AllAboutPeace

bumping this for anyone who hasn't seen it before.

Wishing you all a holiday and New Year filled with comfort and peace!

There would be no kitchen cabinets or closets below waist level or above where we can comfortably reach.

The phone would be hooked into an intercom system that responds to your voice from anywhere in the house - "answer phone", "dial", "saline delivery" Lol. There would be no - hearing the phone ring, knowing it's not in the same room (or even if it *is* in the same room!) and wondering if it's going to be worth the effort to get up and answer it...

The same intercom system would be able to open the back door, by voice command, to let the dog out (into the fenced in backyard) when he/she needs out.

There would be a shooter bar (in the "entertainment district" near the Gatorade and Nunn bars) featuring a variety of salt shooters - with different sodium contents; Himalayan; sea salt; iodized, etc.. For snacks they would have pretzels, extra salty chips, beef jerky, salted peanuts and, of course, chocolate (just because)

Lol. Ditto to the last few comments!! Actually, I can relate to everything in this thread.

When I get that total blanking, I notice the other person looking at me and waiting for "something" to come out of my mouth. It seems like it's happening in slow motion. Lol. It's funny to see how different people react - some will feel the need to jump in and finish my thought and some will just look away and pretend the conversation ended and move onto the next topic. They are accustomed to it now - it's part of the package.

I have had a lot of cognitive issues, but thankfully they don't seem permanent. It's mostly when I'm upright or if I've been trying to concentrate on something.

Angie,

I agree with you about wanting them to look at the link closer. When medical authorities from around the world are questioning a possible link, I think it warrants attention.

It was reassuring to see that there are doctors like that who are willing to keep pushing for their patients. We need to figure out some way to clone them. The very-active-before-pots scenario has popped up quite a bit over the years; I'm curious about that - particularly with the ratio mentioned in the video. It's counterintuitive - we tend to think that more activity makes us more resilient to illness. Maybe it depends on the illness??

Here are a few more medical articles in case you haven't come across them yet:

Japan withdrew their recommendation (and stopped vaccinations) for the gardasil vaccine in 2013 due to adverse reactions and they appear to be taking possible side effects very seriously. This was in their medical news last month.

http://www.medscape.com/viewarticle/850436#vp_1

The next one was published in a peer reviewed medical journal. I wasn't able to access the full article - but this is a link to the abstract.

http://www.tandfonline.com/doi/abs/10.3109/07853890.2011.645353

~Peace

*just to clarify...when I said I'm having a hard time getting rid of my energy booster - I didn't mean it's a hard med to come off of. Just that I'm a little hesitant for fear that I will be a sloth again.

Singout,

Yes, you can have this condition with a normal looking BP. My BP was great on my TTT until it suddenly plummeted. It's amazing (and frustrating ) how badly we can feel with good looking numbers!

I have pots/NCS with low BP and low resting HR. Fatigue/exercise intolerance has been a huge part of my illness, too. I did benefit from Florinef (although it only raised my BP very minimally). I didn't respond well to Midodrine - it dropped my already low HR lower which put me on the couch more. My EP prescribed one coffee for me in the morning and I did notice a benefit from that. I couldn't tolerate coffee for over a year when I first got sick.

Next my EP mentioned trying Paxil, but in my own research, I felt like it wouldn't be a good fit for me. Meds affect everyone differently, so you really don't know until you try, but my gut told me it wasn't the right one for me. When I researched Wellbutrin, it seemed like a better fit and the side effect profile was more appealing. I needed something to give me a little boost. My EP agreed to give it a try.

I wasn't expecting results right away (because people often say it takes weeks to notice a difference) but right from the very first pill, it raised both my HR and BP to normal levels and increased my energy. I charted it for me EP, so it wasn't just how it felt. As soon as it wore off, they dropped again. To me, it felt just like the effects from coffee. It gave me that steady boost of energy I needed (without making me jittery or hyper). I could see that it might be too much for someone who was more in the hyper stage, but for me, it actually made me feel more 'normal' energy wise, instead of totally sloth like . Eventually, I did have to cut out my morning coffee because i was already getting the 'coffee effect' from the med. I didn't need the med for the antidepressant effect, so I actually noticed no difference mood-wise or any other effects (except I think it did increase my metabolism),

I hope you are able to find something that helps .

