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Avatar universal

Deconditioning syndrome, pots and many more

Hi everyone, i'm not new here but had to do a new profile since I lost my old one...

I have a diagnostic of severe anxiety, mostly health anxiety with many many and many chronic symptoms like extreme headache all the time, low or high blood pressure (unstable blood pressure), tachycardia all the time (even if my propranolol dose was increase recently, my intestine stop working so I have constipation and no laxative work on me, i'm underweight (had a gastric by-pass years ago to loose weight and now the Surgeon want to reverse it cause i'm too thin and it's not healthy), I also deal with what I call adrenaline rush all the time and feel i'm on the edge and will have a heart attack most of the time, i'm 100% homebound, it's impossible to go out anymore and even at home i'm terrified and feel very bad...also have chronic chest pain on the left side with numbness of my left arm and pins and needles effect on my left arm as well most of the time. I do have panic attacks mostly at night, i'm awake by them every night, I have 0 concentration, can't enjoy anything cause i'm always thinking about my symptoms and all the pain I feel inside me...

Right now i'm on 30 mg of propranolol (3 x 10 mg in 3 doses day), i'm on 7 mg of Clonazepam for the anxiety and lower slowly my dose since it's not doing anything for my anxiety anyway, i'm med sensitive so can't start an antidepressant med cause all of them make my heart rate extremely high and my anxiety is 1 000 000 worse on them even at 1/10th the normal dose after many months...

My cardiologist diagnostic me with POTS recently and didnt want to RX some florinex to control my blood pressure who tend to increase and decrease in an irregular patern, sometime my blood pressure fall very low to 100/55 who is A LOT too low for me and i'm dizzy and almost past out with a pulse rate of about 130 sit without moving and being sit for a long time and sometimes my blood pressure is high and reach 160/100 with a slow pulse rate of 50... The propranolol, who was working to reduce my tachycardia before, is now not doing anything to control it, if I increase my dose to more than 30 mg a day my blood pressure will get so low that I will pass out and I pass out at least 3 times in the last year.

The cardiologist also diagnostic me with severe deconditioning syndrome, that's mean that I can't even take a shower without feeling exhausted and having an increase of blood pressure and also extremely high heart rate from a minimal physical activity.

Overall, he recommend that I seek help from a personal trainer who will help me to be in a better shape with appropriate physical exercises for me, the goal is to gain some strenght and make my heart less weak... the only one problem is that i'm on a waiting list to see that personal trainer, it's cover by the public health system here and the waiting list is very long... For now I can't exercise at all, i'm sure going out and take a small walk like 5 minutes daily will help me BUT my anxiety is so strong that I can't even think about going out of the house...

My questions is about mainly the deconditioning symptoms, pots and tachycardia. Is it normal to have an over exaggerated heart rate with minimal physical activity like climbing stairs or taking a shower, i'm talking of heart rate of 140 and more ??? Is it normal to have an unstable blood pressure going from a low blood pressure to a high one without moving? Is it normal to always feel my heart beat very strong in my chest, hear my heart beat hard when i'm in my bed trying to sleep? Is it normal that my body move all the time with each heart beat? Even when my blood pressure is low it's seem that my heart beat is very strong... Is it normal to have chest pain all the time even at rest with left arm numbness? It's worse for the chest pain and left arm numbness when I get up in the morning or when I absolutely need to get out of the house for a Doc appointment? I have that pain each day... all my physical symptoms are chronic even the headache, the muscles twitching, the muscles pain, the back pain, the nech and shoulder pain, the burning eyes pain, the very dry skin or rash on my hands and other parts of my body...

I need some advises please...Thanks, I know it's a long post with a lot of questions, but I feel desesperate right now and feel like I will die all the time.

