To Eat Or Not To Eat.

[Tachy Phlegming]

For myriad and different reasons, I have stopped or limited eating periodically with this disease. One of the problems is clogged sinuses. My heart rate has gone up, my nose has clogged more, and I've gotten worse agitation from eating in this condition.

Now I take the following to resolve this problem:

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

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

Do you need to breathe through your nose to eat? Do you need a certain amount of oxygen to eat?

Is the problem in my nose really also a problem with blood vessels in my GI tract that these drugs also treat even though what I take mostly targets the nose?

Does my stuffed nose indicate a lack of proper vasoconstriction through my whole body and tell me I can get postprandial hypotension and do the drugs help my whole body (pseudoephedrine can cause [whole body] hypertension)?

I have asked similar questions of doctors and received inaccurate responses or adulation (from a slightly overweight doctor) for having genes which code for the long sought-after panacea for appetite suppression (anyone want gene therapy to get these genes? ). I can't find much online which helps me to understand this better.

So to those of you who actually do sit around and think about these issues, are up on the research, and perform similar experiments on your own bodies, thanks in advance for postulating a plausible mechanism for this problem.

[flop]

A few things come to mind - allergic rhinits and vasomotor rhinits. Rhinitis is the medical term for inflammation of the nose and upper airways. With rhinitis the mucus membranes lining the nose become swollen and inflammed, extra blood flows to the linings and they secrete more mucus than normal.

The most common form of allergic rhinitis is hayfever (allergy to grass pollens) but you can also have allergic rhinitis to many other things (house dust mite, cat, mould are other common allergens) and it can happen all year-round (perrenial rhinitis).

Vasomotor rhinitis is not caused by allergy but by the body reacting to environmental stimuli - the most common is moving from cold to warm environment leading to sneezing and running nose.

I have read somewhere that vasomotor rhinitis is known to be linked to autonomic dysfunction.

Does my stuffed nose indicate a lack of proper vasoconstriction through my whole body

I don't think that there is anyway that you could link rhinitis to the state of blood vessels elsewhere in your body. Many people have rhinitis without autonomic dysfunction, and many people with autonomic dysfunction don't have rhinitis.

Do you need to breathe through your nose to eat? Do you need a certain amount of oxygen to eat?

If your nose is stuffed up you can get breathless when eating. The secret is to take smaller mouthfulls and pause during chewing to breathe through your mouth (being careful not to inhale food and choke!).

Many people with POTS have allergies and it is agreed that treating allergies is important in POTS.

Some people notice that eating certain foods makes their rhinitis symptoms worse - milk / dairy are common culprits (not necessarily a dairy allergy but some unknown interplay).

TREATMENT - as you have already noticed taking decongestants such as oxymetalozine and psudoephedrine can reduce the inflammation and stuffiness in the nose.

Oxymetalozine should only ever be taken for a few days at once. This is because when used for more than a week, when you stop using it you get a "rebound" effect and the nasal inflammation and stuffiness actually gets worse.

Pseudoephedrine taken orally for some people with POTS causes big problems with tachycardia. Others find that they benefit from vasoconstriction and feel much better. If taking pseudoephedrine it is a good idea to monitor your HR and BP and discuss any big changes with your doctor.

Flop

[tinkerbella]

I would rather drink ensure lately than eat. Also if I go to a restraunt I itch so badly I rub the skin right off my nose. I'm already on Allegra 24/7 and will have to take two bennadryl and maybe by the time we leave I might be ok. Nothing really appeals to me anymore and I'm too tired to cook. My Pc worker makes me eat but I hate it. If I eat with people I'm the last one at the table as I eat slow. I hate the bloating of my tummy if I eat. Then I will wake in the night for salt or something sweet. I find crumbs in my bed. It's kind of a ritual with the dog and I.

bellamia~

[Tachy Phlegming]

Thanks for your input but most of what you wrote is too close to the common descriptions a doctor gives or what a webpage has; the descriptions do not address my specific problem and remedies don't help.

My nasal problems occur with my heart rate problems. It was very apparent at my worst. I could not stop my nose from running or my heart from beating faster in the heat. Whatever autonomic defect I have causes both to occur at the same time and the severity of both problems goes up at the same time. Eating aggravated both but seemed a little better when I could at least treat the nasal problem.

