Recovery From Life-threatening Orthostatic Hypotension

[cathielu]

Hello! My driver's license was reinstated this week. Yay! I applied for a job making home visits, teaching children with developmental disabilities. I can set my own hours. I am going to start at 2 to 4 hours per day. It is a real blessing to drive again.

Love,

Catherine

[corina]

hi catherine,

you?re on the right track!!! congratulations on this big achievement. now go and hit the road

take care,

corina

[Star382000]

Dear Persephone,

Thanks for asking. I have been asking Heavenly Father these serious questions, and I am grateful to have Him help me recover and understand what has been happening. A resting heart rate of 100 was the first sign that my circulation was faltering, so I knew that I was propped up too far too soon. When my resting heart rate was 100 then I was having severe fatigue and chest pain.

I really did have two near-death experiences on the tilt table, with my systolic blood pressure quickly dropping into the 40s and my heart rate speeding up, then slowing into the 40s because it was not receiving adequate blood supply to function normally. That was a terrible experience.

Love,

Catherine

As previously stated, a resting heart rate of 100 is not bad at all everything considered and I am confused as to how the propping up can help at all. Can you clarify if it was your feet that were up or your head? Because if it were your head than I am even more confused because that's directing the blood flow away from your heart and brain Also, if you could not stand, how did you manage to jog at all much less a total of 8 minutes a day? I'm very curious

[MightyMouse]

Star, head up is typically the way that the bed is to be propped--and it's a research based treatment. See the "what helps" section of the main DINET site, skim down and you'll find the following:

Elevating the head of the bed 4-12 inches has helped some POTS patients become less symptomatic. It has been reported that elevating the head of the bed generates mechanisms that expand plasma volume (Low, 2000).

[flop]

Star,

initially Catherine couldn't stand at all and had to lie down in bed or in a fully reclined wheelchair all the time (see her picture on the "Faces of DINET" website.

She has persevered with retraining her body to accept being upright. I think from her posts that she gradually inclined the head end of the bed until she was as upright as possible then worked on increasing her sitting upright tolerance and standing tolerance.

Yes being head up does cause the blood to drain away from the brain and make you symptomatic. But by carefully controlling the degree of tilt and therefore the degree of stress placed on her body Catherine has succesfully taught her body to tolerate being upright. Really she has made dramatic progress and it shows that in some individuals perseverence with such a regieme really can work.

My situation is different in that I can stand and walk (in fact I work full time) but sit down as much as is possible. Both of my cardiologists have advocated that I try tilt training at home. What they want me to do is to stand with my heels about 25cm from the wall and lean backwards to rest my shoulders on the wall. I am to stay like that until I faint. They think that I should be able to build up to standing tilted like that for a full hour every day. It is not risk free as you need to ensure that the area arround you is clear of furniture and well padded and that there is someone with you to help if needed.

I am not doing this myself at the moment as I live alone and my flat is too cramped for there to be enough space for me to faint without hitting something solid.

I hope that helps to explain how Catherine retrained her body. As Nina said, check out the "What Helps" section in the main DINET website (link top left of the screen) for more information on the research that has been done on this technique.

Flop

[flop]

Catherine,

it is great to hear that you are continuing to do well. Congratulations on getting your drivers licence back - that must have been very exciting to have even more independance.

Good luck with the new job. It sound like it should really suit you. Working with childeren, especially disabled children can be so rewarding. Your experience will help you see the tiny improvements that others might not appreciate but you know how all those little steps can add up to make a big difference in someone's quality of life.

I'm assuming that as you are in Arizona that all of the homes you will have to visit will have air conditioning??

All the best, and let us know how you get on,

Flop

[cathielu]

Hello! Yes, I am working in Arizona. I have been in training this week. People's homes are air conditioned here. I don't have the precarious symptoms when I get hot anymore - except for the usual symptoms that the average person has after hours of extreme heat.

When I started battling back, I was able to jog for two minutes at a time before my circulation was failing. Now I can go for longer since I have strengthened my blood vessels.

