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Old 04-03-2017, 08:30 AM #1
Healthgirl Healthgirl is offline
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Default medicine expert needed- neuropathy and asthma

As everyone here knows, I'm pretty much left on my own with managing my condition.
Along with my full body neuropathy came asthma. It occurs almost religiously in the mornings about 1/2 after I get up and try to start moving, or when I am in humid warm or cold air, or try to exercise. To deal with this I have ventolyn and pulmicort. The propellant in symbicort gives me a hard time, so that is why I take these pumps separately.

My symptoms might be a combination of vasomotor neurological problems. Seems like its coming from my nervous system vs a regular asthma thing. I'm pretty sure of it. Also, due to my autonomic problems, I have gastro issues and wonder if it is some kind of a silent reflux. Everything seems to go haywire, and there are so many issues. I try to get my kids ready for school and my breathing is so winded like I ran a mile when I'm trying to pack lunch. IT is ridiculous.
The ventolyn helps to open me up and let me cough up plegm, but then it worsens the rhinitis for a while. I don't know if the pulmicort is even doing anything but at this point, with this problem every day now, I've accepted that it is some kind of strange asthma so I do two puffs of it. It definitely doesn't make me worse, and i have no side effects from the low dose.

So I'm looking for any advice or opinions.

Also, I'm supposing that the ventolyn works as a vasoconstrictor to work as a bronchodilator. I realize that my dysautonomia leads to terrible vasodilation all over my body which causes blood pooling, weakness, dizziness, etc.... so thats probably why I can't breath correctly. I wonder.... if a vasoconstrictor by mouth might actually solve so many problems all around for me. Isn't that at least interesting? I am researching and there are tons of vasoconstrictors. I tired midodrine and it wasn't helping, but there are other options. Who would I even talk to about it? Cardiology? Allergist? Seems like one little pill could do everything I need to get through the day. Help breathing, help raise bp, tighten veins, shrink swollen vessels. What do y'all think?
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Old 04-03-2017, 09:47 AM #2
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Lightbulb

First off.... Is this only in the morning? Any attacks during the day? If only in the morning, I'd get an allergy pillow cover... they work really well. I bought ours at WalMart... $10.00 for the deluxe ones.

There are several drugs (some OTC) that are adrenergic in that they are vasoconstrictors.

1) Sudafed (OTC).. real Sudafed you have to sign for.
On the shelf sudafed is phenylephrine and a close second.

2) RX...Albuterol comes in a tablet form. This may be a bit stronger than Sudafed. need an RX from a doctor.

3) if you have post nasal drip issues, which are worse at night, then using guaifenesin tablets or liquid during the day. Walgreen's has a generic tablet that is convenient, and there is always Robitussin (the plain original one). This helps move mucus all thru the respiratory system, and may help if you dry out during the night. (mucus thickens then) Make sure you drink alot of water to help this. I have an container of ice water at night on the bedside table and sip it if I wake up dry during the night. You don't need much of this at a time to hydrate your throat.

4) Afrin nasal(original) is also decongestant. Some may be absorbed and get into the blood stream.

5) herbal ephedra -- you have to be careful with this and not go overboard. Best to take your blood pressure if you try this. Monitor before and 1 hr after taking.

If you suspect silent reflux, you could try AlkaSeltzer Gold (this is not the one with aspirin). I find one tablet of this late at night
helpful as it blocks acidosis and keeps my feet from burning, too. They come in foil packets of two so I only use one and save the other for the next night. This neutralizes the excess acid from dinner in the stomach and is milder than drugs, but works well for me.
You have to get this specific AlkaSeltzer online. I get mine from Amazon. I have come to believe that many PN symptoms may be due to a mild acidosis .. at least mine are. I started the Gold when my knee went out recently. It was a quick turnaround from agony to its current mild stiffness. Use as little as possible of this so as not to mess up your acid/base system. The AlkaSeltzer gold is used by some doctors to break allergic reactions, that they elicit in the treatment room, mostly for children. After they give an elimination diet, they may provoke the patient in the office where they can see reactions first hand. They used to use a product called K-salts but AlkaSeltzer Gold is a close second formula.

