Debbie Rose

Just caught this chat. I have a german pinscher and he is everything to me right now. He has Cushing's Disease which will shorten his life, and being a rescue I only have a guess as to his real age. He crawls into my lap several times a day to nap 

I also appreciate my sisters cat and the attention he asks of me-a good snuggle every morning. Unfortunately he is 16 and has kidney failure-but early/mid stage as yet. He gets subQ fluids every other day along with some pills

It is amazing how much comfort an animal can give. I had a Quacker who was a love and a character with an amazing vocabulary. Unfortunately, I became allergic to his dander and had to re-home him. They love him just as much and he has other feather friends as well. At one point I had 4 dogs, 2 cats and my Quacker but time took all but my one now. I have not been without an animal since I was 22 (40 years now) so I will get another love in time.

For right now Simon (my dog) and Snicker (sister's cat) will do just fine

Debbie

Hi everyone,

Wow time goes by very quickly. My tomatoes have fruit but still all green. Right now in NC we are having a stint of high 90's so I am not outside. Some good days I get up at 7:30 am to do a bit of weeding or raking and watering. All my plants are in and in the shaded areas my little woodsy spot is growing except the astilbe-which are slow to grow.  My daisy's and coneflower and daylilies do not seem to appreciate the soil even though I amended it when planting. Very slowly growing-but it is first year. Fertilizing, watering and trying to be patient.

In MD I had more sun in my yard, but here I have 50% shade so it is harder to grow things. My woodsy area is 80% shade.  I gave in and bought a crabapple tree-say some prayers and cross fingers-it was a dormant plant so I have to give it lots of time.

I have been able to do more than I expected by wearing compression clothes and taking sudafed if I need more energy. It gives me a few hours each day to accomplish things. I watch the temp/weather closely to choose the days I can get out there early am or late eve to get things done.

So how is everyone gardens going??

What kind of weather are you having in Netherlands, Australia and Wales?

I have planted Hostas in my woodsy area and have not seen slugs yet-but a bowl of beer can drown quite a few of those slugs-and they don't mind cheap beer, either,LOL

Let me know how its going

Debbie

Did you have your thyroid checked? My numbers were low normal and my one endocrinologist called it sub-clinical and placed me on low dose thyroid med and it helped my feeling cold alot!

Hope this helps

Debbie

Since I have been told to wear compression clothes I finally started wearing them....And WOW !!!  What a difference for me!! I wear long sleeve top and long leg bottoms on bad days. On better days or very hot days I wear capri bottoms and short sleeve or tank tops. I was able to garden this spring for the first time in 10 years! Basically I can move around standing, kneeling and squatting to garden for about 2 hours which allows me to do alot. Then I rest for a few hours and can get another 2 hour session in. And I can do some shopping now-as long as it isn't more than an hour or so of standing. And I feel better too. That along with sudafed and I can feel more normal for a few hours each day! Really great for me. Even when I am indoors doing chores I will wear compression clothes, and on bad days I at least knee highs and recline alot

Hope this is helpful to others

Debbie

I tried the sudafed and WOW! what a difference in ability to stand longer and do more! Instead of 30-40 minutes tolerance of standing, I can last an hour and a half!!! Big change for me.  I am able to feel at least a bit more productive

Thanks for the info!

Debbie

I have peddles I use while in a reclined position-similar to recumbent bike but stationary and in doors. It also allows me to recline as much as needed. As someone noted above it has not really changed my ability to function but it helps my overall health and conditioning.

Debbie

Have you had a sleep study done? I get short of breath when ever I get up too quickly or walk too far or if it is humid out, alot of reasons. And I also have sleep apnea, which I will be getting a mask to wear at night. I have had it in the past with obesity, this time it is age and maybe POTS related.

Debbie

I never checked my BP but I get rapid heart rate to 120's for about 10 to 20 minutes after I eat a big meal. I now eat small meals as a habit, occasionally messing up but try not to. My showers are brief with temped water or a long bath with hotter water if I lay down for 30 minutes after, or just before bed .

