Nasal rinse for sinusitis - experiences?

[Sasha]

I've had sinusitis for many years, though it's only recently been diagnosed. I get severe headaches maybe once a week that force me to lie down, and discomfort under my eyes.

After a failed trial of Flixonase, I'm going back to basics and trying a Neilmed nasal rinse once a day, using their saline packets. I've read that grapefruit seed extract is good for sinuses so I've added a drop to the solution this morning and thought I'd work up to four drops and then hold it steady.

Here's Neilmed's video of how to use their sinus rinse, which I found helpful because I'd been holding my head upright instead of horizontal:

I know some people use Netipots, which are similar.

I wondered what people's experiences with nasal rinsing had been, such as how quickly you saw any improvment with your sinusitis, how often you do it, what you add to the water, when's the best time, any tips...

 

[In Vitro Infidelium]

Only two of the four facial sinuses have an access to the nasal passage - this access point is very tiny usually the size of pin head. Although a blocked nasal passage could lead blockage of the sinus, in most cases pressure within the sinus (which in some people can actually impact on the optic nerve) is a result of problems within the sinus. So unless there's an actual blockage of the nasal passage - no amount of 'flushing' will help a sinus problem - in fact it may make it worse because the 'flushing' can change the normal flora of the nasal lining and produce inflamation of the lining which then blocks the sinus access. This change of flora can be one of the down sides of using steroids like flixonase and may set up a cycle where you have to keep using the steroid to reduce the inflamation - but that may still be the least worst option.

If there is definitely no persistent infection of either the nasal passages or sinuses (nasty coloured guck etc) present, then a steroid treatment is worth persisting with - it can be a challenge to get the spray squence right so it's worth experimenting with how you hold your head, the strength of the inbreath etc, the key is to get the key ingredient just into the upper nose, without sucking it right down into the throat - if you get a strong bad taste in the back of your mouth for instance, then you've gone too far. If flixonase doesn't work, there are alteratives that might be worth trying. The other thing to consider is whether the cause of the inflamation (either in the sinuses or nasal lining) is availadable. Putting on a mask when dealing with, dust or household cleaning products, avoiding smoke, changing laundry products, avoiding high scented products etc might all have benefits if the problem is infrequent.

For what it's worth, my take is that allergy responses work as a double whammy in M.E/CFS - operating as a multiplier of an underlying illness. Whether there is a direct connection in causation of the two, or whether people who are alergy prone are simply more ill with M.E/CFS, hopefully will one day be made clear.

IVI (I don't buy into the mold theory- but I've found sticking your head in a compost bin and taking a deep breath is a bad idea)

 

[heapsreal]

Its my experience that if you have frontal sinus issues (across the eye brows) that nasal rinsing want touch it, too far up to reach these, anatomically its almost impossible too. The most beneficial treatment i have found for my sinus issues is to just stay on doxycycline for long periods of time and use nystatin and probiotics to avoid any gut issues from antibiotics. Signs i know my sinuses are getting worse is when my post nasal drip suddenly stops without being on antibiotics and i wake up with severe facial pain and if i leave it untreated it increases my blood pressure and really gives me severe throbbing headaches and is why i choose to treat it the way i do. I believe that for many of us that these are opportunistic infections(mostly staph infections) and occur cause our immunity is poor.

I do think nasal sprays etc do help to try and keep things flowing though even if u cant get right into the sinuses themselves. I also think that maybe rinsing with saline water can also have antibacterial effects that could help with bugs that have been inhaled through the nose and at the openings of the lower sinuses.

 

[Sasha]

Here's a Cochrane systematic review of randomised controlled trials on nasal irrigation for acute (not chronic) upper respiratory tract infections including sinusitis:

http://espace.library.uq.edu.au/view/UQ:201653

Only three trials, which is not much, but showed limited benefit for these acute things. Pity there's nothing on chronic sinusitis.

I have frontal sinusitis as well as under the eyes and a nose that gets stuffy at night when I lie down so maybe it will help if I can get my mucosal flora further down happier and they might migrate upwards?

There's no horrible gunky mucus at all and I gave the Flixonase a trial of about 4 months with an increasing dose so I reckon it's had its chance - I got good at squirting it where it needed to go so I don't think that was an issue.

