ariella

Hi Chrissy Welcome This is going to be a shortish response, having a "POTSy" day, it's a little hard for me to focus. POTS is a group of symptoms and is a type of autonomic dysfunction. Sometimes the cause is known, and sometimes not. Many of us here have other medical stuff going on, and since the classification of POTS is fairly new, we don't always know the connection. Sometimes autonomic dysfunction can go away if a known underlying condition is properly treated. I also have some neuro stuff going on in addition to the POTS, and what was making diagnosis difficult is that autonomic dysfunction can cause many multifocal symptoms. My doctors didn't know where to look first, but now that I have an autonomic dysfunction diagnosis, we're focusing on the symptoms that are unlikely to be caused by autonomic dysfunction. So the autonomic diagnosis will probably be helpful to the greater diagnosis by process of elimination. I think you are very wise to follow up on the mri, especially as other symptoms are showing up. Please try to find a good family practitioner to "direct traffic" and to direct you to the proper specialists. While you wait, I know for myself the best thing is to try to surround myself with positive people who see me when they look at me, not just an illness. Ariella

Hoping someone is awake---I know most of you are in North America. I'm going to my family doc in about an hour, anyone have any experience with anti-nausea medicine, what's good, what's not worth the side effects? I'm having a horrible time holding down food for a couple of weeks already. Any non-medicine ideas? I'm trying to stay on minimum medication. Thanks Ariella

Hi I also love midodrine. Definitely helped pretty much right away for my brain fog. I've been trying to record a music cd, without the midodrine I'm totally spaced out and can't focus well enough to hit the right guitar strings. Having said that, I still have better days and worse days, I think my dosage needs to be adjusted, my doc tells me I've built up a tolerance, so I need to do something like 2 months on and 2 weeks off. Even so, I think I need a stronger dose. Maybe same goes for you, I would speak to doc about taking a little more in the am dose to see what happens. Ariella

hi persephone! I'm nearly in your time zone, I live in th Old City of Jerusalem (yup, the part surrounded by a wall) , Israel, although am originally from New York. Anyone else from my country? Ariella

I read that sometimes POTS is caused by an autoimmune disease, Anyone have this as a factor? If so, of what nature? My blood work is baffling the doctors, at one point they were about to tell me I had lupus, then everything started showing up negative, now the "main" autoimmune stuff like ANA and anti-dna is showing negative, but my immunoglobulins are off. Plus a few things that might suggest liver involvement is off, but the mainstay of the liver profile is normal. Going back to the rheumatologist soon...this has been a pattern---they ping pong me back and forth between the rheumy and the neuro. Those of you who responded to an earlier post about myasthenia-like symptoms, were you also evaluated for other autoimmune diseases? I read they often come in clusters. Anyway, theory goes that if you can get rid of the underlying disease, the POTS symptoms will also go away. YAY I'm open for ideas, plus can use some encouragement, I took a self-imposed vacation from the diagnosticians for a bit, and now need to go back. Thanks Ariella

As many of us are still undergoing many medical tests on a pretty regular basis, I thought it might be good to remind everyone that it's always a good idea to double-check orders for tests etc. for human error. Happened to me AGAIN this week, the doctor ordered a particularly important blood test and somewhere between the doctor's instructions and what the medical secretary wrote, I nearly went for the wrong test. (mixup with very similar words, but testing for two very different things) At least this time I caught this mistake before doing the test. After having a CT without contrast when the doctor meant to order it, and an mri concentrated in the wrong place because of a typo, I've learned to read and be educated about EVERYTHING. Have a good weekend everyone! Ariella

hi radha It happens to me all the time from eating, which is a real pain because there's eating involved in most social situations. What helps for me is to avoid carbohydrates and sugar. Ariella

Steph, what's confusing is the symptom overlap. I've been having tachy/ breathing/ pre-syncope and dizziness for years. About 2 1/2 years ago I started having trouble walking. Not because I felt exhausted, but my legs would just hardly move, it was progressive, as if the muscle was slowly dying. It was painless. It's always worse after an infection. As my autonomic stuff progressed (more recent) I started having this painful numbness on the right side, and now sometimes have annoying upper back pain, which wasn't borne out on the spinal mri. Thought it was heart related if it's not back related, but cardio is sure it's spinal. A lot of back pain is referred pain from somewhere else, they just took 7 tubes of blood this morning to see if anything looks stranger than usual. Ariella

sorry to keep putting different symptoms out there, but my doctor is convinced there is another chronic thing going on and we haven't yet figured it out. Does anyone have pain which is much worse on one side? It feels like there is no blood getting to my right side-arm and leg. It feels like an elephant is sitting on my right side. Not constant, but often, and worse at night. Spine mri showed some disc issues, but no one thinks that's what's causing it. Why are they not ordering circulation studies? Could POTS cause this type of pain? Ariella

