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Nose, Sinuses, Eyes, Throat, Teeth... non-stop suffering, anyone?

MNC

Messages
205
Maybe what causes me more suffering on a day to day basis is my nose, sinuses, teeth, eyes and throat.

It has been pure hell for 15 years day in day out, and I am still waiting for a doctor to find a reason. They just never find anything, so they say it is all neurologic.

Does anyone have the same?

I have all of this for 15 years:

Nose: Complete obstruction of left nostril and severe of right nostril.I just can't breath through my nose. Deviated left septum. Turbinates inflammation and dysfunction of the right side.Terrible pain all the time. Mucus non-stop, thick and green usually as in pure sinusitis but they never find any sinusitis or infection.

Sinuses: Extreme pain. Never goes. It can be a bit milder or unbearable but never ever goes away. I hurt all over. My cheekbones seem to explode, my forefront, my head. All the 6 sinuses bags are in constant pain, specially when it is cold or rainy. Again, no explanation, no infection ever found in many x-rays and CAT scans.

Teeth: Terrible pain night and day, mostly all the upper teeth next to the sinuses. Specially my canines, which have root canals for 30 years. I seem to have infection after infection in the upper teeth, infections that never show up in the x-rays but when I tell them to pull out the molars because I can't stand the pain, there are always infections (so called granulomas) attached at the tip of the roots. Hell on Earth.

Eyes: Constant pain in the eyes that I attribute to the sinuses-nose or to using the computer so much, but in any case, they hurt and itch all the time. sometimes when the sinuses pain is very big I feel as if the right eye was going to explode. Again, going to Emergencies and taking x-rays shows nothing even in the most critical moments.

Throat: Constant pain, irritation and redness. Looks like those Crimson Crescents but I am not sure. I get pharyngitis every summer, with the air-conditionings all around. A few minutes in somewhere with air-conditioning and I am done. In my throat and in my chest/lungs and all over.

And, of course, I have been tested extensively many times for lots of viruses, bacteria, immune defficiency or AIDS and everything is normal. Just the classic CD4/CD8 reversed figures as it's usual in CFS, or slight IgG1 subclass deficiency not very relevant.

I have tried many antibiotics and many supplements and alternative stuff but nothing works. Also have been tested for allergies (nothing found) and tried antihistamines without any positive effect.

Anyone else has all of this or is it just me so bad?

Thank you.
 

IntuneJune

Senior Member
Messages
562
Location
NorthEastern USA
Not to the extent you have had, I did have similar symptoms, but mine were dx'd as sinus infections, subsequent testing found immune deficiencies, now being treated resulting in freedom from infections.

Good luck, if I had had to put money down for a bet, it would have been on infections.

June
 

onebush

Guest
Messages
35
All my teeth ache at night and if a storm is coming a double whammy. I had a lot of sinus infections when I was in remission, if that is what to call it. I never got sick when I was sick before either...not a sniffe. An ND I saw said to show her a person that does not have a cold a year and she wonders what they do have.
 

Lisa

Senior Member
Messages
453
Location
Western Washington
Have they looked for mold infections MNC? I've only found one doctor who even thinks mold based sinus infections are real and treats them. Feel a lot like normal sinus infections as far as many of the physical symptoms. They are also very reactive to changes in weather.

Good luck! Lisa :)
 

*GG*

senior member
Messages
6,389
Location
Concord, NH
Maybe what causes me more suffering on a day to day basis is my nose, sinuses, teeth, eyes and throat.

It has been pure hell for 15 years day in day out, and I am still waiting for a doctor to find a reason. They just never find anything, so they say it is all neurologic.

Does anyone have the same?

I have all of this for 15 years:

Nose: Complete obstruction of left nostril and severe of right nostril.I just can't breath through my nose. Deviated left septum. Turbinates inflammation and dysfunction of the right side.Terrible pain all the time. Mucus non-stop, thick and green usually as in pure sinusitis but they never find any sinusitis or infection.

