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Most companies that sell compression wear for health issues have thigh high stockings, prescription strength and non. I like Juzo brand. They stay up!

I agree with Pistol, your Dr needs to be aware of this. I have it too now and laying down really jacks it up. We are switching my meds because of it.

My autoimmune disease causes this. Treating that has helped.

My library has the request and pick up at the hold shelf too. I am housebound but I order the books and hubby picks them up. I always do my exercise, aerobic or strength, no matter what. I figure I am not of use to my husband and dogs unless I am staying strong and improving. I cut back on time or number of reps on bad days but I find I get a bit more energy from exercise, even 15 minutes. I also read again recently that housework is exercise. I know it’s difficult for me to vacuum with my light vacuum cleaner as I get hot and sweaty so I count that as exercise. Sometimes I let the house go because I need a recovery day. I figure no one that counts is going to care/remember that the house was a mess in a month anyway. We hired a cleaning service that comes once a month to do a deep clean, honestly one of the best decisions we made. It is so difficult to deal with the trade offs. I build recovery days into my schedule now and it’s helped a lot.

Definitely something to fear. I would like to get off of it but it will have to be very, very slowly. Methyldopa is on back order until at least March so I am stuck with clonidine for now.

I have taken both methyldopa and clonidine. Methyldopa is smoother but clonidine lowers my BP better. Methyldopa has a longer half life. Clonidine comes in a patch. We all react differently to meds so unfortunately experimentation is required.

I used to get them in the afternoons but recently it has shifted to evenings with supine hypertension. I agree discuss with your Dr about possible med changes.

It messed with my digestive system for the first few months. Diarrhea but my gastroenterologist, after tests, said if Imodium controls it just take that. She said it’s more important to be able to take my meds. If I eat large quantities of fiber, beans, lentils, fruit everyday I don’t need the Imodium or only teeny doses. My rheumatologist was very good about saying that he would diagnose without positive lab work (ANA) based on joint pain and swelling but that the discipline in general will not. The hydroxychloroquine helped with the fatigue in a couple of months and the pain/swelling started decreasing at about 6-12 months. Let me know how you do with your Dr.

@HangingByAThreadhave you heard when this might end? I have had to it to my clonidine in an attempt to decrease my serious hypertension. I was told in November March of this year and probably have enough to last that long.

I have terrible joint pain and swelling when my autoimmune disease flares. It took ~30 years to get a diagnosis of it so I suggest keep getting tested! My tests were negative until the 3rd in eighteen months finally came up positive and got a referral to a rheumatologist. Once I started hydroxychloroquine it got better. SCIG helps even more. It wouldn’t surprise me that pots will cause it either, that’s certainly in keeping with the pots as autoimmune theory. Maybe your awesome PCP could try you on hydroxychloroquine for several months and see what happens? It takes several months for it to work. I started seeing improvement in about 2.5 months which continued for about a year then stayed about the same.

I was told by my dys specialists to never take any cold medicine, period. I drink virgin hot toddies and suck cough drops.

Stress is one of my worst triggers. I agree with @Pistol. I like my cardiologist but he only deals with BP/HR. My neurologist deals with everything else. I adore her.

Check your BP/HR next time it happens. Sitting/standing and if BP is low with high HR I agree, slam a big glass of fluids (electrolytes) sit for awhile and then see how you feel. You need to know what is causing the attack so you can respond appropriately and get back in control. Are you wearing compression stockings? Check out the book The Dysautonomia Project, it has great information for patients/family and Drs not familiar with dysautonomia. I know it’s scary at first but you will learn what your triggers are and how to deal with all it if you document everything you do. What you eat and when, exercise, medications taken and when, fluid intake, orthostatic BP/HR readings morning, noon, night and whenever you experience symptoms. I did that for 3.5 years after I was diagnosed. The information was very helpful even when symptoms change unpredictably. Information is power!

Are you taking electrolytes in your fluids? Or taking salt/potassium pills? I have hyper pots with high BP but still take salt/potassium pills to compensate for my always low sodium in blood/urine tests. I have to have enough fluids to prevent tachycardia from blood pooling but not too much to raise my BP too high. I have baroreflex sensitivity so have to juggle fluid intake carefully. I get my electrolytes checked every three months. It’s always wise when you drink so much.

@PistolI know when I first started I did get fatigue but I was so fatigued at the time I don’t know what was contributing. I also get breakthrough hyper symptoms (wake up, sweaty, hot etc but haven’t checked BP) several hours after I go to bed. I figure because my BP is always low first thing in the morning that my BP should be ok. Now I take one methyldopa at bedtime to stop this. Crazy huh? I wanted to try guanfacine, I know you are on it but cardiologist has never prescribed it. Neurologist was up for it but we are trying the methyldopa first. I had really bad fatigue from a number of betas and the methyldopa makes me fatigued but as I take it before bed this is desirable. I have noticed after a couple of weeks that is decreasing.

I have hyper pots and have never noticed muscle weakness associated with it. I take clonidine and exercise to help with *everything*.