You can discuss with your doctor a trial of prednisone, this time, a low dose daily like 5mg or 2.5 mg or every other day.
These low doses do work for some patients, and since higher doses don't agree with you, these lower ones might just work enough to allow you some comfort times.
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These forums are for mutual support and information sharing only. The forums are not a substitute for medical advice, diagnosis or treatment provided by a qualified health care provider. Always consult your doctor before trying anything you read here.
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"Thanks for this!" says:
Healthgirl (04-04-2017), janieg (04-06-2017), tnthomas (04-04-2017)
Old 04-04-2017, 08:10 AM #3
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Quote:
Originally Posted by mrsD View Post
First off.... Is this only in the morning? Any attacks during the day? If only in the morning, I'd get an allergy pillow cover... they work really well. I bought ours at WalMart... $10.00 for the deluxe ones.

There are several drugs (some OTC) that are adrenergic in that they are vasoconstrictors.

1) Sudafed (OTC).. real Sudafed you have to sign for.
On the shelf sudafed is phenylephrine and a close second.

2) RX...Albuterol comes in a tablet form. This may be a bit stronger than Sudafed. need an RX from a doctor.

3) if you have post nasal drip issues, which are worse at night, then using guaifenesin tablets or liquid during the day. Walgreen's has a generic tablet that is convenient, and there is always Robitussin (the plain original one). This helps move mucus all thru the respiratory system, and may help if you dry out during the night. (mucus thickens then) Make sure you drink alot of water to help this. I have an container of ice water at night on the bedside table and sip it if I wake up dry during the night. You don't need much of this at a time to hydrate your throat.

4) Afrin nasal(original) is also decongestant. Some may be absorbed and get into the blood stream.

5) herbal ephedra -- you have to be careful with this and not go overboard. Best to take your blood pressure if you try this. Monitor before and 1 hr after taking.

If you suspect silent reflux, you could try AlkaSeltzer Gold (this is not the one with aspirin). I find one tablet of this late at night
helpful as it blocks acidosis and keeps my feet from burning, too. They come in foil packets of two so I only use one and save the other for the next night. This neutralizes the excess acid from dinner in the stomach and is milder than drugs, but works well for me.
You have to get this specific AlkaSeltzer online. I get mine from Amazon. I have come to believe that many PN symptoms may be due to a mild acidosis .. at least mine are. I started the Gold when my knee went out recently. It was a quick turnaround from agony to its current mild stiffness. Use as little as possible of this so as not to mess up your acid/base system. The AlkaSeltzer gold is used by some doctors to break allergic reactions, that they elicit in the treatment room, mostly for children. After they give an elimination diet, they may provoke the patient in the office where they can see reactions first hand. They used to use a product called K-salts but AlkaSeltzer Gold is a close second formula.

You can discuss with your doctor a trial of prednisone, this time, a low dose daily like 5mg or 2.5 mg or every other day.
These low doses do work for some patients, and since higher doses don't agree with you, these lower ones might just work enough to allow you some comfort times.
Thanks so much Mrs. D
I do have the allergy pillow cover and very fabulous air purifiers in my house, hardwood floors, etc. I think I'm controlling what I can from that end pretty well.

The difficulty breathing can happen at random times when there is an air temp or moisture change drastically, but its almost religiously in the mornings about an hour after I get up that all the allergy type stuff happens. I believe that it is a combination of vasomotor, and mild allergies, but I think I might have mast cell involvement between the EDS and the autoimmune stuff. I also have anti smooth muscle antibodies which correlate with all of the issues of respiratory and gastrointestinal tract, so it's a combination of so many things and I'm looking for a way to treat it with minimal intervention.

1. I have both meds at home. The sudafed tends to make me tachy, so I usually only use that a few times a year if I feel the threat of a sinus infection. The phenalephrine I use if I have terrible allergies or a cold, but just for 2-3 days tops. I am going to ask my docs who have a pretty good understanding of dysautonomia what they think about taking a tiny dose daily- but I want to make sure it isn't a bad idea.

2. I didn't know albuterol came in a tablet. That is an interesting possible option and I will study up on what else that particular med does to see if I think it would be beneficial to my overall issue of vasodilation.