Sinuses: Extreme pain. Never goes. It can be a bit milder or unbearable but never ever goes away. I hurt all over. My cheekbones seem to explode, my forefront, my head. All the 6 sinuses bags are in constant pain, specially when it is cold or rainy. Again, no explanation, no infection ever found in many x-rays and CAT scans.

Teeth: Terrible pain night and day, mostly all the upper teeth next to the sinuses. Specially my canines, which have root canals for 30 years. I seem to have infection after infection in the upper teeth, infections that never show up in the x-rays but when I tell them to pull out the molars because I can't stand the pain, there are always infections (so called granulomas) attached at the tip of the roots. Hell on Earth.

Eyes: Constant pain in the eyes that I attribute to the sinuses-nose or to using the computer so much, but in any case, they hurt and itch all the time. sometimes when the sinuses pain is very big I feel as if the right eye was going to explode. Again, going to Emergencies and taking x-rays shows nothing even in the most critical moments.

Throat: Constant pain, irritation and redness. Looks like those Crimson Crescents but I am not sure. I get pharyngitis every summer, with the air-conditionings all around. A few minutes in somewhere with air-conditioning and I am done. In my throat and in my chest/lungs and all over.

And, of course, I have been tested extensively many times for lots of viruses, bacteria, immune defficiency or AIDS and everything is normal. Just the classic CD4/CD8 reversed figures as it's usual in CFS, or slight IgG1 subclass deficiency not very relevant.

I have tried many antibiotics and many supplements and alternative stuff but nothing works. Also have been tested for allergies (nothing found) and tried antihistamines without any positive effect.

Anyone else has all of this or is it just me so bad?

Thank you.
I had a lot of nasal accumulation and complained of this to my CFS specialist so they did a nasal swab and sent the speciment to a lab for analysis. My Dr ended up prescribing me a compounded spray with the acronymn BEG spray. some combination of antibiotics I believe. This was prescribed to me about 1 year ago and my sinuses are much better now.

I still have persistent sore throat, this is not brought on by AC, I just have cough drops in my mouth almost 24/7. At least when I am at work and will likely have to talk to someone.

I have only been dealing with this for 7 years, 1/2 the amount of time as yourself. I get dry nostrils, even worse now that I use a CPAP and use "pillows" that go into my nostrils instead of a face mask, due to my beard. Although I alter this to allow for my nostrils to heal!

FYI

PS Hope this helps!
 

camas

Senior Member
Messages
702
Location
Oregon
The Mayo Clinic did a study of chronic sinusitis about 10 years ago and found that almost all cases were caused by fungi -- yeasts and mold (as Lisa mentioned).

Many years ago, before I developed CFS, I struggled with chronic sinusitis and went from doctor to doctor with no relief. Around that time, the first Yeast Connection by Dr. Crook was published. He recommended snorting tiny amounts of nystatin powder for sinus problems. My doctor at the time was dubious, but wrote the prescription. I had relief within a few days and had no more difficulties with my sinuses for over a couple of decades.

Then a couple of years ago I developed sinus problems again and asked my current doctor for a prescription. He couldn't seem to locate nystatin powder, so wrote a prescription for an oral suspension of nystatin. I wasn't sure it was the greatest idea to be flushing diluted cherry flavored nystatin through my sinuses, but it did the trick again.

I'm sure there's a better way to address fungal infections in the sinuses (man did that suspension burn), but thought I'd share my story with you on the off chance that this is the cause of your misery.
 

onebush

Guest
Messages
35
I forgot to mention that the best thing I have found is an OTC product nasal wash called X lear )(lear is on the label. I got it at the heath food store and online sometrines. You can put it in your search engine and read about it. I found the neti pot and sal solution d to work well before I found that. The X clear would sart the sinues clearing with the first two squirts.
 

MNC

Messages
205
The Mayo Clinic did a study of chronic sinusitis about 10 years ago and found that almost all cases were caused by fungi -- yeasts and mold (as Lisa mentioned).

