tinkerbella

Sounds like you could use a great (((((BIG HUG))))) firewatcher.

We did just go through a full moon with the effects lasting a fews days before and after.

I always notice life gets full of drama for me that you'd think I was making it up at times.

I hope next week is better for you. Do something nice for you this weekend. I wouldn't

doubt if mercury is retrograde now the way things have been and communication is off.

I must check my charts. Take care.

Thanks Melissa,

I got mine in BOSTON, MA off the list and love her.

I'll search up the meds & wanted to say saw your blog.

What a GREAT JOB you did! You're an amazing person.

Hi there, I'm a new here in the posting and getting into things. I was wondering where is this Dr. located as I'm hearing about him a lot in posts? I take MESTINON LIQUID and the tablet form is called PYRIDOSTIGMINE 60 mg tabs. There are a few things you should know about this medication. When I went back one week later my skin looked like I had been to a tanning bed and even the doctor mention that all his patients on it has the pyridostigmine glow. It causes hyper pigmentation. Then another week went by and I mentioned I was having my irritable bowel act up so bad that I won't go into the details. Then he said, "I never knew you had that problem and that is part of POTS." I then started to get very distended and my belly swelled so that I looked 9 months pregnant. Pain was so bad that at hydration I had a near black out in the bathroom that scared me silly. BP was so high, belly pain so bad they admitted me. Admission showed, near bowel obstruction. Family all away and they are talking surgery on a weekend. Praise the Lord that I didn't need it after all, but was sent home several days later with them not knowing what was going on.

Oh, I was also been treated for abnormal vaginal bleeding and on a cancer med that exacerbated my POTS. Hormones and I do not mix, but back to the story. I went home and started to take my meds as usual when I looked at the pyridostigmine which is mestinon only in a different form and I realized the drug store was giving me the wrong doseage. I called the and told them, they said get to the ER asap and call posion control. I had been telling everyone I felt like I was slowly dying all that summer. I think I was I was being poisoned.

My point is my brain gets foggy on these meds always double check what dose they write on everything. Recheck with what your doctor notes you take home say. ????? everything it's your life. It took all summer for my body to readjust to to the mess up from such a large dose of med to the normal dose. I have bad side effects still but, I don't want a pace maker.

I started and I'm still on clonidine for the first drug of choice. Did your Dr. try that? I only mention that as I never slept until I tried that but, I can only take 1/2 of a pill at night and morning. It's not even a therapeutic dose. Also I never felt so calm in my life before, hence the dx of anxiety and asthma were all wrong before realizing it's was really pots. I try to stay away from melatonin as I was told if you have an auto immune disease it will bring it out, and I have a high ANA already. I try to get at last 1/2 hour of sunshine to get it naturally.

Maybe you and your partner can find a time of day when you are not tired to be to spark up your relationship. If you have a good man work something out as good men are hard to come by. If you see one let me know. I wish you bunches of luck on the new med. I'm my doctor's most challenging patient as he puts it. God bless my Cardio, and my Neuro. And especially my PC who put up with me all these years and now has dx 4 more cases of POTS since me, I'm sure she thought I was nuts. LOL!

wishing you the very best!

Maxine,

I just wanted to let you know I was thinking about you this afternoon. I hope you're spirits are lifted today. Even though I'm new posting here I can feel the

that people really care for each other. I feel blessed that I finally figured out how to post and started posting to others who can relate to me.

When I first joined I used to peek in, read and get out quick, and cry. I thought someone had been looking into my windows and writing about me. I was scared silly. Now I'm ready to take charge and control of as much as I'm able to, one painful step, lots of breaths, and many heart beats at a time. GOOD LUCK at your appointment. We have to do whatever helps us make our life less complicated. You'll be in my thoughts and prayers.

Julie,

Thanks for your healing thoughts being sent my way. This special baby was a gift to me when I would feel down I would I would think of her and her tiny body knowing how drained I am from weekly hospital infusions, Dr. appoints, and just maintaining my life. I didn't have it so bad when I compared my life what she would be going through. I had been blessed, very blessed. I also donated my time over the past year to watch her twin sister while I laid on the floor at her aunt's house and played with her in between my crazy schedule. There were times that I became so ill that I couldn't be there. What a special gift both babies were for me as the baby's aunt, my dear friend also drove me into the city to see my specialist for POTS. And the one twin I got to be with made me feel so loved and needed when I felt i had no purpose in my life.

All losses are painful, our pets become like children. Many people don't understand it when we continue to grieve for a pet. I say they are the ones who have never really opened their hearts to the unconditional love of a pet. Anyway, I hope may be you can post a picture of your dog for us to see. I just said another prayer for you and Osa and that you can know in your heart that you came into each other's lives for a reason. Think about that, and what your time together was all about. I need to try to stand up for the day. Healing thoughts right back at you. may you enjoy this day to the fullest!

