Congested sinuses

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Four years ago I was diagnoised with vestibular migraines but there's another issue that is destroying my life and not sure if it's connected to migraines or something else! Sinxe all this started I have congested sinuses apon awaking in the mornings my nose runs clear gunk for up to 2 hours then stops Then every few months I start to feel very lathargic start sleeping alot eyes start to become blood shot dizziness may get worse...this is the build up...then my nose will start to feel prickly inside for a few days I'll then awaken to my ears ringing really loud and they feel muffled my sinuses will be severely congested like the blood vessels have swelled so bad ..I can't breath...I feel panicky and cry with it this can go on months and this last attack caused burning and throbbing inside sinuses and roof of mouth plus right side of face. I have had ct and mri scans of sinuses and brain all clear I have been told I have some form of migraine but still not been diagnoised except for vestibular migraines. I thought possibly trigeminal neuralgia but been told that it's probable trigeminal neuropathic pain? Is there anyone here with symptoms like me? I'm at my wits end..sorry for long post.

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    hi Cnantelle, this is so like my story. Diagnosed with vasculitis about 11 years ago now. Thank god for diagnosis. 

    I am not sure where you live....are you UK based?? I think you want to see someone who can maybe tie your symptoms together. The fatigue and sinus problems and migraine are all symptoms familiar to me as is the burning inside the nose. 

    If you can give me an idea of where you are based I might be able to make suggestions for a referral. It's miserable feeling like that all the time. I have good treatment at the moment (well it was great for about 3 years, a little bit less effective now). Any othe symptoms going?? IBS issues or anything of that nature?

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    • Posted

      I too have the same thing as Chantelle and would be interested to know what treatment is given for this. As if it's not bad enough coping with the migraine! The burning and sinus problem in my case is on the opposite side to where I get my migraines. Any help gratefully received.

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    • Posted

      who have you seen about the migraine?? And do you have other symptoms also? Often this sort of migraine is symptomatic of something else. 

      I had dreadful migraine and neck pain. Migraine could last for a long time. I also get bleeding inside my nose which gets terribly sore. The burning in the nose reacts well to spraying with a steroid nasal spray. Not inhaling it which may sound odd. But if you have this it's caused by inflamation and spraying something like flixonase over the inside of the nose will help massively. The steroid dampens down the inflamation. As I say don't sniff it up your nose. It's available over the counter. I think it's flixonase most of us use. That's a uk brand name so if you're outside of the UK then it will have a different brand name. 

      Who do you see for migraine?

       

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    • Posted

      Sorry think that should be beconaise. It is a steroid nasal spray anyway and bought over the counter without prescription. 
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    • Posted

      Hi,

      I have seen a consultant at the hospital and had a CT scan which was clear and also showed sinuses were clear. I have had this additional burning sinus pain for well over 5 years. I have allergies and awful neck pain and lots of joint aches and pains...hips and knees especially. I don't take any preventatives for the migraines at the moment. I will try the nasal spray, thank you. 

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    • Posted

      yes my ct scans are always clear also. I have never shown anything. It's inflammation that's usually the cause of all of it. If you want to pm me what part of the country you are in I can recommend sometong to see you. A consultant may not necessarily diagnose what is going on with you. You need to see right kind of consultant. 

      Great guy in London called Desmond Kidd who is a consultant at the Royal London with a special interest in auto immune disorders. Not sure if it's practical for you to go there. There are other consultants who could help you but need to know where you are. Take care and if you want any more info message me privately if you'd rather. 

      Yes joint pain that you describe is all part of my symptoms too. 

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    • Posted

      Hi margaret22116 oh wow I'm not alone with these symptoms! I'm based in harrow middlesex. I'm awaiting to see a neurologist called dr chong at queens square...I have seen facial pain team there aswell but all are diagnosing it as migraines. My life is destroyed with all this it's terrible xx

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    • Posted

      I have been tested for allergies I've seen ent I've been everywhere ?? I'm not sure my gp would refer me anywhere else! What is your condition? How were you diagnoised? I am so low with all this I need help!

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    • Posted

      hello Chantelle, I know where you're coming from and I hate to say it but I saw a neuro who was no help to me whatsoever!! It was ok that she couldn't help I was sent to her by my vasculitis specialist who just wanted to rule out that I didn't have a neurological disorder. You can get a neuro form of vasculitis. But my brain was all clear. The neurologist I saw admitted that she couldn't diagnose my illness. They deal with the brain and dysfunction in the brain.

      The major difference is I have neuro symptoms caused by inflammation. The good news is that it is not degenerative. Symptoms can be treated and kept under control. The bad news is it is difficult to diagnose and diffucult to treat! So life is fun. But you can get treatment. You need to see the right sort of doc. 

      I have just put a call out to my online help group to see if there is anyone in your area and to ask if they can tell me where they get treatment. Oh and by the way, the nasal spray I suggest will only help with the nasal pain. It will not help with migraine. 

      If you can ask for a referral to a London doctor I'd go see Dr Kidd I mentioned above. Dr Kidd is a neurologist but he undestands the inflammatory process underlying these disorders so he is sort of special. If you could afford a one off paying appointment with him he'd see you privately within a week and then follow up on NHS. Expensive I know but I would have done it in the days before diagnosis I was so desperate. I know it's not always possible for people to pay a fee like that. It's over £200 for a consultation. 

      The other sort of doctor you might want to see is an immunologist. I am suggesting your problem is immune system related as it is with me. 

      So you get all these random seemingly unconnected symptoms and no one knows what to do with you. I had years of that until I finally saw a rheumatologist for the joint pain who referred me on. Still took a year or more for diagnosis with an immunologist but I am now seen by a great doc in Cambridge. He is fab.  

      A great point of contact and for advice and info is vasculitis uk. Have a look at the website. I am not saying to you both you have vasculitis but I think given the similar symptoms to mine you might very well have some form of it. 

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    • Posted

      Hi Margaret thank you so much for all your information I will do some research. I'm gutted as I just paid £300 to see a headache specialist ?? who said he is not 100% sure what type of headache I have yet!

      I'm so frustrated ...if I payed private to dr kidd would I need a referal from my gp to see him on nhs?

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  • Posted

    Chantelle, if you paid to see Dr Kidd you wouldn't need a referral from your gp. His secretary is so lovely. He has a private practice and you can see him there and get follow up on nhs if he says you need follow up. Your gp can't refuse to let you see him. He will just book you into his clinic at the Royal Free if you need follow up. He is just great believe me. I have seen him twice and he was so good. For a variety of reasons I go to see David Jayne in Cambridge at Addenbrooke's hospital vasculitis clinic. He is amazing. Only reason I don't suggest him is you would mabye find it more tricky getting a referral to him because he is outside your area and you are not yet diagnosed. Might be difficult. 

    But if you saw Dr Kidd and he went with this as cause of your migraine and gives you a diagnosis keep in touch and I will tell you where I definitely wouldn't want to go. 

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  • Posted

    The other nasal spray which has been recommended to me by someon in my help group is Beclometasone Dipropionate. 
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