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Rhinitis

One of my very early diagnoses was vasomotor rhinitis, which is basically rhinitis without allergy or infection being the cause. I do have allergies as well- I’ve been tested several times. But it was middle of winter, when I do not have allergies. My allergens are weeds, grasses, trees. Funny, I have repeatedly NOT tested as allergic to molds.

Anyway, after lots of research into vasomotor rhinitis, I happened to read in the HYH book that Buchholz calls vasomotor rhinitis just another manifestation of migraine.

I also experience this…in fact its one of my main symptoms. At times i feel my nose would burst its pulsates so strongly. I get this almost daily to different degrees. Botox and Venlafaxine shut it down somewhat. My Neuro says it defintely is a manifestation of migraine
Jo

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I think stability is core which is why fluctuating hormones is probably what keeps some females MAV cycling for years, even decades. Lack of stability. The VRT body I saw was quite prepared to work with me following my MAV diagnosis but not until I had the condition under total control with medication she wrote. As I’ve since discovered rather an unlikely occurrence. At least not for a very long time. Helen

Same here. Thanks to the lovely trigeminal nerve that becomes activated during migraine. I also get eye tearing and twitching on the same side.

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Well, i just learned something new! I have the same issue where my behind my nose into my forehead feels like it throbs with an incredible amount of pressure. I knew it was a “new” symptom I have never had just thought it was the Ami I suppose.

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We are exactly the same. And just to make it even more interesting i was diagnosed with Trigeminal Neuralgia BEFORE Vestibular Migraine. I had a brain scan to try and identify a vascular loop and rule out anything sinister…MRI was normal
My nose goes beserk pumping to the point of explosion…so does my ears
Just a change of weather can trigger them especially wind
Jo

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Hi Jo, I thought of you last night, didn’t have the best day yesterday tbh just did way too much over the Easter weekend. So went to bed and out of nowhere my nose started to pulse and throb like it had a life of its own. So almost 3 years in, meds making a positive difference… I get a new symptom… Its like mav likes to throw a curved ball… But I can’t imagine how hard that pulsing would be daily, it was like my nose was its own person :roll_eyes::grin:. Hope you keeping well x

Hello Elaine great to hear from you.
Isnt it a horrible symptom to have to contend with??? I have nose pressure or pain or pulsating every single day but to varying degrees. I hope your experience is a one off!!! I noticed mine gets worse if i drink something hot it goes beserk.
Jo💖

@Jojo65 my Neuro thinks it’s my bad neck (pinched nerves) all on the left, triggering spasms upstream (irritating trigeminal nerve) and I have a TMJD problem on that same side too. I do not know which came first- the neck or TMJ. I do know that one can cause problems with the other. I can press on a location just under my earlobe and cause instantaneous, intense left sinus pressure and tingling in my left throat. Dr. Google led me to this condition, but I’ve not yet addressed it with my Neuro. I will in June.

EXACTLY the same for me. It’s so intense and sudden, it’s almost shocking. Like a sudden intense muscle cramp.

Yes…spot on descrption. So what is it??? Blood vessels swollen so badly or the other restricted and the blood cant flow properly…or is it nerve ends? Or both???
I get exhausted with it
Jo .

Ernest Syndrome…thats brand new to me ive never even heard of it. Tell you what… some of those symptoms dont half match ours!!!
Jo

It’s very unpleasant, didn’t like it one bit. I’m hoping it’s a once off too. You’re great really to keep going, with tn and mav, I think you’re a :star2::star2::star2::star2::star2:

I believe it is nerve pain. I had bad acupuncture once, long before MAV. When he put the needle in on my leg, I felt a heavy, dull, sick, cramping pressure sensation. It reminds me of this effect in my left nostril/ear. Have u tried gabapentin? It has helped me, but the next day I feel a bit anxious and dizzy, so I don’t take it. My spine Dr gave me a low dose- only 100mg. I was surprised that it helped.

Me too. I have no idea if it is an accepted condition or not, but I have all the symptoms, right down to the one spot. Will ask Neuro abt it in June…

I already take 300mg of Gabapentin at bed time…have done since 2014 when diagnosed with TN. To be honest i think i would have to take massive doses to get any relief and i can just say tolerate what i take now. I was hoping Ven may help as my work colleague has Fibro and it helps her pain
Jo

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So for me ven has helped hugely with pain and in particular nerve pain around my right eye, temple and rhs of crown, since hitting 112mg its reduced it a lot. I’m in the process of drafting a diary and looking at my stats on good vs bad days but in March I had 17 pain free days. As the months go on you might consider moving up to 112mg for pain relief especially if you are tolerating it so well. I’ll share how my progress goes on 150mg esp on pain x

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Thanks so much for all your input and advice Elaine. As you know i get Botox every 12 weeks which has helped massively with neck and head pain and to a degree nose and ear pressure but it still hangs around im hoping the Ven will shut it down
Thanks again
Jo💖

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Hey Jo, my nose pressure is much less these days, have you considered the Cefaly device? It’s expensive but its working very well for my nose pressure/pain. Cefaly can also treat TN but it depends on which part of the nerve that causes the pain.

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@ander454 what part of the nerve does it work best with?