firewatcher

This is one of those situations where one condition (likely) does not cause another, but will occur frequently with another. CKD and Migraine are far more common than POTS. From what I've read and talked about with my doctors, Migraine and CKD occur frequently together. The doctor's theory is that it is likely due to the underlying vascular issues that are common in both diseases. Either way, your kidneys are as precious as your brain and sometimes much harder to fix. There are other tests that your doctor can do (24-hour Creatinine clearance test as well as a renal ultrasound) that will give you a clearer idea of whether or not you have kidney damage. Good luck and please post results!

I have POTS and Chronic Kidney Disease. My doc at Vanderbilt AND a POTS doc in Dallas have said that POTS did not cause CKD. Your eGFR can fluctuate by that much due to dehydration, meat intake or exercise...what matters is the trend over time. I've managed to hold steady at stage 3 CKD (eGFR around 50) for 12 years by restricting my meat intake. Red meat and processed meats are particularly difficult for the kidneys to filter and hasten decline. Even under normal circumstances (like anything with POTS is normal) blood volume, blood pressure and medications (particularly NSAIDs like ibuprofen) can alter kidney function. Some medications and supplements (like GERD medications or vitamin C) can effect the test, which will show a falsely high creatinine/low eGFR because it messes with the test itself. I've never met a nephrologist that was knowledgeable about POTS...ever, so you may be in no-man's-land with this. The best thing you can do is have your kidney function monitored regularly (basic metabolic panel quarterly) and do the best to educate yourself and eat well (as if you knew you had kidney issues.) I've never been on Florinef due to my kidney function numbers, but salt has not been restricted or a problem. Don't let a doctor talk you into thinking that this is nothing or normal, watch it yourself. I hope this helps.

I've seen several nephrologists because my kidney function is not good. None of them had ever heard of POTS, but they were actually some of the nicest doctors I've been to. Ask about Nutcracker syndrome and Gitelman's plus maybe a kidney physically dropping with standing , and be prepared to discuss it in regard to your own labs, especially the electrolytes. I would think that an endocrinologist would be better prepared to diagnose renin/aldosterone issues.

New Study by Dr. Stewart about low CO2 levels causing POTS. http://jaha.ahajournals.org/content/7/13/e008854.long I'm not sure I understand what they tested (serum CO2 or blood-gas,) but my BMP's have always shown low CO2 levels indicating high anion gap metabolic acidosis. Anyone else? Any insight on this study is appreciated.

I was also tested several years ago and found that my B, D and ferritin levels were low. I'd been on multi-B supplements before and felt worse with an increase in tremors. This got MUCH worse for me after B12 injections, so I quit. My doc supplemented vitamin D too (at prescription levels) and I ended up having worse migraines. I also took iron to bring my ferritin back up. I'm not sure if the deficiencies are "chicken or egg" with us. Are they low because of POTS or do we have POTS because they are low? I feel better off of the vitamins. Who knows? I dunno.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3999238/ I found that melatonin helps me with sleep and POTS. Beta blockers and other drugs suppress melatonin secretion, as does bright light at night. I've seen an article that states many POTS patients also have Delayed Sleep Phase Disorder (circadian rhythm disorder) but I am unsure where they get that info.

Yes. Verapamil is known to cause constipation. I have always had slow transit constipation and Verapamil made it much worse. I take Miralax every day and it helps tremendously. You can adjust the "dose" until you get the right amount for your bowels to work.

I see Dr. David Tian (cardiologist) at Piedmont Heart Institute. I have only seen him twice, so I have very little experience with his POTS troubleshooting (mine is fairly well controlled right now,) but he does know more than any other doc I've seen in the past 10 years...other than Vanderbilt. If you can travel, go to Vanderbilt. University of Alabama, Birmingham has the Mitral Valve Prolapse Center which also treats POTS, but I have never been there.

Merry Christmas!

