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Lethargic Smiles

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  1. Thanks guys. I'm still pretty confused, but it sounds as though no one is quite clear on this issue, so at least I am not alone, definitely have some new thoughts to research further. I'm especially interested in the kidney issues aspect as I had kidney issues as a child and a family member with kidney issues. The potential hormonal aspect is also interesting to me as I have a history of some of my hormones (although none of those mentioned) being out of whack. My DHEA level at 21 was that of an 80 year old woman. Now it stays level without a supplement. I don't know if this former problem could be related at all to the hormones involved in fluid retention or not as I've never researched this area in relation to fluid retention. Chaos -- Is there any sort of testing people have had done for Renin/Angiotensin/Aldosterone issues, and if there are issues in this area, are there any remedies? I know I've seen this topic covered on threads, so perhaps I'll scour the forums when I'm feeling up to it to learn more. Just to clarify, when I said I drink 1.75 liters of "fluid" in the morning, this includes broth, tomato juice, almond milk, etc., I didn't mean 1.75 liters of purely water in addition the other drinks. I do 24 hour urine screenings sometimes to make sure my sodium isn't being washed out and also electrolyte checks, and so far, everything seems to stay in balance. If I drink anything less than 3 liters of fluid in a day, it results in a flare up of symptoms. Just for whatever reason, on particular days, my body won't hang on to oral fluids, but will easily hang on to IV fluids.
  2. I'm so happy for you!! I'm sorry to hear you had to be hospitalized, but I am happy your situation was taken as seriously by the health professionals as it deserves to be.
  3. If you don't want to read my long post, just skip to the last little paragraph for my bottom line question. Any and all theories, or even a "Hey that happens to me too!" are appreciated! Background: Intuitively, before I was diagnosed with POTS, I drank large amounts of water. I was just always thirsty. Like many POTS patients, upon my diagnosis I was encouraged to up my fluid intake and up my sodium as well to help me hang on to the water. I didn't up my fluid intake too much because I already drank so much, but I did start consuming more sodium. I've had the 24 hour urine collection sodium done, and through that, found out I wasn't getting enough sodium and was likely washing out the sodium I did have with excessive water intake. This was believed to be the reason no matter how much water I drank, I was thirsty and it just washed right through me. My sodium levels are now in the normal range, although still in the middle of the lower end. Current Intakes: I don't like sports drinks and the like because of the sugar and I don't use any "no calorie" artificial or natural sweeteners either. That takes out many electrolyte products. I get my sodium through adding sea salt to food, broth, and tomato juice. Over the first few hours of each day, I get in 2670 mg of sodium and 1.75 liters of water. I drink about another 1.5-2.5 liters throughout the day. I go by my thirst level, by the how often I'm urinating, and the color of the urine. I eat potassium rich foods in order to balance out all of this sodium. Most days, this regimen works for me. I know some don't agree with the sodium regimen. In my case, it has significantly helped me hang on to water better most days. Concern: Some days, I seem to not hold on to oral fluids no matter how much sodium I consume or fluids I drink. I begin to feel dehydrated in many ways despite having plenty to drink. Based on my notes, it doesn't seem to be related to excessive fluid intake the day before or medications. I rarely consume caffeine. Sometimes, it does seem to be correlated to more exertion than my normal low level, but not always. The day following days like this, or sometimes the day of, I end up getting IV fluids. Something that strikes me is that on these days, if I'm not nauseous, I'll drink and drink oral fluids, but they go right through me. I then get 2 liters of IV fluids, and I will not pee for hours. If I end up getting fluids at night, I'll go to bed without visiting the bathroom until morning. I never noticed this pattern until recently because I used to only go get IV fluids if I was vomiting, so I wasn't taking in any oral fluids those days usually. Now I get them more frequently. Bottom Line/My Question: Why, on some days, will my body hold on to 2 liters of IV fluids after choosing to let oral hydration go right through all day long to the point of me feeling dehydrated? I know saline (.9%) is formulated to be something the body easily holds on to, but I don't understand how my body can be so dehydrated that it will easily hold on to 2 liters of IV fluids after having oral fluids available all day long. I would think I'd have to pee after having 2 liters infused into my bloodstream, but I don't.
