jrlehnardt

Yes I believe most that have eds and pots it is just the normal pots, because it is the blood vessels in the legs being too loose that cause the pots for them but the ones that have all three it is usually hyper pots. I just met with dr afrin about mcad and his belief is more leaning that the mast cells possibly causing the connective tissue problems and the ans problems too. But since there isn't any research yet proving it, we just know that the ones that have pots and eds that may have mcad, typically have hyper pots. He said it would be interesting where all this research goes and where all of these medical conditions linked will be in 20+ more years. I have been on gastrocrom for over two months and it helped a little with flushing episodes but made me feel so wiped out and worn out to where I couldn't function. Stopped it just recently as some of the energy is back. But I am waiting for all my labs to come back so hopefully I can get on stuff that helps. I have been having sleep problems a lot an energy problems and headaches. Do any of you have chiari as well? My vitamin d has been really low and I have been on a weekly dose of 50,000 Iu and no change in energy ?

Yes, the prolapse can be from eds. Some people can have babies and never have a problem down there, others may not have gone through childbirth and have it. I had bladder and uterine prolapse at 23. By 26 I had bladder, rectal, and uterine prolapse. Non surgical options did not work for me. I had to have a hysterectomy to correct the uterus from prolapsing. I also had a cystocele repair to fix the prolapsed bladder during my hysterectomy. After fixing those my rectocele was not too bad , so I didnt have it fixed at that time. My bladder stayed up in its spot up until about 10 months ago, so it lasted for about 6 years. The success rate isnt super high. They actually are pretty upfront , letting me know that I will most likely have to have it done again and that it probably will drop. Well it did. Since I didnt have my rectocele fixed back then, it has just consistently gotten worse, and with my bladder dropping this year, I really need to have a rectocele and cystocele repair. My doctor is just waiting for me to give him the go ahead to schedule it. I am just waiting til I am healthier to go through a surgery. But in the mean time I am baring through some bad symptoms on bad days. And I have been going to a pelvic floor physical therapist over the last 4-5 years. Which has been a big help too. Unfortunately not enough to not have the surgery though.

Kris-Not getting in til May is not bad at all. Most of the doctors we end up needing to see have much longer wait lists. Yes I hate when my digestion just stops working. It doesnt matter what I do, it decides when it wants to start moving again. Boymommy3- Tummy problems go along with actually all 3. Eds because the loose connective tissue. So the bowels can get stretche out too much and make it difficult for our digestion to move smoothly (easiest way I know how to explain it), mcas can cause tummy problems if your mast cells are acting up in your gut. Anything you eat that is high histamine or causes a histamine reaction can make for unpleasant tummy problems. Also pots can have tummy problems as the ans is responsible for digestion as well, so if we have dysfunctional ans it can be dysfunctional digestion as well. Gastroparesis is common in pots and eds, and you have an increased risk of getting by having either or both. Hope this helps. I am sure someone else can explain it better as I am having major brain fog, but I thought I would answer now otherwise I would completely forget about it.

I am on a high dose right now. My levels were really low, so my doctor prescribed my 50,000 iu, that he wants me to take once a week for 12 weeks. And after that go to a lower daily dose. I have been on it for 4 weeks now, and I havent noticed much of a difference. But that could be because I was not feeling very well at all due to another medication.

Yes, I have 5 kids and they all most likely have eds. Two have already been diagnosed, but the doctors think they all have it. We just havent diagnosed them all. My two oldest are having problems, that I never did when I was a kid. Yes I will let you all know how my appt goes. I already know that all my labs he does, will not all be in for 4 weeks (his nurse told me that). Good luck