*florinef is listed as having a contraindication with Wellbutrin on drugs.com. apparently both can lower the seizure threshold. I took both of them for over a year together and had no problems with that. I've just weaned off Florinef, with the intent of going med free for awhile, but I'm having a hard time getting rid of my energy booster. Lol.

Lol, Sarah - "I notice your painting...it's nice".

Yes, you know it's not a productive dr's appointment when...

It's torture sometimes to sit through the appointment when you know in the first few minutes (maybe even seconds) that it's going nowhere.

I think a meaningful tattoo is a great idea.

The 'spoon' ideas are great and very symbolic. Becia - I love your idea, too. If you can't get the tattoo, it might also be nice to have it done up (draw it, graphic design - computer generated and print it, paint it, use clay to sculpt it - the craft kind that you bake, etc) and put it somewhere you can see it everyday.

Sarah:

Without a doubt when I think of this group, I think of strength and courage. You have courage for so many things you deal with everyday. You have courage when you smile amidst all of the chaos and uncertainty about what is going on with your body. You have courage every time you agree to see a new doctor - hoping that they will be able to help you, but knowing that maybe they won't. You have courage when your body doesn't let you do the things you really want to do. You have courage when you put yourself 'out there' to help others in their journey. The list goes on and on - but I feel like I have too, so I'll stop there . A word like courage also has the added benefit of 'giving' you courage in the moments that you need it. It's not original, but it's powerful.

I think you should definitely find a word or words that speak to you or inspire you. Some other words that come to mind are:

honor, grace, hope, determination, truth, believe, perseverance, heart, vision, spirit, unconditional, shine, balance, inspire, celebrate, journey, transcend, unity, oneness. I also really like the word 'embrace' (from Becia's story) - it could not only symbolize embracing your own journey, but also the way you embrace others, in theirs.

Aww thanks, you are all too kind! If my silliness made even one of you smile, it was worth doing!

Even when I'm not posting, I'm part of the silent cheering squad for all of you.

'Twas the night before Christmas in the little town of Potsville,

It's a place of courage and plenty of strong will!

Everything is peaceful, long after the sun has set,

Except for the screen glare - someone's searching Dinet.

The (compression) stockings were hung by the chimney with care,

In hopes that St Nick could squeeze *something* in there.

The Potsies are laying awake in their beds,

While visions of salty snacks run through their heads.

When out on the lawn there arose such a clatter,

Fortunately, I was up already - dang bladder!

Away to the window, I stumbled, trying to see,

But feeling soo blurry headed, it wasn't to be.

As I held onto the sill, trying to catch my breath,

I thought of the day I can do stuff and *not* feel like death.

I grabbed a Gatorade, and chugged it down,

Then I'd really see what was going on in this town.

The scene was beautiful, the snow was pure white,

Still, my body went immediately to fight or flight!

When what to my focusing eyes should appear,

But a miniature sleigh and a bunch of reindeer.

I haven't seen anything this crazy in awhile,

I thought to myself, then fell down in a pile.

I contemplated for a minute, explaining what I saw, to my docs,

They'd believe me, right? and not think it's a crock?

With a little old driver so lively and quick

I knew in a moment, it must be *um...ah...what was that name???* oh ya! St. Nick

More rapid than our heart beats, the reindeer all came,

He whistled and shouted and called them by name.

On Dasher, on Dancer, Prancer, and Vixen,

On Comet, on Cupid, on Donder and Blitshteyn

He corralled them all onto the roof,

I was suddenly thankful it's burgaler-proof.

And then over my head, I heard a flurry of noise,

Perhaps it's just a jokester, with one of his ploys?!

