ariella

hi I've had stabbing eye pain in the past and am being followed by a good opthomologist. He says it is either from dry eyes or from eye pressure. Both things were taken care of and I don't have the pain anymore. Dysautonomia apparently can cause both. Ariella

yes Best way I can describe it is that I feel like I'm going into shock, and probably am, have gotten some really funky bp readings during, although usually I'm too immobile during an episode to measure bp. I get it every month with hormonal changes, and also if I'm overtired. It's my second most miserable symptom--second only to respiratory distress which I've been in and out of the hospital for due to myasthenia gravis. Ariella

Mary I've been through all the diagnostics for MS myself, so if I can be of any support through the process, please PM me. Wishing you good news! Ariella

Hi Nina, Who wouldn't be tired and cranky with a migraine lasting nearly a month?...and you've been working all this time too? Steroids can definitely add to cranky, or so my doctor has warned, so far they've just made me incredibly hyper. Wishing you relief soon. Ariella ps forking over $450 for a psych evaluation would be enough to give me a migraine for a month

Hi Heather, Canker sores are often associated with autoimmune stuff. I'm getting mouth sores now from immune suppressants. A friend who just finished chemo gave me this natural stuff they gave her in hospital, if it works, I'll let you know. Ariella

Lauren, Please don't give up hope of getting better. Just a year ago, I felt next to dead (the doctor was very concerned as well) I couldn't turn my head or change position without the world going black on me. I had shockwave chills (really shock, bp readings from Mars), hypoglycemia, constant vomiting etc etc. I'm not exactly in remission now, but I'm in a much much better place. I'm able to think about going back to work. Yeah, there are days that I crash, but compared to where I was, it's so so much easier. I am now wheelchair free. So yes, maybe there is no magic wand for now to make it totally go away, but you definitely have hope of doing "normal things" in due time. As far as the isolation, do you have anyone at all who is willing to take you to parties, social stuff wheelchair and all? Some students did that for me when I was housebound/wheelchair bound and it made a huge difference. Sending love, Ariella

Jan, Keeping you and your husband in my prayers. A friend who just went through chemo for breast cancer and was suffering terribly from mouth sores as a side effect was recommended some kind of natural something or other to combat the sores, and it worked tons for her. I'm going to be contacting her tomorrow as I've developed mouth sores from the low dose form of chemo I'm on for myasthenia gravis. If it's something that may make Jeff more comfortable, please send me a PM and I'll try to get the details over to you. What touches me about you and Jeff is that it seems that your love and devotion to eachother is keeping both of you healthier longer! People can go a long way on love. Ariella

Hi Corina! So happy to see your name pop up. I've been mostly lurking as opposed to posting. Things have been busy here, life happens even to people with chronic illnesses. They're treating my myasthenia gravis much more aggresively now, but it will take some time for the medication to take effect. Recovering from pneumonia right now. The joys of immune supressants! I'm also on steroids which are making me more POTSy, but as long as I'm able to hold down my food and walk around without blacking out, I won't complain. Talking myself through the tachy episodes. And taking tons of mestinon--cold no more Hope everything works out good for you and your family with the rehab center. Good night! Ariella

hi Mestinon, when given to someone who does not have myasthenia gravis can cause symptoms of myasthenia gravis. Same for me (I have MG) if I would accidentally overdose. That's why it's considered almost diagnostic for myasthenia gravis. If someone has muscle weakness/fatigue/pain that improves with mestinon, it is food for thought that the person may have MG. So the good news is that it's unlikely you have MG! The bad news is that you don't seem to be tolerating the medicine well, and you are at a pretty low dose. I take 60mg every 2 1/2 hours, = 6 or 7 pills a day depending on how I'm feeling. I'm recently getting some headaches possibly from the increased dose, and mestinon is known to be hard on the belly, but if I don't take it I can't breathe as my respiratory muscles are a mess. But for you, there has to be an alternative? You've been on it already a few weeks, if it's making you feel sicker than without, maybe the dr can swap it for something else? Ariella as for the pain question, I do have muscle pain associated with MG. The very first thing the mestinon helped me with was to get rid of the nasty cramps in my legs that would keep me up and crying at night. The pain is probably muscle fatigue.

Hey, I missed my sister's wedding because at the time I was too ill to even travel by car to the airport. My parents and sister totally understood, but my husband kept hinting that if I really wanted to I would push it. I keep telling myself that this is his form of denial, otherwise I get very resentful. Ariella

hi opposite "problem" here. My cholesterol is consistantly a lot lower than it should be, I remember reading somewhere that low cholesterol and neuro conditions sometimes go together. who knows? Ariella

Hi I take mestinon for myasthenia gravis as well as for POTS. I take a lot more of it than most people around here (60mg every 2 1/2 hours!) It keeps me functioning. In terms of helping POTS, I found it better for me than midodrine, which I stopped after being very tachy taking the two together. Plenty of people here do take both. I feel it wearing off when I get POTSy again. I am puzzled that people here find benefit on really low doses, maybe it's enough for them with other POTS meds, but as mestinon is the only med I'm taking now for POTS, I really need to take it pretty often in order to be functional. Mestinon can be hard on the stomach. Always take with food. You may feel some tingling in your mouth, twitching of muscles. Please ask your doctor how much of that is considered safe. Don't know if the generic is as good as mestinon for POTS, people with myasthenia tend to feel that it is less effective and try to get the "real thing".

