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I have no experience with this but I am sorry that it wasn’t better news. So much of this is so hard to deal with that new, frightening diagnoses are just cruel. I hope that you find out what is really going on and it’s something treatable.

Man, my Drs offices are frigid! I have to dress for hot/humid outside and freezing inside.

Yay! Congratulations! That IS an achievement.

I still limit phone calls and interacting with people. Before I was diagnosed, and for several years afterwards, I really struggled with it. In fact, when I was trying to work from home what finally made me realize even that was impossible was a conference call. I very suddenly got extremely unwell, I now know it was norepinephrine dumping. I was diagnosed after this. I am better 5 years later with decent hyperadrengic control but it’s not something I enjoy doing, I still get sympathetic overdrive if I talk on the phone or in person too long. Too long varies by day/hour.

It’s likely blood pooling. It’s common for many of us. The blood goes to the digestive track and then isn’t available for standing up. Some people use abdominal binders for it.

I agree, showers are extremely difficult. I take quick, cool showers. I used to take them before bed so I could lay down immediately after. I found strengthening my legs helped as did alpha blockers because the blood pooling causes the norepinephrine dumps.

Profound fatigue was my presenting overwhelming symptom until I realized I was having tachycardia a few months later. What helped me the most was getting diagnosed with an autoimmune disease and starting treatment for it. I started Plaquenil and after a few months I got a bit more energy. Eventually I was started on SCIG which also is helping with it now. The other things that help are exercise, ubiquinol (supplement), physical therapy making me stronger, scheduled rest days and better control of HR/BP. I also struggled with non-selective beta blockers the first time I tried them but did very well on cardio selective bystolic. It controlled my HR the best of everything I have tried and didn’t make me fatigued (I took it at night at first, it’s once a day dosing). I am now on ivabradine which doesn’t make me fatigued but doesn’t work as well on the tachycardia. I also now occasionally take modafinil, I had been taking it a fair amount of time before the SCIG started helping. It works well but it took awhile to get the dosing down or I had crashes when it wore off. I tried Ritalin first but that gave me tachycardia.

If you can find a local Dr that’s open to learning this website/book is designed for physicians and patients https://thedysautonomiaproject.org/

I should have said that I joined my state’s Dysautonomia Facebook group and asked there. I hope that you have this option, it’s very supportive and helpful. Otherwise is there a medical college near you? My new Dr told me that they are use to complex cases with poly pharmacy because they see sicker patients more routinely. I am so sorry that you are going through this. I understand how very frustrating it is to try to explain it repeatedly. I had one urgent care PA refuse to give me IV fluids for which I had a standing order because he had never heard of dys. He was in the same medical group as my specialists and had access to all my records.

Please let us know how you do on it. As the weather warms up my migraines are getting worse.

When my beloved PCP left practice I went to the clueless Dr he recommended who was obviously terrified of treating me. She looked at my diagnoses and meds and told me she was uncomfortable with polypharmacy. She spent some time later on looking into dysautonomia and declared that my problem was all down to being hypermobile. I am somewhat hypermobile but not that bad and by then my neurologist and cardiologist were positive it was autoimmune which was confirmed later by Celltrend testing. To find a new dys aware PCP I signed up to Facebook (hate it) briefly and asked for recommendations in my area for a PCP. I had one response for one associated with the local medical college and she’s great. Knows about dys and treats a number of POTS patients.

Fluids, salt, compression hose and fludricortisone if they don’t help enough. I don’t feel well until my BP Is in the 130-140/80s sitting and that’s not too high at all. My cardiologist just doesn’t want it >150/90 but is fine with 130/140s. It drops immediately on upright but the goal is to have it high enough to not drop so as to cause symptoms. When my BP was consistently low in the mornings I would quickly drink 16-32 ounces of fluids in bed and then wait about 15-20 minutes and then get up and immediately put on compression stockings. The stockings stayed on until bedtime. I now have hypertension but BP is still a bit low and I am tachy in the mornings so I drink about 8 ounces before getting up. My dys neuro told me to do this, it works very well for me. This gastropressor reflex is a well known method of quickly increasing BP.

@PistolI have reacted very badly to most insect bites for most of my life. This is specific to lupus but I am sure it applies in general, especially those of us with autoimmune disease https://www.lupusuk.org.uk/lupus-and-insect-bites/. I tested negative for mast cell and a trial of the recommended meds did nothing for me so I don’t think that’s much of a problem for me. @toomanyproblemsI have been on SCIG since November so it will be interesting to see if I react less than previous years. It’s still too bloody cool and wet here so far this spring/summer but as soon as it warms up the mosquitoes will be brutal so that will be a good test.

