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Low blood pressure


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#1 Margaret

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Posted 22 November 2011 - 07:26 AM

Hi Everyone,

I have a few questions about low blood pressure and UCTD/Raynaud's/Sjorgens's being the culprit. Gareth's had the diagnosis of Orthostatic hypotension since he was 15 years old and the doctors said he'd outgrow it. Well, two weeks ago he was hospitilized because of what appeared to be a major seizure. The cardiologist at the hospital found out his BP was the reason......110/70 laying down, and then, dropping to 70/48 when standing up. His pulse also makes a jump from laying to standing. He's been on a med now to raise and stabilize the BP for 2 weeks and no change.

Since these illnesses cause changes in the blood vessels, is the medication really going to help or is this something that we will need to watch constantly? Has anyone had the diagnosis of Dysautonomia added to their records because of changes in veins/arteries do to Sclero/UCTD, etc? He had been falling a lot but we attributed it to an inner ear infection and his mastoid bone surgery in Oct. That is healed but the dizziness continues. I have read where others have low BP.....is it a constant feeling all day? Perhaps, that explains why he prefers to sit all day and do nothing!!!

Thanks for all you help.
Take care, Everyone.
Margaret
Mom to Gareth, 23 years old, DS/ASD

#2 Shelley Ensz

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Posted 22 November 2011 - 01:00 PM

Hi Margaret,

Well, that's a pretty complicated question! First of all, please give Gareth an extra warm hug, just from me. I'm sorry that he has been more sick, and hospitalized, and hope that he feels a bit better just by being home with you.

I have had orthostatic intolerance (which is a subcategory of dysautonomia) for many years. I have to be careful to drink enough fluids every day, and also to eat enough salt. I had to switch to sea salt for our home cooking because I dislike the taste of regular table salt, so I would avoid it. I have to be careful changing positions or standing too long. I usually get a bit of a warning signal when I've maxed out, which is a sinking feeling, like an elevator going down too fast. When that happens I have to sit down immediately or I am at risk of fainting or just passing out cold.

Doctors have never even discussed it with me since I was initially diagnosed, I suppose because I keep it fairly well managed, now that I know what it is. It is also a force that makes most of the popular forms of exercise difficult to tolerate. However, it should not be used as an excuse to be entirely inactive because that can worsen it.

Many years ago, I tried working a part-time job in an office and to do that, I had to try to pass myself off as being normal (healthy). It was usually just fine because my job description was to do nothing at all. Seriously, I'm not kidding! I was just a placeholder so they wouldn't lose the funding for the position, in case they ever needed someone there to actually work some day. So I could work, or rather, not work, any time I wanted and basically sit quietly the rest of the time.

Well, wouldn't you know it, that was just too boring for me. So first I started by throwing birthday parties for everyone in the unit, complete with birthday cake and ice cream. Then I started filing all these old files that were laying around getting dusty.

Which was a major mistake! Down to get the file, Up to walk to the file cabinet, Down to put the file in, Up to go get another file, etc. and then I helped out on a rush project, and I got so involved in it that I forgot to drink, and have something with salt that afternoon.

I became very ill and ended up in E.R. that night. They chalked the whole thing up to orthostatic intolerance, as I had zero blood pressure on standing. Some I.V. fluids and I was good to go, but limp as a dishrag for days. Since then I have been a lot more careful.

But it's truly impossible to know how much is too much, and I think it is a moving target that changes every day. So Gareth might feel safest just doing nothing at all, but then that puts him at risk of Sitting Disease (did you see our article on that a few weeks ago?) so some sort of gentle activity needs to be built in to his everyday activities, or it will probably get even worse.

It's not really a constant feeling, I don't think (how do you separate it out from everything else that's going on?), but rather often a bit woozy upon standing, or a feeling of unsteadiness, or dizziness when standing too long ("too long" being the most nebulous thing ever), and thus feeling better when just sitting, not moving your head or body.

Laying down doesn't feel quite as good because the blood pressure dive can be more severe when going from laying down to standing up. It can be helped by sitting up until you feel clear (a few seconds or longer), and then standing. Recliners are great because you can lay down, but pause long enough sitting up to get your bearings

It can strike in the middle of walking, and cause some unsteadiness. I've had some unexplained falls but have never known if the orthostatic intolerance was the cause, or not. It's pretty hard to tell for most of those things, after the fact (and I also have autoimmune ear disease, too.)

