Sinus Problems

[Cort]

I wonder about my sinus problems and ME/CFS. I don't have bad sinus problems. I don't have a lot of drip but it seems like from my nose upwards my head is clogged up and I wonder if a lot of my head pain - which is a significant problem - could be derived from them.

One of the recovery stories features someone who recovered from ME/CFS by getting rid of her sinus problems. I've heard of others who have.

http://www.cortjohnson.org/forums/threads/sinus-surgery-does-the-trick.39/

That seems like a pipe dream but still I've had upper head congestion since I got ME/CFS. I imagine this is another case of central nervous system sensitization but I think it's worth a try to clear it up.....Any ideas?

 

[Who Me?]

@Strike me lucky has been dealing with sinus stuff for years

Ther is something called Marcons too. @Remy knows about that.

 

[Cort]

Thanks I'll check it out. My neck and head is just like floating disaster area. The other day my left shoulder to neck muscle spasm kicked in. Today it's a stiff neck and pain above my nose and forehead...Sometimes it's so sensitive that talking is painful. It's easily the single most painful part of my body.

 

[Who Me?]

I have a lot of neck, head and jaw problems if my neck is bent in the wrong way.

 

[tandrsc]

Any ideas?

Xylitol might be worth a try.

I used to wake up in the middle of night gasping for air because my throat was blocked with phlegm. I would then have to sit up and wait for it to drain away.

Since adding 1/4 tsp xylitol to my drinks during the day it doesn't happen anymore. After an internet search it turns out that xylitol is effective against some sinus infections.

 

[IrisRV]

Dairy is often a culprit in sinus and ear congestion. I don't know why it comes on with ME/CFS, but my specialist suggested it might have something to do with immune dysfunction/increased allergic responses -- we become more sensitive to it than we used to be.

While dairy is not likely to be a large part of the congestion problems in most PWME, it's a fairly easy 'fix' so dairy-free is worth trying briefly to see if it helps.

I'm one it did make a big difference for. I fought it for years because I do like my dairy, but if I want to live without congestion I have to stay (mostly) dairy-free. I live with the hope that if my immune problems ever get better, I might be able to go back to cheese and yogurt. For now, milk proteins are out for me.

 

[Empty]

Vicks.

 

[IrisRV]

Vicks.

That's a potent vasodilator -- not a good idea for people with low blood volume or low blood pressure. It could literally knock you flat within minutes. If you've put it on yourself, you wouldn't be able to recover from the crisis either because you'd be continually exposed.

It probably works great for people without those issues.

 

[Rosie26]

That seems like a pipe dream but still I've had upper head congestion since I got ME/CFS. I imagine this is another case of central nervous system sensitization but I think it's worth a try to clear it up.....Any ideas

Me too. When I overdo it my sinuses are the one of the first to let me know. So it must be connected to the CNS sensitization which triggers PEM. I used to get a lot of heat in my head and I found cold flannels on my forehead for 3-4 hours in the afternoon through to evening helped relieve some of the congestion pressure and made my head more comfortable for sleeping. Also, remembering to keep the fluids up.

I would have the sore neck with this as well. But I found easing the sinus/heat pressure helped with this.

 

[Empty]

That's a potent vasodilator -- not a good idea for people with low blood volume or low blood pressure. It could literally knock you flat within minutes. If you've put it on yourself, you wouldn't be able to recover from the crisis either because you'd be continually exposed.

It probably works great for people without those issues.

Had severe low blood volume and low blood pressure - Vicks did me good.

 

[Strike me lucky]

@Strike me lucky has been dealing with sinus stuff for years

Ther is something called Marcons too. @Remy knows about that.

I struggled for awhile with sinusitis but has been good the last 2 months and it seems my home made spray of saline 30mls? mixed into it a 2gram tube of bactroban cream, well shaken , 3 to 4 times a day in combo with oral abx augmentin course and then a course of bactrim.

Oral abx helped but returned whenever i stopped so the addition of the abx spray helped.

 

[Veet]

@Strike me lucky Are you making the saline at home? What are the proportions? thx.

 

[madie]

My 2 cents is that it's worth going off dairy completely for a month with any kind of ENT congestion or swelling issue. Because it's not a medical intervention, you don't need a doctor, and it only takes a month. As soon as do the heavy dairy test day, you'll know if it's a piece of your puzzle or not.

 

[IrisRV]

Had severe low blood volume and low blood pressure - Vicks did me good.

Just goes to show there are a lot of variations in this illness. A strong vasodilator technically should be problematic with severe low blood volume and low blood pressure. Simply put, dilating blood vessels when your blood volume is already low would reduce the amount of blood to the brain. However, nothing is simple. You could have a number of compensating situations happening. If we were all identical, medical treatment would be simple.

I will make my statement clearer -- a strong vasodilator can be bad for people with low blood volume or low blood pressure. It's worth being very cautious if you want to try it. Be aware that it might give you severe OI symptoms, including syncope, and plan your first experiments with vasodilators accordingly.

 

[Strike me lucky]

@Strike me lucky Are you making the saline at home? What are the proportions? thx.

No i obtain saline. Easy to get at chemist etc

 

[Remy]

Xylitol might be worth a try.

I was just about to recommend Xlear to @Cort...great minds!

Funny about Vicks...when I first got sick, Tiger Balm was literally the only thing that made my migraines go away. Exactly the opposite of what should have worked...I agree with @IrisRV in theory but the opposite was true for me and I have both low pressure and presumed low volume problems.

 

[TigerLilea]

I wonder about my sinus problems and ME/CFS.

My CFS/ME started at the same time as my sinus issues. I, too, have always wondered if there is a connection between the two. Most of my infections are viral, but the last two have been bacterial requiring antibiotics. I also wonder at times if the penicillin I was put on for the first infection somehow caused the CFS in the first place??

 

[Rosie26]

My 2 cents is that it's worth going off dairy completely for a month with any kind of ENT congestion or swelling issue. Because it's not a medical intervention, you don't need a doctor, and it only takes a month. As soon as do the heavy dairy test day, you'll know if it's a piece of your puzzle or not.

I've always been a big milk drinker. I've never liked the thought going off dairy because I've always felt I needed it. But it would be interesting to know if it makes a difference to symptoms.

 

[Veet]

My 2 cents is that it's worth going off dairy completely for a month with any kind of ENT congestion or swelling issue.

!!!!!

 

[Cort]

I was just about to recommend Xlear to @Cort...great minds!

Funny about Vicks...when I first got sick, Tiger Balm was literally the only thing that made my migraines go away. Exactly the opposite of what should have worked...I agree with @IrisRV in theory but the opposite was true for me and I have both low pressure and presumed low volume problems.

Thanks! Here's Teitelbaum.

He recommends nasal irrigation, Diflucan, sinusitis nose spray and focuses on yeast causing it.