I'm on MAF 878 which of course is a massive probiotic if nothing else so am hoping that ultimately that might help but in the meantime, the headaches, when they happen, are horrible.

Sorry you've both got problems with this too, it's not pleasant!

 

[Sushi]

I've had sinusitis for many years, though it's only recently been diagnosed. I get severe headaches maybe once a week that force me to lie down, and discomfort under my eyes.

After a failed trial of Flixonase, I'm going back to basics and trying a Neilmed nasal rinse once a day, using their saline packets. I've read that grapefruit seed extract is good for sinuses so I've added a drop to the solution this morning and thought I'd work up to four drops and then hold it steady.

Here's Neilmed's video of how to use their sinus rinse, which I found helpful because I'd been holding my head upright instead of horizontal:

I know some people use Netipots, which are similar.

I wondered what people's experiences with nasal rinsing had been, such as how quickly you saw any improvment with your sinusitis, how often you do it, what you add to the water, when's the best time, any tips...

I know that nasal irrigation doesn't go very high but it still helps me and I do it every day--it always seems to wash out some guck. I find that an electronic machine works a lot better for me than a neti pot. I also use a mixture that is supposed to be compatible with nasal passages and also has xylitol to kill things. I also add other things like nystatin powder as needed. I actually copy the formula now instead of buying it:

And I use it with this machine--a Grossan Hydro-Pulse Nasal Irrigator:

 

[MishMash]

Sasha,
I'm glad you discovered nasal irrigation. It's one of the few things that actually helps my symptoms. I have a theory that with ME/CFS, the mucous membranes all over your body are permeable and compromised. Most prominently the nasal sinuses. So I do it twice a day with tons of salt. I also gargle, because at some point every day I feel the back of my throat getting sore. And if you have allergies, try plugging your nose and forcing the salt water into your ear canals. The pain is intense. But it immediately alleviates the pressure and soreness there. After years and years of looking, the only things that really, actually help me are sinus irrigation, many Advil, various benzodiazopine drugs, and not exercising too hard.

 

[AFCFS]

Just my bias, but given that Oprah/Dr Oz has endorsed the Neti Pot, then I tend to stay clear of it:

It may look strange, but Dr. Oz says this treatment may be more effective than medication. "The [ear, nose and throat] doctors who are specialists in this area will often say this is a better treatment than a lot of the other drugs that we try to offer folks, because it mechanically cleans out the problem," he says.

AND THEN TO MAKE THE "INFOMERCIAL" COMPLETE:

Since then, Amy says she and her husband have used the neti pot every day! "It is fantastic. I have not had one sinus headache. I haven't spent any money on any cold products," she says.

Aside from the hype, I actually tried the Neti Pot before seeing this. For me it seemed to make things worse in the long run.

 

[nanonug]

After a failed trial of Flixonase, I'm going back to basics and trying a Neilmed nasal rinse once a day [...] I wondered what people's experiences with nasal rinsing had been, such as how quickly you saw any improvment with your sinusitis, how often you do it, what you add to the water, when's the best time, any tips...

I use it every now and then but it doesn't help that much. The only thing that consistently works for me is Benadryl.

I've had sinusitis for many years

If that's the case, I invite you to have a look at this post and count how many symptoms of yours are in that list. And I would be curious to know, if you were kind enough to report back!

 

[Sasha]

If that's the case, I invite you to have a look at this post and count how many symptoms of yours are in that list. And I would be curious to know, if you were kind enough to report back!

Hi - just a couple! I don't think that's me.

 

[MishMash]

The world is divided into the "ick" responders and those who have tried nasal irrigation and liked it. The "ick"ers would rather take repeated rounds of noxious, toxic antibiotics, which don't really work. Then complain about how many sinus infections they keep getting. It sounds like masochism to me, but to each his own.

 

[nanonug]

Hi - just a couple! I don't think that's me.

Hmm, interesting. So, sinusitis and headaches are the only two symptoms from that list?

 

[Sasha]

Hmm, interesting. So, sinusitis and headaches are the only two symptoms from that list?

I was counting sinusitis and headaches as one, and hot flushes as another but I think that's my age...

