momandmore

My tachycardia was first diagnosed in 2001, during my third pregnancy. It never went away and got really bad again in my fourth pregnancy. Over the years, my doctors told me it was anxiety. I kind of believed it at first because I really thought something could be wrong with me; having heart rates in the 160s can actually make a person nervous. What I noticed after awhile is that my heart rate jumped when I was sitting or standing up. I also realized anxiety meds never brought my heart rate down. Finally, I got frustrated because my heart rate was still wonky after everything I was doing to try to get healthy and I felt poorly for years with no medical reason. So I went back to my doctor insisting on answers and gave him an article I found on POTS and he referred me back to the same cardiologist I had seen before. When he gave me the anxiety explanation again, I nearly screamed at him, "I know what anxiety is and I'm not anxious! And I haven't been continually anxious for twelve years!" he actually believed me and thought it could be IST. But when an EP looked at all my test results, he said no to the IST idea and said I have a POTSy dysautonomia. So almost fifteen years. But like the others said, things were probably a little off before the flare during that pregnancy.

This might not be helpful to you. If not, you can freely ignore it. And I'll give you the warning that it's part of Catholic theology and might not make sense to people in other belief systems. I went through a very dark period during my third pregnancy. That's when my POTS started. I was so sick, even lying down, the dizziness and nausea were so bad. I had two kids to take care of but couldn't. I couldn't imagine getting to work. I couldn't even get myself to the hospital for fluids which probably would have helped. I was so dehydrated that they could not get blood out of my arm at an office visit. Sometimes I think it was a friend who helped me survive that time. She was also in a bad way but I paid her to shop for food and come over to cook a simple dinner for my family to make sure we would have food and eat, and that helped her feel a purpose, too. She would pet my head and back and pray for me as I would lie on the floor crying with sickness. But during that time I decided if all I could do was suffer, I would offer that to God. And I would dedicate each day as a prayer for a certain person or group of people who I know needed help. Again, not everyone would agree with me, but it got me through and gave me a purpose for living when things were very bad. During another bad glare, two friends got me through. They would just call and check on me everyday or two. One had lost a child, then other was a cancer survivor. They know what it was like to feel physically and emotionally crushed and they were there for me. I will never forget it.

I 'm very sorry I didn't know your daughter's full history. I haven't been active here because I've been doing well and also got caught up with other medical issues in my family over the last couple of years. I decided to come back when I realized, despite feeling much better than before, my heart rate is still wacky, and things have settled down here thankfully. It's very possible your daughter could have celiac and MCAS and other allergic reactions going on. The gold standard for celiac is a biopsy, but since she has all those other things going on maybe you can start with the celiac blood panel with either your primary or a go specialist. I only say that because my daughter got hives a couple of days after her endoscopy that took weeks to go away and I've wondered if that triggered anything. You really need someone who knows what they are doing to read a celiac panel. There's one part of it (I think it's the IGA. It's been awhile.) that tells if you have enough of the right immune factor for the other tests in the panel to be reliable. With my daughter's, it was low. But because the pediatrician didn't know the significance of that test, we were told no celiac. That happened maybe three times over the years. They kept repeating it because what she had looked so much like celiac. Finally, we ended up getting the endoscopy and that proved it wasn't celiac. If your daughter has one possible autoimmune problem all ready, that makes another like celiac more likely. But please see an allergist and ask if it would be appropriate for her to have an epi pen if you haven't already. I hate to ask, but, since you mentioned the optic nerve, has she been tested for Lyme? I don't know why I see a relationship and that wouldn't really explain what your daughter is going through now.

Also, since it sounds like an allergy and it's affecting vision, you should really talk to an allergist because you wouldn't want to mess with triggering anaphylaxis. I'm not saying it's not celiac but my friends with celiac have different signs. They have GI pain and distress that can last for a week or two after having gluten, as well as fatigue, headaches, and neurological stuff.

And she never had allergy testing? My DD tested positive to eggs, wheat, and milk, and some other stuff, as a teen, and after the negative endoscopy. She had allergy testing several years before and had no positives. She avoids eggs but I think she would feel better if she cut wheat and dairy out, too. But she's an adult and makes her own choices. A friend was sure she had celiac, went to a GI specialist who said no after blood testing. Then she went to an allergist who diagnosed an allergy through skin testing.

We are near CHOP, and near DuPont, too. I like the EP Dr. Temple at DuPont (I never went to CHOP for cardiology yet). I have two children who have seen him. He's picked up things other cardiologists, including an EP, missed. I found an EP I like locally. He is very kind and understanding about dysautonomia but he's really hard to get an appointment with. So I understand how hard it is to contact busy doctors.

