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Bedridden With Postural Orthostatic Tachycardia Syndrome

I have Postural orthostatic Tacycardia Syndrome and have been bedridden for nearly 5 years.I have low blood volume and no quality of life, i suffer with a tight chest,breathlessness,pooling of the stomach and legs,low blood pressure and feel dreadful all day. I am soon to start on erythropoeitin for 8 weeks and am on fludrocortosone to try and increase my blood volume as drs say this is why i cant get mobile yet.Id like to hear from people like myself and get any feed back as to what medications help

gillyann gillyann 56-60 17 Responses Dec 6, 2008

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I have POTS and had severe chest pain, fatigue and lightheaded. I had to have a Pacemaker installed and it did not help. the pain did not stop. this continued for a year, then I was watching TV one day and they had on a sunday morning show a piece about Transcendental meditation (TM). I had learned it when I was a teenager and did meditate for years. I started to mediate again and went to see a person who checks to make sure you are still doing it correctly. I did not notice a difference at first but over six months, it slowly got better. I feel much better and am telling anyone that has POTS to try it. Find a local TM center and try it. it improved my life dramatically. PS. I have no affiliation with TM centers. I just do it and it helps. God Bless you

Hi plz read my featured article on how I recovered. I was on Fludrocortisone for quite a few months and starred an exercise regime. If you are bed ridden. Perhaps start by moving your legs. Pilates really helped me at the start. Once you are strong enough move to more vigorous exercise gradually. Cardio fitness is important so is strength especially leg and back / core strength if you have pooling. Exercise saved me and I am now almost fully recovered.

Hi I'd like to help u when will u be online?

oh my gosh.. reading these brought tears!!! its good to know your not alone, but just awful to read what some ppl are going through.. I've only been dealing with this for ab 5 months, and recently diagnosed, some of yall stated you didnt have a doctor who knew about this condition, please try to find a electrocardiologist! those are who know and can treat pots, also ask about VERAPAMIL I havent started it yet, the dr prescribed it to me, and I should be starting it tomorrow, but from what I've read it should help, it helps regulate and slow the heart. I also have klonopin .25mg, and take that sometimes and it helps, especially if I'm under alot of stress.. I have also noticed that if I exercise, slowly, at first its bad, but then it'll be tolerable, i havent done anything in the last few weeks bc its gotten worse, but I'm gonna try to walk for 10 mins, the dr said aerobic excersize is very important and will help down the line, bc we have to go so slow and do little by little,, it takes time,
and someone said something ab taking some medication with helps cortisol levels, before you take that, have your cortisol levels checked, there are two kinds of pots, and one has normal cortisol levels

I was just diagnosed with pots but I've been suffering from it since I was twelve (I'm 19 now) and I spend all day in bed accept to use the bathroom pretty much. I get up when I can but it's very hard and hurtful, not worth the energy most of the time. I'm very scared for myself now, my symptoms are getting worse and now I can't hardly see so I have someone help me write now. I'm so sorry this has happened to you, I pray you get better. I just hope you know your not alone, I've been told I may have to be on bed rest for at least a year and I'm scared to do so, but I guess I won't be alone :/

My 13 year old son has had POTS symptoms in a mild fashion his whole life, for the past 8 months they have reared their ugly symptom heads! He was diagnosed 4 months ago and I have traveled all over to find a Dr. that can fix him. I now realiuze it just wont happen. We can treat the symptoms and control our environment. We can monitor food, fluid, excercise and salt intake. We can use deep breathing, attempt good sleep patterns and listen to our bodies. POTS is in control. I think each growing stage he is under will trigger and exacerbate his symptoms and I pray when his body stops growing his POTS will stop too.

Hi! I also have POTS. Been struggling for 8 years now. I have found much relief in holistic meds over beta blockers and pyrostigm. There is some vitamins called Drenamin and min-trans that help boost the adrenals and cortisol. We lack both. B-12 and magnesium help too. Don't give up! I am still full of life and researching to no end things that will help. I live on Celtic sea salt and coconut water!! Fight this.. your worth it!!

