firewatcher

I have seen a sleep specialist (Dr. Scott Liebowitz -- Laureate Medical Group) for years. He has been my strongest supporter and understands POTS better than most doctors I've ever seen. He is NOT a POTS specialist, but a sleep specialist and a fantastic person. Dr. Howard Snapper (cardiology) in Woodstock has many recommendations, but I have never seen him. I go to Vanderbilt for my POTS doctor, but have also heard good things about University of Alabama in Birmingham. You would think that a large city like Atlanta would have a specialist, but I have yet to find one after living here for 20 years and having POTS for 14. If you find someone, please let us all know!

Telemedicine is a growing trend. Dr. Blitshteyn is a legitimate expert in the field of dysautonomia, google her or go to PubMed and put her name in the search box. She routinely answers questions in the newsletter from this site. It seems like it might be a good option for those who cannot travel. Finding a local doctor to work with her will be the issue, but MD to MD can be more effective than patient to MD with the weird stuff we usually have. Can you call their office, explain the situation and ask for a discount?

I take naratriptan for acute migraine, not for daily headache. Imitrex did not work for me, but naratriptan does. You may need to try several of the triptans till you find the right one for you. They are not all the same. I have completely disabling migraines that last several days, so the side effects of the drugs are far better than the migraine itself. I was told, you need to take it very early in the prodrome phase of the migraine for it to help, if you wait till the pain starts, it is less effective. https://www.drugs.com/imitrex.html

Here is a good source to understand your labs: https://www.kidney.org/atoz/content/gfr

I have stage 3 CKD, eGFR 48-50. I’ve had it for 13 years. I’ve repeatedly asked my docs at Vandy and my nephrologist and they says POTS “will not cause” CKD. I think that there is correlation between the vascular issues with POTS, as well as migraine and CKD, but not causation. Meds can cause kidney function decline, as well as high BP, and low BP “kidney insult,” but it has to be really low as can happen with acute kidney injury. Chronic dehydration can hit the kidneys too. NSAIDs will definitely cause CKD. Get your labs from as far back as you can, and keep track of them. The trend over time is more important than single values. Serum Creatinine is an indirect marker of kidney function via muscle mass, BUN (blood urea nitrogen) is more of a protein intake marker, but will be elevated with dehydration. Protein in your urine can have multiple causes as well.

I grey out once I get in the 170's. I routinely get into the 180's + with exercise. My HR during exercise is much faster than what would be expected for the level of exertion (and age) and I will grey out (lose vision) during exercise at that intensity. My doctor suggested that during exercise, my BP drops to "just below" the threshold for my vision to be maintained while exercising upright. I have to slow down when that happens. It has gone to 160 BPM with only standing (but I had the flu.) Not "sick," it has gone to 140's with simple standing. Although I am considered "conditioned" due to exercise, I still have a frequent 30+ BPM increase in HR with simple standing.

The best medication for me was Celebrex/celecoxib. The best exercise for me was to pull my shoulders up to my ears (like a shrug) and squeeze that as hard as I could and repeat until they fatigued. This stopped my neck spasms.

I followed Dr. Levine's exercise protocol. He instructs to start recumbent and increase the time and frequency before intensity. I won't lie, it is difficult, and it hurts, but I am so much more functional now than I was 4 years ago.

I started Emgality. The only side effect was bruising and pain at the injection sites (which was not bad at all.) I did not get fatigue afterwards. However, I still have menstrual migraine kicking my butt, but it is only the first dose, so maybe it will get better.

Pistol, I do understand that we are very different in the way our bodies handle medication. Many cardiologists, including my own (without any caution,) have prescribed these together. For some it is a correct combination, much of that is based on the experience and skill of the doctor. We MUST be aware of the possible consequences of the medications that we take. We feel crappy enough most of the time to ignore more serious warning signs. https://www.ncbi.nlm.nih.gov/pubmed/2857518

Yes, It helps with my migraines. It cut the occurrence and intensity down by almost 50%. In some people using BB and CCB together may be synergistic (each one could make the other stronger) and "could" cause your heart to beat too slow or stop. My cardiologist suggested that I take both, but my GP said not to do it. I was not so disabled by the tachycardia, so I stayed on only Verapamil alone.