Good Evening,

I've had flares for years not ever really knowing what was really wrong with me till about 1 1/2 years ago. Now, I'm sad as right now I'm living alone. Had to give up my bedroom upstairs, living in a porch downstairs. I had to break it off with the man I loved for the past 7 years cause he left me in an ER when they thought I had blood clots in my lungs. He left to go get drunk and I was all alone. Hello! Goodbye..... Have a house and can't afford to do any work to it right now. I see myself losing control of my body more and more each month. I often think I'm trapped in someone's else's body like my mom's who is 89. I'm blessed with wonderful caretakers, have children, and two grand babies who all I adore. Sadly, I lack family support, they all can't see what is really wrong with me and it hurts almost as much as the physical pain I live in. I walk with a crutch now, sick of falling.

my granddaughter when she was 3 started acting out my illness as no one would talk about it. She started to pretend passing out everywhere, she started to want salt water so her mom made her the saltiest glassful so she would hate it and she took a sip and said she loved it. When she plays Dr. she puts on heart monitors and knows that some blink all night long, and she's even rubbed salt into my skin thinking it would save me.

In her tiny 3 year old voice she asked me, "Nannie are you going to die?" "Nannie, if you are I'm going to I'm going to miss you so very much cause I love you so very much Nannie, I really do." She amazes me, that she can tap right into my soul and knows that I need my family to talk about what is wrong so she acts it out to get there attention. Still no one talks.

I try to make everything that happens to me fun or a joke. The hospital is the Spa and where I get the best treatment and have my support. You won't find my family there. Never, nada, no way! What's all this about I'm sure your thinking? It's about love, we need love and support to help us get better. Without it I think that's when we start to crumble and fall apart more and more.

Like a newborn baby if left alone can die from lack of touch from it's mother. The same is true for us, sadly many of us can't meet anyone anymore being house bond. But we crave human touch, support and unconditional love. I believe those you us who have that get somewhat better and those who are alone and who have many other illness along with their Dysautonomia. Like holding onto an helium filled balloon and letting go that is what happens. Sadly many of of us become helium balloons and when the burden is too much for others to bear the family just lets go and we float away and flare...

The lucky ones have a good family support or make a new family out there through support groups. hospitals, faith in your higher power and friends but we can't get better with out love and support! Doing everything alone is tiring it's self, I need a full time sectary just to keep all the insurance stuff straight. Well I just used up all my energy for the day. I hope this makes sense to all of you.

Well said everyone, I'd hit the print button. I always bring a list of notes and last time I brought the letter I had emailed her with more thoughts I thought of afterwards. She actually liked it as it saved us both time. Do it, you'll be glad you did! Good Luck, and I'll buy us a round of v8 juice as it's time for happy hour here. LOL!

mornings are the worst since being put on meds. I hate early morning appointments, so are unavoidable. I have to shower the night before, pack my bags sleep all dressed as the cab comes so early for my hospital infusions. I set the alarm for 5 just so by 6 thirty I'll be able to try to get out of bed. I's like a nightmare on hospital days. I pretend I'm going to a SPA, so then it's becomes fun.

But honestly, most days I open my eyes, roll over grab a thyroid pill drink water and pass out. If the water is gone when I wake I know I took the pill. Then there are days I can't stand till 10 or later. When I stand it hurts to walk so bad.

I used to take Florinef, but it was spiking my BP really high. I've gone from one extreme to the other. but get low evening, night, early morning and if i can't get out of bed. I knew I had a problem for years before dx. when I would wake fall see flashing lights, would be written off as side effects for other meds.

I also would salt overload in morning before going back on these meds. the thing that happens to me is the hungry horrors in the middle of the night. I'm suppose to be checking my blood sugar levels then but when my BP is low, I'm on auto mode to the fridge and BP MONITOR. I believe there's a relationship between the two.

My new little song is, "If I Only Had A Brain." LOL, it's really not funny. Some of my friends in menopause are just as bad so what is what? I just have to joke about it and write everything down these days, and play charades with people when I'm having a conversation. I'm quite comical. the life of a party.

mack's mom just checking on you tonight. was wondering what kind of a dog Osa was? Maybe you could share a favorite story with us.

I hope you find each day a little easier. Some find it best to just go out and get another pet. sadly, due to the economy many people have been forced to give up their pets. there are so many pure breeds in the pounds and shelters right now. the good thing is it makes it a good time for someone to be able to get a great dog or cat at a huge savings and save a pet at the same time.

I stayed sad too long, when I could have just gone out and rescued pet right away. If I was to do It over I think i might have just replaced my girl. But then I wouldn't have my guy who watches over my every move as I'm a single gal now. I just wish I got him right away as a pup, cause he gives such great unconditional love that I needed. It's funny the way he's learned to take care of me. Think about it, you can choose to be sad or give the love you have to another dog. Dogs lower your BP, HR and the years of love you get are the best investment you can make.

hope to here from you again when your spirits are lifted.