3. I definitely always have a glass of water at my bedside along with a giant zipper bag of all my remedies. For some reason guafenesin doesn't ever seem to do anything at all for me. I've tried it several times with no luck.

4. Afrin- I've never tried it because I heard it was one of those things you can get addicted to and your sinuses get so used to it that you feel terrible if you stop. The ENT said not to use it for more that 2-3 days, but I am betting it would make me feel amazing. I started putting a little vision in with my allergy eye drops and it is extremely helpful for that sore swollen eye feeling. It helps my contacts slip right on. I'm assuming the its because even my darn eyes are suffering from vasodilation. So this just adds to my theory that if I could find one little pill, maybe I could get the benefit everywhere instead of my current routine as of a few weeks ago.. pulmicort, ventolyn, alaway drops, and flonase.

5. herbal ephedra. I think I'm too much of a wimp to try it because I'd be so unsure of what dose to take for the first time. I am beginning to be willing to try some other herbs for this neuropathy though maybe

6. Alkaseltzer gold is in my zipper bag at my nightstand. I find it very interesting that it helps a bit with your neuropathy as well. I probably use it 3 times a week. It seems to calm what ever fires my enteric system up and helps calm my symptoms down a bit. Do you know why it does that? My theory is it has to do with mast cells in the gut lining and their communication with nerves. Zantac also has a very similar effect and it turns out that its an h2 blocker.

7. As far as a prednisone oral form, I don't think I will ever be able to tolerate it on my stomach. The burning after just two days even on the lowest dose is a nightmare and it makes me shake like crazy. I feel that the steroids I get from the pulmicort and flonase are probably the only way I can handle them besides maybe in IV form.

8. What is you opinion on northera? It's method of operations seems to be a little different that midodrine, and also different that ephedrine I think, but it has the same purpose. I wonder if that is another option.

9. I also wonder about a small dose of nicotine
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Old 04-04-2017, 10:15 AM #4
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Lightbulb

The histamine reaction involves a acidic component. That is why the AlkaSeltzer Gold works well.

Also the pain receptors use an acidic component and that is why some people notice an improvement in pain. If you read the reviews on Amazon, you'll see the Lyme community uses the Gold for Lyme pain (neuropathy).

I've used AlkaSeltzer original for many many years. When my left knee (my good knee) had that terrible sudden swollen, red painful attack just before Xmas, I was using the Original too much I thought, but it was working really well. I think I was having a gout attack since I have elevated uric acid shown by my blood tests. Searching for a non RX solution I ran across the bicarbonate suggestion, so hence the Gold.

I read about the connection between pain and acidic receptors years ago... so here is one link you can read and you can pursue this further if you want online:
People of the Acid: Acidosis and Pain - Pain Online
The bicarb intervention is temporary...but it does work. That is why I have posted about AlkaSeltzer original here so often.

Histamine....
Freshness Counts: Histamine Intolerance - Diagnosisiet
Looking at the list of high histamine foods, and seeing that massive sauerkraut explains my severe intolerance to this fermented cabbage! I still joke that sauerkraut could KILL me someday, so I avoid it strenuously! LOL

This is why I have a thread on our subforum about histamine reactions and food. My adult son and I both had a reaction on vacation at a family restaurant about 5 yrs ago, which we decided was from "old" frozen perch that was its specialty and delicious but sadly was providing the histamine to make us burn like crazy an hour later! I assumed my burning was my PN then, but my son does not have PN and he was pulling of his shoes and socks frantically. So I had AlkaSeltzer fortunately with us, and that did the trick.

Taking the bicarb (AlkaSeltzer) I believe "blows the acid off" receptors quickly as it is effervescent and absorbed really quickly. We studied AlkaSeltzer in college...it is unique in its speedy absorption. But alas, it is only a temporary solution, but it does work. It works enough to let you get to sleep, or do things during the day, until it wears off.
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************************************
Weezie looking at petunias 8.25.2017


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These forums are for mutual support and information sharing only. The forums are not a substitute for medical advice, diagnosis or treatment provided by a qualified health care provider. Always consult your doctor before trying anything you read here.
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