For me, the real trick was lots of water (caffeinated drinks don't count) and enough salt, regularly. During worse spells, I find the "sports drinks" handy; there's a name for them, like you use when you're sick, and the word just escapes me at the moment, but in moderation, of course.

:emoticons-group-hug:
Warm Hugs,

Shelley Ensz
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Hotline and Donations: 1-800-564-7099

The most important thing in the world to know about scleroderma is sclero.org.

#3 Amanda Thorpe

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Posted 22 November 2011 - 02:35 PM

Hello Margaret

I can't add anything to what Shelley has said but wanted to give Gareth some :balloons: for doing so well with so much and some :emoticons-group-hug: hoping he feels better some time soon.

For you :you-rock: because of all that you do.

Take care.
Amanda Thorpe
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#4 Buttons

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Posted 22 November 2011 - 02:56 PM

Hi Margaret

My own daughter began fainting when she was 16 years old and it got so bad she was passing out about 15 times a day,. Her blood pressure was always in her boots so she would pass out when standing etc. Like Shelley she was told to keep her fluid intake up and to increase her salt intake but this didn't help and she was eventually put on a drug called Midodrine which has helped considerably. She now manages it well and only faints on the odd occasion.

I do hope you get some answers for him. It is so worrying when it is your child.

Buttons

#5 Joelf

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Posted 22 November 2011 - 03:47 PM

Hi Margaret,

I also can't add anything to Shelley's excellent advice but I do hope that Gareth soon feels much better very soon.

Best wishes,

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#6 Margaret

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Posted 22 November 2011 - 06:55 PM

<<I have had orthostatic intolerance (which is a subcategory of dysautonomia) for many years>>

Hi, Shelley ,

What's the difference between O intolerance and O hypotension? Dysautonomia is a new one for me and it's been brought up as a possibility for the increase in his BP incidences. I guess the other concern is that his pulse rises 20+ beats when his blood pressure drops. On good days, he's on the floor because *legs weak* or *dizzy, Mom*. On bad days, he tells me *night, all black*....meaning he passed out completely with no warning.

On Tuesday, we go see the Immunologist to decide on these IVIg treatments. I'll keep you all posted on that outcome.

Thanks so much for all your help....it's so much appreciated.

Margaret

#7 debonair susie

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Posted 22 November 2011 - 08:08 PM

Oh Margaret, you are so conscientious! How difficult, trying to keep track of all that's going on with Gareth. I really feel for you two!

We appreciate your keeping us updated on this.

Take care of your self also. :spoon: :balloons: :emoticon-hug:
Special Hugs,

Susie Kraft
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#8 Snowbird

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Posted 22 November 2011 - 08:48 PM

Hi Margaret

I can't add anything here either to help but I too hope Gareth feels better soon. Hugs to you both.
Sending good wishes your way!

#9 Shelley Ensz

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Posted 22 November 2011 - 09:21 PM

Hi Margaret,

There is a subtle difference between orthostatic hypotension and orthostatic intolerance. Orthostatic intolerance is diagnosed with tilt table testing. Orthostatic hypotension can be diagnosed taking the blood pressure sitting and then standing. I may have both because I was diagnosed with orthostatic intolerance but unable to do a Holter monitoring test because every time I stood up the machines (a whole assortment of them) zeroed out and the alarms went off, so in other words, I also flunked the orthostatic hypotension check; but I also have labile hypertension (high blood pressure) that is just plain dysregulated, generally speaking. And who knows why. It just is what it is.

The good news is that now that Gareth is diagnosed with it, it can be both managed and treated. It's not a lethal condition and only serves to make life more interesting. Dysautonomia only means dysfunction of the autonomic nervous system. I also have a very poor sweat response, diagnosed with a thermoregulatory sweat test, which is part of dysautonomia. But all of it is totally beside the point because there is absolutely nothing they have done for treating a poor sweat response.

Dysautonomia can hang around with autoimmune diseases but it's nonspecific and there can be many other causes, too. I don't know if it's a possible symptom of Down's Syndrome, or not. Did his doctor's mention any possible correlation with Down's?