~blessings and love~

BellaMia

Hi Jana,

I just got off midodrine I was one of the small percent of people who had to take it at bedtime. I felt like it took my brain away and when I knew I had a real problem I asked to be taken off it. I decided I would rather test my BP and overload with salt. Maybe it's just my opinion, but all the BP med's make me have no brain. Also the migraines were so bad and I felt like I had a hang over. I did put on weight, but I had also increased my fluids with gallons of Gatorade and a weekly hospital infusion. I'm swelling up all the time now, as my rings won't fit. I never used salt before, worked in the water only thing missing was the salt.

Good Luck I hope it works for you!

~blessings and love to all~

BellaMia

It works on both your BP and HR my Dr added it for when my HR gets over 95 but due to the side effects I take it 4 times a day right now.

~blessings and love to all~

BellaMia

Ditto.... same with me. Really frustrated as family, friends just don't get it! Recently took my car off the road and I'm living in a box alone with my loving dog. Today I'm alone and angry. Sorry I'm venting as I want to be with family today as it's Easter. Things aren't looking too good here and I want to make memories while I'm able. We all only have so much precious planet time and I want mine spent mine with people I love. I push myself to get up and do a few things and my heart goes crazy. Family blows off anything about me, but if anyone else gets sick it's a different story.

Cardio tells me let them read my Dr. notes from him and if they don't get it, then something is wrong with them. I pay for everything I do these days. All I want is to have unconditional family love like I give back. I'm mentally and physically drained along with my circadian rhythm is all messed up with fragmented sleep. I feel like people want me when they want to use me for their benefit regardless of how sick I am, and I always try to help because I love them. I've been a giver my whole life and now it's time for me.

I hope you feel better soon and hope that others who feel this way will also. We need to remember, to push those salt fluids, take little rests, remind others of our limits for once again, they just don't get it. I wish I could fly around the house and wherever I need to go. Maybe that's why I've I had so many dreams I was flying and it always felt so good. I have some ideas I'm working on them to make others others understand what it's like to live with our illness.

Have a great day everyone, I feel a bit better letting this all out this morning thanks.

~Blessings and Love to all~

Thanks so much. My foggy mind is having a had a hard time these days even doing the normal things I used to do. Please bear with me as I'm looking forward to getting to know all of you.

My top Dysautonominia Neuro. in the city told me only 2 cups of green tea a day and no more. Decaf of course for me and Gatorade by the gallons in between infusions.

Welcome, what I would do this I would take your mom's blood pressure cuff to the doctor and have a calibrated just to make sure it's accurate. Then I would ask him what range he would like you to be at and what is safe for you. For example, my doctor would tell me anything under a hundred is too low for me. then your doc has to figure all your meds, some make your BP go up and others down. It's a science, so what's good for me may not be right for you, although there are basic guide lines. But one reading alone, doesn't mean anything. There are charts on line for your BP.

Your blood pressure can change from minute to minute. Your doctor will need multiple readings for several days or weeks to find out your body's patten. Then if he's concerned after that he'll do a 24 hour BP Monitor that is automatic and will give him or her more information.

The other thing I would suggest is investing in a meter of your own, Omron is a very reliable brand and one model even comes with software to print out the readings for the doctor and can be used by two people. Sure makes life a whole lot easier than writing things down. Especially when your blood pressure is very low. I used to write some pretty strange things down. In fact, sometimes you couldn't even read what I wrote. I found mine on AMAZON.COM and my doc had recommended it. I do think they need an industrial strength one for those of us here, but it has a warranty. Was worth every penny I spent.

Good luck

I had been taking flax seed oil, for many years without any problems. A year ago I started to have abnormal vaginal bleeding due to the fact that my vital signs were so unstable by medical team decided to buy time and put me on hormones, and eventually did a deep D&C. I was in no condition to have a major medical procedure to remove my uterus. But at that time, I found out that flax seed contains estrogen. My doctor was trying to figure out how I could've become estrogen dominance. I depended on flax seed oil, which I took in the tablet, for my for dry eye, mouth, lips. You named it was dry. The hormones were playing havoc with my pots and put me in the hospital twice over the summer.

I also found many of my caretakers did not know this piece of information about flaxseed. My rheumatologist, who put me on this did not know this. My primary care was convinced that a cause tachycardia, but my cardiologist never heard this. I was relieved as I really needed to have the flax seed oil as being so sensitive to so many different things. I couldn't take fish oil. It was relieved to take flaxseed caplets. I just got the okay last week to take one tablet in the morning and one at night, although I do think my dysregulation of body temperature combined with menopause gets worse taking them. I wondered if anyone else noticed this or if it was just me?