Debbie

Chest pain can be caused by acid reflux while laying down in bed. Do you have a snack within 2 hours of bedtime? Might be something. I get chest pain while I am just sitting in my recliner, or laying down. All my cardiac workups were OK too.  So if it goes away in a few minutes without other symptoms I just let it go

Debbie

I have gastroparesis with constipation being the norm, but can develop a bout of diarrhea without warning. My GI doc feels it is my  dysautonomia causing it. I use benefiber twice a day which works for the constipation. The other issue is incontrolled but only happens rarely yet

I was diaqnosed at 60 after 5 years of symptoms

Hi Don,

   I started using a cane a year ago mostly because of a balance issue as well as my dysautonomia. When I have walked too far my legs get wobbly first, giving me time to sit or lay down.  I also have a handicap sticker for my car so that on bad days I can park closer. I am 62 and have the need so it does not bother me. Ending up on the ground is much worse

Debbie

Keep plugging along-second opinions are acceptable in the science of medicine-it is not a perfect science.

For me, since I did not pass out, they diagnosed me as Neurocardiogenic "near" syncope!! Try convincing people its a real "thing"!!!

Near or full out syncope-you still have symptoms and feel horrible

I hope things come together for you soon

I'm glad to help Dancer 65

Thanks Katcanny for the recipe, it sounds yummy

What are you doing when this rush happens?? I can only stand/walk/be upright for about 30 minutes (worked at getting to 30 min from original 20 min a year ago) without symptoms. I have identical symptoms as you and will get worse if I don't lay down or recline. I pace everything I do and am sure to be sitting reclined at 30 degrees before the 30 min time.And it can take anywhere from 20 to 40 minutes before I can get up again.  My TTT was positive but even with a BP of 54/42 I still don't pass out but it feels horrible!!! I can't sit upright leaning forward for more than 30 min either and if there are "expectations" that trigger anxiety, then I am even worse. I have been unable to work as well .

I have palpatations-which is 3-6 beats of PVC's together and it happens even when I am reclining. I would strongly urge you to let an MD know about yours. They put me thru the cardiac ringer so I an OK with mine BUT that is because they are self limiting and brief and I have no other symptoms with them-they can come while other are building but that is my stupidity of not stopping soon enough.

Does that make sense?

Hope you find some answers soon

Debbie

Thanks for everyone's responses. Katcanny could you give me the recipe for the zucchini pancakes? It sounds great! I gained a bunch of weight the past 2 years and it is not helping my NCS-new recipes help

Dancer65, My 2 tomatoe beds are on raised legs so it is waist high and portable-finding the correct sun light is still ongoing-been here only 3 years. I am also going to try to grow tomatoe upside down-got that kit 2 years ago and yet to have used it.

77 here in NC but looking at sleet/snow by sat/sun UGH!

Debbie

So sorry you are feeling so frustrated. Early on, when they thought it was fibromyalgia I lost most of my friends for the same reason-"you don't look sick". Trying to tell someone you can't plan ahead because you feel differently every day just does not make sense to most people. The only friend I had left had an illness herself which was also "quiet". I have been single a long time now simply because I don't know any man who would be willing to handle all my issues. The closest I have gotten to get people to understand is when someone get a really bad stomach/intestional flu-that is close.  And my brother going thru chemo got a clue then too.

We do get better at finding the right combo of rest and activity and with the right meds to stabilize some of the heart rate and BP, it can be doable

Best of luck

Debbie

I have never passed out which fascinated the doctors-my BP was 54/42 and I was miserable and begging to lay down, I was still awake. I have time to get to my recliner when symptoms start coming on

Debbie

Hi Blue,

I think the ruptured dics in my neck back in the late 80's was the initial cause; 10 years later with the fatigue and sleep issues and pain I was labeled with fibromyalgia. I do know that things got extremely bad in 2010 when my job became horribly stressful and menapause kicked in. My doctor initially thought it was MS due to heat intolerance and weakness. I also suffer migraines. But all the NCS symptoms showed up in 2010 and finally diagnosed 2016 with TTT. I can not sit up straight or walk for longer than 20-30 minutes because then the symptoms kick in. I am fortunate my symptoms come on slowly enough to get back to my recliner.

I have learned to be active 20-30 min with then going back to reclining 30 degree to 45 sometimes for anywhere from 10 min to 40 minutes. Then see how I feel to do the same degree of activity or less so. I sleep 10 hours a night. I have a peddler that I use from a reclined chair. I have worked up to 20 minutes 4 out of 7 days if I work hard at the consistency-which I slip off of sometimes. I need to do better with my compression stockings cause they do help. Tommy Copper has some great compression clothes I wear too. Drinking 2-3 liters is hard for me because I had gastric bypass so I have to sip all day but I do eat salt easily now. My depression (which I have had since age 12) became worse and I needed my meds adjusted, and the frustration of this lifestyle definitely contributes to it. I can not work. I have PTSD with Anxiety disorder and any stress kicks my NCS into extreme overdrive.

