ariella

hi I'm going to approach this from another perspective. I have both an autoimmune disease and POTS. The neuro thinks they may or may not be inter-related, but clearly when one isn't behaving the other comes along for the ride. I take prednisone and immune/suppressants-anti-rejection drugs, call them what you wish. For my condition, IVIG is a safer option, but is not approved by the socialized medical system in my country. I take prednisone and imuran because if I didn't, I would probably die of my disease which is what happened this years ago before people were treated with the above drugs. I don't think any doctor would prescribe immune suppresants with a light heart. It is a heavy decision. It is considered a form of chemo, and needs constant follow-up. I take monthly blood counts and try to wash my hands often. But again, I'd rather be at risk for possible long term affects than die of my illness. Imuran as well as cellcept take time to kick in. Months. Which is why it is started with prednisone (even so it takes time to kick in and may feel like it's kicking you in the meantime). Of course this is a big decision, but sometimes serious illness needs to be treated with serious drugs. Although the POTS was dx as a separate disease, you may feel better in terms of POTS once your other problem is managed better. wishing you ease in making the decision, feel free to pm me if you have questions about the medication. Ariella

I used to get severe burning in my feet, like I was walking on coals. I was once sent to the ER pre-dx when it got bad, and it recovered somewhat with oxygen. Of course the admitting doc wanted to know if I'm depressed. Anyway, I don't recall having the burning sensations since the POTS was accurately diagnosed and treated, so I imagine that it had something to do with blood/oxygen flow to my legs. The change in temperature getting in and out of the shower may be bringing it on. If it persists you may want to rule out peripheral neuropathy of some sort. Ariella

hi I'm mom to five kids ranging in age from 13 to 4. I have been sick since my 2nd pregnancy. I was not diagnosed until after the birth of my 5th, when the symptoms were already bordering on being dangerous. The last few years have been very difficult, especially since I have an additional neuromuscular complication not related to the POTS. At this point I don't think I would survive a pregnancy and my biggest fear is "accidentally" getting pregnant. How would your dystonia be affected by pregnancy? Is it the final dx or part of the picture of something still not totally diagnosed? I don't have a lot of outside help. My family lives 6000 miles away. It is very difficult being ill and having to care for a family. Then there are the times that they keep me going. I've learned to distinguish between doing something difficult and refraining from doing something impossible. So, while at this point I can't do "normal" things with my kids--no treks to the mall, no day trips, etc, I do manage to be very much a part of their lives. It's always a balancing act. You cannot expect the POTS to necessarily improve with pregnancy and birth. It is unpredictable. Giving to a child on a steady basis is a huge responsibility. What I find challenging is when I feel like I can't even take care of myself, my 4 year old is pulling on me because only I could give her a drink (nothing like Mommy). Somehow I manage. This is a huge decision. Just because you may not be able to go on rides with your child at an amusement park shouldn't prevent you from raising a child in a loving, nurturing environment. Not being able to walk or wheel to the kitchen or lift the baby or deal with an emergency is a different consideration. You sound like you have a lot of love to give. If somehow you can get to a point where you can manage your sickness reasonably with accomodation, and your husband is supportive, well, there's food for thought. Wishing you lots of love and peace in your decision. ariella

thanks I was told I don't have mvp, but do have some mitral regurgitation. Turns out I have an appointment with my primary today, so I'll bounce it off of him. I'm also on immune suppressants, which make me more susceptible to infection. Will let y'all know. ariella

To answer your first question, I think many of us get POTSy after a hot bath/shower, so if SOB is included in your POTS symptoms, it would stand to reason. I will get tachy and nauseated after a hot shower/bath, and sometimes black out to boot. Yes, I also get SOB, but it's probably from my other condition. good luck! ariella

Jaquie, Do you havr any idea what may be causing your POTS? If it was brought on by some kind of autoimmune disease, it may be a sign that that is developing and best be treated earlier than later. Ariella

Hi Anyone advised to premedicate with antibiotics before a cleaning? Years ago when I was told that I have MVP (which has since been un-diagnosed) I was told to pre-medicate. Any POTS-only patients given the same advice? thanks Ariella

Hi Corina, Just wanted to let you know that I am thinking about you. What do your children say about this? What a hard decision. I remember being minutes after a spinal tap, laying on my back, while mediating some kind of sibbling squabble on the phone...Youv'e got so much spirit, I really hope they can help you. Love, ariella

