To Those Who Went From Bed-ridden To Functioning Or Nearly Function

[roxie]

I have been strugglingwith POTS for 9 years,and althoug over the past few years I've gotten drasticaly stronger, i.e. i can sit up and read or do things for a couple of hours everyday, I am nowhere near normal or as strong as I would like to be.

I am consistent with all my meds, physical therapy, and pushing myself to do things. Yet I still feel that it is as horrible fight. I would like to start college part time, hopefully in the Spring, but I know thats a tall task

How does anyone who was once bedridden, desperately ill, go to being able to do things? Did it happend overnight? Or did you have to build up strength over time?

~Madeline

[lthomas521]

I wasn't bedridden, but I was so sick that strangers would stop me in the halls at work and ask me if I needed to have someone take me to the nurse's office. I really shouldn't have been working.

My dramatic improvement started within 24 hours of taking my first big (300-mg) dose of thiamine. I improved even further when I added other B vitamins to the mix.

[Dizzy Dame]

I was bedridden for the first 6 months of my illness. Since then, I've made a slooooooooow recovery and today I'm in school part time.

I think the medications are mostly responsible for my improvement. However, I still have slumps where I'm very sick, sometimes bedridden, for weeks or days despite my meds.

I don't think I did anything that you're not already doing. I keep my sodium up, eat properly, exercise when I can (even if I can only do a few leg lifts), I try to have days of rest in between active days, and I only schedule one "thing" per day. For instance, if I go to class, I don't do anything else that day. I also try to only be out for a few hours at a time.

Have you thought about trying different medications to see if there are any that may improve your quality of life? I know midodrine and mestinon have been life-savers for me.

-Lauren

[MomtoGiuliana]

My recovery was slow over a matter of months. I was completely bedridden for about a month at my lowest point. I believe that what helped me was taking an SSRI, stepped up exercise, and probably just time to heal from the c-section and the effects of pregnancy--which is what apparently brought severe POTS on for me.

I think each of us is so different in the severity of our condition. Hopefully these responses are of some help to you however.

Katherine

[futurehope]

Ithomas, I'm facinated by your trial of B-vitamins and how you believe they helped you.

How did you come up with the idea to take thiamine and the dose?

I also may be hyadrenergic POTS, though I don't know if it's primary or secondary.

Thanks for any info on the B-vitamins.

[masumeh]

I hate bananas TOO

As for the ?....I went from bedridden to nearly functional over a period of four years. I had a sudden onset, so from what I've read, perhaps that viral beginning was easier to beat than for example an underlying neuro abnormality.

It helped most to stop pushing and let my body rest.

In the beginning, I was also very depressed because I had to drop out of Nursing School w/GMU, a goal I had been working towards since high school. So, I think the depression (which of course was exasterbated sp? by the loneliness that accompanies being disabled after surrounding oneself with very active ppl) was a big hinderance to my physical recovery. Once I lowered the bar and accepted my limitations as a part of a new me that I had to love for the good parts, I was able to move past the emotional barriers and my recovery started to click along at a very slow and fluctuating, but generally upward, pace.

The worst thing is to totally overdo it. That always sets me back. For example, I felt better and better over the past year, but about 4 months ago I stretched myself by taking care of my elderly in-laws while their maid and daughter were having surgeries and illnesses....that killed me for like three months. It feels okay at the time bc of adrenalin, but the aftercrash is horrible and slow to recover from.

I've never taken meds. I just take it easy, stay happy, and drink lots of water w/salty foods (and high potasium food, ie potatoes), and limit down time.

Down time, which is horrible for me because it lowers bp, is any head position lower than sitting. If I am sick, I should sit, not lay down. Laying down means not getting up w/out fainting. Sitting was impossible at first, but it is how I spend most of my time now. Standing is not good either.

If you want to go to college, I highly recommend distance learning. There are many, many colleges that offer distance learning programs, including most community colleges. To mention a few: University of PHeonix, University of Maryland, Mary Baldwin College (my current), Northern VA Community College, and so many more. There's a web page with DL search function, if you are interested I can get the exact addy. For me, commuting back and forth to campus was an impossible energy expenditure. DL works great and I can go at my own pace with MBC. Anways, let me know if you're interested bc I did a long exhaustive search when I first started w/DL and maybe I could help you find the right one for your interests.

Masumeh

[marnian]

I'm working 15-20 hours a week now, but in August I wasn't working at all and I spent a lot of July in a hospital/nursing home. Medicine and exercise is definitely helping, but compression stockings made the most immediate difference. I used a wheelchair for a few weeks until I started feeling better. I've been able to work a few more hours each week. I feel very lucky to have a job where I can sit all day, take breaks, and work very flexible hours. Just being able to work at all has really helped my confidence too. I'm exhausted, but it seems worth it.

[cbreeze]

My 16 y.o. daughter has POTS, NCS and is looking forward to trying to go to college. She is homebound with a teacher that comes twice a week for an hour. She is working toward getting her GED though she could take it now, I want her to wait until she's 18.

