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Reactive Skin, Reactive Bladder, Reactive Nervous System


futurehope
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Just yesterday, my dermatologist was suspecting I have Roseacea, which basically is the skin's reaction to whatever it wants to react to. It shows reddening on the cheeks, and stuff that looks like acne pimples. Normally, people do not react to these things.

I'm noticing that since POTS, my nervous system overreacts to anything, be it sight, sound, changes. My tolerance to change has decreased. My bladder lining overreacts to different foods, making it susceptible to feeling inflammed. This is called interstitial cystitis. My esophagus and stomach lining overreact to different foods, making them susceptible to feeling inflammed. It's called GERD.

My intestines, overreact to every day life. I could write a book about my escapades with my stomach and intestines.

In short, I display a marked inability to tolerate many "normal" everyday occurrences. There must be a connection to all this, like Lyme's Disease (which I do not think I have because I have never had pain issues), or mast cell activation disorder, or lupus, or ?????

Can anyone else shed some light on this overreactivity? Thanks. Obviously, I'm missing something in understanding all this. I will bring this up with my neuro in a few weeks.

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I first had to pee all.the.time. before I was diagnosed with POTS. Even had to get an ultrasound of my bladder (no kids, young, doctor was baffled as everything looked fine).

I'm Irish enough I expect Rosacea (I turn pink/hive up on occasion) but since POTS it happens a lot more. And the hives are fairly random. Can't be pinpointed to one food or anything.

Now my ANA is coming back really high. I have to have MORE autoimmune blood tests next week.

So far, though, my ANA is looking like Lupus. ;) I hope not...but symptoms + ANA tests are matching up.

Now...does Lupus CAUSE POTS? I would love to know. My PCP even would like to know what is causing what, too.

I also have positive reactions to gluten (Celiac Disease). I've fallen off the wagon again (sigh) but try to avoid it. It's not super high, but enough I shouldn't eat any gluten and I'm really trying to get better at that. For some reason it's the hardest thing for me!

Edited: Please let us know what your neuro says. I don't have a neuro out here...I see a rheum now. Would love to know what a neuro thinks of all this over activity.

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Every single one of those symptoms (identical to mine!) can be caused by over-reactive mast cells. Check out tmsforacure.org to learn more.

Julie

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Mack's Mom,

Did you see Dr. Castells to be diagnosed? How can I contact him? Have you ever had full-blown anaphylaxis? TIA

Ye, I saw Dr. Marianna Castells at Brigham & Women's Hospital in Boston. Google her for contact info.

I don't know if my anaphylaxis was ever full-blown i.e. at the time I wasn't aware that my throat was closing (although it does swell at other times :D ) My HR was so fast & I was about to pass out. It felt a lot worse than my plain tachy. I heard buzzing in my ears, etc. I KNEW I was going to die. I plunged in my epi-pen & symptoms INSTANTLY stopped. It's happened that bad about 3 times. BTW, an epi-pen for plain tachycardia (not caused by anaphylaxis) is extremely dangerous as it causes your heart to go even faster. It was a frightening decision to have to make in an instant.

I can avert anaphylaxis now with daily meds & emergency ones as needed.

Best of luck. Please let me know if I can help in any way.

Julie

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I see her this week to find out how my test went. Too bad I started my mad itching after my pee collection. I'm ready to rip the skin off my back. They said to be prepared to wait several hours as I'm a squeeze in. That's how good she is.

bellamia~

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Hey, peeps, thanks for the answers. I doubt that I have ever been anywhere near having anaphylaxis or generalized itching, so if my symptoms are due to badly behaving mast cells, then I have a "different variety" of mast cell disorder. It's possible all my inflamed areas are due to badly behaving mast cells, but that the malfunction is not understood. I would hate to waste Dr. Castells time because I'm "fishing" for a problem.

But, I am very interested, Bella Mia, in how your visit turns out.

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She is wonderful!!!!