Lauren, I imagine you're referring to regular achr antibodies and not the ganglionic type that they look for in POTS? The regular achr is associated only with myasthenia (and snake venom ), and indicates myasthenia gravis. One can have myasthenia gravis and not be positive for the antibody as well. I have both active symptomatic myasthenia--without the antibody-- and POTS, and it seems the two conditions like to gang up on me simultaneously. I asked the neuro about it, he thinks it's entirely possible there is a connection. What are your other symptoms that aren't accounted for by POTS? Are you having shortness of breath that is not being caused by the POTS? If so, please follow it closely, that could be a dangerous complication of myasthenia. I have it and feel lucky to be alive as I had a "myasthenic crisis" of sorts that was not taken seriously because I was not yet dx with myasthenia, and the docs wanted to blame everything on POTS. Anyway, if you'd like further info, feel free to contact me. If you are told you have myasthenia and are taking florinef, check with your doctor, it's on the "bad list". Happy you are getting some answers. Knowing what you are dealing with is most of the battle. Ariella Oh, as for IVIG, I wish I could do it. My insurance won't cover. It is very expensive, but for someone whose symptoms cannot be controlled by mestinon alone, it is considered a safer alternative to immune suppressants/steroids, with the exception of those who have had adverse reactions to it.

Enjoying reading everyone's replies! I'm an artist and musician, although have been too sick to actively work (exhibit artwork, record music) these last 3 years. So, we haven't been able to rely on me for income. I've been gradually , I mean really slowly putting together a series of paintings and music for exhibit. Hoping to be strong enough in a month or so, as I have been improving! Right now, I'm stuck at home again because of pneumonia AGHHH!! but was able to use the opportunity to put together my website..almost done I can relate to this feeling of hyper yet ill. I probably have ADD, plus I'm taking steroids for another condition. So, I'm like ADD on steroids that has to rest. It drives me loony staying in one place. I want to get up and GO! and start making plans--thank God my mind works--but then I crash when I start to implement them. Sometimes I wonder who I'm fooling, but I'd shrivel up and die if I didn't keep my dreams active. Good luck! I hope you find employment you enjoy. Anything you can think of that's web-based? I'm hoping that my wesite will save me some walking.. Ariella

Hi At least four of my five kids were born after my POTS symptoms. I had premature contractions with all of them with no known cause. Two deliveries were near c-sections but in the end normal deliveries, but unlikely POTS had anything to do with that. In retrospect my premature labor probably has something to do with my mysthenia gravis which was recently diagnosed, but in retrospect was probably in my body for quite some time. A couple of deliveries were induced a little early because I was unusually weak. I was tachy and weak and short of breath though during and after labor and needed oxygen, and showed an arrhythmia on an ecg in the delivery room that has not shown up again.

yup It's better now that I'm on mestinon. It helps me to walk around every so often. ariella

hi Happy to hear you have some progress. Although you aren't showing symtoms of MG, the fatigue may very well be a manifestation of your MG and will go away with treatment. Good luck with the IVIG. I hear it does wonders for people. The socialized medicine system in my country won't pay for it, so I'm going the toxic route now with immune suppresants and steroids and am trying to get rid of pneumonia to boot. much healing, ariella

I don't have an answer for you, but my daughter has an appointment with the neuro in 2 weeks. She will probably be put on ritalin for ADHD, but I suspect she may have some dysautonomia issues as well. If your doc thinks strattera would help additionally with POTS, please PM me, it would be an added benefit for her. thanks Ariella

Carmen, SO happy to read your post this morning. Continued strength and function and joy! ariella

hi So happy to hear that you are finally making some progress. It's been a rough year. Hoping to hear good news from you, Ariella

Hi I started prednisone about two weeks ago for another condition. I am on a high dose. I think it may be worsening my POTS. I was dizzy and high as a lark this morning. Eventually I went outside for a walk because I was scared to be home alone. I thought I was going to collapse. Anyone else with this experience, or is it just coincidence? thanks Ariella

Jaquie, You mentioned that you have muscle weakness in your legs. If the florinef makes it worse, make sure to mention it to your neuro asap. ariella

too much stimulation=bad POTS day ariella

I remember when I first got my POTS dx I wanted to pin everything on it, including my weakened muscles, inability to walk, slurred speech, vision issues etc. etc. My POTS doc insisted something else is going on and had me go for further evaluation. It gets better--the team of docs who originally failed to dx my dysautonomia were also only too happy to throw everything onto a POTS dx. I finally have been dx with an additional illness that could have proven very dangerous if left untreated. You have been posting in the last few days a bunch of new symptoms, please keep a list and discuss it with your doctor. Vision problems can be from a host of things, many of them neuro-based, and many controllable, especially if taken care of before its out of control. Also, if you have one autoimmune disease, it is common to develop another, they come in clusters. I don't mean to sound like the bearer of doom, just I've learned the hard way that it's easier to get a medical condition under control before it gets to a bad place. good luck and don't worry about feeling like an idiot for being persistant or reporting a new symptom! ariella

I've had some unidentified autoimmune disease going on from about 2 years prior to onset of POTS . For now the manifestation is myasthenia gravis, but autoimmune diseases tend to come in clusters, and it's possible there is another one lurking in the curtains my neuro thinks it is possible that my POTS and myasthenia are somehow related, but can't know for sure. But they do piggyback together... Ariella