Noreen

reen, i have an omron measuring bp and hr. you could count heartrate yourself as well of course!

corina

Thanks for the reply, Corina. I, too, have an Omron bp/hr machine. It works well enough, I guess. I get a lot of error messages due to rapidly fluctuating rates. I have never caught an extremely low rate on the Omron - I think just moving to get it makes my heart go into low 60s.

I use a Sportline analog watch/HR monitor. I started using that because I couldn't handle the strap all the time with other HR monitor due to the heat in the summer. Also I can sleep in the watch and do a quick check of HR without pulling out the BP machine right before getting out of bed and then upon standing. The 50 rate after waiting a few minutes happens rarely in the night - it just won't register below that. It has registered for me 50 to 145. Whenever I take my BP it matches the Omron and matches within 2 or 3 beats the equipment at my new Y.

I guess I'll accept the limitations especially as I am now going through a period where my heart races in the middle of the night and I will get readings of 110. Can't stand this stuff.

The lowest my monitor will read is 50.

What types/brands of monitors read in the 40s?

You are right, I was trying to steal a quick shower standing up. Absurd, the things we are penalized for. For those of you who added fainting to their delightful repertoire, if I avoid things like trying to shower standing up and getting really cold then warming up too fast (hard to avoid way up here in the North!), is it likely I will have to worry about fainting in other, less orthostatically stressful situations?

I don't want to stop driving again. I can do so few things that feel normal.

After you started to feel a wee bit better, you began doing 'normal people' things. Avoid those things and you'll be fine.

((hugs))

noreen

You might want to have your back checked out. Many back docs look at dermatones which show connection between spinal nerve root and an area of the skin supplied.

It sounds to me, from your description, like there is something going on with L5. You can check the dermatone chart map here. or wikipedia. A description of myotomes and dermatones can be found here.

Hope things settle down and you get the answers you are seeking.

the other was in the shower trying to shave my legs (I got the "LIE DOWN!" feeling but have always been able to push through it long enough to do things like finish shaving a leg).

Why, after all these years, and now that I am on more midodrine (35 mg total) would I start having these episodes at this point? My only theory is that the increased midodrine dose is dulling the "have to lie down now" feeling and I am pushing farther into it than I realize, but this is new and any input would be very appreciated.

You don't say whether you were standing in the shower trying to shave your legs. This would put you in a bend over position in a warm environment - two things which we are told to minimize. I think that as EDsers age some of these things are harder to ignore. You are on track with how I went.

Your theory on the midodrine is good. It is tough for me to comment as I have always pushed too hard and not done myself any favors by doing so.

Hope things settle down for you,

noreen

First off (((((((hugs)))))) and good luck with the road ahead.

I just was wondering if you tested positive for Ehlers-Danlos Syndrome. (I can't remember a darn thing lately) I have EDS and also have some strange clotting issues. My d-dimer is always high; I clot on birth control pills, but they can't figure out WHY I clot. All genetic tests were negative. The doctors in Connecticut thought it might be due to my EDS; that because of the collagen / extracellular matrix being faulty my body isn't making the right proteins for appropriate clotting. I clot very fast!

Sara

Hi Sara-

Did you always clot fast or has there been a change as you aged?

I, too, have EDS and clotting issues.

noreen

my ears are definitely involved. I had the caloric test (hot and cold air put through ears) and it showed a weakness of like 80%. So I had significant weakness, due to what? they don't know.

Who did the caloric test? I have not heard of it and appreciate what you can do to educate me.

hey there-

I can so relate. You can hang out in lupus limbo for decades. It is beyond frustrating.

All you can do is keep checking in with your rheumy. My meds treat for lupus and APS but the definitive dx the doc uses is RA.

So sorry,

noreen

(((willow)))

Keep up the good fight. Hope you are able to joust successfully with Sir Lancelot.

I am feeling the need for another POTS party. Any new additions?

A truckload of zero gravity chairs modified with electric scooters so we can get around yet rest at will.

Those margaritas sound great.

EDIT: forgot to add epsom salt footbaths.

BTW-I think they should do a study of how many of us have had our Gallbladder's out and have Dysautonomia. I had mine out in 2005 and never was healthy after that.

I agree with you about the gallbladder. I had mine out 7 months prior to coming down with fibro in 1990. The diagnostic list just grew from that point on.

Apache-

That is very interesting. Could you point me to some journal articles on the subject? As a matter of curiosity, who dx'd your dysautonomia?

tks,

noreen

Have you always bruised easily? New symptoms should definitely be brought to your doc's attention.

If you are not getting enough exercise you can be subject to several issues. Pain in the leg is a symptom of deep vein thrombosis.

Get it checked out and relieve your anxiety.

Went off them and I took the test. Ten minutes in my diastolic dropped to 20. I stayed conscious, but oww. Wicked hangover.

But I've got my official diagnosis. POTS and NMH.

Thanks for the advice everyone. I'm so, so glad that I won't have to retake that.