Many years ago, before I developed CFS, I struggled with chronic sinusitis and went from doctor to doctor with no relief. Around that time, the first Yeast Connection by Dr. Crook was published. He recommended snorting tiny amounts of nystatin powder for sinus problems. My doctor at the time was dubious, but wrote the prescription. I had relief within a few days and had no more difficulties with my sinuses for over a couple of decades.

Then a couple of years ago I developed sinus problems again and asked my current doctor for a prescription. He couldn't seem to locate nystatin powder, so wrote a prescription for an oral suspension of nystatin. I wasn't sure it was the greatest idea to be flushing diluted cherry flavored nystatin through my sinuses, but it did the trick again.

I'm sure there's a better way to address fungal infections in the sinuses (man did that suspension burn), but thought I'd share my story with you on the off chance that this is the cause of your misery.

Thank you very much to all of you. I think I will try to start by the Nystatin on the nose. Since this is such an old problem I have tried and read everything on earth over the years, and I bought and read the book you mention long ago. I tried the Candida Diet, I took Nystation orally, etc, and read the Mayo Clinic research on fungi being the cause of most chronic sinusitis too.

I know they have been working on a nasal spray to fight fungi but the last time I read about it it was still under development. It was, if I remember well, based on amphotericin-B, not in Nystatin, but maybe it is similar as both are anti fungals.

In fact my symptoms are very similar to the described of fungal sinusitis, although the doctors and tests didn't prove or find it. But I do for instance get much worse in moldy and humid places. All the described literature of fungal infection.

If you don't mind I will send you a PM asking for a bit more detailed information on what you did with the Nystatin. I think I can buy it here without prescription in pure powder form, but I need to know how you did it more precisely.

Thank you very much to all again. Let's see if by miracle I manage to find a remedy to this nightmare, that although frequent in CFS it doesn't necessarily happen to everyone and in my case is just terrible.
 

camas

Senior Member
Messages
702
Location
Oregon
If you don't mind I will send you a PM asking for a bit more detailed information on what you did with the Nystatin. I think I can buy it here without prescription in pure powder form, but I need to know how you did it more precisely.

My doctor said the only nystatin powder available was for external use only. If you can find a powder for internal use, please let me know!

It's been so long since I inhaled the nystatin powder that I can't really remember how I did it, but here's the passage on it from the 1986 Completely Updated and Revised Yeast Connection by Dr. William Crook, M.D. p 240.

Sniffing or inhaling nystatin: Nasal congestion occurs commonly in people with yeast-related health disorders. Moreover, candida colonization often occurs in the nose as well as in the digestive tract or vagina. Nasal candidiasis is especially prevalent in persons who've used nasal steriods.

You can often help your nasal congestion, post nasal drip, and mental and nervous symptoms by inhaling nystatin. Here's how you do it: Shake your bottle of nystatin powder vigorously. Remove the cap and hold the bottle just under your nose. Sniff or inhale cautiously. Do this each time you take your oral nystatin.

If you tolerate this procedure, gradually increase the amount you inhale over the course of several days. Usually 3 or 4 inhalations of nystatin "smoke" will allow the medication to settle on your deeper nasal and sinus membranes.

A word of caution: Sometimes your symptoms worsen the first several days you try this procedure. However, stick with it and you may find your symptoms will improve within a few days.

Here's an alternate way of getting nystatin into your upper respiratory passages: Prepare a fresh solution of nystatin, adding 1/4 teaspoon of powder to 4 ounces of boiled and previously cooled water containing 1/4 teaspoon of table salt. Using an ordinary medicine dropper, hold your head back and fill both of your nostrils with the solution. Then swing your head forward rapidly and hold it down between your legs for two minutes. The sit up and let the mixture trickle down your throat.

Here's an even more convenient way of getting nystatin into your nasal passages: Buy a bottle of Ocean Mist Nasal Spray from your pharmacy. This is an isotonic saline nasal spray. Add 1/16 to 1/8 teaspoon of nystatin powder to the bottle and use one or two squirts in each nostril twice daily.