PS: I had almost all the heart tests done on me... (several EKG, X-ray of lungs, persantin mibi nuclear test, stress test with echocardiography, blood tests... was suppose to have another treadmill test but with my bad physical condition the Cardiologist had to stop the test while I was on the treadmill cause my heart rate was too fast and I was dizzy and it was only after 30 seconds so I was only at the stage 1 of the test!!! ). Also since i'm underweight and my intestine hurt and dont work anymore, I have some enteral feeding to eat each day, the product is call Peptamen... not very good but help to keep my weight and stop loosing weight...
9 Responses
1807132 tn?1318747197
First off I am so sorry to hear about all your health troubles.  It must be an absolute nightmare for you to deal with.  I will caution here that I am not a doctor.  This is the patient area of the website.  If you would like some professional advice from a doctor you may want to post your question to the expert area of the website.  That said, there are a few things that stand out to me.  You state you had some blood tests done.  Are you low in your numbers in your electrolytes, like magnesium potassium or vitamin D?  It seems to me that the fact you are loosing so much weight may indicate your body is not getting the proper nutrition it needs to sustain your body.  I would discuss with your doctor the idea of adding a multivitamin supplement and any other supplements they may deem appropriate to compensate for your extreme weight loss.  I also question if you are hydrated enough as well.  I know when we don't feel well we tend to eat and drink less.  Though the body can sustain life quite adequately on little food it does need a lot more water in return.  So if you aren't please try to drink as much as you can to see if that helps your symptoms improve.  I will say the 140 heart rate upon climbing stairs or taking a shower is not way out of line in my opinion.  If your bp is low at the time which a hot shower can contribute to, your heart rate will increase to compensate but if you try and stay as hydrated and nourished as possible it will help alleviate those symptoms a bit.  Taking the vitamins and drinking more water may not cure you but hopefully it can get you to a point you can at least function to get more exercise as well get you going so that you can consider seeing a therapist as well to deal with your anxiety.  Anxiety in general may be contributing to the problem as well.  All of it causing a ripple effect leading to your heart troubles.  Work on these outside stressors and your heart may calm down a lot.  I do hope that you can find some relief soon and again consider posting in the expert area of the website for more professional advice.  Please do stay strong and keep us posted on how you are.  Take care.
995271 tn?1463927859
I've always been of the opinion that some panic disorders are a form of Dysautonomia.  Have you ever heard of that term and what it is?  Did this all start when you had the gastric bypass?  I'm curios because if you did, I'm wondering if some of the nerves associated with the ANS were cut.  Another issue is making sure you get enough nutrients, are you taking supplements to make up for the decrease in absorption?

I didn't address some of your specific concerns because I'm looking at this issue holistically.    One could address those concerns as "yes they are normal ranges" and explain to you why it happens.  But I don't think that's going to ease your mind.    I think you should tackle the anxiety/panic issues.
Avatar universal
Thanks for your answer to both of you ;-)

Will try to answer to your questions one by one...and also answer to the other person who replay to my message…it will be a long answer in 2 parts…

" You state you had some blood tests done.  Are you low in your numbers in your electrolytes, like magnesium potassium or vitamin D?  It seems to me that the fact you are loosing so much weight may indicate your body is not getting the proper nutrition it needs to sustain your body. ""

First I forget to mention that my Cardiologist said that it’s POTS and dysautonomia (autonomic dysfunction), he said that my sympathetic nervous system work too much and that my parasympathetic nervous system, the one who promote relaxation, don’t work well. We try to get it under control but like I was saying, the Florinef increase too much my blood pressure, we try some antidepressants as well since they are good to balance the nervous system and I can’t take any kind of antidepressant anymore I’m having too many side-effects even at 1/10 the regular dose, my body seem to react strongly to meds now, and most of my side-effects are heart related and also panic attacks…

No, the heart symptoms and anxiety don’t start after I had the gastric by-pass surgery… I had anxiety before, social phobia with once in a while a panic attack but it was under control for several years…

I had the gastric by-pass surgery in 2001, was ok until 2007 when I start having problems of panic attacks daily and internal hemorrhoids bleeding linked to the 8 to 10 liquid stools I had each day from the fat malabsorption.
I don’t know if they cut some important nerves when they do that surgery, but I had 4 abdominal surgeries after the gastric by-pass surgery, so my abdomen was open on 30 cm long 5 times since 2001… and to be honest I do know that each time I had a surgery my anxiety level increase… and I’m prone to feel more the pain and can’t tolerate at all the morphine kind of meds…who don’t help to manage the pain…

Yes I have blood tests every 3 months because of the gastric by-pass surgery. The team of Docs who do those gastric by-pass surgery follow strictly each patients for all their life…it's a complete blood tests including all the minerals, vitamins, thyroid, cholesterol and many more...

All my electrolytes are perfect in the middle range, the magnesium/potassium ration is perfect, sodium is also ok, phosphor is also ok, calcium level is normal but just on the lower limit, iron, hemoglobin level, B12, folic acid are all normal high level... Vitamin D is normal but lower limit... Since the kind of gastric by-pass I had to lose weight is not the one they do in the USA, mine work with the malabsorption of the foods, they by-pass 2/3 of the intestine so most of the fat I eat is not absorb (fat soluble vitamins are not absorb and some meds also), so that's why I have to take 3 daily multivitamins a day ( Centrum strong), also have to take 50 000 units x 2 of vitamins D a day (seem a lot but for me it's not a toxic level since my vitamin D level in the blood is borderline), I take 30 000 units of vitamin A as well, 900 mg of iron, 1500 mg of calcium. I drop the calcium and iron since 6 months because they both give very hard stools who tend to be impacted. I'm lucky enough since my iron stay in the middle range even without taking it...
Avatar universal
" It seems to me that the fact you are loosing so much weight may indicate your body is not getting the proper nutrition it needs to sustain your body.  I would discuss with your doctor the idea of adding a multivitamin supplement and any other supplements they may deem appropriate to compensate for your extreme weight loss."

