janiedelite

Hemolysis means the red blood cells ("hemo") have broken open ("lysis"). This happens if the needle used to draw the blood was too small for the blood cells to pass through uninjured (which can happen with a butterfly needle), or if the blood was shaken, or if a syringe was used to withdraw the blood and the plunger was pulled too forcefully. When the blood hemolyzes, the potassium that was in the cell is released and can give a falsely elevated reading. The sodium will be unchanged because the only place sodium is found is outside of the red blood cell, in the plasma.

When I went to the doc with a UTI, I was told that more than a cup or two of cranberry juice can actually be detrimental because the bacteria will propagate more rapidly in an acidic environment. And they said that the sugar wasn't good when fighting an infection. I've been able to kick some mild UTI's by just downing tons of water during the first day or two. Best wishes!

UTI's can be serious if left untreated. You should see a doctor within the next day.

FYI, one of the best meds I ever tried was domperidone. It was prescribed to me by a gastroenterologist for small bowel dysmotility. I would have taken it long-term but my BP tanked (this was a totally odd reaction to this med). There are other medications like low-dose erythromycin, and phenergan or reglan (the last two can cause tardive dyskinesia, especially if used long term). Also, eating easier-to-digest food can help, along with lying down while eating and eating small meals more often. Anyway, the nausea can be attributed to several causes if you have dysautonomia. If you have nerve damage like small fiber or autonomic neuropathy, you could have nerve damage to the nerves that control GI motility which can cause gastroparesis, dumping syndrome, reflux, etc. When I was at Mayo, a GI motility study found that I have small intestinal dysmotility. The neurologist surmised that when I'm upright, blood is being diverted from less important organs such as the gut in order to perfuse the brain. There have been a lot of threads on nausea, dysmotility, gastroparesis, etc. Try typing any of these into the search bar for more information.

You can do a search and lots of topics will come up. Just type in "Suleman" in the search bar. Several members have seen him and reported their experiences, all good from what I read. Best wishes!

I agree that I don't get overwhelmed nearly as often as I was prior to starting a beta blocker. I can see a direct correlation between my mood and orthostatic or other physical stress.

Yes!!!! That's so great!

I have facial flushing but it's most likely due to my hyperadrenergic POTS. I do have high levels of norepinephrine on standing, normal while lying down. I've had carcinoid and pheo ruled out.

Parkinson's is a type of dysautonomia. The dopamine-producing cells in the brain stop working. Parkinsons patients often have problems with orthostatic hypotension in addition to their other issues. It is classified as a disorder of the autonomic nervous system.

I was also going to suggest getting a Chromogranin A blood test which is considered the gold standard for ruling our carcinoid and is elevated 80-90% of the time in pheochromocytoma patients as well. My mom has carcinoid syndrome and the things that cause flushing/carcinoid symptoms are Ethanol (alcohol), Anesthesia, EATING, Stress and Exercise.

If you choose to come to the US for testing, I had a great experience at Mayo Rochester. I had all of the autonomic testing done in 3 days, but had to stay at a hotel close to the hospital. I did stay for a week following so that we could explore abnormal results from those first three days. However, the treatment they suggested wasn't very helpful. I took the testing home to my doctors and have had to come up with my own treatment plan. But the testing was wonderfully thorough.

Some people are just so rude. As far as how to handle the situation, I think you have to use discernment. It sounds like this woman was bound and determined to cause you trouble no matter what you said in return. This happened once to my mom, who has carcinoid syndrome but looks lovely on the outside. Stress unfortunately makes her quite sick as well, so she just tried to ignore the rude bystander and go about her shopping. There's nothing else you can do sometimes, but know that we understand that your need for disabled plates is a valid one. If it seems like the person is at all teachable, you maybe can say something like "i have a heart condition." But usually in these circumstances, it's not worth out breath.

Yay! Sorry you'd have to travel, but it sounds like seeing this doc would be worth it!

I was on coreg for a couple years and it was certainly helpful. For me, I've responded best to treatments that increase my blood volume like salted fluids, compression hose, and desmopressin. However, I don't do well with florinef. There are lots of options for treatment (found on the DINET home page, under What Helps). Usually there's no "magic cure" but lots of time with trial and error before you find the best option for you.

the best test for small fiber neuropathy is a skin biopsy. You could ask a neurologist or a dermatologist can also do the biopsy,

Thank you Rachel!

Naomi, I asked our forum administrator about this. I'll let you know what I find out.

I believe that whatever is posted in this forum can be viewed by the general public, whether by searching on the DINET forum as a non-member or using an internet search engine.

Igail, just a thought... I'm on 50mg/day of doxycycline for rosacea as it's been shown to decrease inflammation in blood vessels. I have to take it for about 3 months before I see results so obviously the anti-inflammatory effect isn't very pronounced. Maybe it did help a bit with inflammation?

Derekliz, electrophysiology is a branch of cardiology where the doctors specialize in the conduction mechanisms of the heart. I don't know if searching for an EP doc will help any more than any other specialty. I think the main goal is to find any doctor, whether neurologist/cardiologist/etc, who is knowledgeable about your condition or who is willing to learn and try various treatments with you. Most of us have to go through some time of trial and error before we find doctors and meds that actually help our symptoms.

It sounds like your doctor wants to help you. Maybe you should follow his advice; it sounds like he'd be available to you if you had a bad reaction to the treatments he suggested. Best wishes!

MacksMom, I actually had a dermatologist who diagnosed me with erythromelgia (EM). The thing is that my hands and feet may get red while they're below my heart, as soon as I raise them they turn pale again. I actually met a woman with erythromelalgia and her foot was horribly red all of the time (although elevating gave her a smidgen of pain relief). It made me hurt just to look at her . There are different types of EM, but like POTS, there is most likely a neuropathy cause. There is familial EM that starts in infancy and genes are felt to play a role. And there are times when my feet look more blue than red. I was part of an EM forum for over a year and there were some EM sufferers who also had Raynaud's. Those darn neuropathies!

If you're trying to get an idea of the percentage of dysautonomia patients that are disabled, keep in mind that only the more severely ill patients would search out a forum like this. There are probably patients who are able to manage their symptoms adequately and wouldn't feel the need to be a part of a forum like this.

I think you have to talk with your insurance company and see if Mayo is considered in-network, then determine what your benefits are. If you're sick enough and have the money, you may even want to look at out-of-network benefits if Mayo isn't in-network. Also, if there's no autonomic testing facility near you, you can appeal to your insurance company and they'll be obligated to pay in-network benefits for autonomic testing (it's usually important to have a doctor help you with this because it gives your claim more weight).

You put all of my thoughts into words, WyomingGal! For me, coping has come as I am patient with my body knowing I'm doing everything in my power to improve my symptoms. It's about giving myself grace and being proud of what I can accomplish with POTS, and by being thankful for the people who are so precious to me.