p8d

Hi Sylvie, I'm afraid I can't offer much help but I am pretty much in the exact same place. Diagnosed March, still struggling to find right balance of meds/exercise. Some people I thought were real friends have disappeared, acquaintances have stepped up. I am most depressed that the people I helped in their time of need have not been here for me. I thought they were true friends, I'm working on accepting that they aren't and express deep gratitude to my husband and those that do help. I'm trying to accept I will never be how I was before. Some days (good days) I can handle that. Unfortunately emotions are one of my biggest triggers so I am learning to let most things go. For me learning patience has been hard, as is requesting help but I have no choice. Thanks for sharing this thread, I am happy to hear others perspective and want you to know you are not alone (and neither am I).

Congrats.

Dr Rob, Thank you for the explanation and suggestions. I'm surprised in a way because I eat something, nuts/fruit, veges, quinoa about every 2 hours during the day. I will definitely give this a try. I wish my Dr had known or told me. I am extremely grateful. P

Hi Everyone, I'm getting adrenaline surges every day at roughly 4pm. I had a blood test that confirmed this is happening. Dr prescribed propranolol but it isn't helping after 2 weeks. Tried increasing the dose to no avail. I suspect this is also the reason for the insomnia. Anybody else have this at a specific time everyday? Xanax is all that helps but neurologist doesn't like me taking it. Any other meds/advice (I have searched the forum) just getting desperate and Dr doesn't seem to interested in helping with this. Thanks so much for any help.

Hi Sarah, Strangely, or maybe not (any one know?), I got desperate later yesterday afternoon and took a xanax and it went back to dropping on standing. Today it's back to dropping on standing but I took a temazepam at 3:30 am (thought it was 1:30). My epi/norepi are elevated, severe anxiety late in the afternoon, that's the reason for the propranolol. The lab tech that did the initial catecholamine test did it wrong so I suffered these doom/anxiety feelings for 5 months needlessly. I am constantly pushing my Dr (an ANS specialist) but I think they are fed up with my difficulties. I'm trying my hardest but it's hard to stay positive. I was diagnosed with Lyme by Igenex but can't see that specialist until late September. Its these waits for appointments that drives me nuts. Thanks for reaching out, means a lot.

Hi, Know how you feel. My Dr called me stoic but since I was diagnosed in March I just seem to be getting worse, even doing *everything* they tell me, all meds, exercise etc. My Dr said it takes 18 months to 3 years for the ANS to recover, on average but as many here can attest for some it is much longer. The lonelines is hard, I still struggle, read, get outside, walk since you can. May want to ask about an antidepressant. Real friends won't abandon you. Reach out, ask for help from friends, family, anywhere. Send links to videos, websites for others to help understand how disabling this can be. This site is great for support from people that truly understand.

Thanks Katybug. Odd reactions, you are so right.

Hi All, I started a very low dose of propranolol (5mg) a week ago for nor/epi surges (afternoons). Things were going OK (I am in the **** of trying to find the right meds) until this morning. My BP/HR have consistently been dropping from laying to standing but better than TTT. Been on fludricortisone for a couple months. This morning and every time I have checked my BP today it increases going from laying to standing, by 20-30 points, then drops after 5-10 minutes to more normal for me. Is this the beta blocker? I am having a terrible day with many symptoms flaring. Will ask Dr tomorrow just value all of your experiences. Thanks.

Thanks for the replies and link to the article. I'm confused too. I guess they are concerned about the BP dropping too low because I am extremely sensitive to meds. Strangely this am (after taking a 1250mg does of magnesium malate at bedtime for the first time, no idea if that is related) my BP without stockings, still in bed, supine was 108/59, after standing was 94/74, HR went from 81 to 96. I drank 16oz of water in between lying and standing. After adding stockings and biking for 45 minutes, sitting BP was 137/83, standing 119/79, HR 80. They gave me a script for propranolol at 5mg but said not to take it if lower BP number not over 100. I had one am BP reading last week without stockings Of 169/123, but I'm thinking it was not correct. The lower number with stockings had been in the 90s during the rushes. I'm going to keep monitoring the am BP. I really appreciate your help.

