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Yes, I stood for 10 minutes. If remember correctly NE hit somewhere in the upper 600s, range was to 400.

I know exactly what you mean. I hate taking them but have no choice. One thing you might not be aware of but clonidine has definite rebound effect when you stop it. For me the scary high BP comes 24 hours later. I checked with a pharmacist and it’s true so it’s very important to wean off it if you want to stop.

@bombsh3ll I had to stand the 10 minutes at a separate appointment from the tilt. I had nurse on one side and hubby on the other waiting for me to faint but I made it. It was worth it for the hyper pots diagnosis.

Oh no! I completely understand. I was on methyldopa for awhile but it didn’t keep my BP down enough so went back to clonidine. I preferred methyldopa. Please let us know what happens for you.

I am sorry that you are going through it. I know how hard it is. My husband is home most of the time and does everything, driving me to appointments, shopping, laundry etc. When I was desperately ill he had to travel for a few days at a time every five weeks and I had friends/family stay with me. The first time he had to go see his mother out of the country for 10 days I was terrified. I had a pouch for my cell phone that I kept on me all the time and all the neighbors and friends were on call. I also hired a service to come to the house everyday to do whatever I couldn’t, cook, do dishes, etc. we froze melas and when I couldn’t cook all I had to do was microwave them. Having said all that please know that “regular” POTS is not fatal. I have seen three of the top autonomic specialists in the country and they all told me that. Do all the self care you can. When I get tachy I drink 8-16 ounces of fluid quickly and in 10-20 minutes my HR always comes down. Lay down for awhile that also stabilizes things, sit up drink the fluids and wait to get up. Are you using compression stockings? Drinking enough and getting enough salt? No hot showers? Head of bed elevated? They all help a little and every little bit helps. I also suggest reading The Dysautonomia Project there are lots of good tips there. Exercise helps make the leg muscles stronger which also helps. I love the the idea of a service dog! I have pet dogs but they are wonderful as company and calming (at times).

How do you tell tachycardia apart from palpitations? When I have been upright too long, anywhere from a couple of minutes to 30+ I get this feeling like my heart/chest is going to leap out of my body and I have to sit down NOW. I also get shaky, sweaty and that overall awful feeling we all know. If I do stay upright and check my HR sometimes I am tachy and sometimes I am not. I think it’s all related to my hydration level but if I drink too much I get hypertension, it’s a terribly difficult balance. I don’t know how to explain what’s going on to my cardiologist. Thanks!

@Pistol @StayAtHomeMom I did a medrol dose pack early on before diagnosis that helped with the fatigue/pain a lot. At first I wasn’t nearly as hypertensive as I am now and now steroids do raise my BP and give me tachycardia., pretty badly, even just a dose. Not sure why the difference except age and dys creep. I also am frequently surprised at how much worse I feel going off meds. You don’t know what you’ve got till it’s gone and come back?

I second @StayAtHomeMom. A number of current research suggests autoimmune causes in at least some of us. Do a search on this forum for Celltrend and IVIG therapy. Lots of info there. Dr Schofield has a recent article on IVIG therapy in those with comorbid autoimmune diseases and IVIG. 80-some percent saw improvement in dys. @StayAtHomeMom keep pushing for testing. If you have other symptoms a good rheumatologist will treat regardless of tests. I was tested every five years or so for 30 years and 3 times in 18 months after getting sick before an ANA showed positive. After a few months on Plaquenil I started feeling better, nothing with dys but a lessening of the fatigue a bit and joints in hands and feet felt better. Nothing dramatic but every little bit helps and it allowed me to get to PT. I still flare in everything and I can rarely tell what is setting off what unless the joint pain and mouth sores pop up but I understand it now and rest. The very first specialist I saw was a not so good rheumatologist who looked at the blood tests and said I was fine. My current one is familiar with Dysautonomia. Will your PCP prescribe a short course of steroids to see if you respond positively? That’s a good clue.

I tried Ritalin, it caused tachycardia. I know take modafinil and it helps to a degree. My Drs are in Milwaukee if that’s closer for you. They are all autonomic specialists and very, very good. The neurologist worked at Mayo for several years before moving here and has done ground breaking research on dysautonomia. It’s like going to Mayo but not if you see what I mean. Let me know if you want the names.

Hi. I have to have a molar extracted on Thursday and one of the options is laughing gas. I know I can’t have anesthesic with epinephrine. I have hyper pots. Anyone know if we can have laughing gas or have any experience with this? I have a message in to my Dr but am just looking for experiences. Any advice/experiences on the extraction or after effects?

My neuro has me following a modified Levine POTS protocol. I am sure you can find information on it if you google it. I work with a physical therapist and have for two years. I have modified the recommendations to what I can handle without causing days in bed afterwards. I basically do aerobics (stationary bike and rowing machine) three times a week, balance training twice a week and strength training three days. I do this at home. At PT I do strength training and a treadmill. It’s taken years to figure out my limits but I build in rest days for when I have to go to Dr appointments, PT, other appointments (dentist etc) and visitors. I am housebound. I know I have overdone it usually when the fatigue hits which for me is a day or two later which isn’t helpful at the time. I agree that exercise is really critical and helpful.

Amazing news! Congrats. Are you hyper pots?

Hi everyone. 2 questions. I am hyperadregenic POTS diagnosed and have been for 3 years. I take clonidine for it. Question 1. I have to have a root canal next week. Any suggestions? I know no epinephrine but any other advice? I am concerned about being supine for the procedure and having hypertension. I plan to take an extra dose of clonidine beforehand. Question 2. Anyone have any info on hyper Pots and IVIG or SCIG? I am starting SCIG on November 5. Thanks in advance!

