POTSHOLE UPDATE

[EarthMother]

I have such a hard time keeping track on the boards ... but wanted to send good thoughts to those in the deep potshole.

As for me, I am back up to my 'normal' POTS levels & managed a few meetings this week at work.

How is everyone else doing? MightyMouse are you still crawling out? Merrill?

Where is Tearose? Has she gone undergroud?

Let's get a headcount....

Who's in?

Who's crawling out?

And who is out and about?

Good thoughts to everyone!

EM

[DSM3KIDZ]

Well I just fell into the hole again. I fell so far I'm covered with mud and am stuck. I should just stay here because when I'm good, I'm real good than out of nowhere (can't figure out why) I fall into the potshole and I emotionally can't handle it anymore. My roller coaster life makes me feel like Jekel and Hyde or like I have bipolar (I don't) because I switch from happy go lucky energized for 1 or two weeks to crab apple depressed angy mom for a few months...

That's my update.I hope the rest of you are doing good.

dayna

[Ernie]

Hi,

I'm in the Grand Canyon and I am starting to make myself confortable there. I try to crawl out once in a while but slip back as soon.

Ernie

[Roselover]

I'm at the bottom, grasping my cup of tea and straining to see the sunlight at the top of the hole. BUT, this morning when I awoke, I thanked God for leading me to all of you because knowing there are others out there going in an out of the hole is a real comfort.

Ernie, Dayna, would you like a cup of tea?

Roselover

[sunisshining]

Hi all,

i'm soooooo sorry that all of you are in the pots hole. it makes me sad. i would say i'm not good/great but i'm not at my worst. i'm half way in, halfway out, which is a victory in itself, i think. plus i think i gave u all enough detail in my humungous post last night...sorry bout that

hugs and prayers to all of you.

love you lots,

sun

and keep me updated, okay!!! you can send personal messages, or whatever, but i LOVE hearing updates, i can promise u that (and you hear enough of mine!)

[MightyMouse]

I'm still in. Off to go nap, but wanted to thank you for checkingo on me Nina

[Guest Julia59]

I'm in a deep hole lately. I just got up at 10:30 and already ready to go back to bed. Too much going on in my life.

But I did get some good news! When I went to the dentist, I didn't have to have my bridge replaced, they just filled the tooth under it from a side window, and as far as periodontal issues---mine turned out to be mild and they just gave me some fancy gadgets to use, in addition to my brushing, flossing and rinsing.

I think I got some kind of virus from my son's girlfriend's daughter. It's just a weird wet base sounding cough and a general feeling of unwellness. Heck it's hard to tell if the unwell feeling is POTS or the virus???

I'm not sure if i'm in a POT's hole or it's my spinal issues---or both. Hard to tell.

Thanks for asking---and I hope you continue to feel better.

Julie :0)

[morgan617]

I can't see anyone from down here, so must be pretty deep. I fell down twice yesterday, which is pretty depressing. Just waiting for that hip to go. Can't drink tea, so could some one toss down a liter of water, please? morgan

[Guest tearose]

Wow, would I just love to have all you over right now for a party! I just baked some regular and sugar free cookies. I also made a vat of my best "farfel stuffing" to take over to friends for a special dinner tonight. I have enough to feed a small village!

I think I go between walking the upper rim of the potshole to actually laying down on the ground and looking downward into it. The potshole LOOMS BEFORE ME...

I have been busy with life and that is good and bad. Although there really isn't any good or bad in life, but that's another story....

Okay, so what am I doing? WARNING>>>>this is my stream of consciousness writing...

I healed from my little surgery and I begin to think the anesthesia feels out of my system.

Then, my body starts getting these electric shock feelings in my hands. Not painful but annoying. I work through it and begin to tidy and organize our basement.

My one son turns 20 and brings home a girlfriend...to our still kinda new home. Still settling in and I'm in shock cause now I realize I am "old" enough to have a son with a lovely girlfriend and I'm just growing as fast as I can, but I am not ready for company and a girlfriend????. I had to get ready for them coming so I had to move all my stuff that I was organizing out of the way. Then I begin to realize that life is passing more quickly.

Then my knees begin to hurt...

We took my 18 year old son around to choose between the colleges he was accepted to....a lot of walking....

My knees are feeling horrible, I feel like that something crushed them. It comes and goes mostly I can't kneel, do stairs, squat, get up easy...motility issues are back...

My eye pain is back. I am in a funky place and trying to work through it. I will go to my pcp next Friday to get a handle on what issues are still hanging around then.

