Hi everyone I haven't been on the site for a while due to continual flare. I was just wondering if anyone here as experienced fungal sinusitis.
I am currently laying in a hospital bed on continual IV antibiotics waiting for the infection to subside before surgery planned on Thursday , what started as pain on the left side of my head and face turned into emergency admission on Wednesday . I am feeling frightened at the moment and any advice would be nice.
Thanks everyone 😘
Dear Scruffymouse,
Just wanted to let you know I am thinking of you and figuratively holding your hand from a distance (I am in Australia). I just got out of hospital after being on a drip of methylprednisolone for seven days. The tips of my fingers are breaking down and the nails and veins sloughing off. To top it off as soon as I got home on Saturday my left hand and forearm started cramping. I don’t have a lot of trouble with my sinuses but last night some foul looking mucous started coming out. Sorry to go on about my own problems- it is scary to be on your own and in hospital- will be thinking of you and saying a prayer for you.
Lesley
Thank you ever so much for your kind words , it is only people with behcets who truly understand. Sending love straight back. I am on my 8 th IV line as my veins keep collapsing , which only adds to the stress . X
Hi Scruffy (excuse me for shortening your name, but I love it!).
Just wanted to know how things are for you at the moment. Lesley
Hi Lesley , I came out of hospital after 6 days was out 3 and then back to a different hospital and was in for another 5 , my heart rate keeps going up , I have been put on bispropol beta blockers , but they are not sure why , they have stopped my cellcept and humira , because of the sinusitis , they want to operate but cannot until my heart rate is stabilized . The first hospital who knew nothing about behcets stopped all my tablets including Nortriptyline which apparently should not be stopped abruptly , I have experienced a lot of disturbing symptoms which I think could be part of that , shaking awful nightmares. I am praying things will settle down , having lots of new tests.
Thank you for your kind words , it's people like yourself on this site that help us through , tough times . Sending love hoping you are well . X
You would think that whoever ceased all your medications abruptly would have had more sense. Must be the season for flares as in also in the middle of a bad one with ulcers on the fingers and nail beds (think torture). Will be thinking of you. Lesley
Just looked back on posts and realised I am repeating myself- I think that is old age not Behçet’s, lol.
Thinking of you to , take care . Keep smiling ,big hugs xxxxx😘
Hi Scruffymouse
Really sorry to read you are in hospital and having a bad time of it and just wanted to say I am thinking of you and wish you well with your infection and surgery.
I have read about fungal sinusitis simply because I have been doing so much research trying to discover whats going on with a problem I keep experiencing and have yet to get to the bottom of my sinus, forehead and front of head pressure I keep experiencing along with this nasal / throat drip, occasional sneezing for absolutely no reason, even in the middle of the night, followed by more heavier nasal fluid, like water, which stop just as quickly within a couple of hours. I had some IgE allergy tests recently which came back with nothing for allergies, I am not sure if I am supposed to get tested for each individual thing or one IgE blood test covers everything... I am seeing ENT on the 4th April and still waiting for neurologist appointment...
Is your fungal sinusitis the allergic fungal sinusitis type or another type?
I was reading your posts and wanted to mention my leg pain has been improved with taking magnesium, the cramps I was experiencing have improved and I have not had this during the night in the last 2 weeks of taking 300mg a day, my legs are not fully pain free, muscles in calves and biceps the worst, as though they never relax, its like I've done a workout all the time. Consultant rheumatologist has just done some muscle blood tests, not sure what I forgot to ask.. not had results back yet, done last Tuesday.
Anyway Scruffymouse please take care, keep positive and strong, the people at the hospital will make sure you are looked after and monitored, please let us know how you are getting along.
Gillian x
Morning, I hope you had a restful night, I was thinking about you.
I also forgot to include last night about my sinus/head symptoms I get this tremor or feeling of slight shaking in my face, head and teeth 🙄 do you get any of these things? Did you have anything going on in the weeks running up you being admitted as an emergency that were noticeable and different than usual or anything else nobody has been able to explain? Just trying to understand how you have got this fungal sinusitis.
I have had a few people contact me after my post last week wondering what it is as they are getting similar.
Sending you big hugs and hands to hold on to xxx
Hi sorry for the late reply I really would urge you to go to your consultant . I had what I thought was sinusitis and went to go gave me antibiotics later that evening couldn't lift my head . A&e done cat scan and discovered large cyst and huge amounts of pus , immediately transferred to another hospital where the specialist was waiting , they have not operated because when they put the scope in there was to much infection . So been on IV antibiotics for 5 days . Which time I became very tachcardic to I point they thought I was having a heart attack . Which thankfully wasn't . I came home this morning with antibiotics and just had a call from Birmingham Coe which I am a patient and going there next Thursday for them to operate. So I know I'm in the best possible hands. I am sending love , please please go to a & e and tell them you need a cat scan . They said I had breathed in a fungus which normal is harmless and only effects imunocomrimized patients .
