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@StayAtHomeMom I used to take several a day but have developed hypertension and have cut down. I take 2 with 8 oz water before I get up then 1 with breakfast and that’s it. If I don’t have enough fluids and salt I get tachycardia, sometimes with high BP, sometimes low BP (mostly mornings). This is very different from when I first got ill 4 years ago. I also need more in summer.

@Pistol I tried HRT, BP got crazy high and went down to tolerable levels a couple of months after I stopped. I do get some supine hypertension but it’s not nearly as bad. I have developed pretty intense baroreflex sensitivity, drinking 8oz of fluids raises my BP by 20-40 sys so now I actually limit fluids during the afternoon/evening. I am getting a bit of a handle on how much to keep the tachycardia away but everyday is different. This is way different from when this all started 4 years ago.

I take it, it works well plus a % goes to one of the Dysautonomia groups. Can’t recall which right now.

I am four years post menopause and have recently developed hypertension, mostly during the late mornings and afternoons. Cardio called it essential hypertension. I take clonidine to lower it. I also get very hypertensive with too much activity, dr appointment, PT, visitors or being upright for longer than a half hour or so. I take an extra dose (1/4 tablet) of clonidine if I have something scheduled. The problem is for unscheduled things. The clonidine lowers my BP in about a half hour. I am also on Bystolic, a beta blocker.

I found this article and presumably will the boos interesting. They offer a new take on chronic illness and disability. https://www.buzzfeednews.com/article/annaleahy/living-with-chronic-pain-that-cant-be-fixed-ada-limon

Please keep us posted. This sounds very scary.

I agree with Pistol. I faithfully do aerobic exercise but give myself two days off in between and do strength training on the other days. I have learned to have rest days after going to PT or Dr appointments. I don’t do anything those days. I have gained a lot through exercise so absolutely won’t stop no matter what. I was very, very ill for quite awhile and will never go back there and that motivates me.

Is she possibly encountering some smell, perfume or something later in the day? That sort of thing always gives me headaches and nausea., sometimes right away and sometimes a bit later. Just throwing it out. Hopefully the beta blocker will help.

There’s a list of Drs that treat dysautonomia on the main page of this site. I love my neurologist who treats me more holistically, all symptoms and body parts involved, as opposed to my EP who mainly deals with BP/HR.

I absolutely second talking to an elder care lawyer and talking to your county aging unit. My father had Alzheimer’s before I developed full blown dys. The stress was unbelievable so I also second taking care of yourself and marriage first. I was my mother’s respite care giver for my dad one week a month. Because he was a veteran he, and now my mother, qualified for assistance from the VA. He had a home helper and my mom gets financial assistance. There are organizations that can assist getting that information. After full blown dys I can no longer assist with my mother who is now in assisted living. My brother does just about everything. Moving her into assisted living has been wonderful for everyone.

Call the Dr who deals with your BP. Mine is so whacky and frequently runs >130/85. Cardiologist just wants it less than 150/90 and I have permission to use clonidine as needed. Maybe your Dr will allow the same thing after an examination and discussion of your symptoms. Are you especially stressed about something? My BP goes up with any activity, even talking on the phone.

Very interesting if a bit over my heard too. I am one of the post viral onset folks. I will ask my neuro next time I see her, if I remember sigh...

Weary, I was tested for pheo which I think metenephrines test for? I don’t have a pheo. I have high norepinephrine based on blood test. I was tested for every possible cause when I was diagnosed 3 years ago. Have you seen an autonomic specialist? I was put on clonidine at the time I was diagnosed. I haven’t experienced much of the rebound hypertension from it but I typically manage that with extra beta blockers and limiting fluid intake. I found the first info referenced here https://www.healthrising.org/blog/2018/07/27/dysautonomia-international-conference-pt-iv-the-autoimmunity-revolution-in-pots/ about autoimmune cause (I have the first antibody mentioned along with MCTD) and baroreflex sensitivity very helpful for my case. My BP jumps 30-50 after drinking 16oz water in about 15 minutes hence the info on baroreflex sensitivity is helpful. I found that when I take clonidine three times a day I need to compensate for the orthostatic drops in causes me by drinking more water which resulted in low sodium. I am home bound so I can mostly manage stress. Taking it three times a day wasn’t necessary for days I am not doing anything which the vast majority of time. I can’t do more than 1 Dr or PT visit a week. Clonidine works better when I take it as needed for any stressful events, even talking on the phone. My BP has been better taking it as needed and being very careful with fluids. I avoid ERs but that’s me. I did get into the cardiologist in a couple days after it started going crazy high. my neuro autonomic Dr has convinced my rheumatologist that SCIG is worth trying. The neuro is now working on insurance approval.

