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Overwhelmed With My Lack Of Progress!! Please Help??


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Ok, so first of all, I feel very lucky to have found this forum and spend a lot of time reading through old posts and I am grateful for all the knowledge my little foggy brain is trying to absorb lol

I have few questions and Ill try to be as clear as possible but I am having a rough time right now even thinking clearly, so bare with me.

I am on florinef, sodium chloride,klor con, sea salt and gatorade and feel like I am still urinating more out than am retaining. My legs never change color unless in heat or I have walked a long ways and recover rather quickly when I am off of them or cool. I am also on zoloft that seems to do absolutely nothing but make me hungry at 4 am. I went from 50 to 100 with no effect which is odd since I am very sensitive to meds.

My doc is treating me as if I am hypovulemic, with out any evidence of such. I was tested as child but dont remember results till my records come in and I am tired of waiting. I agree its a good place to start but I have NO improvment. However, I did recieve massive amounts of fluids during my stay in the hospital that completely corrected the heartrate but not the bp in anyway.

Also I wear 30/40 compression extra firm Jobst stockings to my waist with not much effect if any on my BP. WHich stays between 70/40 to 94/60ish. There has only been one time they brought me up to non symptomatic range.

I have been basically bedridden for 3 months and not able to much more than totter around the house for a few minutes at time. My standing hr is 180s+when I take a shower, with all the gear in place and salted up its about 140. Resting its normal around 80 to 90 on a good day and on a bad its 130ish. I look like a ghost all time I am sooo pale.

I have chest pains without activity, just laying on the couch and with movement irractic heartbeats.

I have read how important exercise is and I totally agree but I am becoming deconditioned now I believe, I want to push myself to combat the muscle weakness and lathargy but I am not sure how when I just roll over in bed and my hr is 120

So overall I am 3 months in to treatments that have no benefit at all!! <sighhh>

So here are my long awaited questions lol

first topic) Can I be hypovlumic if florinef and salt arn't helping and I am not showing signs of pooling, or are those two seperate issues altogether? Or do you think I possibly need to talk to my doc about increasing my dose? Has .1 ever helped anyone with hypo symptoms?

second topic) Does anybody get a noticable rise in bp, or decrease in heartrate from compression stockings or florineff? Has anyone tried higher compression stockings than 30/40?

third topic) How the heck do you exercise like this? is it safe with a structurally sound heart to push an already increased hr? Do you just push through it somehow and it get better? My doc says dont worry about exercising yet but I am losing ground fast a fear a longer recovery like this.

(dont worry Im almost done)

4) can anyone recommend any tips to stear my doctor, whom is admittingly treating his first POTS patient ever, any specific tests (other than a TTT)?

Thank you sooooo much if you made it through all that lol I truly look forward to reading what you may be able to enlighten me with through your experiences. {{{HUGS}}}

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1. There are tests that can be done to confirm hypovolemia - look up the topic on the forum, I posted the details about that not too long ago - some "clues" to hypovolemia might be a low sodium level in the 24 h urine test and a narrow pulse pressure (particularly when standing) - not 100% sure about the pulse pressure. Everyone responds differently to florinef - for some the tiniest amount is enough, while others don't see benefits unless taking a higher dose.

2. Yes to BP increase from the florinef - I even get spikes in BP that are uncomfortably high. That's why I decreased my florinef intake from .2 to .1 mg a day. When it comes to compression garments my dr contradicted himself so I am not sure if they might help me - once he said I should go for them, then he stated there is no scientific evidence for them.... I haven't noticed any blood pooling in my legs though so I haven't pursued the compression stockings avenue...

3. It is hard as **** to exercise when your HR is elevated to begin with, but if your dr gave you the green light... Again in one of my older posts I've provided a link for exercises for legs that can be done while in bed ...they might help.

