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Oh my goodness, Wmtate, that sounds horrible. TCP, I'm not sure if my experience will relate to what you have planned because mine was administered in the 'traditional' way as a local anesthetic. I think if I remember from other posts that you will be getting it intravenously? It was for a punch biopsy on my lower leg. I 'blacked out' just seconds after it was injected. I was perfectly calm and talking with the physician and apparently stopped abruptly, was gagging, full body sweat, no idea where I was, etc. I think my blood pressure went really low but was too out of it to remember what they said it was. They initially thought seizure, but since most feel it was vasovagal syncope or the lidocaine went directly into my bloodstream, which it is not supposed to do when being used a local numbing agent.

I also prefer Gatorade (only the 'Frost' kind) and appreciate the calories that come with it. Water is very tough for me... just don't care for it much. Stefanie - are those Thermotabs? I'm trying those, but never thought of dissolving them! They're pretty hard to swallow. Chaos - the NUUN tablets sound interesting, thanks. I've never heard of them.

I'm sorry to hear about your daughter's struggles, June. I have struggled off and on with unwanted weight loss, even prior to my recent presumptive diagnosis. I have always had a low BMI and some GI issues here and there (no diagnosis). Loss of appetite was one of the reasons for the weight loss in my case. Over the spring/early summer of 2013, however, I changed my eating habits, trying to consciously gain weight. I was drinking lots of protein shakes and trying to eat bigger portions. This hardly made any difference. Now that I have an idea of what's going with me, I realize I was doing all the wrong things. I have recently gained some weight after switching to the high salt diet, eating 5x a day/grazing, eating slowly, etc. I also broke down and went to a naturopath (something I had never tried before). He gave me numerous supplements to help with digestion, protein absorption and adrenal fatigue. Apparently the numbers he looks at were all pretty off for me. I'm still not 100% sure how much the supplements did or didn't help. Best wishes for getting your daughter the help she so needs! I have experienced that being underweight is a pretty lonely place... most people don't want to hear about it or make unkind jokes and don't understand how it can affect one's health.

I also use fingerless gloves a lot, even at work. Have several kinds of hand warmers as well for when I'm freezing/Raynaud's flares. I have space heaters in several rooms at home. When I swing to the too warm side, it's harder to manage but that usually occurs in very brief spurts or in the middle of the night. Sounds like pink1975 has the organizational things down a lot better than I do though! This is where I need to improve for the sake of my job and my children. We use shared Google calendars to keep track of all the scheduling stuff. I'd be sunk without that tool. Recently found an awesome brand of performance toe socks that I wear all the time at home now and at work if I'm wearing dress boots. They are like gloves for your feet and really help me with my temperature issues.

Tough one. As dkd said, I guess everyone's different. I am very wary of these local anesthetics but I had a terrible experience with Lidocaine that kind of started this whole mess for me. I need a gum graft done and I'm avoiding it at the moment.

JuneFlower - thanks for that info, it's nice to know others have done the Igenex route and other parts of the 'gauntlet.' Christy - thanks for all of that background info! I am getting a bit more curious about the EDS issue, but kind of afraid to ask my primary for a referral.

Bigskyfam - well, I never got the exercise restarted... yet! I got so busy with the beginning of the semester at my work and then I got sick. The other things I was doing did seem to be helping. So I was just starting to feel like really going after regular exercise again. I feel like I have to keep climbing out of a hole and starting over. Right before I had my initial incident, I had been really trying to exercise, including training for a long fitness hike, as well as gain weight. Then I lost the little bit of weight I had gained and was in and out of bed. Now I feel like I'm back at the starting block again!

Hi, I'm coming to this conversation late after the bump. I work part time, 3 shifts a week normally. I also have two toddlers. We do need my income. Overall, I feel that it is a good thing, but some days are hard. I work as an adjunct reference instruction librarian at a college, so my work environment can be very different depending on the day. Sometimes I am sitting a desk a lot, sometimes I am teaching in a classroom, sometimes I am getting up and down repeatedly. Yesterday was one of my hardest days since my generic diagnosis. I have been sick for the past two weeks and I guess it messed up all the lifestyle things I had been doing to manage the dysautonomia. I ended up having to explain or partially explain my issue with several co-workers and it was kind of tough for me to do. I feel embarrassed. And one person interrupted me right away and asked if it was anxiety :-( Aargh, that was tough to swallow. But my boss has been quite supportive after just telling him recently and I tried to focus on how strong I was to work my whole shift - including teaching a class - yesterday while feeling nauseous and lightheaded and out of breath. Anyone have tips on what to say to people who are dismissive, like the anxiety comment? Afterward, I just wished I would have said something... hard to think fast when one's head is pounding!