I have a diagnosis of generalized hyper mobility of the joints that my neurologist gave me as soon as I was diagnosed. I am generally double jointed (used to think my shoulder/elbow thing was a cool party trick, ha!) but I haven’t done the testing because the geneticist is booking out almost a year and there’s no treatment for me. I probably will pursue the testing in the next year or so for insurance/disability.

I get the flu shot every year but it has to be a “dead” vaccine not live. My neurologist told me this and I believe that the flu would be worse for me and make me flare intolerably. My onset was sudden post-viral, not vaccine related. I credit the vaccine with me having a very, very mild case of the flu a couple of years ago. All my able bodied friends that forgo the shot we’re really ill. I flared for several weeks but not too badly.

My symptoms generally are delayed 24-48 hours after I do something like Dr appointments or PT appointments or if I exercise too hard. I am housebound so don’t go anywhere else.

I find this very interesting, way above my present understanding but I will read the information in the links. Please let us know how your daughter does.

You might find this video about APS and dys of interest https://vimeo.com/282536351

Arm placement matters too. I tested a new Welch Allyn automated arm cuff with my neurologist’s automated one and also manual readings and the readings were 20-50 points higher on the Welch Allyn home machine. These false readings made us think I had severe hypertension when in fact it was modest. I had been taking unnecessary medication. Out of 15 readings in the office that day only 1 matched the manual one with a stethoscope. I also was instructed to keep the arm at chest level and out straight and wait 3-5 minutes before repeating it. I have discovered that in my case slight variations in arm placement can raise or lower my reading by 10-15 points systolic. I am now using my Omron arm cuff and will take this to my cardiologist appointment next week to be compared to their readings. I, too, have heard that the wrist cuffs are inaccurate.

Oh I am sorry @bombsh3ll how frustrating. When I did my second catecholamine test I was using florinef and wore stockings. This was not on the day of my TTT. We have discussed checking again but this time because I am better controlled and physically stronger I was told I would have to stop meds which I refused to do. Subsequently I had to stop the beta and alpha blockers to switch meds and it was truly awful. Would there be any benefit from checking without stockings to induce the hypovolemia and norepinephrine dump?

I got this device from the pharmacy I originally got my thigh high compression stockings from. It makes getting them on much, much easier. https://www.amazon.com/JOBST-BEI010913-Jobst-Stocking-Donner/dp/B00120238E?psc=1&SubscriptionId=AKIAILSHYYTFIVPWUY6Q&tag=duckduckgo-d-20&linkCode=xm2&camp=2025&creative=165953&creativeASIN=B00120238E

I tried several betas, selective and non. The non-selective were a nightmare first time around, 4 years ago. I was very unstable at that time. I was also very sensitive to lights/movements/ smells etc.; traveling in a car was horrible as were tv shows/movies that panned quickly. Flashing lights were the worst. I still have some trouble with very quick panning. The selective beta that helped the most with HR was bystolic. It had almost no effect on BP which was lower at the time. BP has been going up (I am hyper pots and 57 years old) the past year or so so we switched to carvelidol which is non-selective and works great for BP but not HR. For the hyper pots I took methyldopa which had no effect on BP and then clonidine which lowered BP and helped with adrenaline storms, including hypersensitivity to motion and symptoms that you describe but the rebound hypertension was terrible. I am now on guanfacine Er (thanks Pistol!) which helps with the hyper symptoms quite a bit. It doesn’t lower my BP much and doesn’t help HR so we added ivabradine for HR control with no effect on BP. Like Pistol it’s taken years to find meds that address the various issues and constant tweaking and changes as the weather warms up/cools off and my body stops responding to meds. I think that I can handle the non-selective BBs now because I am stronger and need the hypertension control. 2.5 years of physical therapy have helped a lot.

Wow @KiminOrlando how interesting. My Dr sometimes refers to me having MCTD too, he uses UCTD and MTCD interchangeably with me. I didn’t realize that you could test positive then negative for a disease and then have a different one. Freaky. Thanks for the info.

I saw this and thought they said the person had been having PT but that’s only for muscles. I would think that the person would have dys, definitely.

Undifferentiated Connective Tissue Disease (UCTD). It’s a catch all diagnosis when some things come up positive but not enough of any one thing for a definitive diagnosis, at least that’s my understanding. In my case my rheumatologist calls it pre-lupus but also said that at my age if it’s going to morph into something full blown it’s more likely RA. I had more positive lupus antibodies though so I don’t know. I have stabilized on plaquenil and SCIG but I still get flares. I had been checked roughly every five years for thirty years for autoimmune disease and it wasn’t until 18 months post-pots diagnosis and the third ANA in that time that one came up positive.