  4. I thought the Gulf War issue was from a combination of variables, not just Mestinon alone. I could be wrong though. I read a study on it awhile ago where they tried to create it in mice or rats and failed. That's the thing though, I'm not die heart "Mestinon will cure me and you're keeping it from me!!" I am not pressing for my doctor to prescribe it if she's not comfortable, I just want an answer one way or the other. I'm grateful for her not just saying no without researching first. I have tried medications that effect so many other neurotransmitter to varying degrees, but never acetylcholine. I want to give it a shot. Sarah, sorry about your troubles! I will be sending positive energy your way. I don't consider threads to be "owned" by anyone, so hijack away. Plus, when I am researching threads, I am grateful for 1 thread with lots of thoughts/concerns/perspectives rather than 10 different threads to go through! In the most recent measure I did, my heart rate is about 60-65 supine, 70 sitting up w feet propped, 80-100sitting with feet on floor, and 115-135 standing. It depends on the time of day and type of day. I was diagnosed as have sinus tachycardia and POTS. Luckily I can badger my doctor via email. So once a week for the past 5 weeks, I inquire. In our latest exchange she said everything relevant she finds on Mestinon is inconclusive or she cannot access the articles that are relevant and asked if I could provide her the articles I found that made me want to try it. I sent them to her and she said she'd look over them over the next few days. It's been 5 days. Ill email her again Monday. I even offered for her to bill me for the time she spends researching this. Oh well!
  5. What is his objection? Would he be willing (based on the research you provide showing it is helpful) to submit a standing order to the hospital? My GP placed a standing order for 1-2L fluids and I can call the hospital and go to the outpatient area and get them as often as needed.
  6. Sarah -- any updates/insights on the Mestinon? My doctor is sort of dragging her feet on Mestinon. I've been awaiting her final decision for about 3 weeks now! I sent her tons of research, so I'm sure in the end she will let me try it. It is quite annoying to have to beg to try a medication when I'm not 100% convinced it is the answer, it is just something I want to try. Oh well though. I should appreciate the fact she isn't a doctor who just gives whatever medication is asked for. I've been researching plants indigenous people in Amazon rainforests use. I came across one called "Muira Puama" which is most popular for its ability to increase libido and energy. Interestingly, I came across information that said it is potentially an acetylcholine inhibitor. It also is thought to heal nerves. I haven't crosschecked the summaries of research with the actual research articles, so I'm not getting too excited yet.-- I am not sure how reliable examine.com is. Here's the link: http://examine.com/supplements/Muira+puama/
  7. Reading everyone's experiences is so interesting. I'd love to hear more. I'm interested into looking at this as an avenue for not only POTS relief, but for helping out my immune system. I think my immune issues are what makes POTS act up. I have gotten some good control over my POTS symptoms through biofeedback, but my immune system didn't get the memo that I am getting better now. Does anyone care to share the cost of the sessions for the person they went to?
  8. This is very interesting! Thanks for sharing. I loved this little intro into the idea behind TCM and hadn't ever heard it said like this before, "According to traditional Chinese medicine (TCM), “acupuncture is believed to restore the balance between Yin and Yang.” This can be translated into the Western medicine terminology as “acupuncture modulates the imbalance between the parasympathetic and sympathetic activity." I'd love to hear people's thoughts on this report versus their own experiences with accupuncture.
  9. Good call Lynnie, I don't think you'll regret it. I was asked often, "Could I help you?" by airport employees just because I was in a wheelchair. Sometimes in stores, this gets on my nerves, but at the airport, it was more than than welcome! Are you traveling alone?