Hi JuneFlower, thanks for weighing in on my particular mystery situation! I don't know what to believe in regard to the Lyme issue. My appointment for the Igenex blood draws is this coming Monday. My primary provider is connected with a hospital system that has an infectious disease specialist group, and the cardiologist said she "did not disagree" with my seeing them but I am reluctant to pursue that since I know they will not want to do much considering my two negative ELISA Lyme tests. I have looked into EDS more due to other members' suggestions and I do feel that I fit the profile for it in some ways. I am stumped as to how pursue testing for this. In general, I am struggling a bit more than I had been recently. I have been sick with some chronic cough/asthma/sinus thing for two weeks now and it has thrown me off the good habits I was trying to cultivate to lessen the autonomic problems. Still very thankful for this forum to turn to for info and encouragement.

Unbelievable! Thanks for the bump, ramakentesh. I came on the forum specifically to search for Sudafed just now and found this. I have been struggling with some sort of sinus problem for the last few days (I get this every year since I was a child) and broke down and took some full doses of the Pseudoephedrine kind. I used to avoid this drug or take only half doses because it used to make me very jittery and cause my heart to race. But that was before I developed these autonomic dysfunction symptoms... I have felt much more like my 'old self' yesterday and today and I couldn't figure out why, especially since I have barely slept the last 2 nights. So I started to wonder about the Sudafed and if it was helping with blood flow and blood pressure. I really like how I feel, but I am worried that it could be damaging and also that it is affecting my appetite, which is a major concern for me.

I'm glad to hear that your husband is super supportive. My spouse also helps me very much, though sometimes it's hard because he hates doctors and medical issues. I know he is trying really hard to help now that I have at least a semi-diagnosis! I empathize with what you said about insurance, since neither my spouse nor I have health benefits through our employers. I also hesitate to tell people anything about this, even if I'm feeling extremely lightheaded or symptomatic at the moment I'm talking to them. It feels awkward to explain and I also fear being dismissed as weak or anxious. Reading your reply to SparrowKate, I see that we have similar eating and weight characteristics. I have always had a very low BMI, but experienced my lowest point last year right before all these other symptoms started. I had started trying to gain weight but the things I was doing didn't seem to be working. Now that I've started some of the natural recommendations for dysautonomia/low blood pressure, I have actually gained weight (plus I'm trying supplements from a naturopath). Yes, I would love to have some curves, too, lol. Hope we can keep in touch since we seem to have some things in common.

I also experience something like this at times. Jumpy feeling or startled for no reason, happens when completely calm, not feeling anxious. Do you sometimes run into things, too? I wonder if it's connected in some weird way. The body overreacting in one area causing other areas to under react? Or maybe it's just the brain fog and unsteadiness...

Welcome MomWithPots. Many of sparrowkate's suggestions above are just what I am doing currently to try to manage my symptoms (which are more mild than many others on this forum). The grazing/snacking method of eating has really helped me. Also drinking Gatorade or carbonated beverages. I definitely understand some of your feelings as a mother. My inability to 'keep up with' my two toddlers some days or even play with them like I feel I should was and sometimes still is very difficult. This is also what motivated me to keep pursuing help from the medical folks even though I wanted to quit. I don't like going to doctors and the expense is difficult for my family but I kept reminding myself that I had to do everything I could to improve how I was feeling for my children's sake. One thing that's been tough is that my 3 year old starting really acting out during the times that I was feeling the worst. I'm not sure if she was angry because Mommy wasn't her usual self or if she was anxious about it - or both. The brain fog issue is one that I haven't been able to figure out either. It can be very upsetting as a mother and as an employee. I am interested in any tips for that symptom as well! Yesterday I bought a coffee at work and got sugar/creamers and then walked away without the coffee. Didn't even notice until later in my shift. So embarrassing. I have never done things like that in the past! Do you have a good support system outside your spouse (since he is away so often)?

I know I am biased in this area... since I am a librarian ... but want to thank you for this idea, Carrie, and for putting the poll out. Will be interested to see if the idea takes off and would be willing to help if needed in the future!

Wow, IceLizard, I'm so sorry to hear this bad flare up! I am glad you had a better day today.

Thanks again, Chaos. There are so many similarities across the autonomic dysfunction and autoimmune spectrum of disorders. It is heartening and at the same time overwhelming to learn about the specific syndromes and see so many similar symptoms to what one is experiencing. I have an open mind to do my best to follow what my medical providers have thus far recommended while also still being my own advocate and seeking for the underlying cause of my dysautonomia difficulties.