When I used the oral suspension, I diluted it by about a third with water (probably should have boiled the water first), put in in a NeilMed sinus rinse bottle, and ran it through my sinuses once a day for about a week. I'm still not sure it was the brightest of ideas given all the added ingredients in the oral suspension, but it did get rid of the problem.
 

ukxmrv

Senior Member
Messages
4,413
Location
London
I've used Nystatin in a sinus bottle for my infected sinus area in the late 80's (also had the Crook book) but it didn't clear up the problem I had.

I then book an irrigator in the 90's and that been really good. I tried Nystatin again but got on better with plain sea salt or tea-tree or grape seed extract and other things.

http://www.hydromedonline.com/

(no financial interest in this company).

I've also tried putting things in a Neti pot

http://en.wikipedia.org/wiki/Nasal_irrigation

Even salt and water in the irrigator was enough to control a long term and serious sinus problem. I had a CAT scan and was scheduled for surgery but I didn't need it after buying and using the irrigator and salt/tea tree.
 

camas

Senior Member
Messages
702
Location
Oregon
I tried Nystatin again but got on better with plain sea salt or tea-tree or grape seed extract and other things.

I didn't have any luck with plain sea salt irrigation which is why I asked for the nystatin this last go-round. I hadn't thought of using tee tree oil. I bet that would knock out a number of culprits. What kind of dilution do you use? I know you have to be careful because it's so concentrated and can easily irritate mucus membranes.
 
Messages
20
I had some similar symptoms to yourself on and off for years until the past year or 2 when it became almost a constant problem. It wan't until i had some sort of bone abcess and the dentist got involved again, after i started feeling electric shock like pain in my teeth, that got a diagnosis of trigeminal neuralgia. From my readiing of how others develeoped the symptoms i've come to believe that it was something that took years to develop and has causing pain in my eyes, nose, teeth, ears and head with an ever increasing intensity.

Do some reading on trigemial neuralgia and raise it with your doctor if you think it may be a posibility
 
Messages
36
Location
NY
Ive been suffering with severe sinus infections for a few years now. Ones that would last for months with no relief and ones that turned into bronchitis. I went to an allergist who did a scan that Ive never had before and who also checked me for h-pylori. no allergies, but turns out my sinus cavity was filled to capacity. ENT scheduled surgery immediately (after being on extremely strong antibiotics and steriods- this combo made me feel amazing for the first time in a LONG time. 3 days after the scripts were done I felt like complete crap again) and during the surgery he found that I had a cyst half the size of my sinus cavity.

I still get sick but not to the extent that I was...but you will not IMAGINE the stuff that comes out of my sinus cavities..even now over 6 months after the surgery.

I do sinus rinses w/ a water pik (they have a nose attachment) and some sea salt. It helps to break up some stuff, but when I start getting sick I get a HORRIBLE smell in my nose that my boyfriend can smell across the room. I would assume its some kind of fungus because of that.

Every time I start getting sick though, I start with the nose/throat/ears (my body decided to start giving me ear infections again at 22 years old...after I hadn't had one since I was so young I can't even remember)

Sinus issues suck. You can feel like your half way dying when they get bad.

I had absolutely no relief with the netti pot...but I would suggest the water pik. Its painful and makes you feel like you are drowning, but about 3 hours later everything that was there starts to come out. Being able to breathe feels amazing.
 

ukxmrv

Senior Member
Messages
4,413
Location
London
Camas, I put a few drops into warm water (and sometimes add sea salt etc) and use this in the water pik device. Forgotten star wrote a great description there. Can be very painful to use but afterwards sinus bliss.
 

YSL

Messages
11
Also, infections associated with Lyme may cause those symptoms....like Babesia, Bartonella and a few others...
 
Messages
29
MNC - this is a pretty old thread, I found when doing a search, but it sure sounds like it could be "dental infections". Some camps are very sure about root canals harbouring chronic infections [blood flow does not reach there, so the immune system cannot cure it].

Antibiotics won't help root canal infections either, also because of lack of blood flow there.

All the sinus and throat and so on symptoms could come from a dental infection.

BTW, I had all my teeth removed when I had "face pains" and the pains stopped for 10 years [recently returned, which ruins the theory I suppose]. Just an idea to look into.