4. Not sure what to suggest here. Did you only have a TTT? (even the TTT protocol seems to be slightly different in different facilities). I can tell you what tests I've had - stress test - with a respiratory component, echocardiogram, several Holter and 2 week event monitors, blood work for thyroid, blood and urine tests for a pheochromocytoma (because of my bp spikes), ct scan of lungs, abdomen, pelvis, head, head MRI, ultrasound of abdomen and pelvis, cortrosyn stimulation test (blood work checking for cortisol level/response - to rule out adrenal insufficiency), blood plasma free metanephrines (testing for pheochromocytoma and hyper POTS), 24 h urine sodium, potassium and catecholamines...and I'm sure I skipped some. Everything checked out fine for me so far. The only test I "failed" was the first TTT - I had 2 - yay me. The 2nd time around the test was negative for POTS but I continue my current course of treatment - propranolol + florinef + mestinon + clonazepam + potassium supplements. I also used to salt load and drink 1 gallon of water a day, but not anymore and I haven't really seen a change in my situation.

As a side note - I tried an SSRI - not zoloft but celexa and had horrible reactions to it- couldn't sleep, made me nervous, irritable, and I had bp spikes around the clock. Back then I read that in rare instances people can experience low bp while on SSRI's. Something to possibly look into?! Also, maybe look for a POTS specialist that has more experience in treating someone with these types of problems.

I hope this helps.

Alex

Edited by corina
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Here's how I broke my cycle: I had high HR and low BP (80/40). Once I rec'd full cardiac work up which to me meant my heart was healthy but my system was whacking out I felt safe/comfortable starting some easy exercise. I started in sitting with no weights, then light weights. I always did heel raises thinking they were pushing blood back up towards my rapidly beating heart. I always used proper breathing techniques. I rested and would breath between ex's. I did basic activities: elbow curls, shoulder raises, tricep presses, knee extensions. Once I could stand a little I would do mini squats - only 8 reps then rest. I would do a light set in the late morning and sometimes again in the early evenings. Evenings I used to feel a little better. My heart rate was unhappy but my muscles thanked me and emotionally I felt like I had a plan. I didn't train on the terrible days. I kept those days for light walks around the house. But I didn't want my body to "forget how to function" so I always tried to at least shower and get to the kitchen for a little bit on the bad days. Tried to sit at the kitchen table and hear noise, smell smells and exercise my senses on those bad days. Every day was a fresh start but trust me it always just seemed like I was waking up to the same nightmare....eventually I started to have some time in the day that I was functional. Breaking the cycle was the best thing I did for myself. I didn't tolerate florinef. I was a hydrocortisone user and finally tried some Midrodine which was a savior for me. I only needed it for a few weeks as my BP stabilized on it's own with the drug as a kick start and me resuming daily activities. This is my experience and it seemed to work for me. My heart rate was already tachy doing nothing; it wasn't getting better and it didn't seem to be killing me so I went for it (with medical clearance). My guess is some seated, no weighted Active Motion is not going to make things worse and it's a start. Good Luck.

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My son was bedridden for 4 to 5 months. Our insurance allowed a physical therpist to come to our home 3 times a week. This was a life saver! When you first start to exercise do it without any weights. Your body will be adjusting and you may only be able to exercise every other day. My son and I learned it was much better to be slow and steady. When he first started to exercise, his blood pressure would fall out and this scared us all. So we monitored his blood pressure and sent his readings to the cardiologist. Our PT would call and talk to his nurse and let her know what was going on and one time our PT even got to talk to the cardiologist. His medications were raised up, which indeed helped. My son is currently able to walk 10 to 20 minutes on a good day but it has been a long haul. Hope this helps and be sure to listen to your body.

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Alex,

Maybe I need to look into the effects of the ssri but its the only way I can achieve having an appetite. I will talk to the doc about it, maybe a simple dosage change would help.

As far as testing goes, I was originally diagnosed with auto dysf. as a very young child and was a participant in a trial and believe I am in a textbook somewhere. I was tested rigoursly for weeks. Multiple TTT's, sweat tests, treadmills, heat and cold exposures, hypovolemic studys, however I can not remember much more than hating it and the 16 gauge needles that poked me with every hour. My mother has memory issues and cant remmeber anything about results other than I was medicated and outgrew the severity of my symptoms by my teenage years, until 7 months ago. I currently have had cautionary tests, ie: nucleaur stress test, echo, iodine cats, chest x rays, multiple blood tests and a 24 hour urine to check for a pheo. My primary took over from there and is eager to help but is inexperienced but he is trying which is more than I can say for other docs I have seen.Other than that they said You have pots no other tests needed. I have read a alot on here about other testing and want to pursue a more accurate understanding of what is happening but I am grossly undereducated in the medical department lol Thank you for your feedback I truly appreciate the time you took writing me back =)

Relax,

thank you so much for your response, it is so encouraging to know I am not the only one struggling with these issues. I am going to talk to the doc about starting some basic exercise like you have done to see if I can get a little stronger. The weakness I feel is overwhelming and discouraging and can not be good for working towards a recovery. I also may talk to him about midodrine, I tryed it in the hospital but they didnt send me home on it. Do you take midodrine everyday or just as needed?