Also, easy remedies won't help. My heart rate and nasal problems are a lot worse after I eat with this problem. Throwing up so that I could breathe one to three hours after eating (the symptoms got worse after eating) would be a better idea than smaller bites. (I never did that -- I just didn't eat when I knew it would be too excruciating but tried to eat a lot when I could even when it hurt a fair amount and made it hard for me to breathe).

I lived for years without Oxymetazoline. I never got better. I was always in pain from eating without it. And I felt horrible all the time. When I started because I thought I had an unrelated cold, a lot of symptoms were helped significantly. But three days would not have been adequate and the one time I got off it for a fairly long (no rebound), I was still miserable without it.

I wouldn't have taken pseudoephedrine at my worst -- because I was very concerned about exactly what you wrote. But maybe I should have .... at the moment, I can't quite figure it out. At this point, I need to take it. (Monitoring my heart rate and having my doctor care? )

[Tachy Phlegming]

What you wrote in large part describes all my other problems with food BellaMia! I guess we haven't exactly figured those out either but there are a few threads which tried ...

Happily, I never got to Ensure...

[flop]

Tachy - I didn't mean to offend, I was just giving the info I have on usual causes of rhinitis (I have really bad rhinitis from allergies and also vasomotor rhinitis so I have loads of leaflets from ENT clinics). Your further posts certainly show that your problem is much worse that what most people get! The smaller mouthfuls bit was because I thought it was breathlessness making you unable to eat (I know I find it hard to eat when I can't breathe properly).

Oxymetalozine - I use this intermittently, in the UK the label says take for up to 7 days then have a break. I used to take it alternate weeks. Most of my rhinitis is caused by allergy and now that I am taking a massive dose of anti-histamines (six times the usual prescription dose of fexofenadine, prescribed by an immunologist) I don't need the oxymetalozine.

Nasal and GI links - hmmm, there is certainly something odd going on. Have you had workups from good GI and ENT doctors?

Another thought, have you tried nasal steroid sprays? They are usually for allergies but steroids generally reduce inflammation so they may help even if your problems aren't from allergy. You do have to use them all the time for about a month before you know if they help or not.

Yet another thought (I'm kind of thinking out loud here!) anti-histamine tablets - have they helped at all, again taking them daily for a while might be needed.

I suspect you have already tried all these things but if not they might be worth considering.

Hope you get some relief soon,

Flop

[flop]

Sorry - been googling again! I was reading up on alpha-adrenergic agonists and Wikipedia lists both Midodrine and Clonidine in that catergory (as well as oxymetalozine and pseudoephedrine). I noticed the clonidine and midodrine as they are both drugs used to treat POTS. Have you ever tried either of them? I wonder if you could get a 2-for-1 effect and improve both your problems with one med????

Flop

[lissy]

Tachy,

I understand the feeling your explaining and actually years ago I lost alot of weight, but I had the stuffy nose and felt like throat was tooo small...was like 80 something lbs. I ended up blending my food to really stay alive. Since then, it only happens when I'm having a surge.

Ok my thought is ( and I'm far from a expert)

Possibly the swallowing and breathing along with the possible ingredients in food is cause this this whole effect which in turn is causing HR increase from over stimulation to the sympathetic or para) nervous system, I still get this once in awhile especially with Hot temp food or spicy foods or ice cream. I have not had allergy testing or taken anything for this . I always eat lay down and before I get too fatigue I've noticed I get more symptomatic with bizarre feelings if I don't. And when it happens I breath through my mouth since my nose is to stuffy, And I also get up and take breaks while eating.

Keep eating Hope this helped in some way

Lissy

[firewatcher]

Tachy, do you still have your tonsils? I had recurrent tonsilitis and chronic severe sinusitis till I got mine out. At the end, my tonsils actually touched one another and it was hard for food to pass, when I laid down I had apnea. With vasomotor rhinitis, your sinus cavities could technically swell enough to push your soft palate down and make your throat smaller. When I get vasomotor symptoms, my nose just closes off completely and my ears close up. I have gotten into the habit of using a Neti Pot (saline nasal irrigation) daily and nasal steroids have done wonders! I have both allergic and vasomotor rhinitis. I'd blend and slurp anything at this point till you find what you can tolerate. Have you been tested for food allergies?