I think I have pots my cardio is trying to get me an appt. with Dr. Grubb at Toledo Medical Center. I have some of the symptoms and they started 2 years ago after a lot of stress I was in bed for 4 weeks and several trips to the ER and of course they couldn't find anything. Then one day I was fine My heart rate goes up when standing usually around 140 or 160 then when I sit or lay it goes down, my blood pressure also goes up. Now 2 years later and after stress it is back benn in bed for 4 weeks and not getting better I keep hoping I will wake up and it is gone since it went away before. I never hear anyone talk about anxiety with this mine is terrible does anyone else experience this ? Also I have a weird symptom sometimes I feel weak and shaky like my blood sugar is low and it is not and sometimes my insides are shaking but not on the outside. I have lost my job and I also have a Salon that I own I will prob lose that if I can't get back to work.

Hi, I have had POTS for over a year now. I started a website that tells about my story and what I have done to treat my POTS. This week I just enrolled an a program, out of Texas, that has had great success in treating POTS. My website is www.aviationsupplements.com

Hi PCBUILDER ..Do you live in England? I'm gillyanns daughter and as mum is bedridden I do all the research and emailing for her..If living in England just wonder if we can be of any help in regards of doctors?

i was bed riden with if for 3 years. i started to get better. even though i could Move around i was still weak and couldnt do Much. Now all of a sudden after ayear of getting better My symptoms have suddenly returned to the point i can't even get out of bed any Mroe. i think i am worse now then i was the first time around. some days i swear i just know i am going to die. other days im ok. but over all My health is getting worse and worse and worse. unlike Most i have high blood pressure as a result of this. i will be walking around ding just fine. and out fo noware i will fall weak get a knot in My tummy and i will collapse with a racing heart rate and blood pressure through the roof. There are days i just sit and stare at teh phone wondering should i call for an ambulance i honestly think i am about to have a heart attack and die. and No im dont have anxiety. This is real. people around Me that witness how Bad i am doing think the same. the worse part is i cant get any assistance from the government. i have been turned down disability 3 times for this. i also have My own place and have to pay rent. i have been paying rent for 3 years with no income at all. i am almost out of money. i will be living in My car. somtimes My heart beats super super fast 350bpm even. but weak. otehr times My heart beats slow but beats to hard it feels like its going to jump put of My neck. or explode in mid beat. i also have problems with My right kidney. My illness first hit Me immediatly after getting treatment for a kidney stone. all teh doctors say its not related. Well it it's not related then why do My symptoms get ten times worse when ever My kidney acts up? after dealing with this illness i have lost all faith in doctors. the doctors around here are so bad i doubt they would even know the diffrence between a hand and a foot.i want My life back. :-(

I was bed ridden for a couple of months. I truly feel for you. Fludrocortisone worked wonders for me after they adjusted the dosage. Another thing you may want to try is removing garlic completely from your diet. I read on a site a woman who stated when she ate garlic it made her symptoms worse. Turns out it's true. I cut it out completely which is harder than you think. Now after the Fludrocortisone I can now eat garlic. But since your symptoms are so severe you should try checking all ingredients. Garlic thins the blood. Typically POTSy people are sensitive to medication and supplements. So garlic affects us differently. Since I was bedridden I did a whole lot of research. I am not back to normal but feeling a whole lot better than before. I have accepted for my case that I will never be the same again. But any improvement is great step for me. Good luck.

It has me bed ridden as well. I went through a traumatic brain injury and then thought I was getting better then this happened.



It has been a nightmare! Now, I have good days where I can walk a bit and then days I am unable to walk ten ft. without collapsing. I am unable to take meeds but I have been doing acupuncture for the past year and feel it really helps to keep me out of bed a lot more. I also started very slowly with yoga poses. One pose then started adding them on every week. I am unable to do the treadmill, it knocks me out quicker than anything.



I did notice that sometimes I may feel like I can't move around but I get up and its not so bad.



Its kind of like russian roulette, you never know what's going to happen.



Life shouldn't be like this but I will be happy to live like this than to have a disease that will take my life.



good luck to you and I support you. : )

Hi, I am a mother of 3 young children, aged 1, 3 and 7. I was diagnosed with POTS in May 2009. I spent nearly 2 months in hospital and was bedridden for about 12 weeks. This has totally devastated me and my family, I have had to leave my job but I will not give up hope that one day I will be able to return. I am in the UK and was discharged from hospital and told by my doctors that they could not help me. I take Fludrocortisone, but am unsure whether it helps me or not. If I tried to sit up my heart rate would shoot up and I would have terrible chest pain. I was severley weak, unwell, and had many many POTS symptoms. I believe that the more I lay the worse I was getting and although I physically could not stay on my feet I had to find a way to or I would continue to decline. I would really push my self little by little until I could sit up without having to lay down so quickly......my drive for this was the fact that I could not sit or stand to rock and comfort my baby when she needed me.......so I tried my best to recondition myself. I am now still badly affected by POTS and can not live my life independently but I can sit up now and be on my feet for short periods. I do have days where I cannot really stand but then I have days where I can for a while, so we make the most of them. As well as taking the Fludrocortisone I drink gallons of water (it helps that I am constantly thirsty!!) and I do find this helps. I have pushed my doctors for a refferal to Prof. Mathias in London, whom I travel to see for the first time next week. Please, do not take this disease lying down, fight it with every ounce of energy you (all) have.



