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hippychic258

Bedridden From Pots

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HI I have PotsI had a flare up 2 years ago and now I have been sick since January and became bedridden in the middle of February, and by bedridden I mean I have not walked at all a couple steps here and there to see what would happen but that is all. I have noticed a lot of people who are bedridden still get up to go to the bathroom. This flare up is so much worse than my previous one and has lasted longer with more symptoms.

Last week I tried walking I took 4 steps got back on bed and I felt like I flipped upside down had a sharp squeezing feeling in my head and chest then one strong heartbeat and then the tachycardia started for about 3 minutes. I am not sure what that was has anyone else ever experienced that? Now of course I am scared to try to walk again. So my question is how do you start trying to walk again? Has anyone been totally bedridden for a long time and how dd you know when you could try walking again? I feel like I am just waiting to be totally symptom free before I try again.

I have never passed out and I have such weird scary symptoms I am wondering if anyone has experienced any of these: Body vibrating. weird dizziness not caused from fast heart rate or low blood pressure, floating sensations that are worse when you close your eyes, very bad eye sensitivity makes me dizzy and sick when I watch tv or get on the computer, head pressure, ear pressure, noise sensitivity, buzzing in your head, hot flashes, bad headaches, body tingling. If you have experienced any of these and know what causes them please let me know, I am not on any meds so the symptoms are not reactions to meds.

What is the longest anyone has been bedridden and still able to get up and walk again?

Any info is helpful.

Thanks

Pam

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Also I waned to ad that I get what feels liket remors but are not visible on the outside and I can't sleep on either side.

Thanks

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Hi hippychic, sorry you're feeling so unwell.

I think staying in bed will really hurt your chances of your POTS improving, deconditioning will just make it worse and harder to cope with. I have a big problem with the tachycardia on standing too but have been given some meds to help with that so I can stand for short periods of time, have any of your doctors discussed this with you?

I was only bedridden for about 4 months and started slowly by doing stuff like walking to the bathroom, etc until I got to a point where I could do very gentle physiotherapy. My symptoms didn't really improve thaaat much but I can sit up almost all day now (except on really bad days) and I can enjoy life a little more. :)

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The only time I was really bedridden was when I had 2 episodes of vertigo that lasted for several days each time. My heart goes out to you....that was a horrible experience. Hope you can start doing small exercises even in bed to get yourself going again. I agree with Sif that if you are deconditioned, it makes it so much harder to get out of bed. There are recumbent bikes that you can do lying down. Are you on any medication for your tachycardia?

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Thanks I do have a bike but my problem is when I do anything my dizziness and vibrating sensations are so bad and it makes me so sick. I really dont have much problem with tachycardia mostly because I am not up very much, I can deal with the fast heart rate it is all the other weird symptoms that are bad. I am not on any meds at all.

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Hey hippychic258,

I'm so sorry your feeling so unwell:(. Fr your dizziness, don't get up quickly, sit on the edge of your bed for a few minutes, then if you feel like you can do it, stand up slowly. When you get up in the morning, drink a lot of water, that seems to help me a bit. (because you haven't drunken in hours, so you're dehydrated, it can help blood flow or something)

I hope you feel better soon!