[juliegee]

Tachy-

Sorry, I've been there too. What if you are suffering from non-allergic rhinitis? That's what I have (in part). There is a huge link between that and autonomic dysfunction which could explain why both act up at the same time. Google that & treatment options.

At this point, I really think you also need to rule out a sinus infection. I spent much of my life with mild chronic ones & had symptoms much like you describe. Nasal steroid sprays should also be life changing. Has an ENT ever spoke to you about a deviated septum or septoplasty? I had that done about 10 years ago and haven't had a sinus infection since. All of that chronic drainage can now more easily pour out of my more functional nose

Food allergies should also be explored since eating makes things worse. Dose your also face redden and feel hot with eating? Mine did. I've since learned that MCAD (not food allergies) is behind my symptoms...not sure how that fits in with non-allergic rhinitis. But I do know that I am allergic to NOTHING, yet have the worst allergy symptoms of anyone I know- including anaphylaxis. Just wonder if either of these conditions could explain your symptoms.

To eat or not to eat? EAT any way you can. I like you & want you to stick around

Hugs-

Julie

[Tachy Phlegming]

OK Flop, that was the kind of information I was looking for. I will ask about trying those because of what you wrote.

I do control the problem now, so I'm not asking so much because I suffer worse than anyone from it (and I'm sure there are people out there with exactly this problem) but rather because I wanted to see if anyone could write something sophisticated about the reason. Some of those really technical explanations recently on other threads were so elaborate, I was hoping someone could write something creative (? ) for this ...

In the rest of this post, I'll respond to what people wrote separating them out as they apply to 3 different GI problems I have:

The Nasal/GI problem:

1. 'What if it's non-allergic rhinitis'?!! It's definitely not allergic. Moreover, nasal steroid sprays and nasal anti-histamine sprays do nothing (I wouldn't rule out those things helping with an autonomic problem but in addition to my problem's not being allergic, those things don't help). Thank you for wanting to keep me around.

Firewatcher, I can't use a Neti pot because water won't get through my nose to drain anything. And anti-histamine pills might help a little -- I haven't really timed it -- but if anything, it only can make me take the spray and pseudoephedrine at slightly longer intervals; also, the only antihistamines that might work would make me too tired to take them the way I take the spray anyway. I still have my tonsils but I can swallow easily even with this problem at its worst (I rarely have difficulty swallowing but also have had that problem occasionally since getting really sick).

If there's a sinus infection, no doctor has been able to find it. The problem has been there for years. I have to treat this problem before I eat anything; this problem has nothing to do with food allergies. As far as talking to doctors, the latest ENT doctor was the one who told me he wished he had this problem so he could lose weight. (I just said "No you don't" with a big smile.) He told me about the evils of oxymetazoline (evil or not, without oxymetazoline, I can't eat without pain and a higher heart rate and I therefore think it's the lesser of whatever evils are out there -- pain and a high heart rate are not good things). My GI doctors have been interested in biopsies and what they can see on tests.

The Breathing/GI problem:

2. I have GI problems that also get bad in the heat which are not connected to the stuffed nose. That feels like it's from the difficulty breathing in my chest which I have in the heat. This problem and the one in 3. feel like what Lissy described.

The Food/GI problem:

3. I also have GI problems from foods. But these are also not connected to "allergies." Even when I have problems with specific foods, I show absolutely nothing on food allergy tests. A couple of my food "problems" make my GI tract feel the way the heat makes it (my GI tract) feel. Whether this problem is MCAD I don't know for sure but I suspect that it may not be because some of the food problems feel like my heat-induced breathing GI problem (#2 above). I don't have flushing ...

[ramakentesh]

Maybe you should check out Mast cell disorders.

[firewatcher]

Tachy,

if you are not getting air through your nose, you certainly won't get water through! Have you had a head CT or X-Ray? It will show any thickening of your sinuses that could be an infection. My infections are silent: completely asymptomatic, no fever...nothing...but they are still there. It was a bit of a process for me to clear my head out, so to speak. I was not moving any air through my nose either and needed Dristan or Afrin to open up the passages. Once they were opened I would neti with hot, very salty water four times a day. The heat helped to clear the mucus and the salt shrank my nasal passages. This took at least a week of trying and getting nose dribbles. The nasal steroids will only work where they touch, so if you can't get it back far enough you won't open everything up. The trick is getting all the mazes and tunnels of the nose clear to begin with, then medicating and rinsing to keep them clear.