Kris- I wouldn't say it is a waste of time. You never know she could be very good. I have an amazing family doctor that had not known anything about pots or eds or mcas but he has been a very important part in my health, so I would still go . PLus with her being local that would be wonderful. If she doesnt know, she still could be amaxing if she is willing to learn. My advice would be to bring a printout of information for her to read about it, it cant hurt. I am in Georgia and had to travel to az to see dr. goodman last year and becasue my pots is still not under controll and parts of it has gotten worse I have to go out and see him again. I lucked out that dr. afrin isnt too far from me, so that is why I am able to see him. But I have learned it helps to see specialist in what I have. I would love to see dr. grubb or another eds doctor eventually but cant cause of finances. My kids have problems with eds too, so that will hopefully happen eventually. But when I was out at the mayo last year and had presented to him about mcas he didnt know about it, so he sent me to a mayo immunologist and they didnt know too much either. But in the last year dr. goodman has learned a lot and willing to help with meds for mcas. So I wouldnt say my appt with the immunologist there was pointless. Its all part of our path. Yes gi problems have been a huge part of my troubles especially in the last 2 years. and I have had problems with other organs as well mainnly prolapsing. Many of my doctors thought fibromyalgia too, until I saw a rheumatologist and one look at me, and my exam he knew it was eds. My friend I met at the mayo last year has pots, not hyper and she still gets adrenaline surges, anxiety like attacks. So you could have either. But it is important to know which, as the treatment plan especially with meds, tends to be very different. What works for her doesnt work for me. Certain meds I can't do or get more problems with due to the mast cells. So I have to be very careful of fillers/dyes in meds, vitamins, food,etc. Definitely update us after your appt with the immunologist. I see dr. afrin on monday next week, so very excited about that.

I have hyper pots, eds and most likely mcad (seeing dr. afrin next week). As for worrying about a pheo and wanting a scan to verify yes or no, I understand that part. I had a number of scans, (mibg, etc. cant remember all the names of them) to see If I had a pheo. My norepinephrine levels were only a few numbers away from being able to diagnose a pheo. What I learned through all of this, is really if you have a pheo, your numbers will be way over the dx number 95% of the time. A pheo has very high numbers typically. I remember when I was going through this, it was such a long road that I eventually was wanting a pheo, just so I would have an answer. As for the mayo dx for hyper pots, when I was dx, (dont know if it has changed from a little less than a year) but to be dx with the lab you had done from laying down to standing, what they are looking for is above 1700 norepinephrine. But there is a girl I met while there that has pots as well with flushing experience, and her numbers were not high enough to dx hyper, but yes she still had hyperadrenergic state. It isnt uncommon for regular pots to have higher levels of norepinephrine compared to the general public, but they are lesser than the hyper pots numbers. As for experiencing flushing with excercise, that is very common with mcad, and really checking your bp and hr after exercise isnt the best time to check them for numbers looking at pots, as it is normal for bp to increase for at least the first 10 mins after exercising. But yes checking your numbers during that just to make sure you are ok is fine. I know you are seeing an immunologist this week which is good. You want to see one that understands mast cells. I saw an immunologist at the mayo while I was there amongst other docstors I saw. He only really knew about mastocytosis an not mcad. Hence my appt. with dr. afrin next week. But even without the official dx it hasnt stopped me from treating myself. Which was the best choice ever. It was also by accident that I had started, but it worked so well. Since there are over the counter histamine blockers, I trie them and was hugely surprised to fiind my "flushing" that I thought was caused by my pots became so much better. And when I did have a big flushing episode I took a benadryl and it helped immensely. and the benadryl an histamine blockers helped headaches, tummy problems, etc. I now am on and have been for awhile histamine blockers, gastrocrom, and benadryl (as needed). If I would have waited for the dx before starting these meds, I would have been living in misery for an extra year an a half. I take gastrocrom and my blockers when I exercise and If I feel flushing coming on I take a benadryl. Diet has been a huge key to flushing episodes as well. I started a gluten free and low histamine diet. My pots doctor and my other docs believe I have mcad, since the meds are working amazing on me, they dont understand it but all they know is my headaches, flushing, diarhea, nausea, vomitting, sensitivities to food, lights, smells are much better. And when I went off my histamine blockers within 2.5 days it all came back full force, and with starting them again they calmed down again. My pots doctor now writes all my rx for pots and mcad. And for your vibrating. I get that too. Mine happens either at night or in the morning waking up. But I also get it when I believe my bp drops quickly at times upon standing and I get tunnel vision and feel lightheaded and feel a weird feeling in my ears like they need to pop and all of a sudden I feel this shaking in my body, but instead of me actually shaking I am not. I look at my arms and they are still but I feel like I am feeling an earthshake that no one else feels. I have explained that to my doctors and none of them know what it could be or what the casue of it is. I feel kind of ridiculous explaining it but my docs all have learned with me anything is possible. Would be nice to know what it is. Wish you the best in finding answers. I know the flushing is not fun at all. I still get norepinephrine surges and mcad episodes but some symptoms are a lot better, while some havent gotten better and others have gotten worse. But I would be a lot worse if it werent for my histamnine blockers and benadryl. anyway I have written a novel, sorry. If you have any questions , just ask.