Where are you located? There are a small but geographically diverse number of good treatment centers in the country. There’s a link on the main page to Drs on the main page of this site and you can ask about specific ones here. I wouldn’t trade my Milwaukee-area specialists for anywhere so don’t think Mayo is the only one. Cleveland Clinic, Vanderbilt, Stanford as well as Mayo are all excellent. Coat hanger pain is what you are describing and many of us have it. It’s associated with dysautonomia. If remember correctly the theory is that there isn’t sufficient blood supply to the upper back/neck. Search the forum and check out the main page for more info. I take occasional Flexeril and use heat for mine. Air hunger as @WinterSown has suggested, also affects some of us. It is scary! Mine seems to have improved with meds and exercise. Many of the symptoms are scary but with treatment it gets better. As my specialists have told me more than once, this is not fatal. Once you learn more about it and how your body works, or not, you adjust to it. It still sucks but I think we adapt to the new normal. The best thing you can do is keep fighting to get better. Do the increased fluids/compression garments/salt/exercise/learn your limits/save spoons. They are treatments because they all help at least somewhat and for me at least every little bit adds up. I am nowhere near ok but I am ok with that now.

I have it as well. I take clonidine which lowers my hypertension nicely. Methyldopa is nice,it lasts longer and doesn’t give the rebound hypertension that is common with clonidine but in my case it doesn’t lower my BP enough. My hypertension kicks in around mid-day until bedtime before which I take an extra dose so I don’t get supine hypertension. Mid to late afternoon is when my overdrive symptoms kicked in before I was diagnosed/treated.

I had to find a new PCP when mine left to do urgent care. I found my awesome new one, who thouroughly understands dysautonomia, via a state Dysautonomia Facebook page. I hate Facebook and only got on it for a few days to get the info. I asked for recommendations in my area and couldn’t be happier. She is affiliated with a medical school that has an autonomic neurologist on staff which I think helps.

I may be wrong but doesn’t that usually fall under mixed or undifferentiated connective tissue disease? I have a positive ana with positive anti-smith antibodies and something else (brain fog, sigh...) and my diagnosis is UCTD. I also have joint pain and swelling and of course, Dysautonomia. The first rheumatologist I saw (pre-positives) blew me off because the blood work wasn’t positive but my present one diagnosed me and treats me with plaquenil. I would seek out another rheumatologist, especially if you have symptoms of autoimmune disease. There’s quite a bit of research indicating Dysautonomia is either an autoimmune disease strongly linked to it.

When I was bed bound and eventually hospitalized (weighing 84#), at my release my dys specialist and PT told me to get up every hour and get up every day and get dressed (sweats). At first my husband and I “danced”, he basically held me upright for a few minutes every hour. I also started exercise, strength training as others have suggested and a stationary bike for 3 minutes every other day. It was torture but I either did it or stayed like I was or got worse. I vowed I would never get that bad again and exercise was/is a huge, huge part of my improvement. I am still very messed up and housebound but I exercise no matter what. I do strength training 3 times/week and aerobics 3/week. I ride the bike or use a rowing machine at home from 20-30 minutes *depending on how I feel* feel rotten=20 minutes, and after 2 years of going to PT I tested normal for strength in my legs and arms in November. We are working on core getting there too. It was sheer bloody mindedness. I started at PT with a water treadmill which was great. Along with medication, exercise has helped me most. It’s important to start slowly and listen to your body. I increased my time on the bike by 30 seconds every week and gave/give myself permission to go easier if necessary. You can do it! We are always here for support and encouragement.

Good for you! I completely agree with letting people know when this happens. I reported a dr once to the organization she works for and had a number of calls from various people seeking facts. I even had one from the head of her specialty department, her boss, and another from the dr in charge of the facility where it happened. I know she was referred for special training but I don’t know the details. She’s still there but I will never see her or go to that facility again. I did not escalate it to the state because it wasn’t warranted but I would never hesitate to.

I second the advice on rebound hypertension. It can lead to hypertensive crisis, even in those with low BP normally. I occasionally take an extra 1/4 tablet if I know I am going to be doing something that raises my BP but don’t stop it entirely. The rebound can be anywhere from 8-24 hours later so don’t think it isn’t happening a day later. You have to check. I am extremely sensitive to it and only take 1/4 tablet three times daily and a half at bedtime (I have supine hypertension). Methyldopa is another option which i *think* doesn’t have the extreme rebound effect but is on back order in pharmacies until March in the states. You should ask your dr or pharmacist about rebound with methyldopa.

In my case I had clonus in a neurological exam. It lasted 8+ seconds. I never did find out why. Chiari was to rule it out.

I don’t know. Personally I haven’t found anything that helps all the other symptoms of being upright too long except sitting with my legs elevated when I get that I have to sit right now feeling. I do fluid load before trying to be upright anything more than a few minutes and that gives me a few more minutes. We are all so different, it can be blood pooling, norepinephrine release or something specific to you.