CT Scan Clear - Still No Diagnosis
Posted , 53 users are following.
Hi All,
I've been having issues with constant blocked nose, pressure in my face and behind my eyes (also when I look up and move my eyes around around as far as they go I get a little pain and discomfort), it can bring on mild headaches. I also generally feel 'foggy' headed all the time, my ears feel like they are blocked a lot too. I feel my sense of smell isn't as good as it used to either.
I've been having these problems for 3-4 years now, I'm 24. When I first went to the doctor I was given Antibiotics, after several re-visits I was given nose drops, sprays and even a course of Amitriptyline. To no avail I was eventually sent to the ENT specialist, who checked with a camera, thought he seen something that made him think there was an infection, prescribed me more antibiotics.
Of course I was back complaining of the same problems as soon as my course was finished. CT Scan was next, results were completely normal, ENT specialist then told me I'd need to go and see a Neurologist next, this is so frustrating, can anyone relate??
I have found various posts on the internet describing the very same issues and it seems there are a lot of people without a diagnosis!
1 like, 82 replies
roza37180 arctik
Edited
Hi. I have the same problem. My CT scan didn't show anything. Boy I can feel the infection an my nose is blocked. It has been over 3 months now. I feel so helpless. Please let me know if you have anymore info.
cas216 roza37180
Posted
Have you improved at all, I hope? Did your doc give you any recommendations?
tam30154 arctik
Edited
tda tam30154
Posted
me too!!!! i just had a ct scan that was clear. i feel and hear fluid in my head that moves, have migraine like pressure. they are sending me to a neuro as well! ive had fluid in my ears for years and now its in my entire head b/c of crying (due to the anxiety of it all...which made it all worse) but the ent isnt really taking any of this into account. i feel crazy and this thread is the first time i feel like im not! I do acupuncture and am going yo start the natural suggestions listed on here. also my neck is jacked up from straining it at night when the fluid moves because my head is trying to get it out! but it doesnt budge driving me nuts, especially the brain fog sorry so long but ive been suffering in silence and am happy to find people who understand!
tda tam30154
Posted
also i see this is 6 months ago hope you have some relief i will stop at nothing!
Starkcher arctik
Posted
tisha212 arctik
Edited
i've also been having issues,real bad the past maybe 6yrs that it seems i stop breathing in my sleep because i wake up multiple times needing to breathe through my mouth&my heart rate also gets up,feels like i have impacted mucus all the way up,my nose has been dry for years was unable to blow it then i started getting headaches&pressure in my head,i feel like if i could just blow my nose&get it all out i'd feel a lot better,i had surgery on my nose in the past but it didnt help what i was actually complaining about,i got a ct scan done recent didn't show anything i was expecting it to show a possible infection or mucus stuck up or nose swollen,something,now i'm suppose to see if i have allergies but i dont know what i could be allergic 2 that would cause this,i barely leave the house since Sept 2015 thats when everything got worse for me when i stopped being active&i got worse&worse,i'm also suppose to see a neurologist,i'm wondering if it has anything to do with my immune system as well
tammy00343 arctik
Posted
I have been having these same issues for years first started with my salvary gland swollen and hurting now it's my left nostril stay stopped up and cheek and eyes hurt head ache I've had every test and scan there is tried. all the meds I'm worn out I have constant pain this have taking over my life I go now to see a neurologist in January I need relief
mel49267 tammy00343
Posted
do you have an update? i had pain starting in left salivary gland which moved to left sinus and now left eye and my ct was also clear but in life debilitating pain. would love to hear if you received any news
tammy00343 arctik
Edited
hello update on my cat scan still nothing is showing up this is very weird I'm seeing the neurologist now they think I'm suffering from cluster headaches and or nerve issues only on my left side still
jayo301 arctik
Edited
I'm so happy that I found this. seriously thought I was going crazy since I’m suffering from all the same symptoms for the last 12 years. I've been obsessed with finding a solution because it really has effected my quality of life which I probably don't need to explain to you guys. I'm also allergic to trees, grass, dogs and dustmites and take Zyrtec and Monolukast for the allergies.
I got my first sinus infection in 2008 when I went to Greece and then I moved to Houston where i went through many rounds of antibiotics along with 3 sinus surgeries. One surgery was a balloonplasty procedure which didn't work for me and the other two were turbinate reductions of the Maxillary, Frontal and Ethmoid sinuses. The sinus infections always came back after a couple of months though so after 8 years in Houston I moved to Denver where I was better but still not 100% healthy.
I got a top of the line concierge PCP who directed me to an Immunologist, ENT and Allergist. The Immunologist found that my body wasn't fighting staph sufficentently from blood tests so I was given a booster shot and my blood work also found that my vitamin D levels were really low so my ENT made me start taking 5,000 units per day.