I would not go with the doctor's instructions to stand until you faint. I would stand until either my blood pressure was down to 90 for the systolic, or until my heart rate was up to 100, or if I was getting nauseated, had chest pain, or was having foot pain. I carefully measured the time and knew how long I could safely do it, and kept to that schedule, starting with several times a day. I still make sure that I am standing for three hours a day now, or else my symptoms start coming back within a few days or weeks. There is a window in propping up or standing up, where your body is constantly sending more signals to the muscles in the blood vessels to tighten up. Over days and weeks, that causes the muscles to increase in size and strength, enabling the blood vessels to maintain blood pressure more and more, reducing symptoms more and more.

Be very careful, and be faithful and hopeful. The blessings are worth all of the effort.

Love,

Catherine

[Sunfish]

i have to agree that pushing oneself to stay up until actually fainting doesn't make a lot of sense to me. i can understand trying to push oneself close to that point in order to get out of more of a "comfort zone" so to speak, but for many (or at least some) a full out faint makes symptoms worse for a good amount of time afterward, not to mention the increased chance of injury with regular planned fainting. i think that it makes sense - if trying the standing along the wall plan - to plan for the possibility of a faint (i.e. no glass tables nearby) but i honestly i don't see the merit in trying to provoke a faint on a regular basis. i understand fully the idea of building up a tolerance to being upright...i just don't see that fainting is a necessary part of making this happen (and see that it could in fact cause harm or more of a setback, at least for some).

on the other hand, using a systolic BP of 90 and a HR of 100 as a stopping point would be incredibly conservative for many people. it obviously worked for you catherine & i'm not saying that it might not be effective for some, but for some people those numbers would actually be good...such that if they used those numbers as a stopping point for being upright they would be afraid to ever get up at all. and i would hate for anyone to unneccessarily be scared in thinking lower BPs or higher HRs mean they shouldn't be up & around to the extent that they are able. POTS/ tachycardia isn't something i have on a regular basis anymore (before anyone gets jealous, it's b/c my HR no longer compensates for BP drops, so it's NOT a good thing or an improvement in how i feel...i'm much more limited now than i was then), but when i did have it, even when best controlled on meds my HR was ALWAYS far above 100 when i was upright (standing or at times just sitting) and my systolic BP under 90. and my BP continues to be under that on a regular basis. i've seen numerous autonomic specialists, read a lot of research, etc. and have never heard or read anything indicating that these HR/ BP readings are in & of themselves of any danger. obviously there are points at which they can be dangerous and/or they may correlate with increased symptoms at various "thresholds" (which vary from person to person, at least to some degree). but while i may have never felt well & had to push myself extensively at times, i was able to do a lot with pretty low BPs & high HRs for a number of years so wouldn't want anyone to think that certain numbers are a mandate to stay seated/ lying down & not do as much as you are able.

melissa

[yogini]

Catherine, you said your circulation started to fail after jogging for a couple of minutes - does this mean you felt faint?

Melissa, when I am lying down and my HR is 100, it is highly uncomfortable for me - not dangerous but uncomfortable enough that I cannot sleep, get drenched in sweat, etc. And my normal lying HR is somewhere in the 70s - my symptoms usually start upon sitting and worsen upon standing (where I would not flinch, and might be thrilled, if my HR were 100). So it might depend on what your baseline numbers are in the first place. That being said, I'll go so far as to say that I'm not sure that tilting the bed upward would be effective for most of us as it was for Catherine. But I guess we're all different and anything that works for some of us is a good thing.

I tried the "leaning against the wall training" when I first developed POTS and I did find it mildly helpful. I am not a fainter, but I would never push myself to the point of extreme tachycardia or lightheadedness - certainly not fainting. I actually found practicing walking in small increments a lot more effective than the wall leaning.

[flop]

Thanks for the replies about the wall leaning / tilt training that I was advised to do. Both my general cardiologist and my electrophysiologist have advised me to do tilt training on a daily basis.

