no just no i do not want any more symptoms.

This is a deja vu post. I was in with my PT today and she brought this up, Her son runs the air conditioner while he is sleeping and me, I just suffer thru it.  

On 7/23/2020 at 10:04 AM, czechitout said:

When you have the dumping syndrome, does that result in obviously undigested food in stool?  No one has been able to explain this symptom to me.   

Anyone have anything to add to this? I have seen this before with me and happens when i have a bad flare or reaction to a new med.

Found this thread interesting. I just messaged my Cardiologist with my latest BP's as i am well over goal while i am up and about. Spikes have been High 180/115. Not sure what he is going to do as i can not tolerate the usual antihypertensive drugs 

46 minutes ago, Pistol said:

Oh, come on @MikeO! It can't be that bad! I LOVE plants. I have an Orchid I got about 7 years back from my husband for valentines day and it now has 48 blooms on it! And it blooms continously - as the old ones die off new ones are forming. I also love herbs, have several flower gardens, a vegetable garden, an Aloe plant, a Fig tree and a Rosemary bush that made it to 14 years old ( rest in peace, she died this spring 😢). And tons of house plants. I even grew an apple tree from seed! Plants are just like animals and humans - they want to be given what they need and then they will give you all they got!

Oh but it is. the grass seed the gas company guy thru down grew but not Mikes. it sprouted then proceeded to die. I just don't have the green thumb. I do have to say my apple tree is doing good but then i did not plant that as well Lol

Bonnie Raitt& John Prine - Angel From Montgomery

1 hour ago, CallieAndToby22 said:

I did some freelance photography, I wanted to finish my degree in photography online..... then cancer treatment. When I was young and much healthier I was a working/gigging musician but got really sick. I miss art because there is nothing as therapeutic. Even all my time spent in the hospitals I was always so happy with the music therapists, art therapists, and once I got a plant therapist. Those things to me are just important as the doctors in hospital and nursing home settings. My grandmother was in a nursing home for awhile and when things were getting rough I asked for a music therapist and they had someone permanently working there and it was helpful for my grandmother and family. That's my little soap box rant about the arts! Gives me an idea about a new thread. 

I know we do what we can to make us happy. Music helps. Not sure about plants I can't seem to even get grass to grow Lol

@CallieAndToby22Nice photos made my morning.

Before i started getting really sick i was a bit of a shutterbug as well.

Well had some bad news to day but coat hanger effect seems to be associated with dysautonomia I was hoping to validate this.  

Well i do not have a dog but this is my bird with the sitter while i had my 4x cabg. the two hit it off.

Hey @Jyotiyes i do the unconscious countermeasures and may be what bothers me .i know when i am standing i am either crossing my legs or doing the potty dance (Haha). What i am told is the muscle pain is due to the lack of blood flow. My understanding that the coat hanger pain is for the same reason (lack of blood flow) but, studies have shown other issues have been reported while in the supine position this is why i am asking. 

Well my PT gal picked up on the tightness or muscle spasms. Very specific base of the skull, sides of the neck and shoulders. Sure i have dealt with this for a number of years just did not realize it. I do yuk if it gets out of control. As to my butt cheeks and calfs all i no is that my PVD doc says i should not be feeling this due to vascular disease    

2 minutes ago, cmep37 said:

have you tried an SSRI/SNRI? 

No i have not. The Mestinton i am now taking does help with fatigue and some of the weakness but not the general ill feeling and if i miss a dose i do feel it so i know it is working. I also heard it helps with REM sleep if you take it before bed but i have not tried this yet. 

5 minutes ago, cmep37 said:

I agree - I have tried but that feeling of weakness, fatigue, just awful sense of unwellness is almost impossible to describe

I have struggled with this as well with my DR's. usually they would start trying to push anti-depressants. I have gained some ground since being treated at the faint and fall clinic i am at now. My GP does get what a NS dysfunction is he just has no idea how to treat or recognize it. Some of the nurses i see also get it and will give you some hope that you will have some good day's.

I do not know what Medications you are taking but, have you or your Doctor considered a possible side effect?

Hi,

Does anyone get the suboccipital/paracervical 'coat-hanger' neck pain that is cited in some of the autonomic failure literature and describe what if feels like?

Also are other postural muscle pains common in dysautonomia (buttocks, calfs)

@sitcedarThanks. so not a lot of foods i can handle but this one works Just have to keep the portions down. (carrots, rice and fish)

so what is the definition of malaise? not feeling well?

5 hours ago, CJ65 said:

Guanfacine and Propranolol keep HR and BP 150s/90s and hr 70s-100 unless I have any stressors or I’m late with meds

Thank You! how is the Guanfacine working out for you? any undesired side effects? My two main meds for now is Metoprolol and Mestinon but, i am sure this will change soon. I have pretty accepted that i will never normalize my BP's

@Passing outSorry to hear you are still having problems. The sudden weight gain for me is not new just does not happen very often till lately. last episode i gained 9 lbs overnight. Nurses will always cite the uptake of salt as a possible culprit and to an extent is a valid statement but i do push back as i watch my salt intake. So when this does happen the Cardiologist has me take a Lasix as needed to remove the excess fluid normally takes 2 days.

Glad to hear your pacemaker is working out, I have not had a low HR in quite awhile. When i had my 4x Cabg i thought it would fix all my issues Boy, was i wrong has been an uphill battle since.

8 minutes ago, Pistol said:

clonidine is hit-and-miss

Good to know. Thank You!

@PistolThank You! Attached is a two day log as an FYI: 

@Pistolwas wondering about clonidine. Supposedly helps with the high side of BP's and has some other benefits "keeping Mike focused and not Googling were frogs go in the winter"

@PistolI have had 2 TTT tests both of these indicated a Neurogenic origin of the hypotension as i had the BP drop with little of no change in HR (3 beats or less). have done the ortho tests at the clinic i am at now with the same results. One other thing to note is I have consistently had sudden drops in BP. This has been observed in the Hospital setting numerous times while being monitored "nurse will alway come rushing in to see what is up" also the supine hypertension has been noted as well and will have the head of the bed raised to 30 degrees (always bring down the bp"  

At Cardio we have seen the drop in bp after exercising 170/90 and after 108/70ish. The one day i described i never even got out of the gate. Weight gain does concern me as well.

I have had 4 stress tests first two i failed 2nd one is what got me the 4x Cabg. second two we did with not withholding the Metoprolol and i passed them. BP's were not exactly stellar but the heart rate was under control as i could not hit my adjusted HR.   

This month i do have a lot of support going on. This week i see a Neurologist (hope this is not a waste of time) and next week i go in for a ultrasound study for my PVD. I will be seeing the Vascular/Cardiologist right after. Also the clinic will be calling today in response to this weekends issues.

I can imagine when your HR went up was scary. How high did you get?. I have had issues getting tacky while taking certain med combo's think the worst i saw then was a HR of 132 while getting up from the couch. 

@PistolI will follow your advice next time this happens. My only concern is when my BP spikes high it can and will drop low. When i was in Cardo rehab this would drive the Nurses up the wall. On one of the days I squeezed a 180 so we waited then i went to 190 so we waited then hit 200 which got me wheeled down to the ER. When they took my BP it dropped to 135.