POTS is not diagnosed by a blood pressure drop, if it drops it is considered Orthostatic Hypotension. I have Hyperadrenergic POTS and my BP is low when lying down and high when upright. I am a martial artist too, and working out currently around 4-5 hours a week (my HR gets into the 180's during forms/kata or sparring and I am 46 years old.) I completed 7 months of the Levine POTS exercise protocol and still have high heart rates and POTS. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3639459/

https://www.mayomedicallaboratories.com/test-catalog/Clinical+and+Interpretive/8159 Looks like it could be anything from allergies or asthma to MCAD, lupus or hyper IgE. Definitely needs to be interpreted by a doctor who knows what they are looking at! Good luck and keep us posted!

I was dxed with "POTS with hyperadrenergic tendencies." My supine BP is usually 90/50, sitting goes to 100/70 and standing can go to 170/150 or 99/88 depending on the moment. I get headaches, flushing, tremor, cold extremities, shaking and grey-outs, but have never fainted. My HR goes from supine 40 BPM to 120+ BPM on standing and 180+ with exercise.

My HR skyrockets with exercise too, well above what max HR should be for my age if you believe the 220-age=HR equation.

Are your headaches worse recently? This spring I had exactly the same thing happen, I started feeling full but then it progressed to outright, almost constant nausea. My migraines were very bad at that time as well. My whole GI tract just stops when they flare up.

Your diet can influence your symptoms, otherwise the knowledgable POTS doctors would not suggest some of us increase our salt intake. Vegan, vegetarian, low-carb, raw or paleo diets each have people that do well on them. Other than nutrients and vitamins and minerals, you also have to look at your own "microbiome" or gut bacteria. Apparently new studies are showing that there are several different types of microbiome and that one gut bacteria type may not be healthy in other populations. The consumption of meat or not can effect your gut critters positively or negatively and that can effect serotonin and all the neurotransmitters, most of which are in the gut. Probiotics can help, but they have to make it all the way to the gut. Fecal transplants are finally a thing, but they are creating mixed results. I don't think there is enough real information about what is healthy for "everyone," look at how the recommendations for eating eggs has changed during our lifetime. I'd probably suggest that you eat what makes you feel the best and has does the least damage to the rest of you! BTW, I've been vegan, vegetarian and omnivorous over 45+ years. My POTS is better if I avoid high histamine foods though.

Hi Big Guy, I don't know if it helps, but "from the outside" I lead a "normal" life now. I was diagnosed 11 years ago. I have always been self employed, so my work dwindles when I have flares. Two years ago I started an exercise protocol for POTS. It helped. My goal was to go back to Karate (which is really good for POTS since it is super-core intensive and not sustained cardio) and I have, but it isn't easy. It hurts a lot more, I get dizzy and can't spar long or be as active as the rest of my classmates, but I am doing it. If I pass the next two belt tests, I will be a black belt this time next year. My last cardiologist was very negative about me exercising. He said "POTS patients can't have physical goals," and "why do you want to do karate, you don't seem like an angry person." I did not go back after that appointment. Monday, I saw another cardiologist who I hope will help me. It is possible, and I keep hoping and coping with what I have every day.

Yes, I can relate. I had surgery 2 weeks ago and had a lot of the same stuff. Change is bad for POTS. Hoping we both settle down, heal and feel "our normal" soon. BTW, percocet was awful for flaring my POTS symptoms. I did better with the pain than the drug.

I had severe daily headaches, tremors and palpitations. Stimulation like movies or crowds or super busy days were just too much. Klonopin helped with the "overstimulation" aspect and the headaches and tremors. The headaches got worse and I gave up on a lot of social things because it was just too much. A lot of this has improved with my current Mast Cell Disorder meds, but the tremor and overstimulation are still a lot to deal with...I'd really like to take my kids to a movie.

I started Klonopin after my diagnosis. It helped. When I discontinued, I saw a return of the symptoms that I was taking it for. Any drug can be a tool, off label or on. You have to trust the prescribing doctor and weigh the risks vs. benefits. If I trusted my doc, I'd still be taking it.