Hi Ernie I think most people on this site who take pottasium supplements do so to counteract florinef which depletes it from the body. Potassium deficiency could be deadly. Ariella

mestinon in it's regular form stays in the body for about 3 hours, and then has a half-life of a little more than that. If I forget to take a pill, I will often start to feel dizzy and shaky-i.e. back to my normal POTSy self about 4 hours after taking it. It theoretically should begin working with the first pill, within 45 minues or so, at least that's what it is for people who take it for muscle weakness. I love the mestinon, it helps me function much better. In terms of POTS symptoms, it has helped my nausea (among other things). Pre-mestinon, I was having a lot of trouble holding down food. I don't think it's considered an addictive drug, but if you do want to stop, check with your doctor just to make sure. ariella

I try to be careful in answering mestinon questions, because I take it primarily for myasthenia gravis, and I'm lucky enough to be economical that it also takes care of my POTS. Usually. I don't remember exactly how long it took to help my POTS symptoms specifically, but I clearly remember having apparent "overload" when I was taking it together with the midodrine---I was shaky and tachy etc. Just my experience,though. I know some people here take both effectively. Like Corina, I used to be a "cold POTSy" and this has improved with mestinon. Don't forget to take it with food. If I remember correctly, I don't think I felt it was controlling the POTS adequately until I was upped to 60mgx4. (I currently take even more--for myasthenia--and my tummy seems to have gotten used to it) It usually handles my POTS fairly well now-better than midodrine. Ariella

here to second the advice. it's tough to be without insurance but being short of breath can be from lots of things, some of which needs aggressive treatment. You mentioned that it has only been for a couple of days, have you had a cold or anything recently that may have gone into your lungs? Can the shortness of breath be correlated with POTS episodes? If you do go check it out, make sure your health care provider knows that you can't keep returning because you are without insurance, and should therefore order the first round of tests in one shot, so you don't get the runaround. feel better! shortness of breath is very miserable. I have it nearly constantly from another condition, and I always say it's the one thing that will eventually make me a bonifide crazy ariella

wow, Perse, didn't realize that was the sitauation in your house. I've experienced a similar thing, and it's emotionally harder to bear than this illness. What you probably need most is to rest. Easier said than done, you don't need to prove anything to anyone. I consider myself a very driven "overachiever" type, and I had to face reality and drop out of a home study course a few years ago because by the time I got the kids out the door in the morning, I was too wiped to even hold my train of thought. And you're persevering for Oxford! You are anything but lazy, and you know it. I hope you have someone close to you who does "get it" and tells you how special you are. love, ariella

Ah, the "curse of the over-achiever"...it's real hard to allow yourself to be idle. You push yourself to do so much, you can allow yoursef to indulge in being sick once in a while. No guilt! Sorry that you feel sick over the holidays. It's pretty miserable not to be able to enjoy holidays. Please rest! your body needs to catch up with you!..again--no guilt! all the best, Ariella

Jessica, Congratulations! thank you for sharing your wonderful news with us. Your baby is beautiful. Ariella

Hi I remember once going to the dentist. I was so weak that when the hygienist told me to come back in 6 months I laughed because I honestly didn't expect to be alive. (the dentist later told me that seeing my condition, he didn't expect me to be alive 6 months later either). This was in a period of time where it happened several times that I felt I was "fading out"--hearing sweet singing, and yelling (in my mind) to leave me alone, I have a family to take care of. I remember thinking about what kind of lasting momento I could give my kids. Not because I'm a pessimist. I'm usually a jolly optimist, but I was that weak. It took 3 years, but I finally have pretty much a full dx, and a treatment plan. While I still have a long way to go, it's vastly different from those dark dark months. It's so hard to be aggressive about our medical care when we need it most. Is there someone who can advocate for you? If not a friend or relative, maybe a representative from an organization? You will get better. You know your body best, if you feel you are not getting the proper advice from even very good doctors, look elsewhere for medical care. I needed to do that. Try to keep your records organized and document as much as possible. The more scientific you are about it, the easier it will be for some knowlegeable doctor out there to help you. hugs ariella

