Been Quiet, Been Thinking I'm Kinda Done...

[Becia]

Been quiet lately due to just not feeling well, and trying to focus on school stuff and the house, but felt the need to "talk outloud to others who understand me."

The best line I've seen about POTS all day... "Your body may look the same, but it'll never run the same way again. You might as well throw out the textbook because your body obviously hasn't ever read it." Saw this on a post of Bunny's, and it really got me thinking.

Patience isn't my strong suit, never has been. I keep waiting for the miracle drug that will relieve my symptoms, for something to take my mind off the fact my BP is 160/130 a LOT, and my heart rate can go from 78 to 150 just standing for a few minutes. For something to take away the dizziness, the exhaustion, the tremors and shakes, the pain... I've made a lot of headway since my diagnosis in what I've been able to do when I was first diagnosed. I couldn't stay conscious for lengths of time, was passing out while laying down even. Now, I've basically trained myself to sit up and fight through the feelings, and there are days I don't pass out, I'm just symptomatic. If I overdo it, yeah, I'm out like a light, sometimes those are small quick outs, and I recover fairly easy and keep on going. There are still the major outs that have me on the ground for hours with problems, but they are few compared to how they were before. I'm realizing my triggers, and trying to keep them to a minimum. I've been using a wheelchair since August, but always end up prefacing the convos about it that "I'm using it for my safety, I can walk, I just have issues doing so." Finding new ways to do old things, as one might say. Pushing myself a little each time and standing for a bit more each day to let myself feel how my body reacts, and to work on through it, like I did when I started working on sitting up.

I think I'm done hiding behind trees. I might as well join the other zebras. I think I'm done with any extra testing at the time... I just need to give myself some time to accept the way the meds are making me feel, to trust that I'm gonna be okay. I'm not done searching for a cure, by no means, please don't think that... I just think maybe the cure is inside of me, and I need to figure out how to live with it. It just takes time, and I need to be okay that it's gonna take the timeline my doctors have said.

just needed to get this off my chest.

[ophelialit]

Hi Becia,

I LOVE this post--truly. I've been where you are many times, and I'm actually there again right now *waves to you from across the room*. Like most of us, I've been tested and prodded and poked and disbelieved and accused of hypochondria (and worse) and had good days and bad days and days where I thought I had this licked and days where I thought I'd die. I've had every symptom in the book at least twice, and the MINUTE I think, "Well, surely nothing else can crop up!"--something does. When I was diagnosed with optic neuritis back in September of last year after spontaneously going blind in my right eyes, I was pretty much at the end of my rope, so to speak. I did the torturous 3 days of IV SoluMedrol treatment because it was supposed to be the cure-all and bring back my vision ASAP. No dice. Here I sit 6 months later with the exact same lack of vision. Worse was the new round of testing and doctors who were DETERMINED to prove that it was MS or syphilis or Lyme or gremlins or whatever. And now? With ZERO diagnosis and an admission that they still have no idea what caused it or why, I've stopped chasing it. What does it matter? It doesn't change the reality that I can't see, and it doesn't change the fact that I'm still dealing with a host of other crappy symptoms. Like you, I've got to do better at realizing that there is, in all likelihood, not going to be a magic bullet for whatever it is that I actually have....at least not in my lifetime....I'm hopeful that someone may simply figure out the mechanics of it while I'm still around...that would be a huge step in the right direction. I have to do better at dealing with the symptoms and the frustration and anger they evoke. For instance, I'm in Hawaii right now on vacation. Hawaii. And, of course, that comes with its own challenges....the 8.5 hour flight, the time difference and associated jet lag, the heat, the sun, the different foods, etc. I'm having a wonderful time, but I'm constantly on alert trying to deal with my seemingly schizophrenic body. Yesterday, for no apparent reason, I woke up with a crazy-painful case of tendonitis in my right middle finger of all places. Why? Who knows! But it's just the last in a string of inflame-y things...plantar fasciitis, tendonitis in my knees and ankles, blahblahblah. And I'm here with my fiancee who is truly amazing and supportive, but he can't understand what it's like to be me....I'm not saying he doesn't try, I'm saying it's impossible for a monkey to know what it's like to be an aardvark....weird analogy, but you get the point.