Kayla, 10

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You are not the only one dealing with being bedridden, that's for sure. I passed out in February 2011 and ever since then I have steadily declined. Currently I am pretty bedridden. I do get up to use the bathroom and shower in a chair. I do from time to time try to get up and grab a quick bite to eat when no one is home ( I mean real quick ), but for the most part I am in bed. I don't even sit up much either. I have Pelvic Congestion and it greatly contributes to the pooling, but I recently had a hysterectomy and it has improved my blood flow. I use to get dizzy even in bed while lying flat, now it's just when I stand or if I sit up for more than five minutes. I am also trying to get out of bed more, but it's been slow progress. My nervous system is so sensitive, I get over stimulated very easy. I get really tired too. I also vibrate internally, doesn't always show externally and my head gets super dizzy and foggy. I also have tachycardia and palpitations. My problem is if I over exert myself in the smallest way, I could be dealing with hours of severe palpitations and adrenaline surges. It's awful! I have had POTS for almost six years and these last two have been the worst, Right now I am doing toe point and flexes in bed for legs, also leg lifts on my side. I lift small 2-5lb pound weights in my arms. I try to stretch every muscle out and move positions almost every 30 minutes or sooner. When I first started I could only do 5 toe point and flexes without causing symptoms to flare. Now I am up to 30. Same with the other exercises, started slow, but am gradually improving. I started this about 10 weeks ago. It feels like I am crawling, but I really want to get out of bed some day, so I have to keep pushing it. My immune system has trouble, I have allergies and I pick up every virus my kids bring home. So it seems like every two weeks I am down with something and this really makes things go slow. My advice is do what you can and start slow, at least your doing something. So when the day comes you can get up, you will be strong enough to do it! I am soooo done being in bed, these symptoms are not gonna hold me back anymore. If I feel crappy along the way, well, Oh well. I would have felt crappy even if I wasn't doing it ;) On a quick note, I am on some meds, zoloft, zyrtec, estropipate, ativan, xanax. Unfotunately I could not tolerate florinef, midodrine, or a beta blocker, made me way sicker. Best wishes and Good Luck!

-Andrea

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If you haven't gotten up for a few months, you are likely deconditioned. It ishard to tell what part of the issue is cause by POTS and what part of is due to deconiditioning. I would talk to a dr because your situation sounds unique. Maybe you can star t by propping yourself up in bed with pillows so you are a least more upright and building from there....ideally gradually moving on to standing, then walking. Maybe you can figure out some treatments (like medications or compression) for extra support. Ask if there is any danger/risk in walking - if you arent a fainter, most likely there isnt. If your dr OKs, you may have to push through your discomfort/fears.. The longer you stay in bed, the harder it will become. Many of us have done this, you can too!

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Hi hippy chic, I'm sorry you are having so much trouble. I have gone through time where I couldn't walk a few feet without fainting too. It's very important to start slow, like aunie said it feels like crawling. Push yourself but not so much you faint, it may only be an extra step every few days but some progress is better than no progress!

For me it's been a combination of the right meds and finding the right balance of pushing, right now you may only be able to do some toe points or leg lifts in bed. That's good though! As you build a little muscle in your legs you will be strengthening the muscloskelatal pump which will help support the blood return to your heart when you do stand.

It's possible to get stronger, its just very very slow. If you need help figuring out what would be good first steps to take in getting stronger we're here to brainstorm with you :)

Aunie- I'm going to be looking into PCS too. Your embolization didn't last? That is very frustrating, I also wonder if I may have endometriosis. I'm not sure how that would relate to POTS though.

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Thanks everyone. Does anyone else have any of these strange symptoms?

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hippychic, have you talked with your doc about vertigo? Some of the dizziness/floating stuff you describe sounds somewhat similar to vertigo - might be worth looking into? I had some pretty severe vertigo when coming off of Cymbalta (though of course like you said you're not on meds), and it definitely exacerbated the POTS and was quite hard to separate from it too.