If you have a physical diagnosis, like dysautonomia, disability services can help with that. But, it's true you will need a letter from a doctor. Sometimes we found the doctors we liked the most refused to write letters, while doctors we only met once wrote great letters. Is there a clinic on campus you can go to? Free counselors on campus?

I second the recommendation to contact disability services. They coordinated everything for us, medical, psychological, learning issues, which affected class related accommodations and also housing accommodations. I will say the specific problems can all be confidential if you with. Disability services just tells everyone else what accommodations to make. We have found professors very willing to help as long as they know there's a need.

The ear thing sounds like allergies to me, which could be related to MCAS, especially considering the tryptase and plasma histamine. It was believed for a few years that my daughter was developing lupus, due to a bunch of vague symptoms and mildly elevated autoantibodies. She was also in plaquenil, which I think gave her hypotension and increased anxiety but it may have helped with pain. Anyway, she had to change to a new rheumatologist who was highly recommended. That doctor took her off plaquenil and told her all her issues are related to joint hypermobility/EDS. She has weird allergies, in terms of not reacting to things she tests positive for and then getting unexplained hives. She did have all her digestive enzymes tested and an upper gi to check for celiac.

I'm not an expert but I would be very inclined to call the EP who wants the MRI and inform them about the autonomic testing. That doctor would ideally want to coordinate all the information. The other thing possibly worth asking is if a title table test can trigger VT. As well as, should you definitely get on the BB before the TTT if it could? Should you even get a TTT if it could? Again, I don't know much but I had a relative who had VT and it was taken very seriously. He had considerable problems with his heart valves and I don't know if that's related. For no reason, my EP didn't want a TTT. I thought that was weird. But then I heard an interview with Dr. Boris from CHOP and he doesn't do them either. His reasoning is that they are uncomfortable and he can get good enough information using the poor man's version in his office. My dysautonomia was confirmed when I had a stress test and was totally hooked up for awhile.

I think Roxy is right. US normal is not the same in Japan for example.

Have you had your B12 tested? I have a history of my B12 getting low, which could be partly due to impaired digestion. I also had lots of nervybissues after pregnancy, but I never had a C section. It's amazing to see how quickly those nervy things got better after supplementation. If I could only get it through my head that I have to keep taking B12, I'd be a lot better off. I'be also had twitches of all kinds and palpitations improve drastically with magnesium supplementation. No mega doses or special formulations necessary with either of these, just anything you can find at your local discount or drug store, Vitacost, Amazon, whatever.

I really don't mean to second guess you about the EDS but that really jumped out to me as well. I would be inclined to look at signs other than hyper mobile joints. We had years of problems and pain with one of my now adult kids and it wasn't until the right specialist was able to pick up on her loose joints, and it didn't look anything like what we thought hypermobility was. Once you near fifty, most joints have lost their flexibility so you can't go by hypermobility in the same way. But you still have weak connective tissue, problems with skin and healing. Yikes, I know of two people whose surgical incisions did not heal for over a month, one with a confirmed connective tissue diagnosis and one suspected. When you are young, active, and have developed muscle, the loose connective tissue isn't always a problem but when circumstances change, the pain from the loose joints can develop. All that said, I have the same pain in my fingers and I think it's related to allergies and intolerances, too. I used to have all over body pain that allergy meds seemed to deep under control. Then I took something out of my diet by chance and my pain went away. I could go off the allergy meds. Now I sometimes get the pain but I attribute it to allergies, even environmental stuff. If I clean really dusty places, for example, I will have pain the following day. And now it's been rainy for several days and I have widespread pain again. I think it's probably mold spores irritating my system. It's just a puzzle as to why our bodies get out of whack.

Is anyone else out there unable to warm up sometimes? Like you feel absolutely freezing with no explanation? All the layers of clothes and blankets don't help and you can't sleep? The only thing that has helped with this is an electric blanket. I had to use one during a spell in August when the temps were actually very high. The only problem is I will wake up later soaked in sweat.

I'm 47, too, and have four kids, and have similar problems develop for the first time over the last year. I also now have the issue of suddenly having to go, completely out of the blue, which can be scary. I'm not sure if that is what people mean by urgency. I don't know if it's hormonal changes or dysautonomia. My biggest problem which seems dysautonomia related is that I have to go a lot, especially in the morning when my heart rate is highest. It makes me nervous about making plans to go places that require long car rides. I also have to get up at least once or twice before falling asleep and once during the night. It would be really nice to sleep through the night without having to get up to pee.