Anyway, I'm glad you posted this morning....I needed a boost, and a nice helping of solidarity always does the trick.

Thanks,

Erin

[looneymom]

You know Becia, I can understand where you are coming from because you do get tired of searching for answers. This is stressful, time consuming and fianacially upsetting and tiring journey in itself. Sometimes, you just have to step back and smell the roses. If you are satisfied with your body's level of functioning, then now may be a good time to slow down and not stress over your illness. I do think you are going to get answers eventually. Do you still have test results that you are waiting on? If so, a new treatment plan may be just around the corner. Hang in there and do take time to slow down. There were times that my husband and I did this because we were just so frustrated and disappointed with new doctors. You will know when it's time to start digging again for the underlying cause of your POTS.

[Becia]

No, still no answers, just more appointments with new doctors at the moment (seeing a new cardio since my last one that I really loved passed away in January, and I've struggled with the office since, so my general practice dude hooked me up with one he sends lots of patients too, and it happens to be my moms cardio too, so I know him and he knows of my case... Also seeing a neuro I met in the hospital because mine basically just shrugged me off).

I'm just so tired. I'm exhausted really. I had a bad moment last week and sprained my hip again, just when I thought I was doing decently, I pushed too far, and that was the result. So I'm back a few steps, but trying to pace myself better, and make plans, and accept if I can't do them right now. Finding new ways of doing old things has me lining chairs up all over the kitchen if I cook, so I can stand, walk a few steps to a work area, sit while I chop vegetables, then walk back to the stove, and what not. I have made it a goal to walk down to the home gym in the basement, and have made my own work out regime. It's only 10 sets of three excersises, and may only take me 5minutes to complete sometimes, but knowing I'm walking down the stairs, to the gym, to my routine, back up the stairs, and back to my wheelchair, sometimes crawling, but I'm doing more than I was months ago. People keep talking that they want to get me in physical therapy, but then don't do anything, fine, i will do it myself. This entire situation has been "what can I do, I will try", and some are failures, some are successful...

My original doctor told me I wouldn't see a big change and normalization until about a year after I started. And yeah, everything is crazy, but the only thing I have out do is just maintain, keep the faith, and just give it time. My life will never be the same, I will always have this, I know I haven't found the magic remedy that let's me go for a jog, or hold a job on a regular basis (the main reason I'm taking medical transcription classes, so I can work from home, and break up the time working to let myself rest), but looking at my own research, my meds are working how they need to be... It's me that keeps thinking because I'm symptomatic, I'm a failure. I'm not a failure... Perhaps I just haven't been patient enough with my body in adjusting with this new normal.

I'm wishing I could be cleared to drive. But I'm also seeing why I'm not yet... My body hasn't regulated itself enough to do this just yet. Like work, there are days I feel I could try and work a desk job, so I carry on with school as if that was my work, and do what I do, but the next day, my body tells me "nope, not yet." I have to listen to this.

Patience is so not my virtue.

[blueskies]

Hi Becia,

When I opened the forum posts and pressed on your post and read I thought you couldn't have written it at a better time.

I've just had a vomiting virus I caught from my young granddaughter (thought I was gonna die about a hundred times the first day), which triggered a hateful migraine (migraines are a pots thing for me) that's still lingering, then half way through yesterday realized I had broken out in cold sores and also had sore gums??

I was lying in bed and told my husband that, okay, I accept this now, I know I'm sicker than usual at the moment but the point was that the day I came down with the virus I woke up thinking it was just another bad pots day and it turns out, yet again, that I couldn't tell the difference between pots and the beginnings of a virus (heck, they were both happening). I told him that I now accept that I have pots, that it's not going to stop me from managing it to the best of my ability, but that I accept it and that the people around me (he and my adult chidren) are going to have to accept it too and not question me when I decide I can't do something etc.