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When I was at my worst I felt more comfortable in bed with both respect to the way my body was responding and my fears about what was happening to me. I didn't know what I had so I didn't know to stay down (or up for that matter). I think I helped myself by pushing a little, even though my hubby was telling me to stay in bed until this cleared. My gut told me this just wasn't going to clear. I would set little goals for myself to be out in the kitchen for about 10 minutes. Then back to bed. Then shower by 1p or 2p. Then back to bed. Then be seated at the kitchen table by 3 when the kids came home from school - then back to bed. While I was up for the short periods I felt terrible and scared. But each week I tolerated a little better. Never feeling good but tolerance building. I still don't feel good and it's 6 months later but I can work - uncomfortable every day - and function at low levels. Meaning I can't carry groceries, or I don't want to do what my usual routine was - things like lunch, BJ's, Target, visit my Mom, etc. In the beginning I could hardly tolerate the TV noise or light. My sensitivity was severe - the water noise from a shower made my skin feel like lightening. But I would try and turn the radio on for very short periods and chose a song that had a good memory for me so my tolerance was better. While sitting up I would play a computer game and breath thru symptoms trying to keep my mind somewhat occupied. None of it was easy and I still can't believe this is my life. My heart bleeds hearing your story b/c I can relate to everything that you feel. For me, unknowingly pushing thru the symptoms is what I believe got me better. At the time it was happening I had no medical support, was using a little hydrocortisone for what was probably the wrong diagnosis of adrenal fatigue - who knows. I learned everything I know from this forum. Added salt, tons of water, and now I use coconut water as well. Started Midrodine yesterday --- so the saga to finding a solution for us will always be 'to be continued' --- good luck.

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I used to get vertigo alot. Now only every once in awhile. I had a tube placed in my left ear and it has helped tremendously! I have had it for two years and it needed replaced last year, during the time it needed replaced, I noticed my symptoms coming back and getting worse, New tube and symptoms went away again.

Banana's- Embolization worked for about four months. My body just decided to make the veins larger, and the blood re-routed to other varicose veins in my pelvic area. So I got more pain in different areas. It got so bad before I had my hyster that I was literally tipping the bed at the foot to try and get the blood to drain back to my heart. I was having dizzy spells in bed, it was awful. My gyno said that during the surgery there was alot of extra blood. It's called collatarel blood flow/vessels. Don't know how they got there, but it was pretty bad. I think embolization is worth trying. You don't really know what your situation looks like until they open you up to see. MRI's and venograms showed Pelvic Congestion, but it didn't look near as bad as it was. My gyno said it was like nothing he'd ever seen. It may work for you better than me. The hyster improved blood flow, because my uterus isn't hoarding it anymore! I still have pain though, and still ache. That's why I am going to see the vascular surgeon. Hoping he can do something about the veins the gyno couldn't reach. Feel free to msg me if you wanna chat!

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I've been bedridden with this since Nov. 2011. I am STILL there.. This flare began in April of 2011 but my fainting increased so drastically in Sept-.n- Oct. I'd go from 100/75 65 HR to 30/10 180+ HR Many times they couldn't get a pressure at all. This would happen so quickly it seemed I has no time before there my blood to my veins. I also have very open, stretchy veins due to EDS.

I was put on bed rest on Nov. because in 3 weeks I had 4 concussions (had a total of 12). I was hospitaliized from late Nov. - NewvYears, I don't always stay in Bec, I crawl around to the restroom, to take a bath and use the restroom. I will cawl around my room too if I need something. But for the most part I'm in bed. I check my vitals twice a day and for the most part- not a thing has changed, so we obviously need a new plan!!!! Good luck!

Jen

My main reason for not pushing myself are the multiple head injuries and concussions. Right now I'm till still not cognitively impaired but I have lost up to 30% of my function- word retention and memory. It is VERY noticeable to me even though most people say: "Oh! I can't even tell." lol. What are they supposed to sat? It's bad enough my family has had to deal with every day- I can't imagine some of the horror stories I hear about after long term concussion effects.

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Jen so sorry about your situation. I hope you have better days soon. I am sure your legs are as deconditioned as mine then. I don't know if my body can handle me getting up.

My first flare up I thought i was going to die and it was nothing compared to this one at least with the first one I didn't know what was wrong so I just pushed through

the symptoms and was up everyday at least a little bit.

I have lost 30 lbs and i was only 130 to begin with i can't loose anymore weight.

I am not sure how to deal with all this I own a hair salon and was working another job , I lost the job and I have to sell the salon my poor husband has given up his life to take care of me and my kids have to look at the mom in bed all the time. I am only 46 and I could understand all this if I was 96. There are days I feel like I am dying and there are days i wish i was dying, but there are moments when i try to pull it together and get in a positive thought.