Now I am thinking maybe it IS a good idea the pcp wants me to go to Mass General in Boston for a workup. I don't think I could go back to Mayo now, I don't have the energy and my insurance has changed. I just don't want to be subjected to any "ignorant" doctors so if I do go you canbet a batch of cookies that I will be interviewing each doctor BEFORE going there!!!

My concern is that now I am having more symptoms again and the "professionals" will be getting closer to a "new" diagnosis.

I use to be that I would try to wait to go to the doctor till my symptoms were present and strong, so they could "catch them at the worst". Now I fear going at my "worst" for fear that they will make it all seem more serious than I want to hear.

I have missed posting. I have been so funky and unable to resolve some of my own issues because I have been so "in them". I am glad I stepped out of that zone to post today.

I'm now sitting at the top of the potshole with my feet dangling over the edge. I'm sending down water and coffee and tea and both regular and sugar free cookies...oh, and TLC too!

best regards dear friends, tearose

[Miriam Poorman-Knox]

This weather *****!!!! For those of us in the east. Cookies would be so nice, especially since snow is expected after this rain stops. I'd even take the ones with the sugar. My pots is on the ledge. Dealing with my mothers death and family idiots. Plus the weather makes me feel that I just went through a wringer washer!!

NO kidney shut downs in 3 months YEA!!!!!!

Later Miriam

[blackwolf]

still in the hole, but making some progress. ahh, tea, earl grey please. cookies, no thank you, i think i'll have some sugar free pudding. the skies have cleared giving way to cool days and cold nights.

getting back pain under control, getting electrotherapy 6 treatments to go, if it helps, i might get a tens unit.

morgan-i have been tipsy and have fallen twice over the last week, hopefully, no more for either of us.

best to everyone,

blackwolf

[LindaJoy]

Hi, everyone. I'm still deep in my POTS hole. I'm sorry to see so many here with me. Maybe, soon, we'll all be out of the hole and onto better days!

Take care, all!

Linda

[Guest Julia59]

I'll take some of those sugar cookies! We're supposed to have snow in Toledo!

Could be up to 5 inches. But I doubt it---The ground is still warm from the 80 degress we had just about 4 days ago-----------This sure doesn't help this nice new basey cough I have. I just ended up with this nasty cough and upper right chest congestion, and when I cough, it's a heavy base cough that kills my upper neck/cranium issues. Anyone got any screws to gets things put together a little better in that area for me?

Then earlier today---what happens? Well i'll tell you what happened...............

I heard the phone ring, and you know how sometimes you can walk kind of fast towards the phone. Well I did that because I let it ring too long, so I had to hurry and get it. Well during all this as I am going towards the phone, my blazer gets caught on the door jam and I have no clue of this until it yanks the you know what out of my neck. Now I feel like someone has put their hand up inside my neck and twisted my brain stem. My wish is to find out that I am not really as unstable as they thought and we can work at making my neck stronger, but i'm not sure I will get that wish. Even as I type this my neck/cranium area is clicking back and forth. It's down right bizarre. I wouldn't blame any of you if you didn't believe it.

Who could?!----I don't even believe it!!

Tearose HANG ON---don't fall in.

Best wishes everyone!

Julie :0)

[Gena]

Oh Julia, that sounds awful what happended to your neck. I hope it will just re-adjust itself and alleviate the pain and pressure. It sounds like you gave it a real good clean and jerk! I truly pray your upcoming doctor visits will help get you on the path to recovery.

I have been teetering in and out of the hole, mostly hovering on the edge. I see there are a lot of new people who've joined the board in a short time. I started feeling guilt for not having the energy to welcome everyone and post a reassuring response, so I stepped back for a brief period. ( I'm sure we all appreciate Morgan, Blackwolf, Sunishshining, Katherine and all the others who've stepped in and really tried to respond to everyone's questions lately)

Tonight I woke up very startled, as I thought I had heard a noise in my sleep. My heart was pounding ferociously with some arrythmias thrown in for good measure. I got very nauseated had to fight off the adrenaline rush.

This is what causes me to fall in the pots hole - my heart going whacko and insomnia and anxiety. It seems like everyone else in the hole seems to get here more so because of fatigue, dizziness or weird pain issues...How many of you fall in the hole mainly due to issues with tachycardia, painful, forceful heartbeats, chest pain, insomnia, low BP and anxiety? I envy those who say they could sleep 24 hrs a day! I know the grass is always greener on the other side, right? I guess I just want to know that I'm not alone.