Dizzy,

WHen all this started I very feebly tried a holistic approach. However I have huge malabsorbtion issues and have trouble digesting any raw foods, even cooked veggies.fruits & red meats, So I thought Id try starting with a brat diet and add some foods in from there, again didnt work. I will definatly research more on Wahls and paleo, maybe there is a trigger food I am ingesting and throwing me off. I am very suspicous of mast cell issues. I have horrific allergic symptoms, not spcifically too many foods, but to EVERYTHING else, although I dont have flushing.Iam on double dose of antihistimines and if I am an hour late taking one I immediatly have an asthma attack, I also get hives from the cold and am sensitive to smells and meds. Thanks for the tips I will look into more threads with holistic approaches and educate myself.

THANK U again, your feedback gives me much needed hope and encouragement. {{hugs}}

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Looneymom,

SO sorry your son has to deal with these issues, I ws very sick when I was young too but I think I was a lot more resiliant then lol I thought of using wieghts, and I agree I am glad I didnt start that way. I think starting slow and steady is the way I am gonna try to go. And every other day too at first so I dont overwhelm myself with fatigue. Thanks for sharing and best wishes to you and your son, he is lucky to have such a good advocate for him.

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My neurologist/POTS specialist said that you have to start out really slow. she recommend 5 min a day 3 days a week of a sitting stationary bicycle and only if a patient is feeling up to it. In some cases it is appropriate to "push through" but in others it will just make it worse and tire you out more. As was said above, listen to your body. A simple 5 min walk could be okay one day and then way too much the next.

I know you are worried about deconditioning (i am as well) but make sure all your meds are under control and stabilizing your bp and heart rate before worrying too much about the deconditioning. trying to recondition is a hard road and a lot of work, but our systems are so out of whack that trying to exercise like we would when we are healthy isn't going to be the same as when we're POTSy. Have you tried swimming? not like laps, but just kind of bopping around a pool. that counts as exercise even if its very slow and leisurely and for some reason being in water makes POTS patients bodies feel better.

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k&ajsmom,

do you think it may be helpful to you or your dr to get a hold of your old medical records?! Sounds like you've been tested quite extensively. It's normal that certain things have changed since then, but still it might be a starting point.

I've found the link to the exercises I've mentioned in my previous post, here it is. They are not too strenuous and have helped me quite a bit

www.sld.cu/galerias/pdf/sitios/rehabilitacion/leg-str.pdf

I'm also trying to educate myself (no medical background here either) regarding POTS in general, testing, or other avenues to pursue. This website has proven to be a real gold mine for me and I've learned a lot since I joined.

Best of luck and keep in touch.

Alex

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pumpkin,

I think thats where my doctor is comeing from referring to not exercise until things are stable, but its been so long since I even took a walk outside my house I am getting worried that its making the tachy and bp worse to be bedridden, I think I am going to look into a recombent bike and just take it really REALLY slow and pace myself. I have alot of fear over the heartrate increasing too much although my doc says I "should" be fine with 200 bpm. I dont feel fine when its that high and doesnt take much to get there. But Im gonna make 5 minutes at a time my goal whenever I have the motivation to do it even if its walking around my yard for a few laps. My neighbors will think im crazy out there in my sweatpants and slippers lol I would love to bop around in a pool it sounds heavenly actually but am scared to venture out of my house at this point maybe Ill make that my reward in a month as motivation!! =))

Alex,

My doctor has requested my records and personally I want my own set and its justing taking so long to get them. They have been in storage for 25 years lol I believe I was on florinef and sodium as a child but I am guessing off of foggy memories. The main thing I dont recall having as a child that I have now is the tachycardia and pvcs but again at 6 to 10 years old I may not have been aware that was occurring. Soo I def. agree its a good starting point if I ever I get there. Thanks for the link I am going to check it now and make my goal tomorrow (in the fashion of a true procrastinator lol) start devising a plan to get myself off this couch that I have grow to despise.. thanks again and take care everyone!!