Can you taste anything at all? When I was clogged, I had no sense of taste at all!

Do you still have your tonsils?

[juliegee]

Wondered the same thing about a CT scan. Easy to say you don't have an infection, much more definitive with a CT scan- although it may feel like overkill. Some docs will do an empirical treatment of antibiotics to see if you feel better. I've had tons of sinus infections where I lost oodles of weight because I couldn't eat.

Treating a chronic sinus infection is an art. First you have to kill the bugs & drainage- THEN add the antihistamines (in cases of chronic non-allergic rhinitis.) I hear your worry about sudafed. My allergist uses D'allergan (a decongestant) that doesn't promote tachy for me.

Hope you're feeling better soon.

Julie

[tinkerbella]

I'm seeing Dr. Castells Friday to be checked out for Mast Cell. My appointment is finally here!!!! ; ) bellamia~

[erikainorlando]

Tachy -

I have posted before that I have vasomotor rhinitis...self diagnosed btw!! However, it was my only real tangible symptom before I realized that my hr was so high. Both came on at the same time after the virus that seemed to kick this all off.

I was tested for allergy after allergy...many months after my POTS diagnosis an great ENT finally said the blood vessels in my nose were probably affected from wild swings in hr or bp...

No sinus infection here...nothing like it..just autonomic dys,,now I have no words of wisdom just identification. After sitting my nose is usually better... Steriods did work but obviously not a long term solution.

Erika

[erik]

When I was scrounging for info related to the M3 muscarinic agonist, Evoxac as well as looking at Sjogren's in some detail, I came across a few things in that region. I think generally, secretions are muscarinic receptor induced (which are very slow nerve responses... since they must result in "production" of something rather than just instantaneous relay of a signal). They also tend to be "frequency" dependent (though it turns out other nerves have some of that too). Anyway, I vaguely recall that there is one thing that influences "flow" and a separate one that affects "viscosity"... and also sinus stuff is partly just tears (or one of the several components of tears... they're more complicated than one might think).

Is there a chance this is a bizarre neurological problem... like a kind of unusual neuropathy that happened at the same time as the POTS inducing problem (sometimes neuropathy induced)? Maybe even an auto-immune thing (like Sjogren's... which has no rule about starting with the eyes + saliva first, BTW). Has (or can) a neurologist test those nerves out somehow... or maybe speculate as to whether this is even a possibility? It seems more conspicuous than general sinus troubles (even though some sinus meds do help alleviate it a bit for you). Or are there some "antibodies" a rheumy (or whoever) might check?

Evoxac was hoped to help with my dryish eyes, but mostly just boosts saliva. Could something up higher, like Restasis end up loosening sinuses (assuming my memory about there being a tear/sinus connection is correct)? Sounds crazy but perhaps an angle to research if nothing else pans out. It just sounds like they're stuck on and stuck in "thick" mode (or maybe that's me

[Tachy Phlegming]

The only way I am able to understand it is the way Erika desribed it. It really started in earnest in the heat when I must have had those blood pressure swings. What works pretty well are these meds which are vasoconstrictors. Oral steroids work better and the effects last for months -- on the other hand, I still have to continue taking (less of) the sudafed and Afrin while on steroids. Evoxac would probably work but Prednisone will work just as well and probably somewhat similarly.

Restasis I imagine would probably/might do something -- my nicotine spray helps a little right away -- but the effect wears off within minutes.

They did a CT scan and found nothing; antibiotics do little.

Again, I'm not so concerned about continuing to take sudafed and oxymetazoline and I can feel ok but I am just a little curious about the mechanism (and also why I can't ever get it back to where it was before I got so sick -- that sort of sounds like a mast cell problem but I don't think I have a lot of other stuff associated with those disorders -- I should probably keep looking at it.)

Firewatcher, I've never been quite that dedicated. Maybe one week, I should do a lot of Neti pot trials. I do taste fine however ... (when I eat that is, nobody has taken a bite of me )