I've been on Verapamil for years. It has not made my POTS symptoms worse. Honestly, I can't tell that it has effected my POTS symptoms at all, but it did cut the intensity of the daily headaches.

I have a prescription for Emgality for migraine. It is one of the CGRP antibody injections. Has anyone with POTS tried it? What have been your experiences and side effects?

You can get compression garments that are made for exercise. I have compression leggings and shorts made for runners. I also have compression calf sleeves. They look like regular workout gear and help greatly. I am not as sore if I use them for my workouts.

I hesitate a bit before wading into this, but here goes. I have seen and been treated by Dr. Benjamin Levine as well as completing his exercise protocol. As far as doctors go, he has been one of the most compassionate and supportive doctors that I have ever seen. He expressed his regrets over his "Grinch Syndrome" comments and was incredibly kind and informative when I saw him. He understands how hard his exercise protocol is and is VERY encouraging about using it as a coping mechanism for POTS. I am one of his successes. I am not cured, but I am more functional and fit than many of my "normal" friends. It is HARD to do and hard to maintain, but I will continue to try. I hope this coma patient recovers and makes up for lost time. Honestly, I hope we ALL do.

Has anyone had a Cardiac CT angiography with nitroglycerin administration? How did you react POTS-wise? Anyone also with migraine? My cardiologist scheduled me to have one for an investigation of chest pain, but did not explain the procedure. After talking to the nurse, I cancelled. Any experiences?

I have had this frequently in the past. I have had goosebumps in a hot shower, washing dishes and while working out. It isn't a chill, it is an ANS response, because my pupils will dilate (someone saw it and asked if I was OK) at the same time and sometimes my whole body will start shaking. It happened frequently when I was changing meds for migraine prevention. I assumed it was like the "threatened cat" response if you've ever seen a cat about to attack. I have no idea if it means anything except that if it only happens on one side, it is likely a seizure (according to an episode of House, MD.)

My gallbladder had bothered me since age 6, the doctors told me it was "growing pains." I avoided as much fat in my diet as I could until age 28, when it suddenly did not matter what I ate. The "softball wedged between my spine and sternum" pain occurred after eating anything. My GI also worked me up for GERD, Barretts's esophagus, etc. and did a HIDA scan which came back at 17%. I did have my gallbladder removed and have not had that pain reoccur ever again! It did not effect my POTS symptoms or increase my gastric transit time (which was found to be very slow.)

bombsh3ll - I took a tablet before bed. I never tried the nasal spray. As long as you don't drink after you take it, and urinate regularly during the day (or excessively) you should not have hyponatremia issues, due to the "release" of excess fluids. I only had hyponatremia issues when I took it round the clock. I don't take it anymore, after beginning hormone replacement therapy I found that I was concentrating my urine normally and was able to stop taking it.

My labs initially looked like diabetes insipidus and I was prescribed dDAVP. It is a simple test at first with a blood draw after an overnight fast: DI or partial DI if your serum sodium is above 145, serum osmolality is above 295 and urine osmolality around 300. Later once DI was ruled out for me by a water deprivation test (not fun,) my family doc continued to prescribe dDAVP, but only overnight and it was for nocturnal urination and POTS. My son's pediatrician prescribes it to kids for bedwetting. The concern is hyponatremia - when your serum sodium level drops too low, which can happen quickly on dDAVP if you continue to drink any fluids. Several Vanderbilt articles mention using dDAVP for POTS and OI. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3419341/ https://www.researchgate.net/publication/290995380_Desmopressin_In_The_Treatment_of_Postural_Orthostatic_Tachycardia

I started with a rowing machine, but I tolerated the treadmill pretty quickly. The Concept 2 rowers are comfortable and smooth as long as you get one that has not been beaten up at the gym, if the slide grabs or the chain is old, it isn't fun. I hope they figure out your headaches, I had to train around migraines and did not make much progress until they were better controlled. Whatever you do, protect your joints, especially once you begin to feel better and push yourself.