As I drew in my head, I began to shiver.

Meanwhile, St Nick appeared with gifts to deliver.

He was dress'd all in fur, from his head to his toes,

I'd wear it myself, as I was already half froze!

He had a bag of toys thrown over his shoulder,

Yikes!...I've gotta sit - before I fall over.

I watched as he inspected the {compression} stocking, cinched up tight

His challenge - to fill it. He might be here all night!

Suddenly there was chaos - feet and arms interlocking,

As he grunted and struggled to fill that stocking.

Success at last, now Santa needed a breather,

Fortunately, for us, He's an over-achiever.

He had his snack and headed back up the chimney,

I'm sure, no one else could do it quite so nimbly.

He climbed back into his sleigh and with great insistence,

Wished the people of Potsville good health and Merry Christmas!!

Peace

Oh no!

Did you call a pharmacist to see if there is something you should do?

I can never remember if I've taken my pills either. What I do now is just put my morning pills (not the bottles - just the individual pills) on my nightstand with water the night before. I have a water bottle with a little concave in the top, so I put them in there. If they're gone I know I've taken them. Same idea as the pillbox. Definite Pots brain here too!

Hope you have an uneventful rest of the day!

The med trial and error can be very disheartening for sure!! I feel for you - many of us have been there.

Just a thought about Florinef. If you find it helpful in some ways it might be worth discussing with your doctor the possibility of adjusting the dosage a little. I have the same symptoms you are describing (constant headache, bloating) when my dosage is too high (for me). I don't have those symptoms at all if I adjust down even by as little as a quarter of a pill. Its amazing how much of a difference that little amount makes. I only feel the benefits when it's the right dose.

Midodrine didn't work for me either.

I hope you are able to find something helpful soon!

I would say that Wellbutrin gives me a little more focus and an overall boost. It makes me feel like I can do more. Honestly, it feels very much like the boost I get from coffee - which is a good thing for me now, even though I couldn't tolerate it for the first year. Wellbutrin did raise my blood pressure - which was also a good thing for me. I tucked my BP cuff away in a drawer months ago because I don't feel a need to check it.

So, I would say it helps with constant lightheadedness/ spaciness, but when I stand and the pooling starts I still have the lightheadedness that comes with that. I feel like the NCS side of things is what really limits me. Wellbutrin's a keeper though, I wouldn't want to go back to that sluggishness/brady again. I like the fact that it doesn't alter my mood and it doesn't cause weight gain or some of the other side effects of SSRI's. I only get positive effects from it. If there's a downside, it's the fact that you are not supposed to drink alcohol when taking it.

Andy,

I agree with Corina, those measurements would be helpful. I've been told it's a good sign if it's raising up with movement.

Bradycardia has been an issue for me as well, for about two years, and I've always felt extra symptomatic with it (sluggish, lightheaded, weak, sometimes nausea), especially if I was up and trying to function. Sometimes I could raise it up and sometimes not. I even dragged myself to my recumbent bike one night and tried to raise it up that way. The hr wouldn't budge at all.

It was definitely one of my least favorite symptoms (as if there are *favorite* ones...) because there was nothing I could do to control it and it just felt awful. Being supine provides some relief from my other symptoms, but not from this.

Wellbutrin has been great for helping to raise my heart rate, since the day I started taking it - at least 9 months ago. I don't check it very often anymore - probably because I don't feel the need to - but when I do check it my resting hr is usually in the 60's. It feels much better than 40's.

Corina - I can't even imagine how your heart rate average was 47 and you had been to the gym! Good for you for working on the Levine Protocol. You must be working really hard - it's tough. I hope you get good results.

Goschi,

I thought you might be interested in this 2013 study: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3478101/

Excerpt:

Using only the current 30 bpm criterion, 80% of control subjects would have been diagnosed with orthostatic tachycardia (false positive rate) using a 30 minute tilt table test, compared to only 47% with a 30 minute stand. The false positive rate for a 10 minute tilt was 60%, compared to 33% during a 10 minute stand.