I hope there is a light at the end of the tunnel.

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One thing I have found very useful during my current flare is tilting the bed head up a few inches (I did four.) It was on my neuro's list of helpful tips and tricks and at first I wasn't sure how it would help at all. Although the list recommended not exceeded 3", I did 4" because that was the size of the concrete pavers I had access to in order to elevate the bed. It seems to work in one way by preventing you from lying completely flat. That way, even when you're sleeping, your heart isn't completely in the "at rest" position. After just a few short days of lying down and sleeping in this position, my endurance has been greatly improved. I think it's important to start low though because at first I could hardly take the strain of being tilted even a little. It's awful to be bedridden and housebound. I hope you find something that helps.

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I tried tilting the head of the bed up and my symptoms got much worse so we took it down, I lay propped up, I can't lay flat it makes my symptoms worse as does layingon either side so strange. For the alst 4 months have only been able to lay on my back......so frustrating, I really hate this.

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Hippychic,

I'm so sorry that you are going through this right now :(

I may have missed this in your other posts, but are you able to hydrate well (salt and water)? I know that we are all different, but that hydration made such a huge difference for me when I was at my absolute worst. I'm pretty sure it is what got me to the point where I can move around the house.

Sleep position is definitely an issue for me too. My right side propped up is the only position that works, so I arrange my bed and myself so I don't move from that postion (I tend to have apnea on my back; chest discomfort on left side and tachy or nasty irregular rhythms on my belly).

Hope something works for you soon...hang in there!

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Are you seeing a specialist? It may be time to seek some serious help if you are in this much distress. I was bedridden a few week and house bound for months. You dont have to get out of bed except for dr appts but if you are bedridden you should do some stretches laying down and some pilates in bed. I found this youtube video to help you get started

Dont worry you will one day get well soon!

Also did you ever try compression garments, they helped me stand for longer, otherwise I would still be in bed all day..

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I'm so sorry to hear that you're bedridden. I don't know if telling you about my daughter will help but you never know. My daughter has POTS and dizziness has always been her worst symptom. She was so dizzy for three and a half years that she was unable to sit, stand, and her walking required her holding on to the wall or someone. At school, she was in a recliner and at home, the sofa. She was horizontal for that entire time. She describes her dizziness as she is spinning and her dizziness isn't due to blood pressure either. When she did walk, she would walk almost to the ground with her body moving back and forth. It was awful to watch but we encouraged her to walk and move as much as possible.She would kick around in a pool while lying on a few noodles and she went to physical therapy once a week and did leg and arm strengthening exercises at home as well.

After the 3 and a half years, she began to show signs of improvement, so her physical therapist suggested that she try vestibular therapy next. She went 3 times a week for the entire summer of 2010 and went from hardly being able to sit or stand in June, to sitting up the entire first day of high school! Since that time, she's had some set backs but has never gone back to how she was before.

Now, I don't know what age your are and if you're an adult, your outcome and diagnosis can be different than for an adolescent. I still wanted to tell you our story to give you hope and to know that like others have already said, do a little at a time. I know it's hard and there were days of watching my daughter struggle in therapy that I just wanted her to stop butr it was all worth it. If you don't already have a good doctor who is knowledgeable with autonomic illnesses, I would recommend getting one. Also, medications can help and even though my daughter never found one to help her dizziness, she has been on other meds that have helped the other symptoms.

I hope you find the help you need and take care,

Brenda

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I forgot to say that my daughter is walking, sitting, and standing now. She had a rough year in school this past year but just rode a roller coaster this weekend! Totally surprised me that she could handle that again! Miracles do happen and it's so nice to see my daughter enjoying herself and doing normal teenage things!

Brenda

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Brenda:

So glad to hear that your daughter is doing better. It gives all of us parents of potsies hope that our children will soon be better.

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