I think it's really important that we educate ourselves an also educate our doctors as well. I feel blessed that my caretakers have always been open to anything new that I find, and send to them. You always want them passed on to them before starting anything new.

I wondered myself, for men who take flax seed, is it healthy for them to take estrogen all the time and how much? Does anybody know if this answer?

There's also a difference between taking the seeds and the oils, so it's good to read up on them and anything extra we take. I think my foggy brain has figured out how to post so hello all.

I'm exercise intolerant after many years of teaching aerobic exercise and nearly passing out each time.

So I was unable to answer your poll sorry HR goes up to 160 just trying to make my bed.

your sweet dog is in the loving care of your higher power now mack's mom. we need to let go and learn to live in "NO FEAR." your sweet dog would not want you to be sad forever. my little girl dog was also scared of thunder and knew 1/2 hour before storms arrived. i know know she's free of all that anxiety and living in no fear like I've been working on this past year. If you would like to talk about your dog and the grief you are going through feel free to contact me. I found that unless people are pet people the really don't understand the loss of a dear loved pet. many people think we should just get over it. but, it take time it forget that every time you come in from being out that your best furry friend is not there anymore. our pets are special gifts on loan to us, we do not own them only get to love them, make happy memories with them. it's the same with the people we love. we are all a gift to someone.

today I'm very sad as my friend's almost 2 year old twin baby died this week and my illness traps me in this house without a ride to the service right now. so, we are both grieving today. i would start some posts, but i can't figure out how to set up fast reply.

tears help, but remember to drink fluids to replace your tears. write down all the happy times and focus on them.

pardon my typing, using one finger as iv hit a nerve and arm has been twitching.

((((((((hugs))))))))

~bellamia~

Something I just thought of that brought me great comfort is the, "RAINBOW BRIDGE," poem set to music. A must see for anyone who has lost a pet. It brings tears to my eyes every time I watch it.

http://www.indigo.org/rainbowbridge_ver2.html

Bellamia~

I'm so sorry to hear your news. lost my sweet little dog 2 1/2 years ago and it took me that long before I'd even look at another. Now I'm glad I did as the new dog gives me lots of love and comfort. My first little dog lives in my heart and her dog tags on my key chain. Write a story to remember your dog's life, it's healing. Place favorite photos nearby you. Time heals, but you'll never forget. I'll say a pray for you at this difficult time. take care of you.

HI Cat Lady,

Bear with me at posting and just woke up from a very long nap and this is my first post.

I've been Dx with Pots, fibro, chronic fatigue., and a host of others things and as soon as I figure out my control panel I have them all listed there. Sorry you feel so bad as I can relate. Right now I'm basically bed bound. I was given the other dx,s a long time ago, but POTS just over a year ago. Suddenly, my whole life began to make sense for the first time after having been mis dx with asthma for not being able to breathe. I go into tachycardia just walking across the room.

My BP has recently gotten very low at various times of the day and night. then can shoot up high late afternoon. I found this made me extra fatigued along with the increase of the HR my whole body is so tired. Pains are so bad day and night, especially at night that I often cry. 24 hr BP Monitors showed I was going to pass out at night and early morning. I had to start taking midorine at night and hated the way I felt and thought it was taking away my brain. I take so many meds for my POTS, even weekly admitted to hospital for saline infusion, as I can't keep enough fluids in me. I was told I have the worse vascular system my doctor has ever encountered. Bad side effects to most meds.

Anyway,

I was just thinking if your POTS alone might be making you tired,due the stress it puts on the body alone and then like mine and with many people do have have firbro and chronic fatigue. Also another thought have you had Epstein Barr or mono in the past, as they have found a relationship to POTS and the two? My docs were taken back to see the numbers of my EB antibodies were so high in the past a current med masked current levels and will repeat the test tomorrow to see if I still have it going on now. I guess once you have had it and i never knew I did, you can get it again. Also, my last iron stores were 24 and could also be a problem. Do you tend to get anemic? Woman who lose a lot of blood due to menstruation can became anemic easily.

I hope this was helpful to you, as I was trying to brainstorm and think of all the reasons why My cardio doctor has explained recently that I'm so tired. He is running out of options of me. He has suggested a pace maker. I said NO! Tomorrow is the neurologist in the big city. She fine tunes my engine. I am blessed to have wonderful caretakers.I should try to stand now. I look forward to chatting with others again soon. Now let's see if this works.

Good Luck to us all that struggle and may we each have better days in the future. MY FOGGY BRAIN NEEDS HELP POSTING... LOOKS LIKE I CAN'T FIGURE OUT HOW TO POST. I'VE made a mess and I don't see a delete post. SORRY EVERYONE! This is what took me so long to post as my brain can't figure out this type of control. I'll have to call in help.