Sheri Lynn Posted February 17, 2015 Report Share Posted February 17, 2015 For the last three days I have felt nothing short of awful. I'm eating once daily (still small meal and very little carbs) because I get so dizzy my, sleepy and nauseous afterwards. I've been lucky to be off work due to a severe winter storm but I have no idea what I'll do when I need to go back tomorrow or the next day. So far all that's helped relive it is sleeping for a couple hours..I've got an appointment with a neroulogist who specializes in dysautonomia on March 11 but that's just a consult and I honestly don't know if I can make it that long if I don't find some type of relief... My hands and feet at constantly cold, to the point of being painful. I'm considering wearing gloves indoors lol My bp is pretty low normally, pretty sure there's some orthostatic hypotension as well. My pulse is usually about 80 when resting but can go as high as 149 when standing. It didn't always jump the 30 points after standing but usually. I also get these weird bouts of trembling....Sorry I know this sounds whiny and so many have it worse than me. I'm just hoping to see if this sounds familiar to any of you and if Anyone has any tips to help until the Dr appointment? Thank you! Quote Link to comment Share on other sites More sharing options...
Katybug Posted February 17, 2015 Report Share Posted February 17, 2015 Hi. It sounds all too familiar. I can often be found in a hat scarf and gloves in the house. I, then, will suddenly get a hot flash and rip it all of like it's strangling me. I often can't get warm unless I take a nap, then I wake up about 2 hours later with the hot flash. I can only suggest lots of salty food, electrolyte drinks, water, water, water and let your body sleep as much as it wants while you are off. I'm not sure what your situation is at work but is there someplace you can lay down on your lunch break? That used to help me a little. I also find running my hands under warm water would help or taking a warm shower (the shower is a mixed bag because it will warm me up but it also vasodilates you so you have to be careful not to pass out.) I also used to have a full chair length massage/heating pad that I kept on my chair at work. The vibration helped keep my blood moving and I had the heat for my cold moments. (My coworkers loved it and would jump in my chair for a couple minutes when I was away from my desk. Fair warning.) Feel better. Quote Link to comment Share on other sites More sharing options...
MomtoGiuliana Posted February 18, 2015 Report Share Posted February 18, 2015 Sorry you have had such a rough 3 days. It does seem like a long time to wait to see a doctor when you feel so poorly. I agree w Katybug's recommendations. I found/find that a high fluid load can help. Also small protein and fat rich and low carb meals helped me. Lying down too much I realized in retrospect might have increased my symptoms. I think for most people with POTS you have to find a balance between resting and being upright. I also found taking a shower at night rather than first thing in the AM was best for m symptoms--many POTS patients feel their worst in the AM. Have you started synthroid? The cold hands could be caused by low thyroid levels. Quote Link to comment Share on other sites More sharing options...
Sheri Lynn Posted February 18, 2015 Author Report Share Posted February 18, 2015 Yes I have started synthriod as well as a beta blocker to lower my heart rate some. I've been sick for the last 8-9 months and per my primary care doctor I began drinking 3-4 liters of water daily and wearing compression socks.increasing salt is difficult as I'm not sure how much to increase to. Drinking more water does seem to help though.Thank you both Quote Link to comment Share on other sites More sharing options...
Katybug Posted February 18, 2015 Report Share Posted February 18, 2015 I haven't yet seen anyone add to much salt if they are just doing it through food and electrolyte drinks. I have seen people have trouble taking salt tabs but that has mostly been GI upset. The problem with increasing fluid intake is that you have to have enough salt to help retain it. Quote Link to comment Share on other sites More sharing options...
Katybug Posted February 18, 2015 Report Share Posted February 18, 2015 http://forums.dinet.org/index.php?/topic/23960-how-much-salt-do-you-have-in-mind-when-you-say-salt-loading/?hl=%2Bhow+%2Bmuch+%2BsaltThe link above is an old thread where people discussed salt intake and different recommendations they received from doctors. Quote Link to comment Share on other sites More sharing options...