  10. At most US airports, you get to bypass the security lines if you're in a wheelchair. I couldn't believe it! It made me think of Disney World and how people with disabilities were being paid to pretend to be people's friend's family so they got to bypass lines. They're totally missing out on the this corner of the market! At Chicago Midway, they have a whole special section they direct you to where you aren't rushed or anything. They direct me to this area when was flying at a busy time, but on a less busy day, they let me bypass the line and directed me to the "normal" security area. It was so nice! At Dallas Love Field, I just got to bypass the line. At Dallas, when I got off of the plane, the wheelchair pushing boy said there is an airport policy that he can't pull a suitcase while pushing at the same time. Both hands need to be on the handles of the wheelchair. If needed, he was going to have an additional "helper" come along to pull the suitcase, but luckily I had my Mom with me who could handle it and I put a duffel bag we had on my lap. Also, a family member or friend who is not flying can accompany you to the gate if you're using a wheelchair. At the area you check your bags, they'll give the person a pass after checking their ID.
  11. Chaos, thanks for sharing. Changing around meds is so difficult! It's hard to decide how many/which symptoms (on top of all the ones we already have) we can endure or are "worth it" to be able to see if a medicine helps. It'd be great if in a week or two you came back and updated us!
  12. Janet, this was great information. I only take my BP/HR regularly during medication changes or, like you, when something feels off, so I completely understand not having stats. I'd like to do a weekly poorman's test just to track things, but I don't. Thanks for sharing your experience and sorry things are all mixed up for you as what to do med-wise. I hope something is figured out!
  13. I went to Mayo in Minnesota in August 2012. I wrote about each day and all of the various tests, including the sweat test. At the time I went, I was only a month out from being the most ill I have ever been. I'd been hospitalized for a week and in and out of the ER several times for severe dehydration. Despite the early tests, I felt a sense of mental relief while I was there because I knew I was doing something to help myself. I don't know if you're like me, but if you are, reading about what is going to happen helps, so here is a link to that part of my blog: http://lethargicsmiles.wordpress.com/coping-with-illness/mayo-clinic-experience/ Also, it'll give you an idea of the different autonomic tests available. That's frustrating this trip is such a big deal to you. I found my Mayo autonomic neurologist takes quite some time to return my phone calls. Sometimes it take a few weeks and I will call to check in and see if he got my message, then he calls me that evening or the next day. To his credit, despite not seeing me in a year, he still will spend quite awhile on the phone with me answering all my questions. He's done this 3 separate times. I always offer for him to bill me for the time and he says he doesn't know any doctors who would do that. I wanted to say, "You don't know any good, caring doctors that would do that!" It's so much easier said than done, but my advice would be to try and not let the stress of going there consume you and make you feel even worse. Think about the things you can control, and plan those things, and push things you cannot control out of your mind and know you're an experienced POTSie who will know how to deal with issues as they arise. Generally, when we keep going over and over the same possibilities in our head, it really stresses the system as our brain thinks something is actually happening that it needs to be up in arms about. I think you will be happy you went and feel empowered with the information you gain from this. You're a really strong person for continuing to search for answers! How are you traveling to get there -- it sounds like airplane? If you are traveling by airplane and could use some tips, just let me know. I've traveled to Dallas and back twice this year. It's not ever easy, but I feel I've sort of mastered it. Is someone going with you?
  14. I'd like to be off of the beta blocker, the sooner the better. I believe I could be on a lower dose of Midodrine without it since I have to lower my Midodrine dose if I have a day where I take less beta blocker. I also think it makes me more fatigued. Unfortunately, I may still need a bit of beta blocker because, prior to any sort of treatment (fluid loading, salt, etc), I had tachycardia even at rest (unless I am supine). I suppose we will wait and see what happens. My proposed game plan is to go back to the beta blocker, give my body a rest and let it get back in its groove with that, then add Mestinon according to what is outlined in Dr. Grubb's article and monitor closely. We'll see what my doctor says. Thanks for all your support!
  15. Alex has drawn my attention to Mestinon as a medication to talk to my doctor about. I plan to do just that. I read the research and checked out some old threads on it. I've got the e-mail with articles attached, ready to go. However, there is one area I am fuzzy on which is what to do about my beta blocker. My doctor consults with my Mayo Clinic doctors as needed, but also takes my research seriously, so knowing other people's experiences will be really helpful. I'd like to hear about people who took a beta blocker along with Mestinon. From my understanding, Mestinon doesn't effect the resting heart rate quite so much as it effects the standing heart rate. If this is the case with me, I'll probably need a bit of beta blocker for days my resting heart rate is tachycardic. Any stories are welcome and will be helpful. Specific questions I have are... Did you need to decrease the amount of beta blocker after starting Mestinon? If yes, did you do this right away or did you wait to see how Mestinon effected you? Did you find it effected your resting pulse? How long was it before you saw the first signs of benefit (or lack thereof)? If you know your dosages, that is always helpful as well. Thanks in advance for your time!
