Question About Blood Pressure

[Maxine]

On November 2nd I had an appointment to have my loop recorder downloaded.

When my BP was taken by the Medical assistant is was 98/80 sitting, and 80/70 standing. My BPs have been running really low for quite a while, and now they have proof, as they saw it with thier own eyes. My question is, do you think they should have let me leave the office that way? There was only 10 between the diastolic and systolic on the standing BP, and 18 on the sitting.

After the ME saw the BP reading, she put the stethoscope on my chest, and her fingers on my radial pulse. She was very nice, and seemed really sharp, and covered everything better then some of the nurses do when I go in for appointments.

I'm assuming she let the doctor know how low my BP was. However, I'm a little annoyed that no questions were asked after the BP reading. I told the ME how bad I had been feeling, and I'm assuming she did her part, but I feel that someone should have come into the office to see me at least.

Tuesday I'm going in for a barium lower GI, and I will need to do a complete bowel cleansing. With my BP being so unstable I'm concerned, and not all that sure I'll be taken seriously if I call the office and ask what I can do to prevent problems, considering they let me leave the office that way.

Maxine :0)

[pat57]

Do you drive?

I think that would be the main concern.

And I think you have to watch out for dehydration- big time. Since (If I recall correctly) one cause of narrow pulse pressure is low blood volume .

[Maxine]

Yes I do drive, but I just putt around town, and don't go on the freeway. I drink a lot of fluids, and I'm never without my water bottle. IV hydration was never mentioned to me.

I live in the vincinity of one of the main ANS Docs. In fact this BP was taken at the ANS doc's office. I don't understand why I'm not having this addressed further. I'm thinking maybe there is a communication breakdown. I picked up the records today showing the low BP in black and white. I thought it was important to have this in my medical file at home-------mainly because there is such a problem with communication among medical professionals.

My blood volume has never been checked, but I do know I pool pretty bad, as I can actually see it. I think the pooling is a result of poor vascular tone from the EDS. My EDS doc said I have vascular involvement, and this causes the poor vascular tone. For some reason everything seems to be getting worse. I know there is also brain stem compression, and a lesion on medulla was mentioned along with the lesions in the peri-ventricular part of brain. This can also affect BP.

I'm just surprised I'm not being followed more closely. I'm on full disability now, so my body isn't challanged as much. This helps, but just trying to run and errand can be difficult--------------just trying to get around a store is insanely challenging.

Maxine :0)

[pat57]

I think with a bowel cleansing you will be dehydrated and should not drive for a couple days. And who is doing the GI test?

Same office?

"Dehydration is one of the worst states a POTS patient can be in. It is very important to always stay well hydrated."

from what to aviod at the potsplace web site

[Maxine]

Thanks Pat57,

My brother's surgeon ordered the GI workup due to a history of cancer in my family. My brother was diagnosed with colon cancer in late 2005, and had a bowel resect in January of 2006. He's been on chemo ona dn off. Along with the bowel resection, she also removed 17 lymp nodes that the cancer got into. My mother just died early this year with cancer. We don't know where hers started, just that it was terminal, and it was diagnosed three days before she died. Her brother died just two weeks after she id of colon cancer.

My brother just found out the cancer has spread to his liver. We got the bad news today. There are two lesions on liver, and about three just outside of his liver. My cat scan results showed thickening of duodenal wall, and differentials listed were diverticulitis, duodenitis, and even inflammatory bowel disease or neoplasm whihc is less likely. I called the surgeons office, and said I want the surgeon to give me her thought because I was really scared due to my family history. She was really busy, and between surgeries today, but she had her nurse call and reassure me that she looked at the CT scan, and I have inflammation of the diverticuli. I asked if the CT showed the large bowel, and the nurse said it covered the whole abdomin.

Maxine :0)

[morgan617]

My guess is, since you are getting yourself to these appts (if you go by yourself) and you are driving and not having syncope...they are assuming it is not as big a problem as you feel like it is.

Do you just come out and ask them about it? For instance, did you tell the gal that you felt cruddy and is it caused by your low bp and narrow pulse pressures?

My cardio thinks until I go into vtach and actually croak, my arrythmias are completely insignificant and I am completely unable to drive or get anywhere without a wheel chair.

I am in NO way justifying their apparent disinterest in what's going on, I am saying that some doctors and health care providers just don't get it, even if you really look and act unhealthy, let alone if you are able to drive and shop etc. I am having a very hard time trying to get my thoughts across the way I mean to here.