Like I was saying, I take A LOT of vitamins a day... and my blood tests are perfect... only low HDL cholesterol since I don't absorb fat... We try high dose of omega 3 for 1 year to increase my HDL cholesterol but nothing to do... my bad cholesterol is also low and my triglyceride level are low as well... I also drink a lot of water, I drink at least 6 bottles of 500 ml a day, so more than 2,5 liters of water a day, I drink also herbal tea... I dont drink soda or coffee or tea, I can't tolerate the caffeine at all... I'm craving for sugar all the time and do eat a lot of candies each day... I never had problem with sugar before but since 3 months when I eat candies, 1 h later I feel shaky, my heart is pounding and I feel a big adrenaline rush... it's not related to the blood sugar level since my mom is diabetic and when it happen I take some blood glucose tests on her machine and my blood sugar is not low or high, just in the middle range... so it's not hypoglycemia like some peoples can think... I know I should stop eating sugar but it's for me like a big addiction, I have a love and hate relationship with sugar since 3 months...

I start having panic disorder and social phobia when I was young, it was under control with meds until 2007 when it return with full vengeance... at first I was put on an AD call Paxil who do the job well, I was already on 8 mg of Clonazepam (benzo med) for the social phobia since 2005 but it stop working very fast and had to increase and increase the dose to have the same benefit effects but it's not working anymore... of course I try often to stop it by reducing slowly the dose but i'm highly addicted both physically and mentally and it's impossible to stop that benzo med and now with all those crazy physical symptoms it's even worse... Anyway, when panic hit me again in 2007 I start having bleeding internal hemorrhoids. I had so many of them that I was loosing too much blood and I had severe anemia with very low hemoglobin level and had to be hospitalised several weeks and receive blood transfusions and then after the hospital when I return home I had weekly IV iron treatments. The Surgeon for the hemorrhoids didnt want to perform an hemorrhoidectomy on me back then cause I had from 8 to 10 liquid stools daily and he had fears about fecal incontinence after the surgery. In the meantime, my anxiety get worse, the Paxil who work for some months stop working and then my Doc sent me see a PDoc. With the PDoc I try so many meds that I start having heart problems (mainly antidepressants and a lot of them are old like the Parnate and the Nardil and lead to hypertensive crisis and old and new antipsychotics), of course the PDoc was saying that the heart problems was all in my head and diagnostic me with somatisation disorder, who wasn’t true at all since my heart symptoms are real and well documented by my cardiologist!!! A cardiologist that I start seeing in 2011...so after the PDoc…

Anyway, I finally had the haemorrhoidectomy surgery at the end of 2009. The surgery turn out to be very painful, so painful that my anxiety get even worse, I start pass out while I had a bowel movement cause of the pain, I start having fears about eating normally and was worried about how I will be able to have a bowel movement and how it will end if I eat that food... I start also having fears about my heart after so many psych meds trails who fails and almost kill me, was and still take my blood pressure 20 times a day at home, start taking my pulse rate all the time...in fact now I don’t have to take my pulse rate, I can feel it in my chest all the time and count it!!!

in 2010, I start passing out in the shower for no reason, and no I never take a hot shower, I learn my lesson, always warm water but not too hot cause I know it can cause a drop of blood pressure...) and then one day I had a very bad panic attack while I was driving my car alone and I pass out and had a car crash... I stop driving since it happen, after I pass out in the car as a passenger I go somewhere with my mom and she took the highway and I had a major panic attack again and I pass out, my heart was beating so hard that I pass out... since then I can't be in a car and go on the highway even if I don’t drive...

I start having agoraphobia in the middle of 2010 when I discover that I had less symptoms when I was at home... with time the symptoms start increasing even if I was at home all the time and start having fears about living the house or be alone at home... and since 2011 i'm homebound, only go out for Doc or Psychologist appointment and each time it's very hard, have insomnia for 1 week before the appointment and feel very bad... when i'm back home i'm so tired that it can take 4 to 6 days before I recover and i'm almost bedbound...