This really helped but my sinuses kept getting infected. From the several swab testing that ive had on my sinuses I knew the bacteria was pseudomonas which i probably got from steam rooms in the gym so I talked my ENT into perscribing a Gentimycin rinse that I could continue to refill throughout the year. This helped tremendously so I'm 100% positive that it's a bacterial infection even though my CT's are clear and the scope of my sinuses were clear. Due to the half life of the antibiotics in the rinse since it's a liquid the medicine only last for one week so I have to constantly get it filled with the pharmacist. there is a powder for where it comes on tablets and you mix it yourself which has a longer shelf life but my insurance doesnt pay for it. i take that with me on long travels to ensure I don't get sick.
A big thing I've found is that if I inject the medicine rinse into my sinuses with a syringe, pinch my nose and lower my head between my legs to gravity drain it to the frontal and ethmoid sinuses and then lean all the way back to get it to the Sphenoid sinus that it I stay relatively healthy. I would say 90% which is alot better than my 40% in Houston. The problem is that I have to do this multiple times a day or I get sick so this is still a band aid but one that works.
My theory is that my Sphenoid sinus has a very small spot of infection that's not showing up on the CT scan and when left untreated with liquid antibitoics it reinfects all of my sinuses and renders me bes ridden. So from September of last year to the end of January I did some expierments on myself in order to prove or disprove this theory. to note, all of my sinuses are wide open except my Sphenoid sinus which I usually have the hardest time getting medicine to. Below are the expierments and the results:
1.)
Test: Not gravity draining Antibiotic rinse into my Frontal, ethmoid and sphenoid sinuses for 2 months but rinsing the maxillary sinuses.
Results: Extreme fatigue, trouble comprehending speech, memory issues, throbbing behind my eyes, sore throat, double vision, depression.
2.)
Test: Stop antibiotic rinse all together for 2 weeks after symptoms subside.
Results: discolored mucus from sinuses, extreme fatigue, depression, double vision.
3.)
Test: Forcing open the Sphenoid sinus with Afrin extra strength (6 sprays in each nostril) and a hot towel over my forehead for 10 minutes followed by antibiotic rinse and gravity draining medicine to Sphenoid sinus.
Results: Could hear the antibiotic liquid draining into my Sphenoid sinus on drip at a time, significant reduction in all symptoms and back up to 85% from about 20% over night.
4.)
Test: Repeat previous test after getting sick but instead of using antibiotic rinse use saline solution.
Results: All symptoms significantly increased with saline rinse.
Because of the above I’m almost certain that it’s my Sphenoid sinus which is in the middle of your head and effects the optic nerve. It’s very close to the brain and there are nerve all around it so surgeons don’t like messing with it. I also know that it’s a bacterial infection because saline didn’t yield the same results as the antibiotic rinse.
My current plan is to use budesonide spray which is a powerful anti inflammatory to try and get my Sphenoid sinus passages as open as possible so that I can get more antibiotic liquid to it. Afrin is not good to use long term and I only used it for 3 days max before stopping for a long period of time. I think if I can flood that sphenoid with antibiotics consistently for about a month I can finally get rid of the chronic sinusitis. There’s literally no where else for the bacteria to hide. If the budesionde doesn’t work to open up the Sphenoid sinus I plan to have it surgically opened like the rest of my sinuses.
I have appointments next week with my ENT and PCP. I’ll keep you guys updated and I hope my long post helped. Feel free to ask whatever.
Also here's a journal that i found on Sphenoid sinusitus that is spot on to what I expierence
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tammy00343 jayo301
Posted
hello I have these same issues for years driving me insane they have went from telling me I have salivary gland issues to don't see any thing I done had every test there is now I'm seeing a neurologist so your post help a lot will talk to my doctor a kaiser about this maybe I need my sinus swabs also thanks for this I'll keep you posted
tammy00343 arctik
Posted
also FYI I'm have my air ducts and dryer ducts cleaned tomorrow I'll keep you posted on that my doctor suggested that I do that
jayo301 tammy00343
Posted
ive done it. helped some in the long run but ripping up the carpet, dusting, putting a air purifier by my bed and humidifier worked way better. It breaks up particles in your vent so itll actially make you sick for a good 2 weeks afterwards due to having yo get that out the system. I woildnt do it again. Just got a 13 Merv filter and make sure that i change it every month.
im very allergic to dust mites though so this may do nothing for you
DDHarris arctik
Posted
any answers to this problem yet? I have been sick for 3 months. EYES HURT when i look up down or to the side, EARS HURT, FOGGY HEAD, NOSE SENSITIVE TO TOUCH. I have had 4 CT SCANS 1 MRI and they show nothing. I AM MISERABLE. IN PAIN. NO COUGH NO MUCUS NO NASAL DRIP so what could be going on?! NOW under my left eye aches. I need answers. BEEN ON 5 antibiotics.