I know you are glad to have your official dxs. I used to describe the TTT as a medieval torture device. I think it is the only med test I could not do again.

Glad yours if over.

How can one tell if she/he is addicted? I just took for granted I was addicted because of the withdrawal symptoms from zopiclone.

Thanks for anything you can do to answer. I couldn't find anything on the www.

Mary p

Mary-

Do you take drug to function?

Drug addicts function to take drugs as opposed to taking drug to function.

Yogini

Good news that you've found a simple way to boost your energy levels! Trust your instincts re blood sugar - normal blood sugar findings don't necessarily mean that all's fine with your carbohydrate metabolism. After limiting my carb intake over many years to manage my fatigue, last year I did a carb challenge over a number of days which showed abnormalities (despite normal findings on annual blood sugar checks over six years).

My GP and I had agreed to a week-long carb challenge to check for reactive hypoglycaemia. I was provided with a practice glucometer, and training/support from the practice nurse, and told to challenge myself with big carb meals, take 'regular' blood sugar readings and report back after a week. I took hourly blood sugar readings from waking. My blood sugar failed to swing either high or low in response to carbs, even though I felt increasingly disabled, BUT I woke each morning with blood sugar that was higher than the morning before. On day four, my GP stopped the challenge because I woke with blood sugar in the diabetic range.

I had thought that nothing measurable was happening in response to carbs because of my normal results on the usual blood sugar checks but, really, there was nothing measurable happening in the standard timeframe for a glucose tolerance test or a 'moment in time' assessment of fasting blood sugar.

After seeing an endocrinologist before Christmas last year, its now queried whether a genetic metabolic disease might have caused my dysautonomia - I've been referred on to an adult genetic metabolic diseases unit, and my appointment is on 3 March.

Meanwhile, I've cut back my carbs even further, and my fatigue levels are now lower than ever before. Unfortunately, it hasn't mean't that I can be more active, but losing much of the fatigue has improved my quality of life dramatically.

With best wishes

Dianne

That is fascinating Dianne. Please let us know how your appointment goes.

Hi-

For this diagnosis I would strongly suggest you get a second opinion. There are members who have been misdiagnosed with diseases such as Parkinson's.

While I know there are members here with MSA, I would encourage you to check wemove.org for info - there is a forum there on it.

wishing you the best,

noreen

So sorry you got the flu. Glad that you are on the mend and hope recovery is quick and complete

Thanks for letting us know. I hope you get some relief with the generic.

Let uS know how it goes.

Jim Cramer linked to this on twitter:

Chelsea Tries Spin Job on Failed Drug Trial

http://www.thestreet...drug-trial.html

Thanks for posting the links.

I found this quote to be almost laughable, however, as I have lost faith in the FDA.

" raising obvious concerns that the drug will not fare well under a stringent review by U.S. drug regulators."

Yes, we know. There's an announcement on the DINET.org main page showing the new address which is dinet.org/forums. The forums.dinet.org address should be up again soon, but as of this morning it was still down.

Nina

Thanks for all you do Nina. Hope the dissertation is coming along.

(hugs))

noreen

I have found in the evening to help sleep a hot toddy is delicious -- never tried that before - but an actual one ounce measure of whiskey with hot water, fresh lemon juice and a bit of splenda LOL! Of course I'm not driving or anything - but rather soothing the aches and pains and anxieties of the day surrounding bizarre health things.... Blessings to you!

I use to love treating a cold with a hot toddy. Shot of Jameson over a slice of lemon with four cloves covered with a spoonful of brown sugar - fill the mug with hot water. Maybe you might want to try the cloves. I can't do it any more due to mtx.

Noreen/Natalie - Can you tell me what the relationship is between mottling and EDS/HDCTs? Is there also more APS in people with EDS?

Sarah-

I only know that livedico reticulari occurs in EDS. I've had it forever but it is much more pronounced than it used to be. I am not aware of a correlation between EDS and APS. APS is found with lupus.

Thank you, everyone, for the replies. Yes, I look like a couple of the pics you sent, Reen, especially the first one of the arms. Do you have this APS?

Thanks, again,

Lindajoy

Hi Lindajoy-

While I have EDS, apparently the livedico reticularis became more pronounced and that had the rheumy checking. Several years ago the criteria use to be having a stroke as part of the criteria. It has now been modified to include any thrombotic event. I have been on plaquenil and aspirin for a number of years. My numbers have stayed consistent so I haven't had to go on blood thinners.

For more information, you could check here at the APS foundation.

best of luck in finding answers,

noreen

Glad you found us but, of course, am sorry for the necessity to do so. It is great that you got dx so quickly but it is rotten that none of the standard meds are giving you even a bit of relief.

I remember reading a member story where the gentlemen also attributed his dysautonomia to bariatric surgery. If you go to DINET main page and look down the left column you will see a link to member stories. Just thought it might br small comfort to know you are not alone

I have nothing to offer re: nystagmus. I would encourage you to check it out with your PCP and see a neuro if he/she recommends.