I have never seen a doctor concerned about low bp's in the context of an office visit, unless the patient is actually syncopal. Before my hypertension suddenly appeared, my bp was always like yours. I never felt well, was always fatigued and stuff, but I was always told my bp was "great." No connection between that and how I felt.

As far as the cleansing, hopefully you are doing a go lytley or half lytely, as you don't have the same problems with dehydration. These do not deplete fluids from your system, they just liquify the stool in there and get rid of it. The others can pull fluids from the cells and be dehydrating. Even with the lytley's, it's important to drink as much fluid as possible. Did they say why you are having a barium enema? They are not nearly as accurate as colonoscopy.

I am not all diminishing your symptoms because you can drive...I'm just saying that whether you can or not, whether you appear ill or not, sometimes it doesn't make any difference, if you are up and around, most health care providers are not going to deal with low bp's as opposed to high bp's. Sometimes they don't even deal with high ones, and I don't think even most cardiologists deal too much with pulse pressures.

In all my years of nursing, i never once heard a doctor mention concern over that. Unless it is a cardio that actually uses these as research or something, I just think it's not addressed. Like long QT intervals. Not one cardiologist has ever mentioned mine, although the risk of sudden cardiac death is greatly increased by them. If I were you, I would just point blank ask them. My guess is, they will blow it off and tell you to drink more fluids.

I hope you can get this addressed and your concerns taken care of. Good luck with the barium study. I'm havin my gastro and dilatation on Monday, so will be thinking of you. morgan

[juliegee]

Maxine,

Does the ANS doctor know that you are going to have the colonoscopy? If not, you need to let him (via his nurse) that you have the procedure planned. I would think it'd be very important for him to communicate with the GI who will do the colonoscopy. I know that Addison's patients (with very similar BP's) are regularly hospitalized with IV's for their prep's. My Mom, who also has POTS and is probably quite a bit older than you (68y/o), ran into some trouble with her last colonoscopy prep. Her tachy got a bit uncontrollable. They immediately hooked her up to an IV ad stabilized her for a few hours prior to the procedure. She claims there won't be a next time, but if there is, her doc will insist on IV hydration during the prep. You definately need to discuss this with your ANS doc. Don't wait for him to bring it up!

I used the Half-Lytley for my last prep. So much better than the full gallon!!! I just had 4 large glasses to drink that I spread out over the course of the evening. No chug--luging for me! My Mom used that tiny bitter bottle- I forget what it's called. It's just a few ounces, but really vile.

I wish you all of the best. Definately, let us know how it goes BTW, I've been following your BP's as mine are very similar. I noticed that your pulse presure seems to be narrowing. Hmmmmm.

Julie

[Maxine]

Well Friday is the only day I can contact them, and they will most like not be in the office Friday.

My Test is Tuesday, and I have to start on liquids on Sunday. The doctor and I went with the barium enema because of my drug sensitivies-----we want to avoid sedation that comes with colonoscopy. We were going to do virtual colonoscopy, but insurance won't pay. The barium enema study can visualize polyps, but not small ones, so i'll have to get them more often.

Here's the bowel prep:

BOWEL PREPARATION INSTRUCTIONS

READ CAREFULLY; DO NOT EXCEED RECOMMENDED DOSAGE AS SERIOUS SIDE EFFECTS MAY OCCUR. (SEE PACKAGE FOR OTHER IMPORTANT WARNINGS.)

Two days before your procedure, purchase 3 oz. Phospho soda.

Follow the steps listed below, or as otherwise prescribed by your doctor on back.

If you are taking medication (including aspirin or aspirin-containing products), consult your doctor for additional instructions before beginning this procedure.

2 Day Clear Liquid Diet (NO coffee, milk, pulp)

Suggested Clear Liquids:

Tea (NO sugar or creamer) Bouillon

Jell-O (Lemon or Lime) Apple Juice

Water Hard Candy

Clear broth in a can 7 Up/Sprite

Popsicle (NO red or orange) Frozen Icy Treats

DAY BEFORE EXAM:

Clear liquids ALL day

Start drinking Phospho soda at noon. (Follow mixing instructions on box.)

Mix 1.5 oz. Phospho soda with 4 oz. of liquids, repeat other half at 5 pm.

Bowel movements should be CLEAR by evening.

NOTHING TO EAT OR DRINK from MIDNIGHT on the night before.

NOTE: If bowel movements are not clear, please call our office (419.251.1656) and inform us as the procedure may have to be cancelled.