  16. I am allergic to gluten. I am severely intolerant to egg and dairy, moderately to soy, and mildly to poultry. I do heart rate variability training and if I have been "glutened" it shows. There are many spikes in my heart rate, I won't be able to get nice, smooth waves (this of course can also occur on days I haven't been glutened), and the variability window is small. I thought it was interesting. When the biofeedback doctor saw and asked what had happened since she saw me the previous day (a restaurant glutened me), she seemed impressed with the powerful effect gluten had on my body. I have hated the goat cheeses I have tried, but some people who are unable to handle the type of casein in cow milk, can handle the type in sheep/goat cheese. The sheep/goat cheese has the same type of casein as breast milk. I also read pastuerization can destroy components of the milk helpful to digestion. Desperate for some cheese and after I got over the idea of "sheep cheese", I tried out some unpasteurized sheep cheese. I didn't look 3 months pregnant like I do with cow milk and there was no feeling of fullness. I bloated a tad, but not enough to bother me. It also backed my GI system up a bit. I wasn't able to breastfeed either despite my Mom trying to eliminate everything she could think of, so it makes sense my body wouldn't tolerate dairy from any other mammal either. With this experiment, I concluded when I just have to have cheese, unpasteurized sheep cheese is better than pasteurized cow cheese, but in general, I am someone whose body would prefer no dairy! Anyways, sorry for this ramble. Just thought I'd share my adventures with cheese! I'm with ya on the wonderful labs. I don't want to have a disease, I just want to know what whatever disease I have going on is. If the labs were done correctly, I just try and be grateful for having that aspect of my health and check another thing off the list!
  17. Alex, I looked over all of those abstracts and downloaded a few of the full articles through my library. It seems like a drug I'd be crazy not to try it because, as you said, for some POTSies, it does exactly what I'm asking about. If it doesn't work, nothing lost and I can check another treatment option off the list! I'm going to compose an e-mail to my doctor and see what her thoughts are. She's pretty open and says, so long as it isn't something that'll kill me, she doesn't mind trying things if I don't mind enduring them. I'm suspecting I am going to discontinue the Clonidine. Perhaps I will get back on my beta blocker for a bit and let my body rebalance prior to trying Mestinon. I wonder if I'd taper down the Propanolol as I increased Mestinon or what. I'll have to research that or maybe I can see what has worked for others with a bit of forum searching.
  18. Oh my goodness! I'm so annoyed, I typed out a really long response to everyone and my computer just shut off and lost it. Computers have no empathy for our dysautonomia suffering. Thanks everyone for your ideas and I'd love to hear more people's experiences. We're all so different, and there's so many things out there being tried on us to see if it helps. Alex -- Thank you for taking the time to share your story and thank you for all of those links. I plan to look at every single one of them and I really appreciate the energy you saved me by sparing me hunting down articles and discussions myself! If I'm lucky and it works for me as it does for you, I'd be so thrilled!! I'm happy to know about the potential initial side effects ahead of time because they may freak me out a bit otherwise. I'll look through those first and then see if I have questions. Corina -- I wonder if it making you warm has anything to do with better circulation? If it does, maybe it'll allow me to achieve my goal hand temperature really fast when I do biofeedback! If it made me toes get some circulation to them and warm up, I'd be stunned. I tried a few SSRIs and SNRIs and always felt like a zombie, but that is amazing they help you so much. It was about 4 years ago I last tried them and I wasn't as symptomatic as I am now, so perhaps I should consider trying them again. Looney Mom -- Thanks for the tip on the XR dosing. I'm concerned about if we'll be able to increase my dose enough to help my standing heart rate since my supine heart rate last night was 50. I felt fine at that rate, but I don't know about too much lower because I don't think I've ever experienced it. My great hope was to be able to eventually get to wearing a patch so I'd have a constant supply coming in. Yogini -- Thanks for your thought out response and sharing your knowledge. My heart rate is what I believe keeps me from being able to be upright too long without getting extremely fatigued. I also think the ANS response to my heart rate, triggers my immune system. As a result, if I dare be up too long without careful planning, I wind up in bed with all my immune symptoms (lymph node swelling/fever/worse than normal fatigue). I'd say I feel best when my blood pressure is above 98/55 but below 115/75. My blood