Hi Ernie! Congratulations! Freedom is so awesome, this is great news. Let us know how you continue to decorate! Ariella

hi guys, I'd love to eat spaghetti too, but it destroys my blood pressure! have to wait another 6 weeks for my appt with the neuro. No one here is going to prescribe mestinon unless i get a positive result for myesthenia. What freaks me out is that the muscle weakness is also in breathing (I know breathing stuff comes with pots, but i even have it laying down) Ernie, check with your doc, but I read that a regular EMG is usually negative in myasthenia, the appropriate test is a single fiber EMG. I hate EMG's. Will try to get a hold of CoQ12 in the meantime Pots doc convinced that the progressively weaker and slow walking can't be from the pots. I thought it made sense it is if blood isn't getting to different muscles, that would make them weak, right? What's interesting is that I had a horrific reaction to florinef, which is one of the drugs myasthenics are not allowed to have. thanks for all the advice Ariella

I tried florinef this month for about 9 days, and it made me feel much worse. I don't know what it did to bp, I was too miserable to check it! But it did cause me many more epiodes of arrythmia along with chills and shaking and nausea, some anxiety (not because the reaction was scaring me, just felt jumpy) , and it didn't help at all for the dizziness. also extreme fatigue and muscle weakness (which may be related to another undelying condition that I have) Doctor insists I try again in two weeks. I don't want to listen, but feel I have to humor him after the two weeks for another week or so. I feel like he just sentenced me to a month of extreme suffering

Susie hope you're feeling better. I've had episodes that the doctors thought were ministokes, but were not validated by the eeg. It turned out to be severe attacks of hypoglycemia, common with pots. I have that under control now with diet. You must be pretty scared. I hope all turns out to be easy news. Ariella

Hi everyone POTS only explains part of my symptoms. POTS doc wants me on top of the other part of dx. One of the angles we're exploring is myesthenia gravis (original antibody test was negative, but I had been on steroids, so that is not unreasonable) The neuro I had last seen to figure out what is going on was at least man enough to say that he is not familiar with autonomic dysfunction. Probably need to go back to same doctor for whatever buerocratic reasons. Anyone have any useful info? Can myesthenia worsen autonomic dysfunction? I have an appointment with my primary tomorrow. For now, fishing around on google. thanks! Ariella

missed my sister's wedding because i was at a point that i couldn't fly (international flight). extreme shortness of breath, pulse and blood pressure all over the place, sugar problems. Doc also felt that it is not wise when in"crisis".

don't know what is technically happening at night, but much worse by late afternoon/evening. my body just shuts down, it's kind of like when the battery on a cell phone is out of juice and just shuts off without saying goodbye

Prayers are with all of you. A little girl who's suffering so much and still wants to dance is a fighter! ariella

Last week I read several times in different topics about ear fluid/ stuffiness/ pressure complaint. Am I missing something that I should know, I always assumed my ear problems are allergy related??? Ariella

After pointing out that people usually tell me how good I look on days that I feel my worst, a friend who's been there for me from the beginning had a theory that it must be that on days when one feels so lousy and still pushes forward, it makes the positive inner spirit of the person shine forth..People are expressing it in a physical way but it's the beauty of meeting a challenge that makes us look attractive. I've learned to just say thank you. Anyone who is really there to help us will ask further questions.

Hi. I have itching on and off in general, but my doctor advised me not to have any alcohol. Don't know if it's because of POTS or because it seems to be that I have some nerve damage in addition..But if I drink even a few tablespoons worth of wine, my symptoms get worse. Ariella

Hi Linda Typing this with my 3 year old on my lap, please excuse typos. I've been on florinef for a little under a week and the only positive benefit so far is that my seasonal allegies are better! Don't know how quickly it's supposed to work. With the midodrine it was pretty much immediate. for now, it's making all the symptoms come out in their full glory:I'm very dizzy, nauseous and throwing up, getting strong chest pain on and off, severe chills, hard to focus and I guess undestandably I'm pretty cranky (so is my 3 year old right now! thankfully no migraines. maybe today was a little better than yesterday, but don't see any benefit yet. you say it helped you right away? feel good! Ariella

wow Ariella

Hi Blackwolf! I'm angry along with you. At least I've been blessed with a primary who's humble enough to put himself in my shoes. I wish you a lot of peace of mind from the new doc. When doctors respond with the psycho stuff it's only because they don't know something and are too full of themselves or too lazy too find out about something new. I know you know that, but it's alsways nice to hear it again. Ariella

Hi Ernie, Thanks so much for consistantly replying to my questions! Muscle weakness?? I'd been suffering from extreme muscle weakness way before the pots was diagnosed. I keep at constantly using the weak muscles to build up tone. Been playing guitar to keep it up in my hands. Today I was supposed to go over a song with another musician, I'm trying to work on a project, Keep saying it's my way of fighting, today my hand muscles were too weak to play, had to cancel, really bummed me out. So maybe it is just the florinef! can't wait to get off it, told doc I'd give it a chance for a bit more. In the meantime it's giving me chest pain and nausea and the shakes and I think some brain fog. And not helping at all. I hate this medicine!

Oh, and Catherine " Cathielu" Welcome aboard Ariella