[Sophia3]

A note to the wise for ME..my ANS doc told me once, that chicken soup BROTH helped him thru many scopings. It's best to make homemade chicken stock as it has potassium in it and put plenty of salt in it.

I did that when I had to do a bowel prep for my hysterectomy last year. Chicken boulion tastes DISGUSTING.

I got sick of sweet drinks.

Chicken soup If you make some, put big pieces of veggies in it if you want but STRAIN it with a super fin strainer. I found as long as I drank the chicken soup. I was fine. I even ran out of the batch I made and diluted Campbells chicken noodle and double strained that!!

I drank some bottle that was fizzy in a big 12 oz bottle. The only gripe I had is I FELT PRESSURE and so bloated. My gynecologist even came in the AM after surgery and said the surgery was a piece of cake but then looked at me and asked "What the hello kind of bowel cleansing did you do??? your bowel was so distended I had to keep pushing it out of the way. In 1000's of surgeries I have done over the years, NEVER EVER have I seen such bloat.

Well I was embarrassed but my ANS doc said it was the ANS not contracting and releasing probably. I often wonder if it wasn't because I used a hot sock on my abdomen constantly to prevent the cramping horror stories I had heard.

By relaxing my insides with heat, the bubbly built up badly in my lower G.I!!! ;)

I do know I could never do the golytely stuff due to the amounts and the taste. I gag easily but I have read there are new variations, like Morgan mentioned and I think I evern heard of tri lytely!

I had a relative who was a doctor who said theGolytely stuff was the pits and he vomited it up!!

so for me, the less I have to take in to cleanse, the better.

But seriously. make some chicken broth of if there is a GOOD BRAND to drink buy some.

I found the hot soup soothing.

But next time, I will skip the hot sock to relax things as I almost exploded air on the doctor!

What a thing to be FAMOUS for.

Good luck.

[Maxine]

Too funny Sophia!

I'll remember the chicken soup broth. Bloat is my middle name. Last night I looked 7 months pregnant. I was so disgusted---

Thanks for all the information. I'm praying everything goes smoothly, and I can get this behind me----so to speak........

Maxine :0)

[corina]

hi maxine,

i think that when you are able to come and go by yourself and things don't seem alarming to them (as in that you don't faint or anything) they think that you can manage by yourself.

good luck with the test and take care,

corina

[yogini]

I think also that they focus more on the systolic/diastolic rather than the pulse pressure. 90/60 is considered within the "normal" range of BP. Since your numbers were aroudn there, they probably weren't alarmed. My drs didn't seem overly concerned when my BP was 80/50. I did get midodrine, though. Maybe you should make an appt so that you and your dr can come up with a plan to bring up your BP.

[Mrs. Burschman]

Two doctor visits ago, mine was 80/55. They didn't say anything about it. Last time, it was 105 over 80 (high for me) and they mentioned how "healthy" I was.

I think they're a lot less concerned with low blood pressure than they are with high.

Amy

[Maxine]

Although I am concerned about the low blood pressure seemingly being dismissed, I am more concerned with the narrowing pulse pressure. Even the ME noticed.........

With the trouble I've been having, I would think my BP issues would be addressed a little more aggressively.

However, I can't complain too much, because I still do get around by myself. It is quite a struggle, and there are days when I don't feel safe to drive accross town myself. My Dad lives on the other side of town----about a 20 minute to half hour drive depending on the city traffic. If I decide I want to get out, sometimes I'll just drive to my Dad's, rest for a bit over at his house, then he drives to where ever we decide to go. My husband drives most of the time when he's with me. I do drive if he is very tired. He works all day, and sometimes overtime----------he gets worn out.

Today my husband will drive to Sandusky, which is about an hour from here. We are going to his sisters for Thanksgiving.

My Dad will be with my brother Mike & his wife---and all four kids-- . My brother James is going to Penn. with his girlfriend, and his daughters. And Joe is going to be with his wife's family, along with their two grown kids. My Son went to Cleveland with his fiance, and their daughter to be with her family, and they may stop to see us in Sandusky on the way back. On Christmas Eve we will all be together----- .

I hope you all have a wonderful Thanksgiving---

Happy Thanksgiving!----------------------

Maxine :0)

[Maxine]

Is kitchen basics chicken broth OK? It has spices and vegetables in it. It's broth-----but seasoned with these vegetables.

You know what I mean. Anyway, there isn't actual vegetables in it.

Maxine :0)