Still Struggling With Virus

[Maxine]

This is so weird, sometimes when I cough and mucus comes up it tastes like chlorine------you know that taste that you get when you leave a glass of water sit for a while. It's bizarre. Sorry to be so gross, but my sister in law who is also sick with the same virus has the same thing,

Tonight was the benefit I talked about in chit-chat section----------------everything went great, but still struggling with upper respiratory issues. Last night I choked severely when eating natural fruit snaCks that are really good-------- they are very fruity. Anyway, sometimes my swallowing mechanism works before it's supposed to, and I choked on the saliva because the fruit snacks were so full of flavor my saliva was going crazy-----------(ok, stop laughing). I eat those things so I get saliva, that's the main reason-----but they are really good, and low in calories. I have horrible dry mouth, and it's even dry just after sipping water. I drink a lot of water daily---A LOT, but still have the dry mouth issues.

Anyway I choked so bad it made my ribs, neck, and spine hurt. My dad stopped over for a while, and he was looking at me, and didn't know what to do. I kept putting my hand out trying to let him and my husband know I was OK. I've done this before on the same fruit chews. I have to be careful, because I'll get instant saliva with those things. They are kind of tart, but not too tart. They are made by jelly belly, but have the kirkland name on the box, and sold at costco. I have problems choking all the time, and I'm told this can happen from the cervical/cranial instability, and the intermittent pressure on my brain stem depending on the position of this part of my neck. I was also told at my last appt. with orthopedic doc that my right vertebral artery is bulging, making up for the missing left one. The instability causes this to get kinked also----------hypermobility from the EDS.

Tonight there was smoking at the bar that we held the benefit. In Ohio there is a law that prohibits smoking in any bar, restaurant, public bldg. ect. But the smoking continues in the bar----especially the smaller ones. They had the doors opened, but it was getting chilly. It was so great---------so many bands played in my brother's honor, and everyone loved the t-shirts, food, and seeing old friends. However, the smoke, and going outside in the chilly air wreaked havoc on my lungs.

Anyway, I thought this was odd for my mucus to have this odd taste. ARDS scare the you know what out of me, and ever since a good friend of the family----(actually my second cousin) had this, and she almost died. She has permanant lung damage, and they have no idea how she contracted it. she had it last year, and everyone in the family, friends, co-worker-------EVERYONE, was praying for her. She made it, but her brother came three times from New Jersey to visit her in the hospital, and many times they told him it didn't look good. She was in the hospital two months, and had several months of therapy. She;s a petite little thing, but all the meds had her blown up three times her size. She was on mech. ventilation, and in a special bed that did some kind of body positioning. Most people didn't even recognize her when they came to visit----it was pretty horrible. Anyway, this scares me. She went to her doc one day saying she had trouble breathing, and the next thing you know, she is in ICU.

I'm telling you, this virus is the worst thing I ever had other then the one time in 1993 when I got sick. However, I don't recall much of a respiratory issue back then----just reaaly sick with body aches, a bad headache and fever. I had all that this time, but it started with a cough, and I have respiratory issues. I thought I was getting over it, but I still have congestion, but everything else got better, and I haven't had a fever for over a week. My BP is also very, very low----80s over something SITTING, and it won't register when I stand. I'm dragging really bad, but as long as my heart isn't pounding or tachy I'm semi-functional. I might have to see the doc. He ordered an antibiotic, but I didn't take it because I started getting better, and figure it's a virus, so I waited to see if it will run it's course. It seems to be, but very slow going. I'm watching for a fever, and will start the antibiotics if I start to feel worse.

Anyway, this is getting horribly long, and it's late.

Have any of you had this odd virus with the weird tasting mucus---------(sorry once again for the gross nature of this--- ).

Maxine :0)

[Ernie]

Hi Maxine,

I never had that kind of virus.

Is your problem with swallowing caused by your EDS or is it something else causing it?

[babettess]

Hi Maxine,

I too have difficulties swallowing. I have to take tiny sips whenever I drink liquids and I frequently choke on my spit. I have to concentrate on each swallow to help prevent choking. Currently I also have a cough that is producing a foul tasting phlegm. I haven't seen a dr. about the cough as of yet. I actually think a have a touch of bronchitis cause I feel the same as I always do when I get it.

I find it very interesting that Ernie asked if the swallowing difficulty is caused by your EDS. I am in the proccess of getting an appt. with a rheumy to rule out EDS. I have seen neurology and ENT and neither of them can figure out why I have trouble swallowing. So I will definately check it out with the rheumy.

Best wishes that you will feel better soon. You are not alone.

Babette

[Maxine]

Hi----thanks girls---

Ernie, I don't really know what causes my swallowing problems, but it's been thought by a couple of my doctors that it's related to the cervical/cranial instability, and intermittant brain stem pressure. However, the EDS caused the whole mess, so the EDS could be the beginning.

I'm so tired of docs that I don't know if I even want to bring this up----especially to local docs. I know Dr. Grubb is understanding, and for me he is local, but he has enough on his plate--------AND it's not really his area. I need a good local neurologist, and there isn't one who has taken any of this seriously yet. I definately have had some major pain way up in my upper neck, and sharp shooting pains is my head on the right side. Ahhhh, forget it---------the docs here aren't getting it.

Some day I'll find a good local neurologist.

Until then my EDS doc, and my orthopedic surgeon are trying to help. However, the orthopedic surgeon can't help with that vertebral artery unless the only problem is from the instability. I think the EDS makes that artery more prone to problems-----but that's just a hunch. The orthopedic surgeon thinks it's more from being kinked when I turn my neck too far. I suppose EDS can't help on top of the artery being kinked.

Maxine :0)

[Ernie]

Hi Maxine,

I was wondering if your swallowing problem could be caused by a lack of K+ if it's not the consequence of EDS as some fellows with low K+ also have swallowing problems. Maybe you could have your K+ checked when you are in a swallowing crisis.

[babettess]

Ernie,

Are you saying that a lack of potassium can cause swallowing difficulties? My potassium is usually low and I have swallowing difficulties. How does the deficiency cause the difficulties?

[Ernie]

Hi,

Yes, K+ deficiency can cause swallowing problems. K+ makes the muscles contract and if you don't have any or have too much you will have contraction problems.

[ajw4790]

Maxine,

Sorry, I have no words of wisdom, but wanted to pop in and say that I hope that you start to feel better soon! I could not stand having that kind of a virus for so long on top of POTS etc. I would be thoroughly worn out! Have you seen any neuros. at Cleveland Clinic yet? I don't remember...

Feel better soon!

[jjb]

Hi there. I get the chlorine taste every now and again. I don't know what it is. I get it in my mucous as well as my tears.... As you can imagine, the tears burn like heck when I get this.

About the swallowing, yes, could be EDS related ... as you said maybe the instability, but also if you have low tone. Of course low tone is also common w/ EDS. But the other though would be chiari malformation. This too is common with EDS. The only accurate way to dx chiari in an EDS person is a fMRI. A reg MRI often times won't pic it up.

I have an article on this topic of you are interested.