On the bright side, I am going to pick up a new doggie in a few hours that I adopted from the humane society. It will be interesting to see how he gets along with my little shih tzu Wilson. You all are continually in my prayers, newbies and oldies alike. I send lots of love, hugs, prayers and friendly puppy kisses out to everyone.

Now lets get out of this hole and have some sunny days ahead, shall we?

Gena

[StaceyYount]

HELLLLLLLOOOOOOOOOOOOOO!

I am down here and would love some tea thanks! PG Tips if it is possible.

So sorry to read that so many of us are down here! Maybe we should tunnel to each other but since I think all we would have the energy for is to use a spoon it may take awhile! heehee :-)

Was beginning to see the light and then slipped back a bit!

Miss all of you, welcome all the newbies, sorry you are here but we are a good lot!

Hope to see the light soon and to hear you are all there too!

Stacey :-)

[persephone]

I am in suicidally deep hole. I've been in hospital AGAIN for 3 weeks here at home, away from University. They refuse to do anything because they are cardiologists with no specialty in dysautonomia/pots. So they got in touch with my specialist who says I'm just on a waiting list, but they can't give me a date for when I'll be seen. Because they didn't suggest any treatments for my Dr here to try, I'm being sent home and told to get on with it.

I've been walking around the ward with a zimmer frame on days when I don't need wheels, and have been given a perching stool for the kitchen and a board for the bath etc. I'm in my twenties and living like an old woman. I don't understand why no one will help me get better.

It's just all too much. I feel like I've taken all I can, and I just want this all to end. Forever.

[calypso]

Persephone,

I am so sorry you are having so much trouble finding doctors who know something about POTS. But PLEASE don't give up! So many of us here have an illness that waxes and wanes, and there have to be some good moments for you sometime in the future ... and I am sure there are people in this world who haven't found you yet, or you haven't found them yet, who CAN help you. They may not cure your POTS but maybe they'll help you mentally deal with it, or help you adapt your home to fit your needs better.

I know it's tempting to give up, but since none of us know where we go when we die, what if it's a place even worse than now ... where EVERYONE has POTS forever? (Probably not, but try to remember that suicide may not mean the end to your problems.) From what I know of you from being on this site, you are a bright, special, intelligent young woman and you have many years of good life left to be lived.

I will be thinking of you and wishing/praying that you get the help you need soon.

Amy

[JLB]

Ditto.

I'm in the hole. You have to hang on - keep in mind, we ANSers relish the good days in ways others cannot, and tomorrow could be that day that we savor.

We are, by necessity, very strong people. We can get it done, even though the MDs are clueless. What do you do to care for yourself, persephone?

[Merrill]

Hi, everyone --and thanks, Earthmother, for asking about me. I'm hanging in there I guess ... dangling by my fingertips from the rim. Since writing last, I decided to cut my bb dose back to 12.5 mg per day and just get used to the tachycardia again. Trying to see if my mood will lift and I can start burning calories again. (And stay awake all day/evening.) So far so good.

We started looking into recumbent bikes online last night... Did anyone who was thinking about it a few months ago actually take the plunge? I really want to try to strengthen my legs, and I just can't do stairs. What other exercises do people do for their legs? I should probably put this question at the end of an exercise thread, but I'm lazy!

A note to Persephone--hang in there, kiddo, and get thee to a therapist, quick, if things are not going your way. I learned this Martin Luther King Jr. quote on this site: "Only when it is dark enough can you see the stars." Just one short month ago--less, even, you were writing to tell us of your acceptance to Oxford: http://dinet.ipbhost.com/index.php?showtop...4&hl=persephone and that you'd started exercising again. http://dinet.ipbhost.com/index.php?showtop...6&hl=persephone So you know that things can change for you and that they can change for the better. Don't give up! (By the way, I sit in the shower and perch in the kitchen on a stool too ... who cares? You get clean and food made... what else do you need?) Everytime you think you can't do something, try it anyway. You might find that you actually CAN.

Best to all,

m

[morgan617]

Merrill, we got a recumbent bike. It is the easist thing so far for me to use. We got a SportsArt C51R. It has a lot of options and even the seat is electric for those of us not strong enough to screw done seats. I think it is a very good thing, I only do a few minutes a few times a day on the very easiest cycle, as it's killing my left groin (MRI tomorrow) But I am happy we got it. It's about mid price range I guess. And my son is doing well on it too, hence getting an electric adjuster, I am 4'11 and he's 6'1.