_______________

The numbers of false positives is crazy! I think it's worth noting that during the 10 min stand (which was shown to have less false positives), the subjects were allowed to move their legs.

Goschi,

Interesting to do your own study. It sounds like they were good sports about it.

The heartrate fluctuation in itself is not considered Pots because part of the criteria is that the patient experiences symptoms along with it for a minimum of three months (or six months depending on the source of reference). As you said, those symptoms we talk about on here; the 'syndrome' side of things. I suspect they added that criteria to account for some natural hr fluctuations in the general public. Also, I don't know if this affects your findings, but the current diagnostic criteria is a hr increase of 30 or over 120 bpm within the first 10 mins. {http://www.dysautonomiainternational.org/page.php?ID=30. }

Its interesting though, that HR is a central focus because I consider the sinus tachy one of the least of my problems, really. That part of the illness is not what prevents me from being able to participate in life. For me it's more like an 'indicator' of autonomic dysfunction rather than the main problem. If I were to start eliminating symptoms (and wouldn't that be the best thing ever??... ), there would be others that would go first. It's unfortunate actually that Pots is named the way it is because postural tachycardia doesn't even come close to describing what we experience - as of course you know.

Maybe you could use your information as evidence that we need a better name in order to help people to understand the reality of this illness. I think it's great that you have this opportunity to educate your friends, that helps all of us. I do think it would be important, though, for them to not walk away from this thinking they meet the criteria for Pots, it's too devastating an illness to be reduced to just that fluctuation. I don't think it's that unusual for people from time to time to experience some of the symptoms we do, like brain fog, nausea, dizziness when getting up, etc. I look at HR the same way. It's not a problem until it's a problem...and don't we know it when it is!!

I hope one day we will all be able to put it behind us.

Gjensen: Yikes! It sounds like you need to slow down a little

You are in the right place for empathy about this though - we understand the need to push and want to do something normal. I had to abandon a short walk yesterday, too. I started out walking on the road, but had to come back on the grass. If I'm going down, I prefer the softer landing. Lol.

Have you tried shorter walks, a few times a day to build up your endurance? When I first started 'retraining' my body for activity, I found I could do two minutes on the recumbent bike without having a setback, so I did that a few times a day, building up to five or six times. It sounds like nothing, but I always felt it was better if you could avoid putting your body in recovery mode. Then you can still function for the rest of the day while building up endurance at the same time. Also, I noticed that my tachy was lower for a period of time after biking, so more times per day meant less tachy overall.

Corina, I find walking helps me the most, too - as long as I have the right speed, the right distance and none of the neighbours come out to chat. Lol. I love my neighbours, but I really don't like to see them coming when I'm walking. Lol.

Goschi, trying to extend my walking time by even a few minutes results in a crash as soon as I stop moving. So I relate to what your saying. It's slow and steady for me.

dkd,

Hopefully you won't have a long wait for the test.

We are all different of course, but I just wanted to share my experience (with the hope of being a little reassuring ). I have NCS and pots too. I also had ECG changes and my doc was quite sure that I had cardiomyopathy based on my stress test. I had another echocardiogram and then a stress/nuclear medicine test shortly after, that both ruled it out. My personal feeling is that my results would 'look' different every time, even though I don't have the waxing and waning kind, but just because of the crazy and ever changing illness that this is.

I hope everything goes well for you. Please keep us updated.

Hi little blue jay,

Im sorry to hear about your work experience! I guess compassion wasn't their strong suit...

I don't have the relapse/remitting type, so I understand that you may be faced with more of a challenge because of that. I was approved the first time with Pots as my only diagnosis at the time (they may have put vasovagal syncope as well - not sure) and I hadn't tried any meds at the time. I had not had a TTT at the time I was approved, but my symptoms were severe. My internist diagnosed me from poor mans tilt and data they collected while I was hospitalized.