Yikes, that’s technically hypertensive crisis territory. Mine has been higher too but it’s still scary and I feel dreadful during it. Do you have hyper pots? I do and take clonidine before anything “stressful”. For BP like that I pop my dose and half an hour later it goes down. I do have to increase fluids though because it can fall too far. I usually am toast for that day. I am so sorry about the rheumy who was working on SCIG is dumping you. How terrible. Have you actually started it yet? Will the zebra one order it? We are zebras so at least hey’s acknowledging that you are rare and special (arenywe all?).

I have had days where I go catatonic. Just can’t talk or think. I also frequently can’t find words. One of the more amusing was trying to tell my husband something about my ankle. I spent ten minutes trying to think of the word then just blurted out “you know, feet wrists”! I really hate not being able to read anything remotely difficult or even light stuff for more than about a half hour. I used to read court transcripts and dense government policy documents and enjoyed it. I can’t concentrate and get extremely fatigued. All that hey is sleep.

I have hyper pots and after years of trial and error and physical therapy I am doing ok on Bystolic (beta blocker) and clonidine (alpha blocker). I still cannot be upright for long and suffer severe fatigue with any activity, whether short visits at home or physical therapy or dr appointments. The clonidine helps the norepinephrine (aka adrenaline) surges from activity. My BP spikes even speaking on the phone. I do take modafinil as needed but not too often. I am housebound because of the symptoms. I have severe flairs with everything including hypertensive crisis. Clonidine really helps those as it lowers my BP in about 45 minutes. I take tiny doses. I am not trying to frighten you but until you get meds that help stabilize you should check your BP/HR and symptoms sitting and standing a few times a day. My BP/HR can be great standing but if I sit they are elevated beyond where the cardiologist wants them. Take care.

Thanks, @ANCY. Because I get migraines and I am a chicken and extremely sensitive to many meds we are starting with SQ.

My autonomic specialist basically said if I need it to save my life to use it. Definitely something you should discuss with them.

Thanks so much @ANCY. It’s very helpful to hear the good and bad. I take it you are getting IV not SQ? I am sorry about the sepsis. Yikes. It’s heartening that IVIG is helping you recover faster and that you aren’t catching as much that goes around. I would love anything that helps with fatigue, strength and ability to be upright longer. I have many concerns about it all but am hopeful that insurance will cover it and the side effects aren’t too horrible.

Thanks, @Clb75. I am sorry that it doesn’t help with pots symptoms. I have decided to try it and am surprised at the lack of responses given the recent research seems to indicate it’s very effective for some. Fingers crossed that SQ doesn’t cause the headaches etc that you experience. Take care and thanks so much for replying.

I take mitrazipine which is in the same class I think for sleep and have no problems. All my autonomic specialists are fine with it.

Hi everyone. My Dr is willing to prescribe SCIG for my hyper pots/autoimmune issues/cause which is great as I have read many good things about it. It seems though that everything states quality of life improves, sometimes significantly, or that it’s worth the downsides. I have read everything I can find on this site but really am curious what exactly are the negatives and positives. Can you be upright longer, BP/ HR better, especially fatigue, is it better? Does it help with sympathetic system regulation? Anybody with hyper pots do this? Do people stop other meds? What exactly are the downsides? I know about headaches/asceptic meningitis but anybody get diarrhea which is listed on the drugs side effects pages? How many days are you non-functional? This is a big decision and I want as much info as possible. Thanks in advance.

POTS is not POTS. There are tests for catecholamines, specifically norepinephrine, that indicate hyperadregenic POTS. The blood test part has to be done after laying down for 30 minutes then after standing for I believe 10. There is also a 24 hour urine test. Treatment is different for it and includes alpha blockers of which clonidine is one. You might want to do some research on POTS in general and hyper POTS specifically if that’s suspected. The DINET website has lots of information. You might take these to your Dr or find an autonomic specialist.

I am the same. It’s what really limits my being upright very long. I have hyper pots and I wonder if it’s the sympathetic nervous system kicking in?

@Claireit’s used, as far as I know, only for hyperadregenic pots. I find it extremely helpful.