kim5204

Thanks last night wasnt as bad as I thought although my kids came in the room this morning and a had a good laugh about the way myface looked. lol.

This disease is frustrating hope your doctors can get some plan that will help you I have been in your spot many times and still struggle daily. Hope feel bettef soon.

I now have sleep apnea plus feeding tube at night, and just got a cpap. Does anyone else have sleep apnea.? Not looking forward to sleeping with cpap but will havd to try to cope the best I can.

Any tips greatly appreciated.

Kim

I have gastroparesis as my worst symptom mine waxes and weans and is not the same everyday. I have a j tube but before I had a j tube I lived on baby food, baby cereals for iron and nutrients, pumpkin seed powder low fat and low fibre lots of vitimans. Also juiced a lot. I .altetnate on bad days motility drugs, erthyromycin, resotran, domperidone, not on the same days but few days on one than few days on another.

I am never hungry but still eat for pleasure.

When I get flares no solid food strictly liquids.

I hope you have better luck managing it then me feel free to ask any questions. I am also doing IVIG in hopes to stop progression.

Did they tell you youf emptying time?

Goodluck.

The breathing problems were there before heaviness laboured breathing. I had no problems with the infusion but was givin fluids before the infusion.

Thanks

I have gastroparesis and thats what I had my worst problems with.

I later presented with dysautonomia symptoms which all makes sense now.

I had 1 hour gastric emptying scan came back at half emptying time of 150 min. But also had a scope and had ensure in my stomach that I had drank hours earlier.

Good luck with the test.

Have the Ivig treatments helped you?

I dont take melatonin all the time but maybe 2, 3 times a week but will look to see if I notice any blood pressure changes next time.

I only go for Ivig treatments once a month now, they just did a loading dose of 5 days straight havent had any side effects except little head pressure, but they also ran 500ml saline fast through iv first so haven't figured out if that was helping or the ivig will no few days if it was the extea fluid.

The symptoms I still have dizziness nausea worse when standing still feel short of breath but can stand longer on the licorice root.

I use naturally organics nova scotia licorice. I am from canada and thats the only one my store carried.

I started taking it and have slept like a baby funny how people are so different. lol

Just finished day 5 ivig treatment feeling good, but not sure if its the extra fluids they are giving me daily or the ivig thats helping. Will no in the next few weeks if its helpful.

My florinef stopped working and started licorice root extract and it also seems helpful keeping my blood pressure around 110/70.

Also my hesrt rate is not going up anymore when I stand but blood pressure stays the same but still get symptoms weird??? going from really high heart rates to normal still have symptoms weird??

The neurologist was hoping the ivig help low blood pressure.

Hoping this helps but also am aware if may not too, still on j tube hoping to be able to reduce the amount of time I am on it.

Also ordered in nunn tablets to try too.

I supplement with hydraltye which has potassium in it.I hate going to the hospital my doctor is away spent 3 months in the hospital in the last 2 years.

But I figured out I was taking in about 3 tablespoons of salt which is apparently alotmof sodium, hopefully I didnt do to much damagr and can balance off the sodium I am now measuring exactly so I can see exactly what is causing it.

I hope its not a progressing jn my disease I need a break from this for a bit.

thanks. hope tomrow I can figure this out and hope breathing gets better if not I will have tomake a trip to the hospital.

ok thanks

weird try less salt today and see if thats what is causing it and add more potassium. High blood pressure very odd for me. thanks.

Well cant figure out what is causing weird symptoms i am on florinef and high salt for low blood pressure and have increased salt now have breathing problems like pressure and heaviness, with high blood pressure and low pulse.

Wondering how much salt you guys use.? I have been using probably around 3 tsp or more havent really measured but a lot of salt.

I thought breathing was realated to low potassium and added 5mg today and extra magnesium to my bag for my j tube. Still having same weired breathing issue took my blood pressure and its 137/95, 59 Pulse complete oppsite than everything I am used to.

Could I have overdone it with the salt and caused hypertension, low pulse, breathing suffocating feeling I need help figuring it out my doctor I am not due to see few weeks.

can it effect my lungs salt leaching out more fluid in the lungs? I had a echo heart done a while ago.

any ideas makes me feel like I am dying difficulty breathing but cant put all peices together. now pulse 55. weird????

I want to try glychyrrhizin instead of florineff but cant find how to order it just dgl how do you order it thanks. kim

I cant findm the glychyrrhizin on the internet to order just dgl. how do you buy it? thanks. I would like to try this instead of florineff.

I always feel short lf breath. what test did the pulmonologist do?

30

I tried baby food diet worked for 6 m months then my dysautonomia progressed and ended up on a liquid diet. and now i am in hospital recovering from j ube surgery from weight loss.

when I was on baby food diet I bought ones with meat in them to keep protein and iron up, also they make infant cereals with lots of vitiams and minerals in them rice cereal, oat cereals. I also used pumpkin seed podwer in yogurt has lots of iron, b vitiams, magnesium, phosphorus, protein. that worked for a while for me.

good luck.

good luck I am still waiting to start mine. although I am still in the hospital recovering from j tube surgery keep us posted.

thanks a lot.

sorry posted twice and dont no how to delete it.

Kim, I merged your topics

to hear my daughter say "when you get better we can go to Disney world" I said " i hope some day hunny we can take you there" wondering if will be possible.

by functional I mean do house work, cook, clean a bit, grocery shop once a week . I just recently been diagnosed and would like to be real about whats comming.

I have a nanny that helps with bathing the kids, mowing lawn, , cleans bathroms, can no longer do that.

how do your symptoms progress, stay stable years etcc. I cant seem to find much and would like to before able to plan my husbands work he currently works away often and may need to look for something closer.

would love to hear how people cope dysautonomia, gastroparesis, tachyardia, breathing issues how they change? as time goes by. thanks kim

wow sorry to hear this I have autonomic neuropathy low boood pressure, tachyardia, gastroparesis, heat intolerant. what medications have you tryed?

In oder for me to stand I have to run hydralyte water and salt through my j tube. If I dont I cant stand for very long.

florineff has helped me too.

sorry your dealing with this too, I appreciate everyday I have on this earth.

kim