No matter what we find out we will be able to make plans for how to handle catscans and mris with dye. I also need another eppi pen as orders by my new nurse today. I keep getting more and more home services. I must be getting sicker and I don't know it. lol

I fill you all in when I come back at the end of the week. If anyone needs to come and see her I live about 40 mins away and you could come and stay with me. Gotta go to a birthday party.

xxx's

bellamia

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Futurehope-

I wasn't always as bad as I am now. I'm sure I had years where I was mildly reactive. I understand your hesitation in seeing Dr. Castells when your symptoms are mild.

Why not try an empirical trial of H-1's and H-2's. That's what my son's doc at Hopkins is doing for him. These meds are VERY benign and OTC. They will either help your symptoms are not. Try a zyrtec or claritin in the AM, with a zantac/ranitidine. If you fell better- great! You have an idea what's behind your symptoms & how to control them.

Since my son began, his facial flushing, night sweats, and overall stamina has improved.

Just a thought-

Julie

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Mack's Mom,

FYI

I am on Nexium before dinner (it works best for me then)

Ranitidine 150 mg before bed (it works best for me then)

(Tried Singulair for a while, but contributed towards insomnia, so I stopped taking it.)

Hydroyzine HCL 50 mg before bed

Plus, I take 100mg of CoQ10/day.

So, all in all, I'm on several of the meds you are thinking of already.

And.......I am able to take allergy desensitization injections, every two weeks.

(And I use an antihistamine nasal spray daily, and a steroid spray as needed.)

So, what could Dr. Castells do for me that I haven't thought of already?

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Hey Future Hope-

You ARE already on a MCAD regimen :-) Only you can make the decision whether or not to see Dr. Castell's. If Mast cell stuff gets worse- hives, tight throat, chest, anaphylaxis....I would guess that it would be time to pursue this further.

The only other thing, I can think of that she might recommend is a daytime, H-1, like zyrtec or claritin and a mast cell stabilizer, like gastrocrom.

Seems to me like you've got this side of things covered for now...

Have the H-1's and H-2's helped? BTW, my son also takes nexium AND ranitidine later in the day (helps breaK through acid.)

All the best-

Julie

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Mack's Mom,

I am on my above mentioned meds because they are all doing something useful. How do I know that? Because if I try to stop any of them, my body will tell me somehow, whether it be my bladder acting up, or my esophagus hurting.

It took years to get to this regimen, but I plan on staying on it. If my allergies (or mast cells), are really acting up, I am allowed to take more antihistamines, as you said, during the day, though I only need to do that on rare occasions.

My desire has always been to stabilize myself and to prevent more serious problems from arising. So far, so good.

I currently have been working on fixing and maintaining my "varicose vein" problem in my legs, as I believe that has contributed to my orthostatic intolerance issues by allowing more pooling in the legs, and less venous return to the heart.

This varicose vein problem is an ongoing lifelong issue. Once they are "fixed" via surgery and injections, they are rechecked every year via a venous doppler to see if anymore veins have begun refluxing.

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Mack's Mom,

I am on my above mentioned meds because they are all doing something useful. How do I know that? Because if I try to stop any of them, my body will tell me somehow, whether it be my bladder acting up, or my esophagus hurting.

It took years to get to this regimen, but I plan on staying on it. If my allergies (or mast cells), are really acting up, I am allowed to take more antihistamines, as you said, during the day, though I only need to do that on rare occasions.

My desire has always been to stabilize myself and to prevent more serious problems from arising. So far, so good.

I currently have been working on fixing and maintaining my "varicose vein" problem in my legs, as I believe that has contributed to my orthostatic intolerance issues by allowing more pooling in the legs, and less venous return to the heart.

This varicose vein problem is an ongoing lifelong issue. Once they are "fixed" via surgery and injections, they are rechecked every year via a venous doppler to see if anymore veins have begun refluxing.

FutureHope-

I stumbled upon my MCAD regimen the exact same way. My docs added each new drug as I needed it to treat new symptoms. Like you, I became VERY sick if I stopped taking any of my meds. That oddity, combined with the anaphylaxis, scared me enough to seek a real DX.

Best of luck with the veins. I have major spider veins (not as bad) and am considering zapping them with a laser. Not real treatment, just cosmetic. I suspect, with my connective tissue disease, I'll just get more :unsure:

All the best-

Julie

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