In october 2011, even if I was tolding my PDoc that I had extreme intestinal pain all the time and even if he saw me loosing weight, went from 210 pounds to 155 pounds in less than 6 months without stoping eating, I was eating normally... he was saying that it was all in my head again, diagnostic me with somatisation disorder, saying that I had no personality and that now all the symptoms had took over my personnality.... Anyway in October 2011 I had 2 intestinal obstructions!!! So it was not in my head, the pain was real... I had 2 major surgeries to repair my intestine, I had more than 6 liters of liquid in a small pouch near the bile duct who was about to explode, 6 hours later if my mom did not drive me to the ER I will be dead right now...

Anyway I stay 1 month at the hospital, had to be feed with enteral feeding alimentation by a tube who was connected directly into my small intestine...I return home after 1 month and had the tube to feed me with a machine and had to be plug to the machine 12 hours a day for the enteral feeding...
Avatar universal
After those surgery I stop seeing the PDoc, I think seeing him at first place make my anxiety worse and make me also prone to have meds fears, and that's why I can't even return on an simple antidepressant like the Paxil to stop at least the panic disorder and help me to cope with the anxiety...
I start waking up in the middle of the night with a heart rate of 180, difficulty to breath, chest pain and more most of the night, pass out for no reason everywhere, having chest pain all the time at rest and even worse when I was doing a physical activity, start being dizzy, start having that crazy numbness of the left arm with pins and needles effect, same for the left leg... Overtime it got only worse and worse and i'm dealing with more cardiovascular symptoms every day, I seem to get new symptoms every week as well.

I start seeing a Cardiologist in the beginning of 2011, had a stress test with an echocardiography done, wear a holter monitor for 2 days in a row, had a events monitor for 1 month who show nothing wrong with my heart as well, had a nuclear test call a persantin mibi test in 2012 cause of the chest pain, my Cardiologist wanted to see how my heart work when i'm active physically (I wasn’t able to do another stress test on the treadmill)... so far my Cardiologist didn’t find anything wrong with my heart with the exception of a low ejection fraction of 47%, tachycardia, POTS and dysautonomia... but he said that it's linked to the fact that i'm in a deconditioning physical state. I can't exercise at all, I don’t exercise since 2009… i'm so weak physically that even just taking a shower make me tired and I need to nap... i'm also out of breath all the time and like I was saying, minimal physical activity lead to abnormal high heart rate. The high heart rate is worse in the evening, at night and in the morning, in the afternoon it's seem to be the only time when my heart run into the 80 range...but as soon as I get up my heart rate jump to the 120 and more... walking lead to heart rate of 140 and more... At night I can’t sleep cause of the heart who pound very hard in my chest, I can feel my bed moving cause of it… and my intestine start hurting again since I’m have constipation…so overall I’m very tired and exhausted…who can lead to worse anxiety for sure. The Cardiologist said it's POTS since my heart rate from a sitting position to a standing one is increase by more than 30 heart beats... but again no test to confirm that...no tilt table in the city where I live and I can't travel... my anxiety is so strong that I can't go out of the house...

He only told me to drink more salty drink and start doing exercises to make my heart less weak with a personal trainer... i'm on a waiting list to see that personal trainer...he will do a special training program especially for me and gradually increase the intensity, apparently exercise is the best med for POTS and dysautonomia...make the heart rate lower at rest, give strength to the heart, reducing the symptoms... but it can take a long time before the benefits appear...

Of course I see a Psychologist every 2 weeks, it's very hard for me cause I need to get out of the house and it's very exhausting for me, have insomnia 1 week before I know I have to get out and have more cardiovascular symptoms when I know I will have to get out... and when i'm out the house my blood pressure is very high and my left arm and leg are numb and hurt, have chest pain... My last Cardiologist appointment was 3 weeks ago and before seeing my Cardiologist I had an EKG done and I had all those crazy heart symptoms when I had the EKG done and my EKG was normal, so I always wonder why I feel so bad inside me and why all my heart tests are normal??? Anxiety can't do all of this!!!

"will say the 140 heart rate upon climbing stairs or taking a shower is not way out of line in my opinion.  If your bp is low at the time which a hot shower can contribute to, your heart rate will increase to compensate but if you try and stay as hydrated and nourished as possible it will help alleviate those symptoms a bit.  Taking the vitamins and drinking more water may not cure you but hopefully it can get you to a point you can at least function to get more exercise as well get you going so that you can consider seeing a therapist as well to deal with your anxiety.  Anxiety in general may be contributing to the problem as well.  All of it causing a ripple effect leading to your heart troubles.  Work on these outside stressors and your heart may calm down a lot."