i have gotten a flu shot for the past few years. i would rather feel yucky for a few days than actually get the flu a few times through the season and be awful for months. each time i get the shot i do feel worse not just a sore arm, but the flu shot this year was the worst one i have have ever had. i think it is because this year i have gone gluten free and low histamine and somaybe with the eggs in it i had a bad reaction. within 10 mins of the shot i felt extremely nauseous and threw up and stayed nauseous and than i got a massive headache that lasted for a day and a half.(i have had headaches for years major ones and this one was the worst i had had in quite awhile). than as the day progressed my body got all achey my muscles and bones hurt. soi took a benadryl, flexeril and vicodin. it somewhat helped and the next day wasnt as bad. but even with that being awful i think it is worth it to prevent me getting sick multiple times. i have 5 kids and they will bring anything home.

i used to get those. everytime my husband would have to wheel me into the er cause i couldnt walk. it happened once when i was driving and it was awful and had to pull over. i have not been dx with mcas, but it is suspected. ever since bein on an h1 and h2 blocker those tremor attacks dont happen nearly as often.also i am trying to figure out my triggers, mostly food cause i control my environment pretty well and dont go out much. so i am on a low histamine diet and in the process of doing gluten fre. but whenever i eat something that i find is a trigger, i get nauseous and my legs start doing the tremor thing. than i usually end up vomitting, but since i figured what these are, i take a benadryl when it happens and it calms it down, only after that food is out of me. funny i thought my pots symptoms were going crazy and getting worse, and really it had to dowith mast cell. if i go off my h1 and h2 blocker i almost immediately start getting the tremors again.

yes i am hetero... for factor V leiden.

well i can not speak for the mn one, but i went to az. i think they are probably both really good. i think you may want to consider travel depending on where you live, maybe the closest. but also try to take into consideration the wait list to be able to get in with them. so maybe call around and find out. theway it worked for me was my cardio electrophysicist referred me to dr. goodman the neuro at the az mayo. but for insurance wise (military ins) my family doctor had to put in the referral . after they received the referral i called and tried to get in, and he was booked and hadnt opened up the next calendar month so i just called periodically and got in. but they said they would call me, so i guess i didnt need to keep calling them but from my own experience with so many things in life i just do things myself. and i got in , all my referral said was that i had pots , there may have been more but i dont know, and they excepted me. once i went out there and saw dr. goodman he than wanted me to see other specialists and do tests so they worked with me with trying to get most of the things scheduled while i was out there. but they were very helpful with answering questions over the phone before i went out there. i assume the mn one is a lot like the az one. hope this helps. if you have any questions just shoot me a message and i will try to help, i know it can be daunting , and it helps to know things.

arizona girl- you mentioned dr. grubb uses labetatol for his hyper patients and one other drug. if you dont mind me asking what is the other one he uses?

Thanks, i have watched the video. unfortunately florinef didnt do anything for me when i tried it a year ago. i do stay hydrated pretty well except for when i am just feeling way too awful and than i get iv fluids that really helps. I know when i did my labs everything was fine with my seratonin, the only things off have been my norepinephrine being very high and my cortisol being low. the doctors think and have thought for years i am hypovolemic. i have been off and on anemic many times.. i just cant wait til i find the right combination and right dose for me to feel alive again, lol!

thanks everyone, it definitely helps to hear others. i have just not dealt with these low bps before, so i am not sure when to get help, lol. i do have hyper pots. i saw dr. goodman in may and he is the one that has me on these meds right now. i have 5 kids and a husband in the military so i really wait till i am extremely bad to go to the er. i had been feeling bad since over doing it on saturday. i didnt really do anything extensive but i stayed upright all day. i have been almost in bed constantly for the last year and a half and have just been getting more active the last few months. i was wondering if my doctor was going to want to increase the beta blocker to get the heart rate better but than i wonder if they would want me to increase the midodrine again, and it gave me a massive headache before whne they had me taking more. i will call the doctor in the morning and see what they have to say, but it is dr goodmans np since he is out of the office right now. i do know that he said if the beta blocker didnt work than he would probably try clonidine. i havent done too much research on ssri, what do they exactly do?

