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@Pistol I completely agree on the fact that some increase energy and some drain it. I find that any, as long as it isn’t too intense/resistance/lengthy, helps. It took me years to find the balance between aerobics days (1) and rest days (2) or I would crash terribly. I also had to back off on recommended duration and resistance. I can’t seem to increase beyond 20-30 minutes of aerobic exercise 3 times/week no matter what. I am now adding in 10 minutes of aerobics, treadmill, most days but if I wake up fatigued I take a day to just do strength training. I still overdo it and pay big time, probably once a week but I am absolutely terrified of losing the ground that I fought so hard for. I am supposedly doing a modified Levine protocol but that’s way too intense for me. I started with it but had to find my own balance with my PT. We are such fragile but amazingly strong people. Getting on the bike etc was/is so hard.

Exercise has been vital to my (limited) improvement. I was extremely ill, 84 pounds, on TPN, could only stand for a couple of minutes and housebound. I started with PT at home with stretches and 1 pound weights and 3 minutes on a stationary bike. After a year I started doing a water treadmill at a PT facility. That helped a lot with lower leg strengthening. Like @Sushi my PT has me increase by minutes a week. 3 years later I am still doing PT but now use the bike, rowing machine and regular treadmill at home (I am still housebound). I also do strength training everyday. It’s been, and still is, *extremely hard work* but I will never let myself get so debilitated again and exercise is key. I still get bad flares and have to back off on exercise but I keep at it no matter what. My brain fog in general is much better but that flares with too much activity too. I really appreciate the link to the article, thanks.

@dancer65 husbands! I am sorry that you now have a virus. How frustrating. I swear when it rains it pours. I hope that you get over everything soon. How are you doing today? I am feeling better, thanks. Listening to Bing Crosby Christmas music (he was my mom’s favorite, what a voice & David Bowie!) and helping hubby make mince pies this afternoon but I am still quite fatigued. The backache is easing too. @Pistol yes, it was a UTI. Your specialist is definitely correct, that makes a lot of sense. I am glad that my PCP seems to agree with your specialist. My PCP is new to me and I like her so the fact that she thinks the same is comforting. After the antibiotics I now have the typical, but dreaded, yeast infection! Next comes BV. Happy bloody Christmas 😉.

I *believe* this clinic/dr does online consultations and works with local Drs http://www.dysautonomiaclinic.com/. Worth reaching out at least.

Well, at least I am not the only one! @Pistol that’s interesting, she said I was probably sicker than I thought and it happened during my low point in in my immunoglobulin therapy but went away when the effectiveness was at the peak. I hate being unique! Thanks so much for the article.

I had a recent infection and my temperature was 96.5-96.7 for a few days. My Dr says this happens in some people but it’s never happened to me before. I haven’t been this ill since I developed full blown dys so am curious if it’s related or ? Any ideas? TIA.

Oh @ANCY you have been through the ringer. I hope that you are stabilizing now. I agree with Pistol. I am very unstable in general with both hypo and hypertension. Anything that sets off stress in my body gives me huge spikes in BP, even talking on the phone. At other times my BP is low, 90s/60s. Right now I am flaring due to a mild UTI and everything is bad. Hypo and hypertension, extreme fatigue and malaise like I haven’t had in a year or more. I started SCIG a year ago and didn’t realize how much it was helping me until now. I think that we are so physiologically fragile (but mentally strong as h***) that any stress can completely undo us.

@Outaker how are you doing on this drug? My cardiologist just prescribed it but I haven’t started it yet because we are waiting for the results from a 24 hour BP test. Side effects? Does it lower your BP?

Thanks @Scout It was a breeze. Mine read every half hour until 11pm then every hour until 8am. I did notice that it read a good 15-20 points lower than my BP cuff at home and even greater at the Drs offices. The results are not yet available but cardiologist said to trust the 24 hour readings more than the others. Did you notice any difference in the readings?

@Friedbrain have you ever checked your BP during these episodes? I know my HR drops into the 40s and occasionally 30s when my BP is near crisis territory (180/100). They sound scary and I agree with Pistol that the testing should hopefully get some answers.

Anybody have one of these? Any advice? Thanks.

@pistol. Thanks! How slowly infused? I have read everything from 1 liter in an hour or two to 8 hours. Thanks.

@Pistol yes, I mean hypotension. My BP does this lovely dance-higher supine, drops 20-30 on immediate stand, rises for ~10-15 minutes then starts to fall. I have no idea where this puts me in terms of type. I have elevated norepinephrine so definitely hyper but with Orthostatic hypotension and hypovolemia. I have recently noticed my BP drops ~20 points after a meal which I never noticed before in 5 years. Strangely carvedilol seems to make my palpitations worse when hypotension. Ain’t this all fun 😉

Thanks @Pistol I seem to have developed supine hypertension mostly in the evenings and if I consume “too many” fluids. My gastropressor response is extremely dramatic. I basically control my BP with fluid intake (limiting mostly) and meds but the result is I am hypovolemic much of the time which brings on sympathetic surges when upright for too long-minutes to about 20-30 minutes generally. I am always reacting instead of being in a place where I am proactive to being stable upright. I know we all generally have higher BP in the evening but mine goes too high supine.