Persephone, don't give up. I can't tell you how many times I have felt the same way, as has EVERYONE here, especially those of us that have been sick a really long time. It does get better. You will have good periods and bad periods, as we all do. For some reason, most of us are going through a really rough time right now. I stay in my pj's for 2 or 3 days at a time. I have been in hospital for depression, so trust me when I tell you, you aren't feeling anything I haven't. But now when I get really sad, I think of the people I really would destroy by acting on those thoughts. We become very self centered when we are depressed and think we are doing everyone a favor, but we aren't! WE AREN'T. Hang in there and lean on us okay? morgan

[DawnA]

I am sorry to hear so many are in the POTS hole. I just got out. It has been a year of going down hill and I started accepting that my baseline was really low and I was giving up hope. Three weeks ago I started CoQ 10. It has helped me significantly with my fatique. I was sleeping 18 hrs a day and doing very little when I was awake. Now I hardly need a Nap.

Persephone, It makes me sad that you are feeling this right now. I have felt the same feelings and I know how bad it hurts inside. It is hard when you lose your hope! There is hope and you won't always feel this bad. We are here for you.

I have been having a hard time keeping up with the site and feel bad that I am not able to respond to many posts. Know that I love and care for everyone of you. Welcome to all the new people. I ahve been in a depression and reading the posts has been very difficult for me. Tearose I will be over for the cookies with sugar.

Take care DawnA

[blackwolf]

Gena, don't feel like the one on the odd side of the symptoms, i too, have so much trouble sleeping that i have had to try some of the old tricks that worked, stop working and being tried again. running out of pills that work without nasty drunk feeling in the am. and the palps an tachy, what else to try, i'm on toprol xl now, at 50 mgs, going to 25mgs, to see pros and cons, ssoooo tired of lack of respoonce of cardio doc. hopefully will start with new internal meds that now what POTS is and are willing to try stuff, talked to one on the phone just the other day, she said as soon as she can get me in, full work up, mabey a few days inhospital, just to get a handle on things and start fresh. she even wants me to priint off and send as much info as possible.

hope we all start doing beter soon.

blackwolf

[Laura]

Merrill, I just started in a study which involves exercise using a recumbent bike. I have a Diamondback brand and really like it. The study is based on the theory that if you increase aerobic activity, you increase your blood volume by something like eight percent (potentially) and that increase can really improve symptoms. They want you to do 20 minutes of cycling three times a week. (I spazzed a little hearing that at first, but you can break it up into whatever is managable-2- 5min here and there though the day- to add up to your 20mins) You judge your speed and intensity by what feels like a "fairly light" load to you, and what you can tolerate. Anyway, the point is, although I haven't really felt much change to my symptoms yet, I do feel an improvement to my mood. It is really tough to do, but so worth it. It gives me a sense of accomplishment and purpose. I like feeling like I am actually doing something that might improve things somewhere along the way. Somehow, I feel less bummed with the exercise (release of good endorphines?) Sending good thoughts and wishes to everyone! Laura!

[Merrill]

Thanks, Laura. With whom are you doing this study? Sounds interesting ...

Would you mind giving me the bike's model number? Does yours have a heart rate monitor? (I saw one advertised that automatically shut off when your heart rate got too high...) I'm going to look into your brand and the one Morgan named. There are so many kinds--from the simplest belt-driven kind that only costs a couple hundred bucks to the magnetic kind with all sorts of heart monitors & gadgets that costs a couple thousand. I'm just not sure ... we'll have to test "drive" a few, I think.

[Laura]

Merrill, Right now I am borrowing my dad's machine, it is a Diamondback 1150R and was pretty expensive- I think around 1,500? it does have a heart rate monitor strap plus the monitor on the handles ( you rest your hands on the handles and it gives you a readout) It is magnetically run, so you never have to plug it in or use batteries- pretty cool machine. I am looking at getting my own and I think I will get the Diamondback 400RB. It is $549 amd runs on two 4dd batteries. It still has the monitor on the handles but you'd have to get the chest strap separately. I haven't really looked into other brands because I really like the one I've been using. It is alot of money to put out, so it's good to check stuff out!

The study is being done through my EP cardiologist and his co-worker who has a background in kineseology. I think he said the study was mostly involving people with NCS but POTS could easily be included with different study parameters. (should have the same effect on the body) They are basing this study on one that was performed in Australia that showed very good results (It was done only on people with POTS, i think). I hope this is helpful info for you guys!! Laura!