a consequence I am afraid of sleep now. I have a lot of allergies. I am allergic to many things including cats, dogs, pollens, grasses etc. I also have cold air urticaria. ‎

I have a very dry nose and post nasal drip. I have been given various steroid nasal sprays over years which don't work as my nose is very dry and they don't help with this. I have been abused for years by people making fun of me for sounding like I have a heavy cold. It's prevented me getting many jobs, making friends etc and I am always made fun of.

It's been a nightmare going anywhere wehre they put radiators on as I struggle to breathe and communicate with people and headache intesifies.

I have seen ENT many times over years. Once I had my adenoids removed as a kid then told they had grown back! I had a septoplasty operation which was a nightmare. Since then I have keep getting discharged. One dotor at ENT ended up punching the back of my throat without warning which made me wretch. I don't know what that had to do with my nose. They said I had something on my tonsils.

I am desperate for soe relief from my dry nose, post nasal drip and waking with headaches along with a dry mouth often with blood in it. I would be extremely grateful for any input as to what I can do

Thank you. I'm off to find some migraleve..

11 Replies

Have you ever had a sleep study done??? People will EDS are more likely to have sleep apnea, the headaches and dry mouth could be symptoms.

I have EDS too and have been diagnosed with sleep apnea, since I started treatment the headaches have disappeared.

Please ask your Gp to be referred to a sleep clinic. All the sleep tests I have done were from the comfort of my own bed at home (first one was just a wrist strap that measured oxygen levels)

Hope you get answers soon 😴😊

Thanks. I have just asked my GP to refer me for a sleep study. I don't know if I snore but it's getting much worse.

You don’t have to snore to have sleep apnea. I personally don’t snore at all as my sleep apnea is more central apnea than obstructive.

Well done for getting referred. I hope you get answers soon

I have Ehler's, with migraines caused by moderate cranial instability. But, I also have Sjogrens. Personally, I've found that taking extra Natural Vitamin E (800 mg daily) and Omega 3's (fish or flax) along with using saline mist nasal spray helps more than anything. You may also want to try Quercetin w/ Bromelain to see if it helps with your allergies.

As for my migraines, I personally have to use a traction unit and cervical collar for short periods of time almost daily. The decompression has a natural sedative effect on me that helps with sleep. I also take extra Vitamin B2 (though, for me, I don't think it makes much difference.) But, I still have to use a muscle relaxant often and ibuprofen or headache powders (aspirin/caffeine).

Some people do well with herbal headache blends (skullcap, valerian, etc.)

I use Milk Thistle (1000-2000 mg daily) which also helps the dryness. It helps the liver. A congested liver can cause allergies/itchiness/dryness. Candida overgrowth can cause these symptoms, as well.

On a parting note, wheat gluten can be extremely drying to the system if you have a sensitivity. Changes in diet can help improve symptoms in many cases.

I hope you can find relief soon.

Best wishes.😊

Details in reply to Ell17

Thanks for those tips. I will give them a try.


Just a small point which you may already do however I always have to have the window open through the night - summer or winter.

If I don’t then My sinuses are so blocked in the morning that I can’t breathe, and always have a headache.

Never have heating on it the bedroom either.

One thing associated with post nasal drip is LPR ( silent reflux) which I have. Despite high dose PPI apparently it’s the pepsin that reflexes ( obviously nit the acid due to PPI))

Apparently it increases mucus and caused post nasal drip and even ear problems.

I have chronic throat clearing which I always thought was post nasal drip but I know realise is due to LPR

It has damaged my vocal cords too , confirmed my an ENT scope

Details in reply to Hidden

Oh yes I am the same. I always have window open in bedroom all year round. Always have done. I can't breathe if I am in a car such as taxis and it's warm or at hospital as they have heating full balst. Wherever I have to go somewhere and there is a group of people there is Always someone complaining they are cold and having heating turned up. My head feels like it will explode with pain and dry nose. Thanks for this. I think I must have done my throat some damage from all the throat clearing.

I have none of your allergies but do suffer from hives with medication, quite sensitive to creams and lotions too. The nasal drip I can relate to but I have yet to be given and answer to this and recent CT scan of my sinus has not shown anything up to try and provide reasons for this happening, I get bouts of sneezing which can come on even during the night or anytime then last an hour or a few hours then suddenly stop along with all the mucus this produces. The nasal drip is relentless at times and just very irritating and most people blame allergies but this has never been proven out.

Recently this last week I have been reading about the eyes and the tear ducts and thought you might be interested:

Tears drain into the puncta, located in the inside corners of your upper and lower eyelids. Your eyelids have small canals (canaliculi) that move tears to a sac where the lids are attached to the side of the nose (lacrimal sac).

From there tears travel down a duct (thenasolacrimal duct) draining into your nose.

Now when I had the camera into my sinus the ENT consultant was amazed I had a lot of mucus at the time in my right sinus, this is always my worst side, but thinking now it is my worst side for when my eyes water when in light breeze and now I am wondering could my tear duct be the issue and not the sinus... certainly worth me doing more research.

My waking up with awful head pain every day was eventually put down to me clenching my teeth in my sleep which I had absolutely no idea I did this, I do not grind my teeth as in Bruxism. The pain used to be up the side of my head, into my eyes and forehead and temple was debilitating, the oral and maxiliofacial consultant recommended a mouth splint and this has helped me hugely, he suggested I used ibuprofen gel on my head in the areas it hurt which I was amazed about...

I also suffer from Behcet's disease so have ulcers and joint, muscle pains from this as well as EDS, and I have recently been diagnosed with a kind of pressure migraine, the Neurologist has said she believes that my nasal fluid drip is because of this, been taking daily meditation Sodium valproate for the last month and I have seen improvements, tried another medication called Carbamazepine but had a reaction to this and it caused colitis which is another issue now having to be investigated...

Don't be fobbed off please, ask many questions, write everything down, take pictures and always ask to be referred and if when you are sat in front of someone and they cannot help ask them to refer you to someone who can as ypu are desperate. And ignore people who make you feel awkward. Read up as much as you can.

Take care, Gillian 😊

Are there any signs of mold or water damage in your home or workplace?

Details in reply to Saassii

Yes I did have some mould and water damage in past. I had a blood test after I spotted the mould and was told there was nothing wrong and I had some treatment put on the mould.

Saassii in reply to Details

This is cause for great concern and may indeed be the source of your woes. Mold is extremely difficult to remediate and people lie all the time about what's possible for money. Depending on how long the water damage was there before you found it, it likely cross contaminated other porous and semi porous items. If that's occurred then a simple clean up will not have remedied the problem. Blood tests won't have helped you because science is extremely limited with what they can see with any blood tests when looking for inflammation from a microbial exposure.

If that's what's brought on your symptoms (if you see mold, bacteria, virus and a slew of other gaseous compounds they emit are also present) then simply leaving the premises for a short time won't change anything. Taking affected items from your home including clothing can just keep that inflammation going because the body has been sensitized to particular microbes, mast cells / the innate immune system responds to protect itself. Inflammatory mediators are continually being released.

If you want to KNOW, go away for 3 weeks minimum but take NOTHING from your home, just get some simple new clothes....see if your health improves during that time. I would be extremely wary of reentering the premises afterwards though. It seems in my experience anyway that returning after a break away shocked my immune system hard as fast and a disorder started that no-one even knows the name of nor can they find it on blood tests, but I have photographic evidence that leaves even Professors perplexed. People do not know enough about this and Drs definitely don't either, we're only just scratching the surface now.

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