The EP said to stand for as long as I could then sit down just before I thought I was going to faint. I did that religiously twice a day for 2 months whilst off sick a couple of years ago and I did manage to increase my standing time from 2 mins to 15 mins.

When I described my "success" to my general cardiologist he told me that it would only work prorperly if I actually made myself faint. At this point I was fainting up to 5 times a day during noraml life so bringing on extra faints didn't sound like a good idea. I tried it twice but I got so scared of the faint that my heart rate would soar from worry even more than the POTS!

I stopped tilt training 2 years back when my flat mate moved out and I was living alone - there was no way I was going to risk fainting deliberately without someone there to rescue me. My current flat is just too small to have a suitable bit of wall to lean against.

Flop

[cathielu]

By my circulation failing when I was jogging means that I felt faint and knew that I needed to lie right down.

Love,

Catherine

[doctorguest]

Flop, I am going to be blunt here, but I think your cardiologist who thinks that you could not improve your orthostatic tolerance unless and until you purposefully faint, is ignorant. The idea of syncope treatment is to prevent syncope, not to make it happen voluntarily by standing until you faint. The doctor clearly does not understand the autonomic nervous system or the management of patients with these disorders. You are wise not to follow his advice.

Like others suggested, it may be beneficial to gradually increase standing time through graded exercise program and increasing physical activity as tolerated. I am not sure that standing passively against a wall is beneficial for the majority of patients with POTS. I believe that exercise is more effective than just standing because it builds up muscles, especially in the legs, and improves cardiovascular function; both are helpful in patients with POTS.

[dizzygirl]

cathielu.. while i think it is great that you are having such wonderful improvements.. and that you are getting a life back driving working dating.. that is wonderful and a blessing...

BUt I do have a few questions... if i may ask...

What makes your OI life threatening? Ive had my Bp drop off the map alot.. and have had tons of Bp's where ive had no bottom number.. or had a botom number but it was too low to read..Uhm even with Bp"s that low and non exsistant Ive never been told my Bp's are dangerous..and) i am a fainter--the most dangerous part for me with bps' dropping so low is the acutal falling in a faint and hurting myself) or life threatening.. same with Heart rates.. Ive had extremely high Hr's over 200bpm.. so im wondering how your was determined life threatening.. do you have a differnt form of dysautonomia?

so I guess im wondering what criteria made your OI life threatening? I dont mean to sound confrontational or anything.. and im very happy for you that your having such success with rocovery anybody living with this disorde and gets improvement of any kind is truly blessed...I hope that you stay on the recovery path... I was jsut curious tho about my question for you above...

[kjdube]

OH can be life threatening to children and the elderly. Don't know how old the original poster is but she might have been diagnosed as child and being a child could be why she knows it as a life-threatening illness.

For an adult... I don't think there have been deaths reported as such for otherwise healthy adults, where dysautonomia is the only cause of death.

But some believe SIDS may be a form of infant dysautonomia. And in the elderly, in addition to adults with certain types of chronic illness, it has been reported in medical journals as a possible factor, or was present, at death.

[cathielu]

By life-threatening I mean that blood pressure and heart rate fluctuations weaken the body and leave it open to dangers like infections, falling and getting a concussion, getting into car accidents, etc. Anything that triggers fluctuations becomes dangerous, like standing, exercising, eating, being in the heat, or stressful situations. Also, having a vulnerable state in a world where there are many untrustworthy people is dangerous. I have had several dates think that my fatigue and lying down is some sort of invitation and they try to take advantage of me. My life and relationships are so much better now.

Love,

Catherine

[dizzygirl]

ahh ok.. makes sense.. i was just curious.. and needed alittle bit of clarification..

be careful on your dates catherine... some men are pigs...! ..

[DancingLight]

Catherine,

While I find your recovery wonderful and encouraging, I am worried that your term 'life-threatening OI' is misleading.

Did the doctors tell you it was life-threatening? When I just read your response to dizzygirl about why you called it life-threatening--in reality, by your criteria, most of us here would be considered to have 'life-threatening' OI.