I hope this helps. Getting into a routine with your toddler-especially naps-may be possible too

Keep us updated

Debbie

My doctor was kind enough to give me handicap status and I use a cane for balance and dizziness. Answering the question on the application about the cane placed me in a "special short line" and first on the plane status which really saved me. I did fine on the flight-about 4 hours but since I was going to my nieces wedding I was excited. But I came a day early and gave myself lots of times to rest and I did fine. Good luck !! and enjoy!

Debbie

Hi ALl !!  Its an early spring here is NC and I have that itch to garden. The first year I was so scared of all the "what ifs" I didn't do much. Last year I got 2 raised beds and grew tomatoes and it went very well. As long as I limit my time standing to 30 minutes, I can garden. My Sister is my guide and warns me when I get over enthused and push too hard. This year I will do tomatoes again and try a small flower garden....its all a matter of pacing rest with activity.

Will keep everyone updated

Anyone else garden at all?

Debbie

Sorry about your meniere's. I do not have it but I went thru about 6 weeks of severe vertigo once and it was horrible. I am sure your audiologist will let you know what is what. Let us know how it went

Debbie

Hi, so sorry you are struggling. My TTT showed positive with BP of 54/42 and heart rate of 120 at the end and yet since I didn't "pass out" my doctors were reluctant to call it "Syncope". But whether it is caller vasovagal near syncope or neurocardiogenic near syncope, I have NCS.  It took me forever to find an expert and then once I did it took me 2 other doctors to get me going in the right direction. There is a new Specialist in NC and she is an "EP Cardiologist" which is an electrophysiologist cardiologist. She is booked 9-12 months ahead for new patients and I only see her every 6 months. 

My first year was anxious and very symptomatic all the time. For me I have a resting heart rate of 45-55 so when my heart races-it may only be 95-115 but it is pounding and uncomfortable as is the chest pain. This past year has helped me change how I do things. MY RECLINER IS MY FRIEND !!!

I get up from 30 degree recline to sitting upright and then a slow stand with a 5-10 second pause at standing and then walk... I can spend 20-30 minutes doing things now without symptoms. But if I push it, my fingers start to tingle a bare minute before other syncope symptoms start. And so back to the recliner and into the 30 degree decline. I may need to rest anywhere between 10-40 minutes and then go again.  

I keep up with my fluids and salt. and I am on fluronef. My biggest flaw is not wearing my compression stocking and clothing. I also eat small serving and never eat an hour before bed-these cause my heart to race and pound.

If I over do it in a day, the next day I am very fatigued with fuzzy brain and opt to do less....its a delicate balancing act. But if you start slow and work up to it you will find your tolerance levels and where to stop before symptoms get worse. It is frustrating and very limiting but I can only do the best I can. I can not work because if I sit upright or stand for more than 30 minutes I start with the symptoms which would lead to syncope if I let it. I can even go out to shop now if it is close by and I get just a few things....things to look forward to.

I hope this helps

Debbie

Hi Katy,

I was recently diagnosed with NCS (neural cardiogenic syncope) and stress accelerates everything for me-to the point where I can not work. I worked as a telephonic health coach but they changed the requirements in Jan. adding additional points needed to make a call earn good points. The stress of meeting the new requirements was intense and I feel that I was triggered or flared from it. On my tilt table I was 50/40 after 23 minutes. All the typical LOL-sorry- nothing typical about these conditions. So I will re-word...something that has gotten worse for me in the past 3-4 months has been my GI function with normal function first thing then 2 diarrhea stools a hour to a few hours later with 2 very embarrassing accidents. No matter what I eat or don't eat it is the same. So frustrating! And now that snow arrived here I have to be very careful because it makes me flare too.

Hope it helps

Debbie

Hi Raisin,

Wow it sounded as if you were describing me. I was recently been diagnosed with Vasodepressant vagal syncope with is the same as Neurocardiogenic syncope. I too have dizziness, fatigue, rapid heart rate, shortness of breath, nausea, low BP, weakness of my extremities with numbness of the lower legs, frequent headaches, and alot of lower GI problems including diarrhea and fecal incontinence which has started in just the past month. The fecal incontinence was a surprise and has now had me wearing adult diapers which is very depressing. I have a GI appt in Feb which I hope will get a diagnosis and treatment for this.. I look forward to hearing how you are doing

Debbie