Hubby asked did that mean I was going to give up and crawl back and forward to the bathroom like I'd been doing all the first day with the vomiting? I said, hopefully not, but there are days (hours) with pots that I have had to crawl in the past even though they have gone now. But they may come back. And I just have to accept that for now and not continuing feel the disappointment when horrible symptoms return.

I think in acceptance lies peace. And I really need peace. Not this hyper, anxious, feel-like-I've-been-boxed-into-a corner-of-a-boxing-ring and continuing to desperately tell myself that I have to be better than this, and consequently feeingl like I've failed.

So, for me, accept it, manage it the best I can (congrats on doing your basement gym thing, btw plus your answer to the wheelchair question is excellent), try to nourish my body and soul and most important for me so I'll say it again so I hear myself, accept it. I won't stop looking for ways to feel better but I'm done feeling bad mentally about not feeling good physically.

blue

[Becia]

I'm glad what I wrote can help ya'll. sometimes I just need to see it in black and white to go "okay, this is okay."

I'm just gonna try doing things and if I can do them, fine, if I cannot, I will keep trying till I can. I do wish there was something I could do to make the lightheaded ness, the dizzy issue, the tremors, the shortness of breath, the sensitives much better, but... I can't. And so far, no one else has been able to either. So I ll figure out how to deal with them. It still bites that taking a shower feels like shards of glass being thrown against my skin (but from what I understand, that's the midodrine I'm on), but at least I have figured out a way to take a shower safely, with a chair, laying down the moment I get out, not too warm water, and short hair that makes my hands above the head making me pass out not so bad getting the shampoo out.

I've got the right to mourn and grieve for something that was dear to me... It was called my life. POTS took it from me, and now, I have to get to the acceptance step and figure out how to move on.

[IceLizard]

Hello Becia,

Kudos to you and your new life plan and exercise regimen! I know that if you keep exercising, resting, and learning to take proper care of yourself with this condition you will make improvements. FYI it is best to start exercising in the recumbent position (i.e. recumbent bikes, rowing machines, weights, ect.) until you can handle being upright more. Give yourself some time to adjust and improve, then if you are still not satisfied with your level of functionality, try going to doctors again.

I can't believe they didn't find out something useful after all that you went through. That must be so frustrating! Just curious, did they check you for Ehlers Danlos syndrome? I ask because you keep having problems with your hip and all of this dysautonomia stuff is common with EDS patients.

You are intelligent, persistent, and creative. I know you can succeed in reclaiming parts of your old life and discovering new things in life.

[IceLizard]

Did they give you anything for the episodes of high blood pressure and tremors? I have tried several different medications for this problem that do help. Just ask if you want to know.

[Becia]

Finally got results back from the tests last month, and they did confirm POTS, but while one test showed positive for autonomic neuropathy, the other one didn't, and she said that was most likely a no, and that everything I've been dealing with is POTS and being deconditioned because I've been using a wheelchair out of safety because I'm so symptomatic most of the time. I do try to walk and stand a little bit each day, to stretch my legs and such, and had been standing with symptoms, but not passing out, for up to five minutes prior to this test (most of the time I'm lucky if I get a minute, maybe two, but I've been working with different techniques and counter measures to achieve more). I beg to differ a bit on the autonomic neuropathy testing, the one that came up positive was a glaring YES to this doctor who administered the test, but the TST they are saying I didn't complete, so they are making that a negative result (I was told if I could tolerate 30 minutes in the heat, that would be considered completing the test, and I did 31 before I asked to be removed because I was about to throw up and was shaking).

She was the doctor who put in her report that she thought I brought this all on myself, and was considering diagnoses of somatization or conversion disorders... I guess this all debunks this? Or at least I hope it does. Certainly puts my mind at ease when she said the testing suggests POTS. Makes me kinda glad I haven't been barking up the wrong tree since I was diagnosed in July of last year...

As for being tested for EDS, none has ever been suggested. I have been told once you knock a joint out of place, its likely to happen again. This would be the second major sprain on this hip, and I've dislocated it twice (the first sprain it was partially out of place, about two weeks later I kept thinking it doesn't feel right, when I went to do a stretch, it popped REALLY loud and back into place.). It's feeling okay right now, a bit sore since I spent yesterday trying to walk to places in the house instead of pulling myself in my wheelchair, and it isn't used to that kind of action.