I really don't want to be rude, but I really don't want people to be misled. We have a disability that interferes with aspects of life--sometimes very profoundly, but this doesn't mean that b/c we might fall and hurt ourselves or can't drive b/c we might have an accident or b/c people might 'take advantage of us' that our illness is life-threatening. It just means that we have limitations and need to avoid circumstances that put us at increased risk for injury, etc.

I don't want to burst your bubble of joy.

But I don't want new members to be scared that this illness kills. Because unless you have one of the forms that IS progressive or such, it is not considered life-threatening.

I'm also with Melissa on this one--my heartrate, long before I ever got sick was very high--always in the 90s. 100 for me is good. And my bp is always about 90/60. I don't function well at all--and am very disabled, but I don't consider it life-threatening.

I have also never quite heard of the form of exercise therapy you did--running two minutes--usually it is more like recumbant bike, strengthening exercises lying in bed, or short little walks to start. Did you create this therapy yourself? Or did a doctor? And how after 17 years did this become the answer? Also, are you medication free? Have you ever had luck with meds?

I'm very confused!!!!!!!!!! I have tried to follow your post and understand how this all unfolds, but I am a little lost.

Thank you,

Emily

[Sophia3]

Dlight

You are NEVER rude and I am glad you asked for explanation as I am clueless to exactly how this improved OI.

Also, my HR is 120=140 when up so I have no control..and often my low BP is when supine...so what works for one is not great for another.

Also I found this title misleading as well..as I thought that was only in drastic forms of ANS dysfunction (the name escapes me)

Am i thinking Shy-Drager Syndrome maybe?

anyhoo.

[cathielu]

The propping up, then eventually sitting, then eventually standing were the treatment to strengthen my blood vessels and restore normal circulation. The running didn't directly treat my circulatory problem. That and the walking, bicycling, etcetera, are to regain my aerobic fitness, muscle tone, muscle endurance, and maintain a healthy weight.

Everybody's body is different. Men tend to naturally have more muscle mass than women, even without exercising. I think that may also go for blood vessel tone. Maybe that is why almost all the patients with orthostatic intolerance are women. We may just have to put more focus on strengthening and maintaining our blood vessels.

There are people who have suddenly died from cardiac arrest who have orthostatic hypotension. This condition may or may not be life-threatening, but it can certainly be life-stifling and life-ruining.

Love,

Catherine

[Sunfish]

a few additions/ responses, so please bear with me (&/or skip ahead to the "just in general" part....

rita -

i wasn't trying to imply that someone's symptoms couldn't be horribly uncomfortable & limiting at those numbers as i know they are (or have been at some point in time) for many people. i simply didn't want anyone limiting him/herself &/or being unnecessarily concerned solely b/c of certain numbers since - as you mentioned - it varies so much from person to person. numbers are one part of the equation, so to speak, but by no means the only thing to consider. i agree that baseline numbers are likely another part of the equation for many, as well as many other things that are understood (or not understood) to varying degrees. for some the numbers don't always correspond logically with symptoms, meds may improve numbers but not how they feel, people have different tolerances for different symptoms (through no fault of their own...we're just different), different bodies tolerate different extremes (i.e. a BP wherein some people would be unconscious may be "normal" for some), etc.... most importantly though i just didn't want anyone to be limited or even scared by numbers alone. they are certainly helpful indicators for doctors, patients, treatments, conditioning, etc. - to varying degrees for different people & at different points at time - but at the risk of sounding like a broken record, i wouldn't want people to place more importance on them than they are due.

sophia -

you are correct that shy-drager (also known as multiple systems atrophy) is the dysautonomia diagnosis that is considered terminal/ life-threatening. autonomic failure is also generally considered progressive but not in and of itself terminal in the way that shy-drager/ MSA is.

just in general -

there are in fact a number of situations where autonomic dysregulation CAN be life-threatening, but none of these are in relation to diagnoses that most DINET members/ participants have and/or what most here think of as dysautonomia. without going into a lot of detail, familial dysautonomia, a specific genetic condition (NOT the same as the fact that many on the forum have family members with autonomic issues), can be life-threatening; some people with spinal cord injuries &/or brain injuries can have autonomic "crisis" that can be life-threatening. additionally, an individual could have an underlying condition that results in some type of autonomic dysfunction wherein the underlying condition rather than the autonomic dysfunction itself would be considered life-threatening.