Before dysautonomia I took topomax which caused weight loss, not extreme just a bit. It worked fairly well then. I tried it again post dys and it gave me headaches so I stopped. I also tried Botox injections which didn’t help. I have increased my beta blocker, Bystolic, which helps a bit and doesn’t lower my BP much.

Very interesting. Thanks for posting. I wonder if any larger clinical trials are being done with this therapy?

I am so sorry that you both have to go through this. Like many here I tried a number of betas that caused extreme fatigue before my cardiologist recommended Bystolic. It’s cardio selective and works well without the fatigue. It’s once a day dosing for most people which is how I started. I took it at bedtime so I slept through the fatigue. I now take it 3 times a day which is highly unusual but works for me. It takes a lot of trial and error to find one that helps.

@Pistolwell it’s not that great. The longest I have done on the treadmill is 6 minutes but was faster than my usual snails pace. It took me 4 days to recover to my usual fatigued state. The longest I have managed to be up and walking around, usually cooking, is around an hour but as you say, on a good day. I take complete rest days before and after PT, dr appointments or visits from friends otherwise it takes me even longer to recover. I do take modafinil on those days because I am so incredibly fatigued. It’s taken years to learn to manage exercise and activities and meds and believe me, I am always tweaking things depending on how the day is. You know, the usual. When I started PT I was barely 100 pounds and tested very, very weak. It was shear determination to never go back to 85 pounds and basically bed bound. Last week I tested “ normal” in upper and lower body strength with significant improvement in core. I had a long way to go but I never take more than a day off, allow myself to backslide as ne necessary but never, ever stop exercise. Thanks for reminding me how far I have come!

I now, 2 years later do aerobics, stationary bike and rowing machine at home 3 times a week and various upper, lower and core strength training. I also do balance work on a Bosu board. When I go to see her I do balance work, tweak exercises and a regular treadmill. I am not on the treadmill very long yet but might get on as a Christmas present and work on endurance.

I too have hyperadregenic POTS. A couple of things jump out at me. For the high BP/HR, jittery/anxiety are you on an alpha blocker? Methyldopa or clonidine? These symptoms can be a norepinephrine surge which the two drugs block. I have taken both, clonidine works better for my high BP but I can only take 1/4 tablet or my BP drops too much. The other thing is if your ANA is elevated with no specific findings are you being treated for autoimmune disease? Do you have other symptoms of autoimmune disease? Have you had the Mayo dysautonomia or Celltrend autoimmune panels done looking for an autoimmune Dysautonomia? I have a positive ANA with multiple diseases and have the diagnosis of mixed connective tissue disease which I take Plaquenil for. That helps with fatigue and aches and pains. I also tested positive for one of the Celltrend antibodies. I am starting SCIG in November.

Have you seen a rheumatologist? Is it the ESR that’s elevated? A good rheumatologist will diagnose an autoimmune issue without a positive ANA. I am 56 and was diagnosed with Mixed Connective Tissue Disease after I developed full blown POTS although I was tested multiple times for AI for 30 years before. When my AI flares I get lots of joint and muscle aches and pains. When I started Plaquenil it helped quite a bit with the aches and pains.

Thank you @WinterSown. How lovely to remind us to cherish these hard working people. I would probably be dead without my husband and certainly wouldn’t have had the care I need without him. He does so much with humor and grace and I sometimes forget the sacrifices he makes for me.

@Pistol I tried Ritalin which gave me tachycardia so switched to modafinil which works ok. I used to get even worse fatigue when it wore off but have found times and doses that help. I am noticing that it isn’t working as well the longer I am on it so now I try to take it on bad days only. Unfortunately I have a lot of bad days. I also get most of the cognitive issues that you mention along with car sickness. It’s like my brain can’t process the input from moving that fast quickly enough. I haven’t tried guanfacine yet. That constricts blood vessels or am I thinking of something else? I do swear by exercise, no matter what. I also have to build in rest days after Dr appointments, PT, anything exciting. PT is my rock.

I used a water treadmill which I think is similar for about a year. It was at PT once a week and I credit it and my physical therapist for getting me upright sometimes for about an hour. I can do more daily activities around the house as long as I am not standing still (I am still house bound) but it helped a lot with strength and endurance. I also did strength training and the combination was very helpful. Now if I could only find a way to beat the fatigue. Give it a try if you can.

I was exactly the same as bombshell. I desperately needed to gain weight early on and now am at 7.5mg and I’ losing some of the 40 pounds I put on. I needed about 30 pounds. Exercise, even when I am exhausted beyond measure also helps. Just a few minutes if that’s all I can do.

I had early waking for 18 months and tried every prescription and non-prescription drug available. I finally hit on mitrazipine which my primary care Dr ordered. I selected it because I have hyper POTS and it has alpha blocking properties (see https://psychopharmacologyinstitute.com/antidepressants/mirtazapine-essentials-every-prescriber-know/ ). It works great and I have lowered the dose substantially over a couple of years. It also didn’t give me tachycardia which other meds in the antidepressant class did. When we upped my beta blocker I started having trouble again I found this article https://www.aarp.org/health/drugs-supplements/info-04-2013/medications-that-can-cause-insomnia.html and started taking extended release melatonin. It helps quite a bit. I still have rough nights that make the next day rough with a migraine but in general I sleep well.