lalalisa

Laura, That make sense, thanks! I appreciate your help, Lisa

Angela, Thanks for the advice. My dr. let me know when I asked him about this med that he had never prescribed it before. (to anyone) It's frustrating to me that he wouldn't ask other dr's about how to go about it! Thanks, Lisa

My dr. called in 180 mg's XR....from reading the other posts this sounds like a big dose to start with! Anyone else taking a similar dose? Lisa

Melissa, First of all, I'm glad you are ok and that youre home safely. That was quite an episode! How scary! I can't believe that they let you walk by yourself to the bathroom and that you fainted again....yikes! I hope you improve quickly. Also, I hope you find a good dr. in the area -- what a time to be looking for a dr! Thanks for letting us know about your ER visit, Lisa

My dr. just called today and said that he wants to give Mestinon a try (I had given him articles about it about a month ago). He is calling in the XR's - not sure what dose yet. I'll try to let you know how it works for me. Lisa

Hello, I'm also looking into taking Procrit. I'm scheduled for a blood volume test in November to determine if I need it and also try to convince my insurance co. to pay for it. My understanding is that a normal hematocrit level doesn't necessarily mean that your blood volume is OK. (Meaning you could still have low bv with normal levels) (I do not know about the risk of blood clots) Hopefully some others on the forum will know more than I, Lisa

Ling, Congratulations! What wonderful news about this new life inside of you!! We are excited for you! Thanks for sharing this news! Lisa

I'm pretty sure "sleep disturbances" are listed as a symptom for POTS. I definitely deal with insomnia -- it's one of the most frustrating symptoms! I've been taking Lunesta 3 mg - but still have some trouble getting to sleep at night. I don't really know what biofeedback is either. Wishing you lots of restful sleep, Lisa

Sorry youre having such a difficult time! Sounds frustrating! I really hope that your trip to Vanderbilt will be helpful for you. Hope you have some better days ahead, Lisa

Dawn, Please let us know if you find something that helps. Have a good week, Lisa

I think SSRI's are at least worth a try. It's amazing how different each pill can make each person feel though. There's definitely not a pill for everyone! For me Paxil CR has worked well. Also, the Controlled Release helps people who tend to get side effects such as weight gain (somehow they don't get a surge of medicine at any point which helps). I sleep better and feel calm and much more like myself while taking it. One more thing -- I only need the smallest dose and I went on it very very gradually. I think going on it gradually is probably wise with any SSRI. Hope you find something that helps - keep us posted, Lisa

Thanks for your support! Knowing others of you are helped by similar medicines is helpful. Also, thanks for the reminder to be thankful that I have found some meds that bring relief / help to my health situation! Thanks again, Lisa

Hello! First of all welcome! The diagnosis stage is a difficult one- we've all been their though and hope we can encourage you through this. We all have different stories. The good news for you is that you sound like you have a dr. who knows what POTS is. (that is a great place to be!!) Many dr's use the Tilt Table Test as one of the main diagnosis tools. Have you and your dr discussed this test? I hope you find encouragement here and that you learn lots of helpful information also! Lisa

Hello, I posted at the beginning of the summer as i slowly went off of Paxil CR(I had been on it for 2 years without any disturbing side effects). (I was excited to be off a med because I feel like I'm on so many) I originally went on it because some dr's suggested that it could help my nervous system to function better, and also because I was dealing with lots of extra adrenaline and anxiety. I was fine this summer as far as the anxiety is concerned - Overall though I felt worse than usual. I haven't slept well and had to go on a sleeping pill. I'm been much more weak and my stamina is down. I am now going back on the Paxil CR to see if this was in fact helping my nervous system to function better. I was hoping to be off of another medicine -- but it just seems to make sense that I try it once again to see if it really was helping me in these ways. I'll try to keep you posted. The bright side to this is I have had a few weeks with more intense anxiety lately and these will soon go away. Thanks for listening, Lisa

Thanks for your replies and ideas. I pretty much have to journal because my brain is so foggy that I can barely remember what my day was like the day before (much less the week before). Kitsakatsa - I appreciated the specifics you gave regarding your journals and data. Great ideas! Thanks and keep the ideas coming! Lisa Poohbear, Go hokies! (are you from VA?)

Roselover, I hope you feel better soon! It is so difficult to be sick all of the time -- then when we get even sicker (than usual) it's hard not to get discouraged. Good to see you on the board. I hope you improve quickly! Lisa

Hello! Recently I've been making an effort to be more faithful in journalling my symptoms. (Lately I've had many new symptoms along with some old one returning) I seem to have a journal for sleep patterns, blood pressure, overall how I'm feelings, stomach issues, etc. I'd like to somehow combine these together. I really want to be able to see how I change as I journal. Whether it's starting a new med and keeping track of how I react to it to just how hungry i've been and practical things like that. Any ideas? I have made an excel spreadsheet to keep track of my blood pressure. I would also like to come up with some sort of graph that keeps track of my energy levels, etc. (I'm thinking of pinpointing my energy level with a number on a scale from 1-10 with 10 being energetic) This probably sounds confusing but any ideas would be greatly appreciated! Thanks again, Lisa

Melissa and Jan, Thanks to both of you!! My pcp is looking into prescribing this drug after reading over the articles you posted for me. Thanks again! Lisa

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All I've found so far is this (it's actually from potsplace.org): Mestinon (Pyridostigmine Bromide) has traditionally been used to treat myashenia gravis, but is now sometimes being used to treat POTS patients (Grubb, 2002). Mestinon works by inhibiting the breakdown of acetylcholine. Acetylcholine is the main chemical messenger of the parasympathetic nervous system. Some POTS patients may have immune systems that are mistakenly making antibodies that are plugging up acetylcholine receptors (Grubb, 2002). Mestinon works to unplug these receptors by allowing more acetylcholine to remain at the neuromuscular junction.

Rita, Thanks for your summary of your visit to Vanderbilt. I am considering going - but I'm pretty nervous about being admitted to the hospital for such a length of time. A few questions: Did you have a tilt table test done? How long were you in the hospital? I was on Paxil CR for 2 years...It helped my anxiety and i think it also helped with my nervous system. I went off of it this summer and i've been feeling much worse. I'm going back on it this week to see if it was in fact helping with my nervous system. Please keep us posted as to how / if it works for you. Glad you had a good experience. Hope the meds, etc. help you! Lisa

Welcome back Kite! It sounds like you had quite an eventful summer! Where did you move to? Lisa

Hello, I have a dr's appointment on Thursday with my family dr. I am hoping to take some articles/info to him about Mestinon --- and hoping he'll prescribe it for me. Does anyone have any good articles about how it helps with dysautonomia? Thanks!! Lisa

I also have nausea -- mine seems to come and go for weeks/months at a time. Bamagirl -- you mentioned that you itch when you are more symptomatic. I've been experiencing this recently too. I never thought it was related to this illness but I guess it may be....interesting. Lisa

I agree with many of the posts. Especially regarding "staying connected" with people. (via cell phones, etc.) I enjoy listening to music. I find that if it's completely quiet for too long I feel kinda "buggy". Then on the otherhand a little peace and quiet is good at times. It sounds like many of us are home alone along with you! Lisa