Time to pick up the pieces and keep going.

[IceLizard]

Becia,do you have problems with any of your other joints or generalized pain? Dislocations where you have to "pop" the joint back in are common in EDS patients. In fact, multiple dislocations in the same joint is one of the minor criteria for diagnosing EDS. There is something you can do to test to see if you might have EDS.

You can check the hypermobility of your joints on your own using the Beighton score. A high Beighton score plus other criteria (see 2nd link) can indicate you have EDS.

http://hypermobility.org/help-advice/hypermobility-syndromes/beighton-score/

http://media-cache-ec0.pinimg.com/originals/32/cb/22/32cb22e5c8a2c90057e61c8fcc316aa5.jpg

I did not know I had this until I went to see Dr. Blair Grubb for POTS and to my surprise he started pulling on my joints. He suspected EDS based on my history of dysautonomia and joint pain.

[Becia]

I am in line to see Dr. Grubb at some point this year (I haven't pulled my recommendation to see him as of yet, but went with CC since they got me in sooner), and may keep the appointment to see if that might be a possibility.

I do know when I straighten my legs, I'm hyperextended at my knees (it freaked the surgeon out who did my knee surgery last, was told that was a very unnatural position, but for me it is comfy), and my shoulders are very flexible. Used to think this was all because of the yoga I did, but lately when I've done some yoga, I get way too bendy and end up trying hard to not get into those positions, and it's uncomfy.

also just realized you asked about something for my high BP and tremors, and no, they have never prescribed anything for me. They just keep telling me they want it on the high side and to just go with it, its all side effects of medcines that I have to deal with. Well, I tell ya, I'm tired of the headaches, and nausea, and everything else that I deal with on top of just trying to stay conscious.

[looneymom]

POTS is not caused by deconditioning. The doctors at OU have found the receptors and there should be a blood test to check for a POTS diagnosis. MAYO even had an article on this saying that POTS is not always caused by deconditioning. If you were active from the beginning your POTS could not be caused by this. Deconditioning needs to be thrown out the window and so does all the anxiety diagnosis. POTS can cause all these things. This article was post on the forum a long time ago. Just don't remember when.

[Goschi]

Looneymom, I so much agree!! My POTS was definitely not caused by deconditioning, I was in very good shape, before it came up. To be honest, I even doubt if POTS could become worse from deconditioning. There are so many "healthy" people around, who are definitely "deconditioned", as they haven't exercised for years. Some of them get out of breathe, when walking 20 steps. However, they don't have POTS! I am still in a better shape than they are - and I have severe POTS.

[IceLizard]

Based on what you have said, you might consider being checked for EDS, by Dr. Grubb or by another EDS knowledgeable doctor. Migraines and chronic nausea are also common in EDS patients. If you like, you can try going over the the Ehler Danlos National Foundation forums for more information here: http://www.ednf.org/message-boards

I have medicines that lower my heart rate, raise my blood pressure, and medicines that lower my blood pressure and calm my nervous system when I need that instead. I was also prescribed Librium to calm the tremors, and I also have something for migraines and nausea. Taken all together it is a difficult balancing act, but I am grateful that I have the ability to treat symptoms as they arise.

I am sorry your doctors have not given you anything to improve how you feel, they seem dismissive as long as you are conscious. Do you currently have a physician who will listen to you and is interesting in helping you feel better?

[Becia]

My gp is doing he best he can, and I really like how he is with handling me in this situation. I'm hoping the new cardio will be just like my prior one that passed away, because he was amazing with it. We are curious of what the neuro will try to put me on, I don't see him until the 21 st of the month.

And I agree the deconditioning thing that she mentioned was stupid. Just stupid. When I was first diagnosed, I had just quit my job at walmart in the back room where I had walked 9-10 miles a day hauling and counting freight a week prior to the ttt that confirmed the first diagnosis of POTS. I was also training for a 50 mile bike race at the time.... I was far from deconditioned, and I failed that TTT within 30 seconds when my hr went from 70 to 170 like bam, and my bp was nonexistent.