I to experience the headaches with POTS!!!!

hiya, im new to this, but i was diagnosed with p.o.t.s about 6 months ago but i think iv had it for a while, i am under prof.mathias who is excellent, he,s the only person who made me feel as though i wasent crazy....
iv been house bound for about 10 months i do own a wheel chair but only use it for going shopping if accompanied by my mum so she can push.... but ur totally right about not staying in bed all the time because you end up deconditioning your body so it gets worse. a tip for when you feel as though u cant stand for long is crouching for a min or walking onthe spot it helps force the blood back up, also flexing ur calf muscle before you get out of bed also you may want to invest in a heartrate monitor you can get them really cheap on ebay its just a watch with a chest strap... that way when your heartrate starts to climb you can crouch down at around 120bpm which buys you a few minutes to continue doing what ur doing as ur heartrate should decrease 5-20 beats depending how seveare your pots is! i noticed that although its good to not stay in bed all day (unless its one of those terrible days were u have no choice) never push yourself when u need to sit down, SiT DOWN!! pushing urself will most probably lead to a black out! trust me i know lol also i u have digestion problems like me have them do a gastric emptying test... unfortunatly i have the cluster of autonomic dysfunction! wish u all the best!! feel free to messege me if you have any questions!

Hi, i was diagnosed with P.O.T.S on dec. 17th 2009. Im only 17 so its been extremly hard with school it took me over 4 years to get this diagnosis. my doctor put me on clonedine and it seems to be helping but i still experiance really bad days in which i have to stay home from school cause i can't wake up the only thing i can do when i have a bad day is sleep. my doctor told me that when i do feel my heart start to race to lay down and fist my hands together ad pull as hard as i can and with rest it seems to help slow down my heart rate a little bit. Has anyone ever experianced headaches after an episode of P.O.T.S?

All the time with headaches they are horrible I had to go see a neurologist just get some relive they put me on topmax, ambien, along with the other many meds I am on..the topmax helps some

Hi,

I am new to POTS.I think I have had it for over a year now.I got a bad case of MONO from my son last NOV,and since then ,things just have not been right with me.I really notices a problem at work about 3 months ago,when I would climb the stairs in the building I work in,and would get to the top and hardly be able to breathe,and I would feel so dizzy,and my heart would pound like crazy.I have a great Dr,who is working through this with me,he is so smart,just out of school from Harvard,and seems to be right on target,I just want to know when I will feel better.I have 2 kids,5 and 13.my 13 y.o helps alot,but I love baking for them,and doing things with them,and right now,its just not happening.I cant even run the vaccum without exhausting myself!I have been off work,since Nov 4th,my fmla is expiring,I am not renewing it,They treated me horribly there,I think,I am applying for disability,as I also have Lupus.I am 39,and just want some friends,who can relate to me,I feel so down,and just want to cry all the time about this...Thanks!!JulieG

Hi Impetus,it is very hard to find a dr who knows about pots.We live in England so if you do too you could always liase with us if the condition gets too bad.Some pots patients are worse off than others,it depends on the severity.We sat on the internet for months on end learning about it.We wish you well.

Hi, I was just diagnosed with pots last week. I think that I've had this problem for a while, the symptoms were just mild until last week. I'm doing better at the moment, some of the symptoms have subsided, for now. I am a 28 year old mother of 3, and fear that I won't be able to work, or take care of my kids anymore. I was unable to get out of bed for a few days, and was told that the symptoms will return. I'm just waiting. I still have the tachycardia every time I stand, and periodic numbness in my hands, feet and face. I haven't talked to anyone else with this problem, and I've only found one doctor that has even heard of it. I don't know where to go from here.

You have lots of Resources out there. Your average family doctor may not know about POTS, however there are great doctor out there that have lots of experience in the field. Mayo Clinic has great resources. www.aviationsupplements.com