Has your doctor done any poor man tilt's on you? Have you had a Holter monitor? That information may be helpful. Is there someone else (EP/internist/neurologist) locally that you can see that would be able to diagnose you while you wait to get to Hamilton?

In terms of filling out the forms, I think more detail is better. I tend to be one to downplay my symptoms, but this isn't the time for that. I was really descriptive about how my symptoms affect me. Instead of saying something like 'I can't do housework', I would explain exactly how each thing affects me and avoided using medical terms. So, standing to do dishes, would cause my heart to race, cause me to feel dizzy and to have difficulty breathing, etc, etc. Your idea about the symptom journal may help you to keep track of your triggers and their effects. I referred to my journal quite a bit when filling out the forms. It's easy to forget some of them - or maybe you have a better memory than I do .

I also submitted two or three (peer reviewed) articles about Pots that I thought would be helpful and that would medically back up what my symptoms were showing. An article that discusses symptom fluctuation, relapse/remitting or the unpredictability of Pots might be helpful in your case. It's tough to commit to anything when you don't know when a relapse will hit you.

It's probably good thinking to get a document from your employer that indicates your 'unreliability' due to health reasons. Maybe they could even add in something about the fact that you had to leave early from various shifts, so you have proof that you tried to work. You showed up - and that's an important fact!

I hope things go well for you. Feel free to PM me if there is anything I can be helpful with

Little blue jay,

Im sorry to hear you are going through all of this. I'm a Canadian on disability. I want to respond fully to your post, but I'm just going out the door for an unexpected vet visit with my dog. I'll get back to you a little later

When my son was born, he was premature and required resuscitation and a ventilator for several days. After he came off the ventilator, the docs gave him caffeine for his apnea/bradycardia spells. It's a common treatment for preemies with apnea. I suspect other stimulants would have a similar effect.

"Caffeine is believed to act in the brain by increasing the respiratory reflex to carbon dioxide and also by augmenting the ability of the diaphragm to contract during breathing." http://www.uq.edu.au/pharmacy/new-caffeine-treatment-for-premature-babies

I couldn't tolerate coffee until about a year after getting sick, but began drinking it again after I started having strange 'sleep attack' type (sudden need to sleep immediately through the day) issues. I now use Wellbutrin - which for me acts like coffee - only lasts longer . I don't have breathing cessation type/apnea issues anymore and this med raises my resting bradycardia HR and my low BP. I could see that it may be an issue for people with higher resting HR's or BP's.

Wellbutrin SR helps me in the mornings, too. I wake up at 7am, take my med and go back to sleep for another two hours. It gives the med lots of time to kick in and when I wake up then I can get right up out of bed and function. I had very sluggish mornings without it. If I oversleep and miss taking my med early I have a much harder time getting out of bed, so I know the Wellbutrin is making a difference. Both my BP and resting HR were low prior to taking this med and it brings them up to normal range.

For me, this med works pretty much like coffee, but with a longer effect. I got those benefits from the very first pill, so for me, it didn't take 4-6 weeks to find out if it was going to help.

My mornings before were like waking out of a coma or hibernation. It took at least an hour of laying in bed before I could get up and even then I was pretty sluggish. Florinef helped that improve some and the combination with Wellbutrin makes a big difference. I prefer to not take meds at all, but I wouldn't want to go back to mornings without it.

I hope you find something that helps - it's a rough way to start the day.

We will all be there with you in spirit, Katie!

Thinking of you and sending you (extra) strength and healing thoughts

This is such a great thread!

You know you have Pots when...

You have such bad nausea for days that everything you can think of to eat (including a dry cracker) is repulsive; however, you can mix up a salt 'n water shooter and that goes down easy.

You see your doctor make a gagging face when you tell him about drinking salt/water shooters.

You could help a sketch artist recreate the inside of a store fitting room including the exact length of the bench, the height of the walls and what the ceiling looks like...(if only you could remember anything...)

Too funny, Chaos - faking people out! That is exactly how it feels...and like a little victory over Pots.

I love your line "I can still be 'great' if I want to be".