Not really sure if this is ok, or if i should do anything about it. I have had pots for 6 years so i am used to feeling awful and not going to the er or making a big deal out of stuff. i have been on propanolol and midodrine for a little over a month. it has lowered my heart rate from 200s to 120s standing, and 100s to 70-90s laying down and my bp has always been normal or dystolic being a little high but since being on the beta blocker and midodrine it has been 90/60s but when i am active upright i start having high bp. my bp hasnt changed with me taking either 3 midodrine aday (5mg) or taking half a pill2x a day. well the last few days i havent felt good, i have been really lightheaded, had tummy problems, and i kept feeling like i was going to pass out. my bp was consistently 70/50 and heart rate 150s. my concern is i never go to the er, even when i probably should. what bp is too low, and when should i seek medical attention? also now today at the doctors it was 128/86 and heart rate 140s sitting. even with being on propanolol and midodrine my heart rate and bp is all over the place it seems. any advice, thx

i used to be on some forums for pheochromocytoma when my doctors believe i had that on top of my pots, but i am just hyper. but on those forums they talked a lot about the anger rages they would have and how they could not cotrol it , and it was due to the high levels of catecholamines being released in their bodies. from what they had to say it was more common when their epinephrine and dopamine were not but not as much when it was just norepinephrine levels being high. the ones with only high norepinephrine had more anxiety type issues over anger issues.

i did not tolerate the zyrtec at all either. i can tolerate zantac and i did benadryl for a few months before my doctor switched me to cyproheptadine which i tolerate well too. so dont get unmotivated, just know that that kind doesnt work for you and try a different one.

i have had pots for 6 years and recently just found out i have low cortisol levels. dont know yet what the doctor wants to do as i have nmot had a follow up yet.

question? does it have to be doctors or can patients submit for "who" or "icd" or whoever to get pots as a diagnostic code. could we have our state representatives help us with this orwhat. cause really if there was a code, it would make it better for our doctors, pharmacists, insurance, and for the court with disability and for ourselves. i definitely think that if this is something we could help happen, there are a lot of us that would be willing to do something to help get us a diagnostic code.

Relax86- it means inappropriate sinus tachycardia

Maybe others can chime in that know more, but that is how mine is and I have been diagnosed with hyper pots as my norepinephrine is high as well. I have had pots for 6 years , the first 4 it was a normal heart rate laying down,and for the last 2 years it has been 100 resting, even while sleeping. I did see a cardio electrophysicist that did not think it was ist, and he said go to one of the pots experts and see what they say, and if they say it isnt pots and they think it is ist, than come back to me and I can treat you for that. I went to dr. goodman at the az mayo and he said hyper pots, so that is where I am now. So far the meds are giving me a beating so I dont have any answers yet. But part of me wonders of it, has just developed this way with going untreated for so long and when I get it under control and get out of this relapse it will get better and maybe go back to being a normal heart rate while sleeping. I definitely feel for you and know how not getting a break at all is very tireing and wearing on the body. I wish you the best

yes, called the doctor yesterday. he is out for this month so his nurse practioner is having me go down to 1/2 a pill 2x a day, which is what i started with and see if the headaches persists. she wants me to see how it goes for a week. well so far headache is still there but i will give it a go, just in case it is going to work for me. my doctors nurse brought up mestinon if this doesnt work. anyeay have experience with this ?

wow, my daughter had exactly this when she was 4 and 5. she had a low grade fever, slept all the time, her legs had pains in them, her leg muscles were weak, her lymph nodes were swollen all over her body, and she was very pale, and sometimes would break out with a petechia type rash. and on one occasion lost control of her bowels for days. she saw so many specialists and was hospitalized and had so many tests done and all they could find was that at some point in the past she had mono, ok how did my 4 year old get mono, and i didnt notice?, also her sedrates esr, was always high. the doctors never figured it out and her symptoms kind of just went away. well one of my other daughters has started habing the fevers and swollen lymph nodes, she is 7 now. but i do wonder if it is somehow pots related or related to someting autoimmune that i have that may be my cause of pots that i have given them? i do have eds and all 5 of my kids have it as well. but i may also have something with mast cells, so i wo der if this is what it is. i am going to start achange in our food habits. i havent decided if i am going to do gluten free or low histamine or both, but that really limits what foods we can eat.

so it was just the iv fluids. i felt good for 2 and a half days and now headache is back. it is so massive. my heart rate and bp from taking propanolol and midodrine is about 130 standing, which is better than 180s and my bp is textbook normal laying and sitting but standing it is like 85/70. which is weird for me because i am used to it either being high or normal. i am just wondering if it is time to change to something else or if i havent given it long enough. i have been on propanolol since may 24 and have been on midodrine since may 29. should i keep trying it in hopes the heada hes will go away and my body will adjust or since i am stuck in bed almost everyday on this should i try a new combination?

is this the only test, or are there others?