but, as several have now pointed out, orthostatic intolerance is not in & of itself considered to be life-threatening in regard to how "life-threatening" is generally understood (rather than extrapolating that OI could certainly "threaten" one's quality of life). catherine i too will admit that i was/ am a bit confused by your use of "life-threatening" but am perhaps wondering if you were intending to say "life-limiting"? based on your descriptions this seems to fit a bit better (and by no means makes your improvement any less wonderful, as i'm sure all would agree) as "life-threatening" is generally defined as something that actually threatens the very existence of life, not "just" its quality.

there are situations wherein complications related to someone with "just" autonomic dysfunction (rather than the autonomic dysfunction itself) can in fact be life-threatening, but these are certainly the exception rather than the rule. without wanting this post to become about me, as many of you know this has been my reality over the past year as there have been three times werein i've come very close to losing my life due to polymicrobial septic shock, a complication of my intestinal dysmotility which is part of my autonomic failure/ progressive neuropathy. and while i've had varying degrees of dysautonomia for years, facing the very real possibility of death, being offered hospice care, etc is MUCH different than having severe limitations due to chronic illness. despite popular belief &/or society's dislike of dealing with end-of-life issues, facing death isn't necessarily better or worse or easier or harder than living with serious chronic illness, but it is very very different.

so while i've been hesitatant to chime in about the technicality of the phrase "life-threatening", as more people have raised questions &/or expressed confusion i felt the need to step in with some thoughts/ clarification & perhaps the possibility that the confusion may be one of misused terminology.

melissa

[flop]

Thank you Melissa for your informative post.

I hope that you have reassured any concerned readers that whilst a lot of us face daily battles with illness and some are seriously ill, that very few people reading this will actually have a life-threatening form of dysautonomia. Not to say that there aren't members who's lives are threatened through other medical problems (we can all still get heart disease, cancer etc).

Catherine's recovery has been remarkable and I hope that others can take a message of hope from her story.

Flop

[yogini]

Melissa, I agree with you that those numbers aren't cause for concern for most people - even I'm not concerned, just uncomfortable...and I would feel safe moving around. My POTS is moderate and, though we are all different, IMHO the numbers mentioned generally would not be indicative of severe POTS/dysautonomia. Emily, thank you for your questions - I'm not sure I understand either...

[Sophia3]

Melissa

Perhaps an edit in the TITLE of this thread may ease concerns.

BLESS you for chiming in with so many words (THAT took a LOT of energy!!!) to explain the dynamics of many situations including yours.

As one who has been on premature Soc sec and unable to work and losing my OWN place to live, yes, indeed, CHRONIC ILLNESS STINKS and life limiting and quality of life limiting INDEED.

And I know you Melissa have had some brushes with, well issue of "Going over the Rainbow to see Dorothy and Toto" and thankfully are still with us.

Thanks again for your insight and response to many of us here.

MUCHO GRACIAS!

xoxo

Soph

[cathielu]

The reason I take this condition and its toll and dangers so seriously is because full awareness of the problem is the first step toward recovery. Every effort and change I have gone through during my recovery physical therapy has been worth it.

Love,

Catherine

[Maxine]

Oh dear Flop,

I am so glad you stopped that sort of tilt training. I can't understand what made that doctor so ignorant about this. That is simply irresponsible, and puts you in danger. I know there are plenty of other exercises to help tone your body to help lesson the effects of OI. I also feel when a person begins an exercise routine, especially from being bed ridden for months, needs to do any reconditioning program with supervision.

Sunfish------------thanks for your post. You helped me make some sense of this----

I'm tired, and my BP is really low tonight------so I'm going to spare you all of my thoughts on this---

Besides, Emily, and Sunfish have made some very good points----

Take Care,

Maxine :0)