The main change that I had in that time frame was the two ablations for out of control PVCs that were changing my heart rhythm that were very problematic for me. I was lightheaded, dizzy, short of breath prior to all of this. We have come to the conclusion that it was the ablations that really set off my POTS, even though I might have had it for quite some time prior.

I still don't think I'm that deconditioned. I still have been doing yoga through this, trying to walk and stand everyday for a little bit to keep my limbs working and moving... I'm just not breaking the major sweat by biking 20 miles on my bike, or jogging/walking 5k every other day. I have been lifting some weights for my arms, doing sitting leg press with 50 pounds of weight (and that doesn't feel like much, but if didn't want to push myself...my legs are my strongest feature though from the biking), and a type of rowing weight pull for working my core with 30 pounds of weight. I do 10 reps, 1 set of all three every other day, or every two days, to not push too hard, and my heart rate does skyrocket doing them.

My fear is the raising of my heart rate that makes everything else blow up basically, which is why I'm hoping we do some cardiac physical therapy soon, so I can do a bit more cardio. I used to be a cardio queen until this, I hated weight work. Still do, lol...

[Becia]

POTS is not caused by deconditioning. The doctors at OU have found the receptors and there should be a blood test to check for a POTS diagnosis. MAYO even had an article on this saying that POTS is not always caused by deconditioning. If you were active from the beginning your POTS could not be caused by this. Deconditioning needs to be thrown out the window and so does all the anxiety diagnosis. POTS can cause all these things. This article was post on the forum a long time ago. Just don't remember when.

Here here!! I completely agree.

[Becia]

Looneymom, I so much agree!! My POTS was definitely not caused by deconditioning, I was in very good shape, before it came up. To be honest, I even doubt if POTS could become worse from deconditioning. There are so many "healthy" people around, who are definitely "deconditioned", as they haven't exercised for years. Some of them get out of breathe, when walking 20 steps. However, they don't have POTS! I am still in a better shape than they are - and I have severe POTS.

I agree wholeheartedly!

[blueskies]

I was not at all deconditioned when I really started to feel symptoms of pots so strongly they couldn't be ignored - I was, and had been all my life, an exercise enthusiast. Since then I've gone through periods of being 'conditioned' and periods of being deconditioned, all depending on how pots symptoms are. It's the symptoms that seem to impact on my ability to stay fit. Not the fitness that improves my worst symptoms although it does make me a bit stronger. I find that it is often my attempts to stay fit that bring on my worst symptoms. And this can come on weeks or months into a regular exercise regime. Then I have to stop exercising to the point of becoming deconditioned. Then I'm able to start exercising again etc. It's a frigging circle going nowhere.

By the time I got my pots diagnosis I was deconditioned and my pots doc did think I'd be well within the year if I exercised regularly and try other things. I was a little sceptical given how fit I was when it all hit hard. If deconditioning bought on pots then I should have had anti-pots given my original level of fitness. But I started exercising again and did get very fit (mostly swimming 2kms a day) but worst symptoms did not improve. Since then he's seen me go up and down, 'fit' or not, and has re-evaluated the complexities of pots. At my age, 58, I'm pretty sure he's dropped the opinion that I can make myself better from this.

blue

[cleo]

My heart goes out to you, Becia. When I was diagnosed with pots 17 years ago there was only the tilt table test. I don't think the docs knew about the different types of pots then so once you got the pots diagnosis you were pretty much done. I tried the medication florinef but had to be taken off it. As time passed I slowly got better and better. A lot of the time it was 3 steps forward 2 steps backward. I never got back to my pre-pots self but I regained a lot of the quality in my life. I have my fingers crossed for you that things will get much better for you too.

