Susan
Guiding Light
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I Love YaBB 2!
Posts: 211
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Hi Josie
So much good info!
My GI issues have been so complicated. I have had gastroparesis (slow emptying) for years, but wasn't aware of any reflux or excessive acid. Just a dull heaviness with the food sitting without digesting.
The severe chest pain, tachycardia, and SOB was thought to be cardiac. So were the reactions after activity. I don't always get increased heart rate and pain with activity. Sometimes it comes on several hours after the activity. I have had all kinds of cardiac workups. I have a patent foramen ovale (hole in the septum between right and left ventricles) that shunts blood. The cardiologist has been pushing for a patch on the opening, but the patches contain nickel, and I am highly reactive. There are some bovine patches that dissolve being used in Europe, but nothing approved here. So we have been doing regular checks (echo every six months). This last one, since I started antihistamines, my tachycardia, SOB, and chest pain, were all much improved, and the leaking valves were better, so he felt I could go to yearly exams. The main problem is they want me on blood thinners, but so far I react to everything they have tried. The ongoing concern is stroke due to blood clots getting through the opening and back into circulation. So, heart is not perfect, but they are keeping an eye on the cardio issues.
I used to have severe diarrhea, but since starting opiods 5 years ago, constipation is more of an issue. When I started the antihistamines, my stools got extremely soft, but I still don't have much GI movement, so the stool is still not moving quickly through. I think this makes the swelling worse, because the stool sits in the bowel, and causes burning there. Not fun. So all of this will be on the table when I see the GI doc later this week. I want to talk to him about the dose of ranitidine too, to be sure I am not causing more trouble. I already have trouble getting nutrients, causing blockage of any more is not a good idea.
I have been using microcurrent to help with the swelling. It lowers inflammation and histamine, and seems to lower the swelling when I run it for long enough. But that is after the damage has already occurred, so would rather catch it further up the line.
When my swelling is worst, I do best curled up on my right side. Warmth seems to help, so I use a heating pad set on low to help with the spasms. Sometimes it is enough to let the cramping release. When the cramps are worst, it throws my whole spine out, and I get pain in my back, and sciatic pain too.
I'm just now looking at food triggers. Up until now, I have not been able to figure out what exactly causes the problem. I know that things like perfume will cause GI swelling, but I haven't been able to figure out foods. But I was in reaction almost all of the time. When I started Zantac, I found out how much of my pain was GI related. You know, when you are in pain for a very long time, you get kind of dulled to it, and it gets hard to tell what is making it worse. Now I am hoping I can start to distinguish triggers better.
What a good idea to get a urine collection bottle to keep on hand! I tried to get a tryptase on a bad day, but they drew the wrong vial, so I had to go in again. The second time, they forgot to draw for the tryptase, so I had to go back AGAIN! So this will just be a baseline tryptase, as was the 24 hour histamine and 5HIAA.
So, my current meds (allergist said Zyrtec is a good choice for me with the cardiac issues):
AM 25 mcg Levoxyl (thyroid) 10 mcg Cytomel (thyroid) 30 mg morphine sulfate ER 10 mg Zyrtec 300 mg Zantac 1 g Lovaza (omega 3 ethyl ester for blood thinner) This is the newest one I am trying.
Afternoon : 30 mg morphine sulfate ER Extra antihistamines as needed, Zyrtec, Zantac, or benedryl. Extra pain medication as needed.
PM 25 mcg Levoxyl 5 mcg Cytomel 10 mg Zyrtec 300 mg Zantac 30 mg morphine sulfate ER 100 mg Prometrium 4 x a week
Twice weekly 0.50 mcg Vivelle patch (estradiol) Atrovent inhaler as needed. Maxalt as needed for migraines 2-4 times a week - IM injection of B12, magnesium sulfate, and taurine.
I have skin rashes, swelling in the throat, reactivity to all kinds of chemicals, inhaled and contact, and a seemingly endless array of other weird symptoms in addition to the GI and chest/breathing symptoms.
The thing that pushed me over the edge, was heparin injections, followed by a very gentle physical therapy session. In the PT session, I was told that my esophagus was in spasm, which might be the cause of my knife like chest pain.
I have a history of extreme pain following any kind of physical manipulation, even very gentle massage. After this one, within an hour I developed severe pain all over the body, with a feeling like my nervous system was on fire, skin hurt to touch, and I felt like I had the flu. My belly swelled.
About three days into this, I had sudden increased shortness of breath, swelling of my throat with difficulty breathing, tachycardia, erratic blood pressure, extreme anxiety. I took some Zyrtec that I had on hand (this was before taking the antihistamines daily) and used my inhaler, then called my doctor. They sent me to urgent care. By the time I got to urgent care, I was breathing more easily, and the throat swelling was down, but I still had the shakes, chills, and was disoriented. They released me an hour later with an RX for an Epi pen, and orders to see my own doctor. That started this whole round of doctor's visits.
Looking up esophageal spasms brought me to mast cell disorders, and I found the most complete list of my symptoms I have found. So now I am looking into the possibilities, including seeing a new allergist who brought up mast cell issues himself.
All this, and it still doesn't touch all the issues. I also have chronic neurological infections. I have been treated for Lyme disease for 6 years, and still test positive. I recently tested positive for a newly discovered retrovirus, but treatment is still unknown. The infections are known for causing many symptoms, so they have to be considered when I make decisions. I am just taking things a day at a time, trying to uncover what is at the core of various things, and doing my best to treat.
Thank you so much for all of the thoughts you are giving me as to what could be going on. I am very familiar with the need to do your own research, no matter how well intentioned your physicians. The bottom line, is that no one cares as much about your health as you do. I find I have had to be willing to learn, and also willing to change to have any hope of improvement. And I am better than 5 years ago, so that is good!
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