pressure all on its own without any medications used to roughly be 105/65 supine, 95-105/63-70 sitting up, feet on the floor, and 85-100/60-65 standing. Of course who knows what they'd be now that I've been medicated for over a year.With the beta blocker and midodrine, it tends to be 100-110/60-70 standing and 105-115/65-75 supine.Today is only day 4 of the Clonidine and I can tell my body is definitely still adjusting to the medication. Over the past 3 days, I had readings as low as 85 and as high as 125. I'm noticing the bottom number typically seems to be staying above 75 and below 81 which is higher than normal for me. Today, the readings seem more balanced than they have in the past 3 days with a sitting in the recliner with legs up reading of 110/76 and standing one of 101/72.In my case, I do have to adjust Midodrine with my beta blocker although I know that's not true for everyone. If I don't and just take it as I normally would, I end up with hyper or hypo tension. I used to wear compression stockings because my feet would feel heavy within seconds of standing and within a few minutes, start to turn dark red, then purple. Thanks to biofeedback providing me with improved circulation, my feet never feel heavy anymore and my blood pressure acts the same as it would if I had them on. They only start to show signs of pooling when I've had them down (not propped up) for a few hours. This hardly ever happens because unfortunately, my level of fatigue and my immune systems keeps me at rest. I wore them for about 16 months (thigh high) and do not miss them one bit. They were very helpful and I recommend them, but I'm so grateful I don't require them anymore. I think you're right it may take a combination of medications and/or treatments to help me. At the moment, I'm not sure if the side effects of beta blockers in general (although I know not all are exactly the same) or Clonidine are worth it or would be beneficial in combination with other medications versus just not being taken at all. My resting pulse is lower, but that isn't what I'm seeking medication for. None of it is helping decrease the size of the heart rate jump or in decreasing the standing heart rate enough for me to notice any benefit. However, I know a tachycardic heart isn't as efficient, so maybe it is worth it for the 10 or so beat decrease I get some days. It's a tough call and we are all sort of like guinea pigs when it comes to figuring out what works and what doesn't!
  19. I'd love to learn more about your experience with it. If you can get back to me, when you're feeling up to it, on things like how long before you saw benefit, dosing, and any side effects, that would be wonderful, but no pressure! I will definitely do some researching when I am feeling up to it. I hope your headache goes away.
  20. I got back the results and they were all in normal ranges. (N-methylhistamine: 157mcg (30-200), tryptase: 3ng (2-10), PGD2: 159ng (100-280)). I didn't know to have heparin checked, so that was not checked. There was a creatine check to make sure it wasn't too diluted of a sample and that was good as well. I was never 100% convinced I have MCAD, however I am 100% convinced I have some sort of immune system problem based off of my symptoms. When I read Dr. Afrin's papers I could check a lot of the boxes as I mentioned above. I wanted my body to be doing its own natural thing at the time of testing, no matter what research has shown does or does not effect the test, so I'd never wonder "What if I had ______." Other than Midodrine, my beta blocker, Adderall, birth control, and Ambien, I didn't take anything. That left out several supplements, my nightly antihistamine, and Singulair. A few days before the test, I ate a little bit of foods I'm intolerant to just to try and make sure my system was revved up. It felt so strange to be TRYING to give my body a hard time. I kept the urine in the fridge. If I added a large volume to it, I'd set it on top of a giant ice pack in the fridge to make it cool down more quickly. I transported it on ice. Anyways, there are a two things that make me second guess if the tests are right. 1) My lymph nodes (the main symptom I think would signify MCAD flare) actually behaved themselves! 2) The nurse was really flustered by the unusual tests. I wish I'd printed out the instructions from the lab's website to hand to her. At one point she said a sample that I know should be frozen, could be room temperature. She had the urine at room temperature for the 15 minutes or so I was back there and assured me she was about to put the urine in their containers and then in the fridge/freezer. I hope that is what happened. I felt awful and wanted to get out of there (it was an hour drive), so I didn't stay to watch. Anyways, I'm just leaving it for now. My doctor said she'll re-order testing anytime so perhaps, when I get what could be a MCAD flare, I'll have her do that. In the meantime, I'll get a 24 hour urine collection container to have so I don't have to travel to pick it up! Thanks everyone for your input throughout this!