[Becia]

I have good days and bad days. Some days, it feels like I could hold a job again, or drive... Then as the day progresses and my feet have been in the ground, or I get all jumpy and start trying to walk a bit around the house, I meet my friend the floor pretty harshly, and it's a reminder of "nope, gotta find a different way of doing this." Today, I went to a track meet with some friends to support their daughter, and while I had a blast, passing out in the bathroom of Wendy's without my wheelchair wasn't my idea of fun, lol. I decided to try and walk it, it didn't seem far, but it was too much for me, and bam, there I was, kissing tile. They got my chair to me, and I spent the rest if the time out trying to get back to my normal, which wasn't easy given the commotion around me, the pain I was already in, and the fact that each time a new trigger came at me (like the pop gun to signal go, or talking to the lady next to me) I got more and more symptomatic. I did pass out just talking tonight, but I don't think she noticed, and I was alert enough to see that my friends daughter won the 300 meter hurdles by a landslide. That made me so excited, I cheered, and then promptly passed out again, lol.

But I just wanted to try and do this. I get stupid sometimes I guess, and try things I haven't been able to handle to see if any things changed again. Walking from the far to the bathroom in public, where I'm always terrified of passing out without my friends nearby, was a major feat for me. May be one I can't replicate again anytime soon, and I know I will spend tomorrow right here at the house, with my feet up, exhausted from everything because I'm so overloaded, but hey, I can write in my journal that today, I did that.

I got charged with writing down three things that were positive that happened everyday in my journal. Some days it may not seem like a great accomplishment, or I may have a great one, and the next three days are rough to come up with them, but I somehow find three each day. Those are good motivators. So what if they are "today I managed to walk 15 steps before needing to sit down." Some days I can't even do that, lol.

Wow, can you tell I'm tired, lol? I feel like I'm rambling now.

[IceLizard]

Sometimes it's really hard to tell when you are going to pass out and when you can push through. I passed out without much warning in my pharmacy yesterday and gave everyone a scare. I was able to convince everyone I did not need to go to the hospital (once I could speak), then my husband brought me home where I watched my fish until I fell asleep. Get some good rest when you can!

[cleo]

I'm very fortunate that I've never passed out from pots although I've come close. When I first developed pots sometimes everything would go black. Your story about going to your friends daughters trackmeet reminded me of when my kids were young and I would go to their soccer games. I would be so lightheaded and drinking and drinking to combat it and inevidentally have to use the bathroom badly :-) There was never a bathroom at the field and I was always too lightheaded to drive and did'nt want to take my husband away from their game. Oh the agony:-) I think you,re going to the track meet was a good thing. Its great to get out although it would have been better if you weren't passing out and good to keep fighting.

[spinner]

The "miracle" rarely happens.

But improvement/management DOES. We have to do constant research--why we're all here.

Solutions are individualized. You will find others just like you and find things that helped just like they did.

[cleo]

Spinner, I didn't mean to infer that a miracle happened for me or that we should stop looking for answers. I'm very grateful for the improvement I've made but still do live a compromised life.

[Becia]

Lol, while I was at the meet, I drank 48 ounces of fluids (lemonade with very little ice to get the full amount I paid for at Wendy's, and another 24 of water I always keep with me along with a Gatorade), I did have to find a bathroom, and it was way down on the end of the track from me, and off the handicapped ramp. After I finally pried myself away from talkative lady, I managed to find it, use it, and was getting back in my chair when the pop gun shot off for the next heat... It sounded like it was right in the room with me. I had to sit in the stall for a few minutes to make sure the adrenaline surge didn't send me into a seizure, and I'm furiously trying to text my friend to please come help, with no avail. She never took her phone out of her purse, and the other was coaching the kids down at the track.

And getting back up the ramp wasn't gonna happen, so I found a spot out of the really cold wind, and would you know, talkative lady found me there, and kept talking. My friends finally rescued me while I was unconscious and away we went.

It indeed was a trip. I've been in and out of it all day today, trying to prop my feet up as much as I can, and bake a bit too. I've made dinner, some lemon lime electrolyte water, lemon bars and honey cinnamon butter throughout the day while napping and laying on the floor. Not a great feeling day, but I had a blast last night so it was kinda worth it.