I want to be supportive, but know that she's bedridden quite a bit and worry that college will be a lot harder than she thinks.

She loves fashion and law. She wants to go into fashion buying and/or legal studies. Yes, she's very bright.

Do you know of some distance learning that she could do from NY or New Jersey?

Thanks for your help.

Christina

Mother of 16 y.o. w/POTS, NCS, fibro, Bipolar, OCD, Asthma, allergies, IBS, GERD, borderline celiac, milk allergy, hypersomnia

Meds: BControl for no periods, Lithium, Prozac, Zyrtec, Vit. B, Florinef

[persephone]

My illness follows a cycle of being bedridden to functioning extremely well; it usually runs every 3 months on a big scale. but is heavily influenced by my menstrual cycle.

I have discovered that EPO and Ivabradine are very helpful.

but I, like Dizzy Dame still get crashes and relapses in spite of what drugs I'm taking.

When I'm bedridden, I still try my hardest to do SOME stuff- today's not been brilliant for me (I'm havig a particularly heavy period) so I have most stay in bed or sitting in my comfy chair with my feet up to write chunks of my thesis. If my mind is occupied it takes me away from rubbish physical things that are happening.

When I was bedridden quite badly up in Scotland this summer they very slowly got me up and on my feet and moving about again - a bit at a time, building up my stamina. It did me the world of good to have someone teaching me how to pace myself and how to be patient with myself.

[Dizzy Dame]

My illness follows a cycle of being bedridden to functioning extremely well; it usually runs every 3 months on a big scale. but is heavily influenced by my menstrual cycle.

Persephone,

Have you thought about trying continuous birth control? I'm doing a "two periods per year" thing right now and it seems to be really, really helping.

...just a thought

[lthomas521]

Ithomas, I'm facinated by your trial of B-vitamins and how you believe they helped you.

How did you come up with the idea to take thiamine and the dose?

I also may be hyadrenergic POTS, though I don't know if it's primary or secondary.

Thanks for any info on the B-vitamins.

I was pretty desperate, and willing to try anything when I read this story:

http://www.mecfscanberra.org.au/docs/stories/bronwyn.htm

Although the woman who told this story is from Australia, her name sounds very Welsh, and I have long suspected that I inherited my problem from my Welsh grandmother. And since metabolic errors are usually hereditary, I said, what the heck, let me try some thiamine. I called my doctor to see if he had tested my thiamine levels, but he was on vacation. So I bought a bottle of thiamine pills from the health food store.

The change that the thiamine wrought in me was almost miraculous. I went from contemplating going on disability to feeling nearly well, within about a week. The difference was noticeable within 24 hours. After a few months, I tapered off my beta blocker and Florinef. Now I just use a little midodrine now and then and do salt and water loading, plus my vitamins. Plus my stockings. I still have to pace myself, but I was able to stand on my feet for several hours yesterday. A friend of mine is running for Congress, and I was doing campaign work. If he wins, then dysautonomics will have a friend in Congress.

If I stop the thiamine, as I did to humor one of my doctors, I get very sick again with 48 hours. (Thimaine has a very short half-life in the body.)

I stopped taking the thiamine for a short time so the doctors could measure my thiamine levels. They were normal. My theory is that I have some sort of mitochondrial problem. They use huge doses of thiamine to treat mitochondrial problems.

I can't get any of my doctors to explain the effects that thiamine has had on me, and I don't even think they take my account seriously, even though the doctors that I was working with (I worked for the medical affairs department of a pharmaceutical company) thought that the change in me was astounding. None of them could figure it out either. None of them had heard of POTS, although at least the European ones thought that low blood pressure was reason for concern.

I take the 500 mg dose because that's the size the pills are. 100 mg doesn't seem to be enough.

I don't know how many POTS patients would benefit from thiamine supplementation, but it's cheap, available over the counter, and has no known side effects that I have been able to find documented in the literature. I've seen some clinical trials that suggest that it can be particularly beneficial to diabetics, because it can help protect their feet, kidneys, and eyes.

[persephone]

Have you thought about trying continuous birth control? I'm doing a "two periods per year" thing right now and it seems to be really, really helping.

...just a thought

Hi love,

I have tried 14 different types of birth control and every time I take it my POTS goes nuts- I bleed continuously, right through it- no matter how meticulously I take the tablets. They've been trying to suppress my periods like this since I was 13 years old My record proper (not breakthrugh) bleed on the pill is 121 days!!!

I tried birth control in Dundee and it made my periods go mental thins time- I was 2 weeks overdue, felt ill for 10 days (instead of 5) before it, and am now (sorry to be graphic) literally leaking like a **** TAP!

They're looking into a coil now. I personally would be quite happy to have a hysterectomy- periods are the curse of my life. I never fainted or had pots before I menstruated; the first time I ever fainted was precisely a week before my first period...make of that what you will.

I'm so glad you get some relief and that it helps though, that is GREAT news!