  21. I am wondering if anyone has had an experience with a medication or supplement or treatment approach where it didn't just lower the standing heart rate, it also decreased the beat per minute increase comparing supine with standing. What I seem to be experiencing is medications can lower my heart rate overall, but the amount my heart rate jumps is still about the same. I'd love to hear your experiences as well as any side effects you experienced. I know there's many side effects I'd put up with if I could stand longer and/or exercise! If you just want to share your experience with me and aren't interested in my own experience (no offense taken), just skip over the rest of this post. I haven't gone without heart rate/blood pressure medications in awhile. Without meds I'd say my normal heart rate measurements are: Supine heart rate: 70sSitting up with feet propped up: 80ishSitting up, feet on the floor: 90-100Standing: It depends but I'll say upper 120s/lower 130s.Propanolol I took Propanolol 10mg 2-3x/day for about a year up until a few days ago. Here was my experience on a "normal" health day about 2 hours after taking the medication. Supine heart rate: lower 60sSitting up with feet propped up: upper 60s/lower 70sSitting up, feet on the floor: upper 70s-90Standing: 110-130Pros: It is very fast acting which is wonderful if I suddenly realize I need to take some extra. It does lower my overall average heart rate. Cons: As far as side effects, it did lower my blood pressure which is a given with beta blockers. I take Midodrine for hypotension and I know I could be on a lower dose if I wasn't taking blood pressure lowering medicines. I also think it makes my fatigue a bit worse. I could really feel it wearing off which I never liked and on "bad" days, it was like I'd taken nothing and my heart rate would act how it does without meds. Clonidine It's early in the game for me to draw conclusions, but I am still sharing as it is this experience that lead me to post this! I'm currently trying out Clonidine and this is day 3. I'm starting out at .1mg 2x/day. and again, based on heart rate 2 hours after taking the medication. I know many recommend the patch, but I've got to get through figuring out a dose with the pill before my doctor is comfortable with a patch. Supine heart rate: upper 50s/lower 60sSitting up with feet propped up: lower 60sSitting up, feet on the floor: upper 80s-90sStanding: 120-165Pros: I don't feel a crash like I did from Propanolol because it is longer acting. It doesn't worsen my fatigue at all. It helps with my resting heart rate. Cons: My standing heart rate is going up to 165 which, in my experience, it doesn't do without medication. I have been having some pressure in my head since Day 1, and as of Day 3. It is tolerable most of the day, but toward the end, it is not. I feel like I can't think fluidly and it is really bothering me since I already have brain fog and fatigue. My mouth is quite dry, I thought I knew dry mouth from other meds, but wow! Yesterday, my blood pressure tanked to 87/67 which I correct with some Midodrine. CoQ10 I took this because some people reported benefits (cannot remember dose). It didn't lower my blood pressure which for me, is a good thing. I didn't experience any of them and felt more fatigued than normal. Exercise Per Mayo Clinic's advice, I did the recumbent bike and weight machines 5-6 times per week. My goal was to get to 45 minutes of exercise, but I never got there. I started with 5-10 minutes and worked my way up to around 15 on the bike and 20-25 of weights. Pros: It is a non-medication route. I did benefit from gaining back some muscle I'd lost. Cons: I did this consistently for 4 months with no changes in heart rate measurements. I actually started the beta blocker during this time because the tachycardia got too much to tolerate. I can really only do one thing a day, so exercise was my thing for months without any benefit to my condition that I could see. For me, this required traveling to a gym (since I was doing exercise exactly as Mayo suggested), so some days, I had to wait until someone could drive me if I wasn't up to driving. I know many people try several drugs/approaches before finding the right one for them, but it sure is frustrating! Maybe an off label use of a medication where a side effect is frequently bradycardia that could benefit those of us without high blood pressure and just want control of our heart rate. I wish Ivabradine was available in the US!! At least then, even if I still got the POTS spike in heart rate, I wouldn't be taken a medication that lowers my blood pressure and taking another medication to increase it.