I had to re-work my HR zones entirely. 220-age is not even close to accurate for me, my tested max HR was almost 20 BPM higher than that formula. IF you test MAX HR, do it WITH SUPERVISION, preferably a PT, doctor or nurse. My BP drops once I hit a certain HR and I will gray-out, but can still hear: Dr. Levine gave me tips on how to counteract the drop during exercise, like squeezing a ball in each hand. I also have a Polar monitor with a chest strap and found it very useful for tracking times and types of exercise: it has a wonderful progress/diary function that allows you to analyze you data from the computer. Even after 7 months of training, when I got to see Dr. Levine, he reworked my HR zones even higher (again under supervision.) We are a "special case" with our heart rates and PRE and orthostatic issues are always our nemesis.

I did the complete Levine protocol starting January 2015 and in November of this year, I earned my Black Belt in karate. WooHoo! BTW, Dr. Levine is extremely kind and supportive of our efforts with his protocol, I saw him in July of 2015 and he tweaked my exercise to meet the requirements for karate and supported me during my efforts. I started with strength exercises given from my Pilates instructor/PT (who also oversaw the protocol for me,) but there are plenty of books that you can look at for Pilates exercises too. They are very good because they are supported by the floor or other things and many are supine or reclining. I worked up to a personal trainer at the gym and did several of the easier strength machines for several years. I continued to do the entire Levine protocol during the last several years and still do it today. I have noticed that it is "lost" quickly if you stop and very much a health/orthostatic maintenance thing for me. Quads, hamstrings and calves are critical for the "muscle pump" of getting blood back to your head. I try to workout 6 days a week and have found that muscle soreness and fatigue are far greater when I take a break. The beauty of Dr. Levine's protocol is the gradualness of the effort. It can seem so very slow that you don't see improvement until you look back and realize that you just did "whatever" without graying out. My heart rate is still excessive (for a normal person) with exercise effort, but I can tolerate so much more effort now than I could before that almost no one would realize I have any issues at all. Soreness and fatigue WILL be an issue, but it improves if you stick with it. If you can't progress, keep doing what you did before and don't stop. I'm happy to answer any questions you have about my experience.

I have had similar symptoms as well. Several times, while "in a POTS flare," due to changing meds, I have flushed hard in the face and had my hands and feet go white, ice-cold and numb with tachycardia and chest pain. At the same time, my pupils would dilate wide, I would get painful goosebumps and then I would start shaking. It wasn't pleasant and it was visually obvious to other people as well. I was switching between seizure meds for my migraines and it threw my ANS off. I'm definitely not saying it is normal, but it can happen.

I've had stage 3A Chronic Kidney Disease for 12 years. It was apparent on my labs (though not ever mentioned) before my POTS dx. I've asked at least 3 POTS specialist doctors (at Vanderbilt and Dallas) and they have assured me that POTS does not cause CKD. I've also talked with enough nephrologists and CKD patients to know that CKD does not cause POTS. With a BUN at 30, it is likely that you were dehydrated (or hypovolemic) or eating a LOT of protein. There are things that you can do that will prolong the function of your kidneys at this level (avoiding certain drugs and eating mostly vegetarian/vegan to lessen the filtration burden.) The "normal" tests for kidney function will not necessarily be accurate for us because of the whole POTS/hypovolemia/blood volume/blood pressure issues. Hypothyroidism can also mimic CKD and is absolutely correctable. Don't let any doctor belittle you, these are your kidneys and are really important. Find a doctor you can trust if you can, and learn everything...but you will likely have to do it all yourself. The thing to remember with kidney function is that it is not based on the results of a single test, but the trend of results over time. Even with CKD, it is very likely that you may have decades left without issue, but your kidneys have "less reserve" than fully functional organs.