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Relax,

thank you so much for your response, it is so encouraging to know I am not the only one struggling with these issues. I am going to talk to the doc about starting some basic exercise like you have done to see if I can get a little stronger. The weakness I feel is overwhelming and discouraging and can not be good for working towards a recovery. I also may talk to him about midodrine, I tryed it in the hospital but they didnt send me home on it. Do you take midodrine everyday or just as needed?

I took 2.5mg twice a day. Only needed it for a few months then my BP seemed to adjust
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relax,

Thats great you are not needing it anymore! I am going to talk to my doctor about this option, maybe it can be a tool to get me going, till I can introduce enough significant exercise into my regimen and get my diet straightened out. Thanks again and take care.

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After my son was strong enough to sit up, the next step for him was to ride a stationary bike. At MAYO, they told us to start with 3 minutes and do this 3 to 4 times a week. My son had to start with a minute and it was a slow ride with no resistance on. Every week, we added a minute to his ride. MAYO wanted him to be able to ride up to 60 minutes 3 to 4 times a week. To my son, this was boring, so we have strayed and introduced other forms of exercise which have helped condition other muscles. However, his biggest weakness seems to be with trunk, chest, and shoulder muscles, so we have started focusing more on this area. Our physical therapist has also caught on and is trying to figure out the best exercises to help with this area. It has been a challenge because the first time our physical therapist did these exercises with him, he was so wore out that he feel asleep on the way home after the session. These exercises were also done without weights. So the next session, she cut it way down and he did much better afterwards. My 12 year old son is willing to do anthing to get rid of POTS, so it has been a challenge to get him to listen and monitor his body. So no matter what form of exercise you try, don't over do it. I think variety is a key and helps keep a person more motivated to exercise.

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Florinef did not start working for me until i took .2 mg. Compression stockings also just seem to make me level out--not create a dramatic rise in blood pressure. Have you talked to your doctor about the possibility of adding an ssri or beta blocker into the mix? The down side is more medication dependence, the upside may be a possibility to reduce your symptoms. I hope you start to feel better soon, i have had those heart rates though mine seemed to top out at 160. If you and your doc do decide to use a beta blocker, be sure to research the different types to find out which one may be the best fit for you. There are tons of different types out there. A non selective beta blocker might be worth you tiime to do some research into.

One more thing about exercise: i think when we think of exercise we think of going for a jog or hitting the gym. I can tell you when i started exercising that was not possible. For me it was getting up and walking to the bathroom at one point, and before that simply flexing my legs while laying down (that was all i could do). Sometimes it was standing for 30 seconds and sitting back down. I believe that exercise with pots is an individualized thing: where some people maybe can only stand and sit back down, others are walking around the house and some are jogging--in my opinion it all depends on the person and where they are. I have also learned that overdoing it doesn't help. If i exercise too rigorously its one step forward and two steps back with fatigue etc. symptoms.

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lemons,

I am starting to think that upping my florinef may be the next step, I dont feel .1 has done anything besides causing headaches at first, they have gone away now. I am on zoloft at 100mgs now, with no results but getting my appeite back and reducing nausea, which is great but it hasnt help my increase motility, which is aweful =(

My doctor is wary of BBs with me because my bp is just soooo low allll the time. He thinks it would cause more harm at this point, I think he wants to use a BB as a last resort. I am kinda with him on it, though Id like to have one I am not sure I can handle it.

My one fear with upping florinef is becoming dependent on it. I know those with adrenal issues are dependent on it because there glands dont work properly but in my case would that happen IF my adrenals are fine? steroids of any kind make me nervous.

Looneymom,

I def agree variety is the spice of life with anything I do. I need to find something very practical to do that I enjoy (atleast a little) so I dont fall off track. I am glad I got everyones feed back to start slow. I think I was putting too much pressure on myself to get where I was pre-pots too quickly ( atleast in my mind) and thats why Im getting overwhelmed with the thought of exercise. Just do what I can when I can and keep motivated by all costs. Thank u !!

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