  22. To me, this sounds like a good reading, but everyone is different. Is this lower than your normal blood pressure? If it is, and you're feeling more symptomatic, perhaps you should consult your doctor. Way back before I knew I had POTS and thought I had CFS, I mentioned to a doctor I noticed my blood pressure readings seems on the low side. They'd tend to be 96-105/60-70. She said the blood pressure a person feels best at can vary from person to person, so if it isn't clinically low, doctors tend to just go off of symptoms. If the patient isn't showing symptoms of low blood pressure (dizziness/weakness), doctors tend to not treat it even if it is on the low side because while one person may feel awful at 95/60, another person may feel wonderful.
  23. I follow the blog of someone with "floaters" who also has dysautonomia. Here is her blog: http://zebrasoup.me/2013/06/03/visual-snow-what-is-this-neurological-disorder-all-about/ I'm so grateful for blogs and forums like dinet connecting all of us and helping us figure out how symptoms are (or aren't) related!
  24. I think the answer for some may be yes for some people. I follow someone who has Lyme and also has/had POTS. She has tried several treatments and with her most recent treatment, she finds many days she no longer has POTS! Here is her blog: http://decimawho.wordpress.com/ I've done quite a bit of research into Lyme disease. If you only had the ELISA test, you might want to consider asking for a Western Blot. A traditional, run of the mill Western Blot would be better than only getting an ELISA which by some estimates, is only 50% accurate. The common protocol is if the ELISA is positive, a Western Blot is run. If the ELISA is negative, end of story. Many people suffering from Lyme, as well as Lyme Literate Medical Doctors (LLMD), are strong proponents of getting an igenex (name of the lab) Western Blot test for Lyme. The traditional Western Blot doesn't check for as many bans as the igenex. There is huge controversy over whether these bands are significant or not, and I'm not going to get into my thoughts, but I just wanted to clue you in. Often, LLMDs don't bill insurance. Since the government doesn't recognize Lyme as a chronic disease (it is typically believed it can be completely taken care of with a few weeks of antibiotics), often insurance won't pay for treatment and doctors have even lost their license for treating it as a chronic infectious disease. If you're wanting to learn more about Lyme, I recommend watching youtube videos. Of course don't take everything on youtube as fact and fact check with a reliable source, but there are many well put together videos that can explain the ropes of this complicated and controversial disease to you!
  25. I used to only get IV fluids, like you, when I was extremely ill. If I hadn't kept down water in a day and I was in pre-syncope, I would decide it was time for fluids. My thought process was to merit hospital personnel and sticking an IV in my arm, I had to be feeling awful. I still feel about the same on hospital personnel which is why I have a standing order. This allows me to schedule (different hospitals are different, but the one I live by now only needs a few hours notice) an appointment and not take up an ER bed and ER staff. If it is outside of the outpatient business hours, I go to the ER. As for the sticking and IV in my arm... all that is going in is sodium and water. I do much more unnatural things to myself in the form of the medication I take throughout the day. I now go in as a preventative measure when I find myself in situations I know will lead to dehydration or presyncope. I wrote a whole blog post on my experience with IV fluids (getting standing order/dealing with hospital/when I know to go, etc...) and experience at different hospitals. I need to update it to include a bad ER experience recently where they wouldn't honor a standing order, but other than that, the standing order has made life much easier. I don't have to explain my POTS, the nurse can just start the IV and I can rest in peace. Here is the post: http://lethargicsmiles.wordpress.com/2013/09/15/getting-iv-fluids-for-pots/
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