I know the words are big and scary. But Gareth is already living with the end result, and things will get better as he begins treatment and you learn ways to help prevent the worst of it. I simply revised my lifestyle to drink ample fluids, include salt even though I often feel averse to it, take care standing up, and sit down immediately when "that feeling" hits so that I don't faint (which could be potentially damaging or even lethal.)

That's going to be harder to teach Gareth. But there is a certain feeling, for me a sinking sensation, and if Gareth can identify what it is for him, then fainting spells can be avoided if you give him instructions and permission to sit down immediately, no matter where or when it occurs. I've had to sit down in parking lots, sidewalks, and store aisles. It can make a mess! But it would be a much bigger mess and attention-getter if I ignored it, and passed out. So Gareth needs to know to just sit, anywhere, when needed.

Perhaps you could make a game out of it and give him a reward for sitting? And especially compliment him if he notices the feeling and just sits somewhere. Hopefully he won't get so entranced that he sits anywhere just to get the praise. But really, who cares, if he is also sitting at the times he most needs to. It helps to put his head between his knees, too (head down) (Later Correction: It does NOT help to put head between knees, see more info in this thread.) but the most important part is just getting to safe ground.

:emoticons-group-hug:
Warm Hugs,

Shelley Ensz
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Hotline and Donations: 1-800-564-7099

The most important thing in the world to know about scleroderma is sclero.org.

#10 miocean

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Posted 23 November 2011 - 10:10 AM

I experienced sudden drops in BP in dialysis. While you are on the machine your pressure is monitored and if it drops, the machine alarms. The nurse or tech would then make adjustments including adding saline. Before you are allowed to leave a sitting and a standing pressure is taken. Quite often mine would drop to 70 over something. They do not let you leave until it comes up. There were many times I passed out. I could feel it coming on sometimes with a wave of nausea, sometimes I would throw up. Some centers would have chicken broth for salt, or mine would give me saltines or pretzels (even though no food was allowed, the nurses kept in hidden ;) ). Worse case would be they would have to open up my catheter and give me saline. So salt does help bring the pressure up. Margaret, maybe keeping some salty foods on hand would also help.

Interestingly, when BP drops, they put your head BACK. You are in a reclining chair, so it is easy to do there. I was told never to put my head between my legs, contrary to everything we have all been taught.

I have a vasovagal response. My school nurse told me if I ever felt faint to get down on the ground as it is less far to fall, similar to Shelley's technique. :D

Tell Gareth HI!

miocean
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#11 Shelley Ensz

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Posted 23 November 2011 - 10:37 AM

Miocean, that's great to know about putting the head back. Nobody ever told me that! Another very handy thing to know. Thank you!

:emoticons-group-hug:
Warm Hugs,

Shelley Ensz
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Hotline and Donations: 1-800-564-7099

The most important thing in the world to know about scleroderma is sclero.org.

#12 Margaret

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Posted 24 November 2011 - 11:03 AM

Hi Everyone,

First, on this beautiful, sunny Thanksgiving Day, thank you all for the kind words and support. It's much appreciated and needed. I hope all are spending a relaxing day with family and friends.

Shelley....the Cardiologist wants to do that Tilt table test on Gareth. He's scheduled to see him in Jan to decide. Gareth also doesn't sweat properly and his body temp can be anywhere from 96 to 99 at any given time during the day. It's definitely an autoimmune issue with him, I have many friends with children who have Down Syndrome and Autism, and Gareth is definitely a *one of a kind* !!!

Miocean.....I will have to remember to tell Gareth to put his head back when he feels dizzy. The nurse and doctors did tell me to get him to kneel on the floor, though.

Take care, Everyone, and don't eat too much!!!
Margaret

#13 summer

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Posted 27 November 2011 - 08:48 PM

I also have low blood pressure, it has times dropped to 85/60 or thereabouts, my Cardiologist who I see for Tachycardia, wants me to eat more salt. Since having my Ileostomy, I have been told to add salt and also a banana into my diet, for pottasium.

I constantly feel light headed and sometimes shaky, so I also drink plenty of fluids, which helps sometimes.

#14 Amanda Thorpe

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Posted 28 November 2011 - 01:26 PM

Hello Summer

I was wondering how you were getting on because you had such difficulties after your surgery. I hope you continue to improve.

Take care.
Amanda Thorpe
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