 

[nanonug]

I was counting sinusitis and headaches as one, and hot flushes as another but I think that's my age...

If you don't mind my asking, what are the ME/CFS symptoms you have?

 

[Sasha]

If you don't mind my asking, what are the ME/CFS symptoms you have?

PEM, OI, insomnia & unrefreshing sleep, memory & cognition problems are the principal ones - I tend to forget the rest until I read the CCC or something (memory problems, like I said!). If any of those were a long way down your list I might have missed them but I read about 30 or something and was coming up with nothing. I had acute viral onset.

 

[nanonug]

PEM, OI, insomnia & unrefreshing sleep, memory & cognition problems are the principal ones - I tend to forget the rest until I read the CCC or something (memory problems, like I said!). If any of those were a long way down your list I might have missed them but I read about 30 or something and was coming up with nothing.

With the exception of PEM (which is a "cloudy" symptom) everything else you mentioned is associated with mast cell activation disorder.

Regarding PEM, in my opinion, it is the result of the inflammatory cascade initiated by the release of mediators upon mast cell activation.

Given that MCAD is testable, I think it is always worth giving it a shot. You may want to contact The UK Mastocytosis Support Group for a referral.

Good luck and let me know if you have any questions!

 

[Sasha]

I don't understand what you mean by saying PEM is a cloudy symptom - it's defined as a delayed worsening of neuro-immune symptoms such as flu-like malaise. Have you seen the study done by the Drs Light, which shows a comparison of post-exertional effects on PWME vs PWMS vs normals? Their graph showing the difference between the groups is spectacular. It's the cardinal symptom of ME, and the other symptoms are well-established as ME symptoms.

According to your list, I don't have about 90% of the symptoms of MCAS.

I think I'm a classic case of ME - I fit the ICC and CCC definitions.

 

[nanonug]

I don't understand what you mean by saying PEM is a cloudy symptom

Malaise is a symptom. "Malaise after exercise" is not a symptom, the symptom would still be malaise - it just happens to be triggered by exercise in this case.

In certain people, exercise triggers mast cell activation. Mast cell activation leads to an inflammatory cascade similar to an infection (that's what mast cells are for, after all). The same can be said of any other kind of stress as mast cell have receptors for corticotropin-releasing hormone. In my opinion, mast cell activation single-handedly explains PEM.

According to your list, I don't have about 90% of the symptoms of MCAS.

It's really not my list. In any case, and in my opinion, you have enough symptoms. However, at the end of the day, testing is king. And, unlike ME/CFS is nothing but a definition, MCAS is a real disease that is testable and treatable.

I am checking out now because you seem to be getting upset and that was not my goal.

 

[Little Bluestem]

I have a neti pot and make my own solution using salt and baking soda. Because of the time and messiness, I use it only sporadically. When I do manage to use it for a few days in a row, both air and the neti pot solution move through my nasal passages more easily. I don’t know that it has ever helped my sinuses.

The directions say not to let the solution run down your throat. I think that is because you are not to swallow it. I have found that I can let a little of the solution run down my throat, then spit it out. Doing that a few times cleans the post nasal drip off of the back of my throat.

The thing that best keeps my sinuses draining rather than getting blocked and giving me horrible headaches is MSM. It contains sulfur, so should be used with caution by this crowd.

 

[Sasha]

I am checking out now because you seem to be getting upset and that was not my goal.

Hi nanonug - I'm sorry if I came across as upset - I wasn't at all but having re-read my post I can see that presenting just a list of facts as to why I disagreed with you might have come across as terse. I understand that even though we don't agree on this issue, you were trying to help me and I'm grateful for that - I'm sorry I didn't say so in my original message. I hope I haven't upset you.

 

[ukxmrv]

I started with a neti pot and then when that appeared to help I bought the Grossan Irrigator (as per Sushi's post) which is great at clearing infections. Had a CAT scan before and then after the irrigator and the sinus surgery I was due to have could be canceled.

Whne I don't get the irrigator I still get sinus infections and also heavy colds usually end in a sinus infections. If I've got a head cold I can't irrigate my sinus area as it makes the cold worse.

My ENT NHS doctor was so impressed he now gives out a leaflet on netipots and other ways of cleaning the sinus area (but he doesn't include the Grossan).