Sheri Lynn Posted February 18, 2015 Author Report Share Posted February 18, 2015 Thanks so much! Quote Link to comment Share on other sites More sharing options...
Dyspatient Posted February 18, 2015 Report Share Posted February 18, 2015 Sheri Lynn,I'm so sorry to hear you're having a rough time right now. I hope your return to work was ok. Did the salt and fluids that Katybug mentioned help? I have a hard time getting enough fluids in too, and to make it worse, I have different docs telling me different things! But like Katybug said, my doctors also told me that I had to push salt or I'd just keep peeing out the water. Even with the salt tablets plus electrolyte tablets (sodium, potassium, calcium, mag), I do still get very low BP days, and very OI days, especially if I've had to take meds that lower my bp (like betablockers) or make me dehydrated (like benadryl). Do you check your blood pressure at home? I'm asking because for me, it helps me to know if my bad day is a bad bp day, in which case I try to really stay on the fluids & salt, lay down for breaks a lot, and maybe have a little extra dietary/food based salt too. I hope you're doing a little better. I'm really glad to hear you will be seeing a neurologist soon. I hope that's helpful! Quote Link to comment Share on other sites More sharing options...
Sheri Lynn Posted February 18, 2015 Author Report Share Posted February 18, 2015 I do check my bp at home. So far it seems the OI definitely corolates with low bp. I do know the me I drink the better I feel. I never thought of peeing it all out though, so I'm going to try to up salt. If assumed my salt was OK since my last blood work showed a sodium level of 144, although I know that is within normal ranges I'm not sure what level is optimal. I haven't returned to work yet, hopefully tomorrow, as we have over 10 in of snow. Thanks for the advice. I'm just praying this neurologist will be able to give me some answers. Been looking for answers for 9 months, ruled out narcolepsy, Lyme, etc and been diagnosed with sleep apena and tachycardia. Primary care doctor is sure it's POTS and I honestly don't know what I'll do if this neroulogist doesn't find something? I know this isn't all in my head??? Quote Link to comment Share on other sites More sharing options...
Dyspatient Posted February 18, 2015 Report Share Posted February 18, 2015 Oh the snow is just killing me! I'm up near Boston, I'm not working right now (thank god) but it's made getting medical stuff taken care of really tough. I've had to reschedule an ultrasound three times now, between acute health issues and the snow! I've had mixed luck with neurologists. My tilt table test results showed NMS in 2010 and POTS in 2013, but I'm accumulating other autonomic symptoms and I don't have any unified answer for this all. I saw one neurologist who was an autonomic specialist in 2013 who was not helpful, I'm working on getting in to see someone else. I had another, but he left his practice before we got too far (1 appointment). It's hard to keep pushing when you get set backs like those, but necessary. Sometimes I take a break just to regroup. I call it a "doctor break". It helps me stay sane. But I have to keep pushing, I know that in the end I might just get the "idiopathic" this and that label, but I'm only willing to accept that after the doctors have exhausted/ruled out anything else, which has not yet been done in my case. I hope you can get some answers too. It's sometimes a long road to a diagnosis. Stay strong! Quote Link to comment Share on other sites More sharing options...
Sheri Lynn Posted February 18, 2015 Author Report Share Posted February 18, 2015 Thank you Dyspaient! I clearly haven't been dealing with this as long as you have and I hope you get some answers soon as well. Thank you for your input and encouragement ! Quote Link to comment Share on other sites More sharing options...
Dyspatient Posted February 19, 2015 Report Share Posted February 19, 2015 I hope you don't have to deal with it that long, or at least that you get good answers and have a medical team that can support you in finding effective treatment options. That's so important. It's a dizzying (no pun intended) process to find a good doc or set of docs to help you with this, but it sounds like your on the right track. I wish I hadn't waited so long to seek out an autonomic specialist! Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You can post now and register later. If you have an account, sign in now to post with your account.