Katybug

Hi! I tried midodrine when I was having chronically low bp and low pulse pressures. It did not increase my bp at all. I also didn't have any adverse effects from it either. I just think we weren't getting at what was causing my issues. But, if those sitting numbers are low for you, I would call the doc. I also agree with Sarah that maybe your body doesn't appreciate being off the florinef.

It's important to fluid load as you are salt loading. The salt alone won't to the trick. The salt is to encourage your body to hold on to more fluid so it can increase your blood volume, and therefore, your blood pressure. There are many members that have forms of dysautonomia other than POTS, although POTS seems the most common. But, there's lots of crossover with symptoms and treatments. Also, many POTS patients also have OI as well and so have to manage both. Hopefully, you will find information you need. I don't have CFS, but I do have several comorbid diagnoses with my POTS. I find that I need specialists in each of my diagnoses to manage my healthcare. While the diagnoses have some crossover with each other, and so my doctors all know a little about them all, I find having the expertise in each diagnosis has been important. As for the question about fatigue, it's hard to say what thing is contributing most to your fatigue. But, my geneticist talks about the Rule of 5% in regards to treatment. Her theory is if you can improve symptoms 5% at a time....5% with one thing, 15% with another, 10% with another....it eventually adds up to a significant improvement in your quality of life. So, the improvements you might gain from salt, fluids, exercise and compression might not be huge individually, but, can really make an impact when used together. Then, you may be able to add on with pharmaceuticals once you see the docs. I find this to be a good working theory. Sometimes I need braces for a joint, sometimes not, salt and fluid loading is important for me, sometimes I need compression, nursing a small amount of caffeine, exercise, sometimes I need to sleep a good part of the day, I have some as needed meds to take for certain things.

I agree with statesof that it's worth asking the doc if you should stop the BB for a day or two to see how that affects the flushing. And, as Amalie stated, benedryl may not be enough if this is a full blown mast cell reaction. I take 2 H1 antihistamines and an H2 daily, but I still have to supplement with benedryl and promethazine for breakthrough rashes and GI issues. Even with all of that, sometines, it isn't enough and I have to ride it out. Also, it is possible that IV antihistamines could ultimately be needed. I think I'd call the doc and ask about skipping the BB for a day or two and also for help choosing a combo of antihistamines to try to treat. Obviously, if you're going to skip the BB, you may want to do that before trying additional antihistamines so you know what's working and what's not. Hope this goes away soon. I hate itching!!

I have a dog. She's older now and has health problems of her own. So, we can only do "shorty" walks now because neither of us can go more than 15 minutes. She has been a light in my world! I don't know how well I would have coped with my illness without her. I also have 5 kitties and a horse. The horse is boarded and is also old and retired. But, I think all of my pets have helped me have purpose at a time when I could have easily wasted away in my bed. They also give a kind of love and support that most humans can't provide. They are always in the moment and don't judge....just being present and quiet is ok with them.

I don't have any idea about that, Sylvie. I would check with your doc.

Hoping this is resolved soon, Ancy. It must be scary aside from feeling like ick.

Hi Kathy, If you use the search function, you should be able to find old threads that include homemade recipes for electrolyte drinks. I've been using a brand of electrolyte mixes that are a little less sugar (I cant do artificial sweeteners.) and I find more affordable than the grocery store versions. Plus I can order on Amazon and it's delivered. They also have a mix that is meant to be drunk hot and tastes like hot apple cider. The brand is Skratch Labs.

Bananas are killer for me....mast cell reactions all over the place....rashes, burning lips and gums, GI issues, spike in migraine.

I, personally, think it's more likely that the significant activation of the immune system inherently means there are inflammatory processes going on in the body. This could also lead to inappropriate autoimmune responses. These inflammatory and/or autoimmune processes could temporarily or permanently cause nerve damage of the autonomic nerves in those that develop dysautonomia. But, this is all conjecture and not proven by any scientific study, although, I wish the research would catch up on this as we would probably have better treatments.

If insurance will cover all or part of it, you may have to pay out of pocket and then submit for reimbursement. That's what I have to do for my compression stockings. I do also have to submit a prescription from a doc for the stockings to get reimbursement.

I agree with what the other ladies said. My hope for you is that you value yourself enough to not settle for someone who measures your worth by your health status.

Dancer, I'm so glad that you had a successful visit with this doctor! And that you had a mini vacation with the hubby! Happy Easter. Katie

I have been in extra bad shape since the weather started warming up (I think I'm the only one that was happy for the few cold days last week). This is a typical pattern for me every year. The warmer weather patterns and I don't get along.

I have found I have major issues sitting at my desk too. I have much better success if I use my laptop while I'm in bed or on the couch with my legs up. I have found I have the same problem with eating. At my house, I eat on the couch with my legs up and I'm ok. But, at my mom's we eat at the table and I have a presyncopal attack every time. I have to excuse myself about 15 minutes into the meal and go lay down. For me, having my legs up makes a huge difference.

I feel like there was truly a grieving process of my "old self" that I went through. I learned through that process to find acceptance and also to be truly grateful for what I do have. It's not easy all of the time, but, I truthfully believe that you choose happiness. It's not something that comes from outside of you, from things you have or things you do, it is an energy that eminates from inside of you if you choose to let it out.

Welcome to all of our new members!

I don't have gastroparesis. Baby food is processed for sure. But, are you well enough to make homemade baby food for yourself. It basically entails cooking the food....veg, fruits, meat. Then, puree the cooked food with some liquid....water, juice, broth. If you are well enough to do that you can control the quality. You can do it in a blender or any of the newer smoothie makers. You can also freeze some of the fruit flavors for sorbet if you make your own. I hope you get to feeling better soon.

There is a rare condition called swallow syncope that can occur. My understanding of that condition is that it happens immediately while you are swallowing, although not necessarily every time you swallow. Also, if there is any chance you have MCAS (mast cell activation syndrome ), if one of these foods is a trigger, that could cause syncope as fainting can be part of anaphylaxis. I would definitely consult your physician if this is a consistent and new pattern for you.

Wow! This is so interesting! I never made the link of progesterone being a precursor to aldosterone. But, I get Depo Provera shots and I feel terrible without them and I feel terrible on other forms of BC that are a mix with estrogen. I assumed it was the estrogen making me worse. But what if it's the progesterone allowing my body to make more aldosterone? Putting this on the list of questions for docs.

Thinking of you, Ancy. Hope this gets better soon.

I don't think it's exactly the same thing, but have you read about thoracic outlet syndrome? I wonder if what you have could have similar effects. They believe I have cervico-medullary syndrome because of the instability in my c-spine. Cervico-medullary syndrome can cause dysautonomia symptoms.

When I have to force my body to keep going because I have things I have to do, I find it hard to unwind afterward. I feel like my body starts running on adrenaline while I'm trying to get through the tasks, then when I can finally rest, it takes a while to get the adrenaline out of my system.

I have it in my face and hands and knees. I believe mine to be associated with my mcas but I don't know what triggers it. But, it is like a nightly friend that visits between 7-9 every evening. I also become wide awake and highly productive around the time it starts but then I can't fall asleep until between 2-4 am regularly.

Someone told me recently that there is a contraindication between ivabradine and calcium channel blockers. You may want to double check that with your doctor or pharmacist. Welcome to the forum, by the way!

I think it's the difference between being in the blood vs being found in other body tissues.