[Dizzy Dame]

Ouch Persephone! I'm sorry you had to go through so much trying to stop your period.

I briefly gave a hysterectomy some thought a few months ago, but decided to try the continuous BC first to see if it'd help...a person who wants the procedure can get their eggs harvested beforehand, so it isn't a matter of choosing between a family or better health.

BTW: I'm so glad you've been doing better on the new meds. Now you can have some proper fun at Oxford before you become too educated and famous

[lthomas521]

Wow, Persephone, that sounds awful. If birth control pills are not working for you, have they considered a GnRH agonist? It suppresses your pituitary, so it doesn't secrete FSH and LH, so you don't get the ovarian stimulation that drives your cycle. They can give you a little add-back estrogen to keep you from having menopausal symptoms.

http://www.endofacts.com/luprondepot/

[Sophia3]

I have had mild ANS stuff all my life but didn't figure it out until 1998 or so. I got so MUCH WORSE a couple years after a tubal ligation in thelate 80's. started with insomnia..then sick periods..tachycardia and HORRENDOUS FATIGUE that is only relieve when I not sit but RECLINE with feet up at heart level or overhead....can NOT handle birth control...Endocrinologist said no to Lupron shots...Hysterectomy sounds good in some ways as I FLOOD HORRIBLY the last 10 years...sometimes controlled with prometrium and exercise (walking) other times not at all.

I am so sick I am totally bedridden on periods and black out or full blown vertigo. BUT i can't handle estrogen supplementation in pediactric doses due to breast problems. A hysterectomy (uterus out) would stop the bleeding but NOT THE HORMONAL SWINGS that makes me SO SYMPTOMATIC.

Well if we yank out the ovaries, I COULD BE WORSE...or so said Dr. G in 2001 and my endocrinologist agress..he has seen women ruined by hyst and double oopherectomy..because even though they need it their BODIES NEVER TAKE FOREIGN HORMONES..even the bio identical crap that is not identical to what your OWN BODY DOES naturally.

So I am at a tough point in my life..almost 50, regular periods and getting worse..but would hysterectomy/oopherectomy make me TOTALLY BEDBOUND? Could be. Might it help me? COULD BE.

Or just stay the same and work thru it and hope menapause comes soon.

VERY DEPRESSING. if hysterectomy was a GUARANTEE to IMPROVE MY SYMPTOMS, would've had by now.

[masumeh]

My 16 y.o. daughter has POTS, NCS and is looking forward to trying to go to college. She is homebound with a teacher that comes twice a week for an hour. She is working toward getting her GED though she could take it now, I want her to wait until she's 18.

I want to be supportive, but know that she's bedridden quite a bit and worry that college will be a lot harder than she thinks.

She loves fashion and law. She wants to go into fashion buying and/or legal studies. Yes, she's very bright.

Do you know of some distance learning that she could do from NY or New Jersey?

Thanks for your help.

Christina

Mother of 16 y.o. w/POTS, NCS, fibro, Bipolar, OCD, Asthma, allergies, IBS, GERD, borderline celiac, milk allergy, hypersomnia

Meds: BControl for no periods, Lithium, Prozac, Zyrtec, Vit. B, Florinef

Christina,

I remember how hard it was to start college Distance Learning after getting sick...I don't think I would have done it w/out my husband, mother, and father-in-law (3 of the most wonderful ppl inthe world) encouraging me unconditionally. It's easy to doubt yourself when you know you are starting the race w/a broken leg...but every step taken brings you that much closer to your goal, even if you're walking slower than the others. Definately keep your smile on, encouraging her and reminding her of her inner potential, etc. I know that the supporters of ill family members can get tired too...hang in there! Your belief in her might be the most important medicine she has!

For the Distance Learning route for her...I think if she is eager and confident in her study skills, she should start with the community college's distance learning classes (they can admit her w/out a GED--a seldom known secret of homeschooling high schoolers...my friend got her associate's instead of her GED, that's a real time saver). If she prefers to get her GED, she might still find the community college a good starting place bc they usually offer what every freshman needs to start out w/ (i.e., psyc 101, phil 101, eng 101, etc.). Let her take even just one course to start. If she does well, and she should w/just one, it will build her self-confidence and she will feel more motivated to continue and take a couple more classes next semester. It need not be all or nothing, I'm sure you know.

Some helpful webpages for searching for the right college:

www.findyouronlineschool.com

www.directoryofonlineschools.com

www.edu-directory.org

www.50states.com/college

I did a small scale search and figured that she will probably not find a DL for fashion...but she will find many, many options for legal studies. If she gets her GED, she can get her associates, bachelors, and masters in legal studies, criminal justice, and a couple related fields through Kaplan University.

I highly recommend signing up for more information and allowing college representatives to call your home. Many of the totally online colleges have private webpages, not accessible w/out a password. The rep will give you a Prospective Student password so that you can view their services first hand.

More later

Hope this helps some...

Masumeh