MikeO

Have you tried an ARB? I know we are all unique and hope you can sort out what works for you.

@PistolThanks for sharing. I can relate to the chaos when the SNS does not work the way it should. I do experience taking seizures along with the leg buckling and then passing out it is a bit unnerving. I still am confused as to what my system is really doing. I know that my body does a poor job of regulating blood pressure and routinely just drops 40 hg from baseline and then slowly recovers. The BP's and HR have been confirmed by two tilt table tests and the ortho tests i do every time i go into the clinic. I go hypertensive when laying flat on my back "178/102" and end up in the 120's while standing with only 3 beats per min change in HR and this is why i was diagnosed with neurogenic orthostatic hypotension. So i do get into trouble if my day's BP starts out or goes to low and i get the arbitrary drop in BP i will hit the floor. so part of the therapy is to try and keep my bp up and stable enough so when i do get the drop it is not so low that it causes issues. New goal is not to be consistently over 140. We have played with meds over the last 6 mo and i can attest various combo's do have different results. I think in my case Lisinopril was the worst drug i have been on this one would get my SNS into overdrive i would get bouts of tachycardia, my digestive system would just shut down "was passing undigested food" along with the classic cough. Losartan i would break out in hives so, for now it is just my statin, beta blocker and Mestinon. for the most part i have been fairly stable, not perfect by all means but better than it has been. Still i am puzzled by the vasoconstriction not sure if it is the SNS not working right or some other component of the NS. Then there is the complete syncope episodes these are the worst as i usually get hurt. It does suck to find yourself lying on the ground and having no memory as to how you got there or even what you were doing prior to the event. Madison did put in a ILR so they can see what my heart is doing during a syncope event. Thanks for listening

Hoping to share some recipes that works for folks like us. this one pretty sure is called SOS. was a military term. if onions or garlic get to you can omit them. https://www.tasteofhome.com/recipes/ground-beef-gravy

I know this feeling as well. but then i crash get blurred vision and life sucks. like said becomes trial and error as to what helps. when i get blurry eyed i can walk it off to some extent but while it helps i am still having a bad day. what i have found is to keep active and upright even if it is a little at a time makes a difference.

Well never considered sympathetic overcompensation as a possible cause to one of my symptoms. I do get 4 distinct issues when it comes to postural changes and hypotension but the one that gets me the most is when my body is pooling blood i.e. while driving you can feel your shoes become tighter, while hanging out on the recliner etc... So when i go to stand up i will feel my vascular system constrict and at times quite strongly. I will feel pulsing throughout my body, feel pressure in my head and will hear whooshing that is in sync with my heart. as far as i know i do not get a compensatory change in the HR. I am just wondering if it is possible that the sympathetic system is not kicking up the hr but overcompensates with the vasoconstriction? or if my body has adapted some other way of dealing with the change in blood distribution when my system malfunctions.

Yes it does. Since i changed the angle of the bed i do not get up like i used to just every once and awhile but i will pee a lot once i get up for the morning. I am just like you during the day, i will wiz several times even before 10 am.

The Dr i am working with has me drinking other fluids and not just water. The explanation she gave me was it helps you retain the fluid "not peeing it out right away" and suggested a sports drink or water with some type of powdered additive or flavoring. She also has me sleeping at a 30 degree angle at night as well helps with nocturia as well as my supine hypertension

I agree with this statement. As i progress with my issues i am finding out it is not just one cause but a suite that makes up the whole. so i work on what i know helps out to have a better day but is still trial and error. I know that my SNS can go into overdrive "this is bad" especially taking certain meds "lisinopril will trigger it". My reflex responses are all diminished so that would suggest a peripheral neuropathy but this is a blanket term as well so the confusion continues. so until i can get into the clinic all i can do is try stuff.

I have noticed changes as well. I did use to sweat profusely when it got warm out, after eating. Now it is just when i do a physical activity that warrants it but the sweat is minimal. And yes i am hydrated. guess the nurse was right only me and my dog knows it.

I am looking into the Low FODMAP Diet. supposedly it has helped with symptoms of IBS. Not sure if it is legit but i am looking at as a start to find foods that work for me.

@Pistol- Thanks, but i have the credit to my nurse Tammy for pushing me to update a log. She is relentless to have me do this. Not sure why she took me under her wing but she did and has made a difference in my care. All i can say to folks is do the same. Thanks, Mike

Mestinon will help with constipation. it does also carry other benefits as well. just be sure to take it with substantial amount of food. Food will flatten out the drug curve and give you a better response.

What works for me is: oatmeal, scrambled eggs, chicken, brown rice, lettuce or greens. What does not: Pasta, garlic, onions, most bread, processed food

I keep a daily log and alway take a first thing in the morning BP. If i am having a good day i just make the one log entry. This has been very helpful remembering what triggered a bad day or event as well as talking with my Doctor.

Well my 2 week break from Mestinon only lasted one day before i had 2 bad episodes with presyncope, frustrating to say the least. So the Doc is going with it is working for me. I did try on Sunday eating 1 cup of oatmeal before taking the morning dose it did seem to settle out the cramps and bowel issues.

Hi, Anyone using a Abdominal Binder and does it help?

@jinglebeanThis so sounds close to my experience with Mestinon. my dosage started out at 30mg 3x/day and i was simply amazed that my stomach started growling and started digesting food much better, has not done that in years. Also the fatigue greatly improved along with my gait "more bounce to my step". But just like you i have noticed it has not been working so well at least with the GI and it maybe a little aggressive than i care for. For the fatigue it is still working great if i miss a dose i do notice becoming more lethargic with more pain in my neck and lims. this has been helping with the orthostatic hypotension. For now i am only doing a trial so today's my last day and will be off of it for two weeks just to see what i get out of that then follow up with the Dr.

Thank you both for the advice. I will be taking a 2 week break from pyridostigmine as part of the plan and will track symptoms guess the Dr wants to see if i really am getting a benefit from the drug and go from there. @PistolI can attest to the medication sensitivity wish i was wiser about that years ago would have saved me some heart ache. I did read somewhere some folks were taking Loperamide "imodium a-d" but that does not make sense to me having to take a drug to tolerate a drug so not going that route. Thanks, Mike

Hi All, I am new to the DINET community. I am reaching out to see if anyone has found a way to deal with the stomach cramping and bowel urgency that is one of the side effects of this drug. I have Neurogenic Orthostatic Hypotension and as of late my episodes have become more frequent and severe so my Dr has me doing a trial of Pyridostigmine to see if it helps. I do have to say that I have noticed less fatigue and the number of episodes have decreased but, the GI side effects are hard to deal with. Thanks in advance, Mike