Hi again Chaos, How were you diagnosed with EDS? And is it clearly in your family? My sister has Myasthenia Gravis, but I've been told that isn't a real factor. Yes, I have a 2 and 3 year old ten months apart... In other words, life is crazy! Developing these health issues while parenting them and also finalizing their adoption has been a bit challenging. Hence your username... Chaos, lol

My one doctor kept mispronouncing it repeatedly during a visit. That made me a little skeptical of her knowledge or lack thereof!

Hi Raisin and welcome from another newbie. So sorry to hear about all that you have gone through. You have had far more testing than I have so I guess I'm not much help there! I had very slurred and then slow speech after my initial VVS episode and was very scary.

Yes! This is one of the things that I have struggled with frequently. So interesting to hear of others' experiences and solutions. Some days I am sitting a lot and it took me a while to recognize that I was much more symptomatic on those days. I also have struggled with driving and was going to ask if others had experienced that. The shakiness is so difficult because I'm afraid it comes across as nervousness or anxiety to others and it is hard to explain.

Chaos & MomtoGuiliana - thank you for the really helpful info about being diagnosed without the TTT! I feel a lot better about skipping it for now. Chaos - thanks also for pointing out that connection to Ehlers-Danlos. I had looked at that briefly in my own research but never caught the slow healing connection. I don't seem to have any family history for ED and so I sort of discounted it. The punch biopsy site has also been very slow to heal. What you described for post-hypotensive episodes was very similar and it's nice to know that this is a common reaction of the body to such an experience. Trev425 - so much great info on the Lyme controversy, thank you for taking the time to relate your knowledge! I've done some pretty extensive reading on it, too, and have found it quite confusing to say the least. I think I am going to go ahead and have the IGENEX tests done for my own peace of mind. I was given a short course of antibiotics a couple weeks after the bite and I am a little fearful that this may have interfered with the ELISA tests. Thank you for offering your time for future questions - I might have some :-) Aeris5000 - that was a really helpful perspective on cardiologists vs. neurologists, thanks! My cardiologist suggested seeing a neurologist to rule out seizures but not really for the dysautonomia stuff. I haven't pursued this yet. Will try the non-pharmaceutical regimen for a while first I think and then see how I'm doing. It is so interesting to me that Mestinon is a drug used for this class of disorders because my sister, who has Myasthenia Gravis, relies on that drug.

Wow, thank you so much for the warm welcome - and all the wonderful suggestions and experiences shared. This is so very helpful. I have tried to think back before the "start" also since several medical folks have asked the same question. At first I said no, but there are a few things like headaches, eating difficulties (including unwanted weight loss) and very cold extremities that I did have before the lidocaine episode. Yes, think I am going to have the full battery of tests done for tick-born infections just to be sure - for peace of mind mostly!

Hello everyone, It's a new year and one of many new things I've decided to do is to actually participate in a forum such as this (instead of just 'lurking'!) I am so grateful for all that I've learned just from reading and using the search box. I was recently diagnosed with general dysautonomia issues. I wasn't even sure if it was a formal dx at first because of how casual the cardiologist was about it, but I wasn't surprised either because it was one of the primary conditions I suspected from my own research. I'm a librarian... can't help myself :-) I was told that this is "the million dollar diagnosis" and I completely understand why after my own experience with the doctor/testing merry-go-round. Neither the cardiologist nor my GP (who is an NP) want me to try any medications at this point. Increasing fluids, salt and restarting exercise are my orders for now. They also don't want me to do the tilt test, because they say the results are not reproducible and that their treatment regimen would not change regardless of the results. Wondering if any of you heard this at initial dx? The initial event that directly preceded my health decline was an episode of what I've been told was either vasovagal syncope or a physical response due to improperly administered lidocaine injection. I completely lost consciousness - in the middle of chatting with the GP - immediately after the local anesthetic was injected. Upon waking, I was disoriented and had slurred/slow speech and extreme fatigue. These symptoms lasted for days. At the ER, I was given saline after twice failing what I've come to learn is called the poor man's ttt. I had never had a problem with anesthetics in the past and I definitely do not have any needle phobias. Just wondering if anyone knows of any connection this could have to dysautonomia or whether this could be a trigger event? The lidocaine was being given for a punch biopsy to remove a non-healing area where I had received a tick bite. I have tested negative for Lyme twice on the ELISA, but I'm still considering pursuing further Lyme testing as another possible cause of my dysautonomia. Thanks for listening and for all the support I have found here!