Carmen, thinking of you. A friend had a pacemaker inserted recently after her hr was down to 25. she said it wasn't nearly as horrible as it seems. She had it inserted with a local. But I understand your jitters. If a certain drug regimen gets approved for my myasthenia, I will become a candidate for a pot-a-cath and I'm already kind of squeamish about it. Wishing you that it goes smoothly, and that it helps you a lot. Love, Ariella

thanks everyone for your replies. I think it's partly because I've had an exacerbation of my other condition, tht's been sending me to bed around 6pm. So my internal time clock may be off--a couple of hours of sleep and my body doesn't know what to with that information. Like perpetual jetlag. I'm not otherwise depressed. I probably do have undiagnosed adhd, which could be contributing. Like my brain is on fast forward all the time. I don't want to pursue it now for risk of complicating treatment of my other condition. The sleep apnea is interesting. Don't know if I have sleep apnea, but I have been having frequent respiratory distress associated with my other condition. Possibly that's contributing to me waking up. I'm going to be starting 40mg/day of steroids this week, if my insurance doesn't approve a more effective yet expensive treatment for my myasthenia gravis. That should have me up and running all night:) Loads of love to all of you Ariella

I'm also an atypical case, I have another (autoimmune) condition added to the stew, but I tried acupuncture with someone who is also a medical doctor and he was very gentle about it. It was a disaster and knocked me onto the couch completely for a week. It also brought out the worst in me emotionally, it's hard to believe I'm still married He told me to go the conventional route. The "natural" things I do for POTS that help are walking, and fluid/salt intake and avoiding sugar and processed foods as much as possible. Ariella

Jenn, This is very unscientific, but I used to be a very cold POTSy and mestinon is helping for that. So, if the coldness had anything to do with blood volume, well, I don't know, could be it did somehow help. I never had a blood volume study done. If you decide to try mestinon, be sure to take it with dry crackers and the like until you get used to it. It can be rough on the belly for the uninitiated. When I started, (albeit for myasthenia originally, not for POTS) I was started at a lower dose than I am currently being maintained at. Happy holidays to all Ariella

thanks guys I don't think it's the mestinon. The mestinon actually helps me sleep because it gets rid of the miserable muscle ache I get at night. Mestinon isn't working really well though since my flu shot 6 weeks ago. No literature on that, but this is the way it is for me right now. Maybe I just need a vacation from me?? Happy and healthy holidays to everyone Ariella

Hi I had some respiratory distress last week that kicked off my POTS. Landed in the ER. They took blood of course, and my glucose (fasting--didn't eat a thing that day because of the breathing trouble) was high. This has happened before when my body is fatigued and generally POTSy, and then returns to normal. Anyone with similar experience? ariella

Hi Melissa, Lets try this again--my 3 year old doesn't like when I'm at the computer and she deleted my last reply. I wish I could be encouraging. I had an emg in my right foot/calf and a single fiber emg in my face. yes, my face. The emg in the leg was not fun. I did manage to walk the 3 blocks downhill afterwards for the bus, but was very frazzled. I would take along a friend for moral support as well as the ride. Good luck. I was advised to focus on something during the test for distraction. Ariella

I love mestinon. It was given to me for muscle weakness, not POTS, but has kept the POTS under better control than the midodrine. I stopped taking midodrine. However, had a flu shot about 5 weeks ago, and have not been the same since. I haven't found anything online saying that the flu shot may directly knock out mestinon. The flu shot has been known though to sometimes exarcebate myasthenia gravis, which clearly happened in my case. So, if the MG and POTS are somehow interconnected, well, there you have it. Ariella oh, wanted to add that I take 60mgx5. I know when it's wearing off because I start to feel POTSy.

hi Morgan, Lou Gehrig's is the scary one to think about, it's what one of the first docs who saw me thought I had it. (it's one of the differentials for myasthenia). I think that gets diagnosed with emg's, the mri is just to rule out other stuff. Agreeing with you wholeheartedly about tests tests and more tests. I've had a bunch of closed mri's--I don't think there's an open mri machine in my city. I'm not claustrophobic, but I've heard from claustrophobic cancer patients that the mri was up there on the panic list. By us they give stereo headphones with the music of your choice. I've learned to bring along my absolute favorite. For me it's horrifficly painful to not move my leg for 45 minutes. Ariella