@Pistol have you ever had supine hypertension? Have IV fluids helped with that? I am struggling with BP again, hypertension, especially supine but also OH if I take too much beta blocker. Very frustrating. I see the cardiologist in a couple of weeks and want to be armed with articles etc so thanks for posting the link to the article again.

@Pistol I think it’s interesting that you get chest pain (not palpitations?) from hypertension. I get really bad palpitations with OH. I guess what’s the difference for you?

Oh yeah. I do this routinely at my neuro orthostatic vitals check after being upright a few minutes. I think because they make me stand still and normally I would be moving about at home so don’t notice it as much except in the mornings. I have often described the feeling like on a boat when they ask about dizziness and light headedness. I agree it’s probably OH but I get when my BP is up due to sympathetic overdrive.

Mine don’t hurt and both my neurologist and cardiologist say it’s Raynaud’s. I can have one, or half of one ear go bright red. It’s happened for years, even before full blown pots.

I am so sorry you had such a bad experience. It’s so frustrating when that happens. I hope that you have a GP or someone that can help. Beta and alpha blockers interfere with melatonin and sleep. When I couldn’t tolerate non selective betas like internal my cardiologist prescribed Bystolic which is a selective and worked very well. My hypertension has been really bad for about 2 years now and I am back on non selective carvedilol and guanfacine for the alpha blocker. The only thing that helps my sleep, and I have tried everything, is mitrazapine. I also take extended release melatonin and magnesium maleate tablets.

I have had hyper POTS for 5 years and am still refractory as far as hypertension and fatigue go. Right now it seems that the research is zeroing in on autoimmune causes and hopefully better treatments. See the videos from the Dysautonomia International 2019 annual conference here https://vimeo.com/dysautonomia I have hope for better testing and more targeted autoimmune therapy in the future.

I like Trioral. No dyes, extra stuff.

Thank you for sharing all this Photon! I relate on many levels. I, too, was a professor and after 2 viral illnesses in a week I developed full blown hyper POTS. May I ask where you are located that you could get the Parasym device? I can have my husband pick one up in the UK next time he goes over or ask family over there to ship one. I would really love to get off some of the meds. I value the research you have done and your willingness to share and will check out your suggestions asap. I completely agree with the requirement to exercise, it has helped me a lot hard as it was to start. Thank you for the hope!

Thank you for the information. If you do a search on this site you will see I asked about a couple of months ago. I was extremely ill and am still partially controlled with beta and alpha blockers. I have taken ivabradine in the past and quite liked it. I knew Vanderbilt was doing tests on this type of therapy but didn’t know it was the same device. I will get one at some point. I am very grateful for the information and I know we are all very different. Do you know if you have autoimmune disease? I was first intrigued by this technology for MS. I do have autoimmune disease.

It does sound like you could use an alpha blocker. I completely agree with @Pistol, our stories are very similar. I have wonderful Drs and nurse practitioners but after 5 years I still have to adjust meds fairly regularly. It’s very frustrating. I have tried probably 5 beta blockers, 3 alpha blockers, mestinon, midodrine, etc. etc. I tend to get stable-sort of-then suddenly meds stop working and it’s back to hypertension etc and another go round on meds to find the right doses. I have to change meds when seasons change it seems. I am doing IG therapy now which helps with most things but not hypertension at the moment. My disease has been confirmed autoimmune therefore the IG therapy was approved. It took several years and lots of tests and a lot of hassle to get my blood to Germany for the Celltrend test but was worth it to get the IG. Until they know what causes this, and in the autoimmune case, which specific autoantibodies, all they can do is treat symptoms. My neurologist told me when I was diagnosed that this is a marathon and you are crawling, it will take awhile. Unfortunately I am on the extreme end of disability and refractory and am therefore hard to treat so she was right. I credit meds, PT and deciding when I was extremely ill (84# and could barely eat) that if I couldn’t die then I would have to do everything to get better. That change in mindset is what lead to my improvements. Slow as h*ll though they were I am so glad that I stuck with it all now. I am still seriously disabled compared to a normal person but I will never be normal again, that’s just how it is, but compared to how bad I was I much better now. Hang in there.

I take it regularly and sometimes it helps, sometimes not. When I looked at side effects it can lower BP, likely because it is a neurotransmitter. I know that beta blockers decrease natural melatonin production which is why I take it. I have found that it looses effectiveness after awhile so I cycle through sleep meds and stop melatonin for a weeks and then it helps again. Enjoy the peaceful feeling! It’s so rare for us.