I have been on and off of Klonopin for several years at a time. I saw a good improvement in my symptoms while taking it. I tapered off slowly several times for autonomic testing at Vanderbilt. The last time I tapered off was due to changing primary care docs and HER stigma against the drug (its an "anxiety drug" so you have to have anxiety...) I have not been back on it for several years, but I do wish I still had it for flares and stressful occasions. If I finally find a doctor that will work with my on my POTS and not instantly go to the "anxiety" label, I will probably try to restart it. There is a difference between addiction and dependence. You can be dependent on a drug (like insulin for diabetics) and NOT be addicted. You and your doctor (if you trust them) have to weigh the options for long and short term consequences and determine if the possibility or risk is worth the reward. For me, the tapers were very gradual and slow (over 8-12 weeks.) My only withdrawal issues were a reoccurrence of the symptoms that the drug improved.

toomanyproblems - He prescribed Celebrex in addition to Zyrtec, Zantac and Allegra. Some MCAD patients cannot tolerate it, but we are thinking that I might have prostaglandin issues instead of histamine issues. High dose antihistamines (H2 blockers) and Zantac (H1 blocker) seem to be a first round treatment option, but MCAD can be a super tricky thing.

Sorry you have this, but I am glad you are here. I've had my diagnosis (hyperadrenergic POTS) for over 10 years and honestly, I'm still trying to get a handle on symptoms and successfully deal with every day. I heartily second Yogini's suggestion of going to an Autonomic Specialist (Vanderbilt, Mayo, Cleveland Clinic, etc.) Most doctors will not know what they are looking at, they just don't see enough of us. Even with really common disorders, like migraine, there are few real specialists that understand the disorder (maybe 2 per state unless you are in a MAJOR city.) Take a deep breath, and get started educating yourself: what helps and what makes it all worse for starters. Keep a symptom log and get every one of your labs and medical records you can get your hands on and organize them for yourself. Talk to the doc that dx-ed you with dysautonomia and see who they suggest you see, why did he dx you with it? Lifestyle and diet changes can be good, but many are highly personal (what is good for one, may not be good for you.) You will likely know what your bad habits are already. I recently kept a food diary to see if anything I was eating/craving were migraine triggers, surprisingly there were several (ketchup, eggplant, cooked tomatoes...) I don't eat them anymore and I am doing better. My neurologist and nephrologist agreed to let me try a Mast Cell Activation Disorder treatment drug and honestly, I'm better now than I have been in 10 years. Amitriptyline was an awful drug for me too, Klonopin was great, but I stopped taking it because of the stigma (I did not have a good primary doc and she went down that old anxiety road.) If you really want to get into the thick of it, search PubMed. This is the super library of almost every medical article ever written, it has a search function where you can type in any symptom and condition and read almost every research article for the last 100 years. Good luck and good health!

Odors and chemicals are tricky things. I have had very frequent migraines that severely heightened my sense of smell to painful levels. NO ONE who does not have this hyperosmia can truly understand. It will be work for you, but you should be able to find an oral surgeon or dentist to help. I have been to the same dentist for over 30 years and they know my quirkiness and even keep specific unflavored/unscented oral products and equipment for me. My neurologist has been a big advocate for me on this type of thing as well. Good luck! BTW, I just found out that I have an allergy to Chlorhexidine and its used in MANY healthcare and dental settings. Chlorhexidine is also in disinfectant mouthwash and rinses. It can give susceptible people incredibly nasty chemical burns and anaphylactic reactions. You can get skin tested for this to confirm the allergy!

Dizzyape, I am glad you had a "good" appointment! I have had only good experiences at Vandy. Dr. Peltier (neurology) is excellent there and I have seen her several times. I hope you find both answers and improvement.

As awful as you've read it could be, remember that it will be controlled and monitored by people who actually care and know what they are looking at. They actually want to know as much as you do. My experiences at Vandy have all been good ones. I hope they get you answers!