Humm, like I was saying, I see a Psychologist every 2 weeks, had done so many therapies, group therapies and also private therapy... it's not working on me... I Feel better after I see the Psychololgist and talk about what I live but after 1 hour my anxiety return and feel the same... we try everything, exposure therapy, everything fail...I still see her cause she listen to me and understand what I live and try to help me and not judge me, but no change at all...

I don't believe now that anxiety can give to me all those symptoms... I do the mistake to believe my PDoc when I had the intestinal pain and I almost die!!! Anxiety can make some symptoms worse like the tachycardia, but not all the time... me it's 24 h a day...I feel like I drink 10 cups of coffee and I dont even have a coffee since more than 4 years now!

And like I was saying in my initial post, I have 4 bootles of Peptamen AF to drink daily. It's like Ensure or Boost drink but better absorb and with more calories. Those supplements cost more than 250$ for 24 bootles... they provide 1200 calories a day and plenty of vitamins and minerals as well as MTC fat who are better absorb, dont neet bile to be digested, for someone like me who had a  gastric by-pass it's the best kind of fat... to be honnest that stuff taste horrible and I can't gain weight even if I drink 4 bootles a day and eat regular foods as well!!!

For the constipation, it's appear after the hemorrhoidectomy surgery. It was so painfull that I start having fears about the pain while I have a bowel movement and then I start having constipation. I try all the kind of laxative and no one work, I always need to use 5 to 10 glycerin suppositories x 2 a day to have a small bowel movement. It's seem that the hemmorrhoidectomy destroy my pelvic muscle, so now it's always tense and whatever if my stools are hard or liquid they don't want to get out alone... I'm now taking lactulose everyday, at least it help to make my stools softer but have to pay the price of being bloated, having gas and cramps all the time from it, if I dont take the Lactulose, the stools will be very dry and the suppositories will not work at all...I also start bleeding again when I have a bowel movement and the Susrgeon who did the hemmorhoids surgery said that the internal hemmorhoids are back!

Avatar universal
Well it was more a 5 parts answer!!! lol

Anyway, I now have fears about everything I eat, I always have to think about how it will get out of my system... if I will be able to have a bowel movement, if I will have another intestinal obstruction... thats crazy...

Anyway thanks again for your help ;-) Sorry for my long message...

PS: Can you tell me where I have to go to post my questions to receive some professional advice???
1807132 tn?1318747197
Your body has been through a lot and your system may really just not know which end is up at this point.  It sounds like you are doing your best to try and get the proper nutrients in your body but please do make sure you drink lots of water.  Like I said, it won't cure you but it should help with some of the heart symptoms. I might also suggest trying to get some natural fiber into your diet.  I did the powdered stuff at one point and it doesn't work as great as having some oatmeal at breakfast and something with fiber at lunch.  With every meal would be good.  This should help your intestines work a bit better.  If you can find one you may want to seek out the advice of a dietitian since you have such a hard time with eating and your intestinal problems.  Since you do have POTS and dysautonomia has anyone suggested compression socks?  You may want to invest in them to help with your bp issues.  I really wish I had more advice to give you that could help you but I am not a doctor and my knowledge with your issues is limited but you can try the expert area by going to the Forum menu at the top of the page and in it you will see Health Forums.  Click on that and the right side of the page has all the doctors forums you can look through to see which is appropriate for you to post in.  Best of luck.   I do hope you can get a handle on this and feel better soon.
Avatar universal
Hey thanks for your answer ;-) I appreciate it!

I also think that my body had too much trauma recently who lead to those symptoms and make them worse.

For the water, I drink more than 6 x 500 ml bottles of water a day and drink also herbal tea, in fact when I drink more water I feel weaker! I find out that drinking maybe 1 liter maximum a day is better for me than drinking the amount I drink right now... Drinking plain water make me feel very dizzy, increase my heart rate, make me bloated and give cramps, make my headache throbbing even more... I don't know why?

Anyway, I will find out where to post my questions to have some professionnal answers ;-)

Have to post short questions, if not peoples will find it too long to answer... I tend to write too long post, so peoples get tired of reading it and don't answer...

Thanks again ;-)
Avatar universal
i think i have had the same, or went thru the same.. but many doctors told me it was anxiety, and indeed it was. but it was anxiety caused by the heart working not normally...

if you have IST or POTS, then it can be VERY disabling causing extreme tiredness, disability and other stuff.. i am not sure what is causing it but i heard it had to do with abnormal sinus node in the heart. if your heart structurally normal.. then its normal..

how did this started for you, i suppose you could live without these problems before? When was the first time you had these problems..?
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