I hope this helps you , I had severe post nasal drip and immense pressure to the point I could not open my eye without pain.
I am very grateful that you even managed to reply, I seriously cannot believe what has happened to you and very hard to understand the fungus. If it is not too much can I please ask you to try and explain how things started, did it come on all of a sudden or have you been suffering with nasal drip and pressure a long time prior to you getting rushed in to A&E? Is this something you are aware of experiencing, with the fungus, now that they have explained this or do you have no knowledge of what fungus they are referring to?
Did you experience any sudden onset of sneezing in the weeks and months prior to all of this happening? Have you had any tests and imaging before?
Where did they locate the large cyst? I had a brain and scan which included images on my sinus in September to try and check out why I was getting this pressure, nothing untoward showed on my MRI it was looked at regarding if I had any neuro behcets signs. This pressure has been going on with me for quite some time now, I do have pressure but nothing like the immense pressure you are experiencing.
Sorry about all the questions just trying to understand as much as I can.
Good that you have got the CofE to go to, I am currently living in Scotland and have no access to such places...
Please look after yourself and take everything very easy until next Thursday, wishing you all my very best wishes, lots of love and huge hugs.
Gillian xxx
Thanks Gillian , my cyst is caused from a oral antrum fistula which occured 4 years ago to which I was in hospital for 4 weeks , I worked in maxofacial surgery for 25 years so I see things like this everyday , I had severe post nasal drip for about 8 days with pressure and then the night I went in my ear was bleeding , no runny nose or blocked nose which is unusual , the fungus could be anything it's everywhere , trees , leaves , plants by don't panic it is because I'm on cellcept and humira ,so no immune system . Wishing you well , please just go and have it checked , if you get time please keep me informed.
Take care xxx
Hi
Thank you very much for your detailed response, I do not pretend to understand the medical terminology but on looking up what you have mentioned I wonder whether the root filling is causing this, I had it carried out on my UL7 about 2009, sorry rubbish with dates... anyway in 2013 I had to have antibiotics to treat acute mucosa infection and then again in 2014 (14 months later) again to treat acute mucosa infection at LR6. and then last year I developed a swelling about 1cm in between UL7 and UL8, the swelling got larger and had a purple head on this, like a big boil, this was treated again with antibiotics, my dentist sent me to Oral and Maxillofacial who said they thought if this continues I should consider having the root filling tooth removed from UL7, things calmed down again but I have been left over the last year or more with this nasal drip and pressure, after another episode of antibiotics for swelling around the root canal filling tooth in May 2018. I took again my list of problems to Oral and Maxillofacial, I have it here, I said I did not know what was causing:
Swollen tongue, I have a scalloped tongue which has been accounted for as teeth clenching (bruxism, NO grinding). A painful sensation behind the back UR1 which runs up into my nose area into my forehead and creates pressure in all of this area. I discussed the feeling as the the roof of my mouth felt as though it has swelling under the skin into the roof o my mouth, that it also felt as though it was slightly burning as though I had burnt it, say hot soup, his reply was many post menopausal women get this... Tongue had like raspberry spots on. Teeth chattering, swelling on the inside of my cheeks, muzzy head like brain fog, occasional blurred vision, in December I had an episode of loss off peripheral vision on the outside of both eyes, since seen Ophthalmology in January 2019 who gave no explanation.
When I started Azathioprine (it is the only medication I have 125mg daily) it appeared to help my mouth ulcers and this burning sensation and swelling at the roof of my mouth but not the pressure or the tremors in this part of my face and head, nobody can see these tremors but they are there when I am in bed and relaxed doing nothing, the follow up appointment with the Oral and Maxillofacial in October 2018 said he had no idea about the sinus, face and forehead pressure, I brought up the fact the swelling at UL7 root filling had calmed down and asked should I still consider having this removed and he said I should consider this, to date the root filling is still with me. I have also had a brain MRI which showed nothing, next port of call is ENT and Neurology.
During the last week I have come away from my Rheumatologist expressing how improved my mouth has been, ulcers have calmed down... but a week later I have had 5 oral ulcers, my mouth has started to get this burning sensation, the pressure and dull pain behind UR1 is starting to get worse and the pressure in my nose and forehead, the tremors have begun to feel a little worse than the last few months.
I am going to send an email to my Rheumatologist and see what she suggests.
Thank you for your help and I truly hope you start to see things improve once you have had your operation. Sorry for the long winded reply.
Gillian xxx
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