Hi All, I was diagnosed with OH on ttt back in March. Taking fludricortisone, wear stockings, take salt capsules daily. My BP without the stockings is 140150s/70-80s. With stockings it varies but generally 130s/70s. I was diagnosed this week with hyperadregenic because of the rushes and epi/norepinephrine tests indicated that as the reason. Dr suggested beta blocker but only if standing BP goes over 100 (lower #, spacing which one that is). This rarely happens but the nor/epi rushes happen a couple times a day. Anyone else have this? Any other way to handle the rushes (I have been taking xanax prescribed by hospitalist) but want to treat the cause, not the symptom. Thanks for any insight.

Thanks. I have full catastrophe living sitting next to me and love the sound of a wild snail eating(read it before I was sick). I found full catastrophe too difficult a month ago, I have pretty severe neurological problems but will try that again and the others if I can. I really appreciate the help.

Hi, I'm fairly recently diagnosed with dysautonomia/OH and struggle with quite a few issues. I'm looking for any books folks have found inspiring. I've read Robin Roberts which was good but got a bit bummed because she could be cured. Any suggestions? Thanks.

Try Medical college of Wisconsin in Milwaukee, they have a number of dysautonomia specialists or Dr Dotson (neurologist) in Grafton, WI (just north of MKE, Aurora health care). She diagnosed me, has a clinic just for Milwaukee-lots of specialists, all types, PT etc. She worked at Mayo and Med College. Knows her stuff. Has the BEST nurse practitioner who deals with all my problems and coordinates between all my specialists.

Hi Mike, You have described my symptoms almost exactly but mine started after a virus and progressively got worse. You are not alone. I am on TPN at night after losing so much weight. I use meal replacement drinks, eat every 2 hours and take xanax for the shaky/anxiety/doom. I hate taking it but it helps. I also take sleeping pills because I feel worse when I don't sleep well. I take salt capsules, fludricortisone, Gabepentin(stomach pain) CFS supplements and drink liters of fluids daily. I ride a stationary bike 3 times per week and do strength training 2. I became deconditioned and it got severe after the stomach pain/diarrhea. Get to a dysautonomia specialist and gastroenterologist familiar with it asap. I ended up weighing 84 pounds and in the hospital. Yes, it is scary but if you can walk and the diarrhea is gone that's great, keep it up but find a specialist.

I have recently had similar trouble with my weight. Couldn't tolerate salty stuff and eventually couldn't even drink liquids. Ended up in hospital with TPN and saline IVs. I weighed 84 pounds. Don't mess around, call your Dr (I had been seeing a gastroenterologist). I can't tolerate Boost which everyone said to drink. After a month at home with TPN I am weaning off now. I found Garden of Life Raw meal replacement drinks, vegan, dairy, soy, sugar free, organic agrees with me. I am doing salt capsules with food, lots of almond milk and Gabepentin for the nerve pain. I too had diarrhea which has stopped. I add one new food a day, started with a bland diet. Pesto Bismal is less constipating for me. Good luck, I feel for you.

I have had serious insomnia since my dysautonomia started. I feel your pain. I tried every sleep med. I have found doing the exercises (bike especially) helps me fall asleep on my own for 3 or 4 hours, then I take a temazepam and get 3 or 4 more. I had a sleep study which only found mild apnea. I look forward to the article. Sorry I couldn't be of more help, I am trying hypnosis, visualization and all the other things you mention. My Dr recommended a CBT sleep specialist when I can tolerate weekly visits to get off the drugs. I am housebound at the moment. Thinking of you.

Hi, I was diagnosed with POTS/dysatonomia/small fiber neuropathy/ ortho static hypotension in March by a ANS specialist. Loads of tests, failed tilt Table, etc. Every med they have tried for hypotension (Mestinon, mIdodrine) have given me diarrhea. Went off all ortho static drugs a month ago, developed gastroparesis (GI Dr familiar with Ans dysfunction). Started gastroparesis diet resulted in SEvere pain every time I ate. Lost 17 pounds in 4 weeks, weighed 84 pounds last week, hospitalized for 4 days, started TPN at night, doing it at home now with full liquid diet. Started Gabepentin for presumed stomach Neuropathy (some heart TWave abnormality precludes amitriptyline). Sometimes liquid diet doesn't cause pain, sometimes it does). ANS Dr wants to start low dose fludricortisone for BP swings. Anyone have GI issues with this? Any advice on diet/meds? I feel like I could handle the other stuff if I could eat without pain. Am doing exercise protocol but this has set me back to the beginning I've gotten so weak. Thank you any advice/support/hope would be gratefully appreciated. P8d