mom28 Posted May 10, 2017 Report Share Posted May 10, 2017 Hi everyone. I hope you can guide me. I developed dysautonomia after being diagnosed with Lyme and Bartonella. I have had symptoms for about 9 months but they have decreased significantly with my treatment. I am no longer on antbiotics but still have lingering symptoms of dizziness and imbalance after standing for more than 30 min, exercise intolerance and my biggest one heat intolerance. As soon as I go outside in the heat (about 70 degrees or more) I immediately get dizzy, short of breath, heart palps, head pressure, flushing and basically feeling like I am going to die. I notice that I don't sweat like I used to (which was profusely). In a few weeks my daughter is receiving an award at school. The ceremony is inside of the non air conditioned gym. Does anyone have ANY suggestions on how to deal with the heat or what helped them with this symptom? I am desperate not only for this occasion but for the whole summer. I am terrified to leave the house. My dr is considering adding an SNRI to help calm my system. When I take a benzo it helps calm the other symptoms but not the heat intolerance and I dont use them daily, only in "emergency" situations like having to go to an event when I will be walking or standing for long periods of time. I don't know what "kind" of dysautonomia I have. I have never been officially tested. Thanks for your help! Quote Link to comment Share on other sites More sharing options...
songcanary Posted May 10, 2017 Report Share Posted May 10, 2017 When I had this problem I used a cold pack around my neck and it helped a ton. You could even disguise it under a pretty scarf! Quote Link to comment Share on other sites More sharing options...
Bluebonnet08 Posted May 10, 2017 Report Share Posted May 10, 2017 I feel for you because I am very sensitive to the heat too! Definitely bring iced water with you everywhere and sip it. Wear "breathable" clothing like cotton, some fabrics are so heavy! I have an handicapped placard that I use during the summer to park close and minimize my time walking in the heat. I've heard of cooling vests and other things you can wear. I might try them this summer as I live in a very hot climate. If you can, consider investing in a remote control starter for you car. I NEVER get in a hot car... I always let the AC run for 10 mins or so. If not, it is a sure way to trigger an episode for me. I try to stay inside on very hot days. It's just not worth it. Early morning or later in the day is better if you must go out. You could also try to call the school and explain the situation. Maybe they could move the ceremony to an air conditioned location? I can't imagine that you would be the only one affected by the heat. It might be worth a try! Good luck. Quote Link to comment Share on other sites More sharing options...
mom28 Posted May 10, 2017 Author Report Share Posted May 10, 2017 Thanks for the suggestions. I was thinking of getting one of the cooling neck wraps and experimenting with it. Disguising it with a scarf is a great idea. Does anyone know if there are any meds specific for helping with lack of sweating? My Dr has also thought of trying Florinef? Quote Link to comment Share on other sites More sharing options...
mwise Posted May 10, 2017 Report Share Posted May 10, 2017 Stay hydrated, go with wet hair, cooling neck wraps, cotton light clothing, park close, asked to be seated in an area for handicapped persons which should be close to the floor. Also check with the school to place you where there may be air conditioning on. I also use a cooling vest which helps. I just attended my daughter's college graduation in a gymnasium, which my daughter had special seating for me. Every little bit helps on that special day Quote Link to comment Share on other sites More sharing options...
Guest KiminOrlando Posted May 10, 2017 Report Share Posted May 10, 2017 Can the school let you sit in an air conditioned room and wait until it is your daughter's turn to get the award, then discreetly bring you out to a reserved seat? Maybe someone at the school can signal you when it is time to come in. I avoid those at all costs. My high school graduation was outside in Florida in June in a dress and pantyhose. Thank goodness it was at night or I never would have made it. Good luck! Kim Quote Link to comment Share on other sites More sharing options...
cmreber Posted May 10, 2017 Report Share Posted May 10, 2017 They actually make the cooling neck wraps that look like scarves! I have a couple and they are a real life saver when it gets above 80! Definitely be really well hydrated before and take water. I'm not sure if anyone else finds the same, but I actually feel better in the heat with less salt than normal, at least during the day; I still heavily salt my foods, but in the summertime, I actually only take my salt pills before bed. Maybe it's the water retention or something? Not sure, and it could just be me! LOL! I have only recently gotten on an SSRI, so this will be the first summer on it. So far, we've had a few hot days (high 80s) and it seems like shopping was a lot easier than it usually is when it's that hot, so it might be helping. Quote Link to comment Share on other sites More sharing options...
Lily Posted May 11, 2017 Report Share Posted May 11, 2017 You could try bringing a wide-mouth bottle full of ice, and rubbing the ice on your wrists and neck/chest periodically. And bring a hand fan, to keep air moving over your skin. It might be a good idea to call the school ahead of time to ask about accommodations, in case they need to adjust seating arrangements a bit. Easier to do before than at the last minute. Quote Link to comment Share on other sites More sharing options...
mom28 Posted June 5, 2017 Author Report Share Posted June 5, 2017 So I started taking a SNRI and it is helping keep alleviate the heat intolerance and giving me more stamina (less symptoms). I can walk around the mall and do simple household tasks. I can even be outside in heat for short periods of time and I have started sweating again! Who thought anyone would ever be happy about that? Now the dr would like to add Toprol XL 25 daily. I know this is a low dose. Anything I should watch for or be aware of before I take it? Quote Link to comment Share on other sites More sharing options...
BuffRockChick Posted June 6, 2017 Report Share Posted June 6, 2017 Wow! That's great news! I'm happy to hear you found something that works! Quote Link to comment Share on other sites More sharing options...
Guest KiminOrlando Posted June 6, 2017 Report Share Posted June 6, 2017 Toprol XL can make you tired. I take 50 mg daily. I think I adjusted to it but it took a while. I have been on it for 10 years. I honestly didn't think it helped me, so I decided all by myself that I didn't need it and quit taking it because I heard it could be why I was gaining weight. Boy was that a mistake! It was helping me, I just didn't realize it. Good luck and be smarter than me. ? Kim Quote Link to comment Share on other sites More sharing options...
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