OI, florinef, pulse, advice please

[maddietod]

About a year ago I took my blood pressure and pulse in bed 1st am and 10 minutes after being up and about. 4 of the days look pretty normal - systolic went down 3, 7, 12, 15 points while pulse went up 6, 17, 12, and 3. Diastolic went up or down +2, -1, +2, and -12.

3 non-consecutive days looked like this:
131/75 (58) 109/71 (68)

114/67 (62) 79/87 (80)

127/84 (68) 93/63 (71)

Curious, I also took my blood pressure during the day, and it fluctuated so wildly that I returned 2 meters thinking they were broken.

I was told to salt load and increase fluids to keep systolic over 100. I did this, it worked, I got irritated with the salt water and the blood pressure cuff and stopped.

My new local doctor put me on generic Florinef 0.1mg in the morning. This immediately put me over the edge re daytime tiredness, and I quit after 2 days. I then peed unceasingly for 2 days.

I'm drinking 3 cups of water salted so it tastes salty but not nasty (himalayan sea salt). This is certainly not even 0.5g salt. **EDIT** I measured and it's about 1.5g of sodium.

I'm curious to test myself for OI again.

Here are my questions:

**Is it unusual for OI to be intermittent? Some days readings sort of normal, some days not?

**Is there a best way to test? I saw that Dr. Bell tests lying down, then standing, every 4 minutes for a long time. Dr. Rey does it this way. I'm doing this for myself, and secondarily as information I'll give to my new doctor. He'll order a tilt table test if I want it, but that feels like overkill.

**Has anybody else had this tiredness issue with florinef? I'd rather be medicine-free, but I'm sick of salt water. Could I take the florinef at night? I have insomnia anyway. [I would talk to my doctor...just looking for your experiences.]

 

[SOC]

You could try Electro-Mix instead of salted water. Connie Sol, the exercise physiologist at Dr Rey's office suggested it to me. It's not sweet or salty and has a better balance of electrolytes than just sodium chloride. I think it tastes more like mineral water. I have to drink about 3 L of electrolyte water daily to stay feeling good (and keep my pulse pressure up).

I still take by BP and HR every day, although I have to wait sitting up in bed 45 mins after taking my Florinef, verapamil, and 600 ml of electrolyte fluid before I get a stable reading. Otherwise my readings change significantly from minute to minute. My cardiologist says it's the low blood volume that makes the BP and HR unstable -- in my case. Taking the morning readings helps me manage my day properly. If my HR or BP is high in the morning, I need to rest that day. If my pulse pressure is low, I need to drink more fluids that day.

Florinef did not make me tired. You do have to make sure you drink enough electrolyte water when you're taking Florinef, though. Also, Florinef takes several weeks take full effect, so you may need to try it for more than a couple days to know how it's going to work for you in the long run.

Our cardiologist did a tilt table test on my daughter. I think he didn't really believe she had OI because she doesn't get dizzy or faint. Sure enough, she didn't pass out during the TTT, but felt horrible and had a BP crash. He learned from that and didn't make me take the TTT.

I'm not sure why you want to take a TTT. It's nasty if you have OI. Most people feel pretty dreadful during and after it. If the doc is willing to prescribe Florinef without the TTT, you're fortunate.

 

[taniaaust1]

About a year ago I took my blood pressure and pulse in bed 1st am and 10 minutes after being up and about.

That's not the way to test for things such as POTS as you need to be standing completely still when you stand up (dont even wiggle a toe, dont talk) and the heart rate and BP needs to be taken over 10-12 mins of standing time if you want to test for POTS (with some other things it needs to be tested for longer and best done by proper tilt table testing with those). I suggest you to retest yourself (with another present in case you pass out). (make sure the arm is at heart level when taking the BP etc). Home testing is probably just as good as proper tilt table testing for POTS and yes issues may be worst some days then others.

My new local doctor put me on generic Florinef 0.1mg in the morning. This immediately put me over the edge re daytime tiredness, and I quit after 2 days. I then peed unceasingly for 2 days.

My specialist when he put me on Florinef, he said the dose should be built up. He only put me on a 0.1mg dose after I'd spent a few weeks on a quarter of that dose, then another few weeks on half that dose (so it was probably 7-8 weeks before he put me on a 0.1mg dose and he had me blood tested too at each dose level (as it can affect potassium).

Sounds like your doctor gave you too much to start off with. Be aware that it is quite possible that Florinef could help you at quarter or half the dose you were given. (I had some very good benefit going on at half the dose you were on). You peeded after stopping it as it was working and helping you hold fluids. I suggest to trial it again but this time in the manner in which most doctors who know what they are doing with it do, with a slow increase of dose so you know how much you can take without issues. Trial only a quarter of a tablet once per day and see if you can take it without issues in a smaller dose..

I'm drinking 3 cups of water salted so it tastes salty but not nasty (himalayan sea salt). This is certainly not even 0.5g salt.

I suggest to make up a nice watery soup to drink at times during the day. I find I can have a lot more salt in soup then I can with water.

**Is it unusual for OI to be intermittent? Some days readings sort of normal, some days not?

My POTS on home testing varies from just out ot normal range eg an increase of 32 on standing, to an increase of 67 on standing. If Im extremely hydrated thou as Ive been drinking huge amounts, I can test normal. Before a POTS test they say to not drink for a certain amount of time as it can interfere with testing.

Could I take the florinef at night? I have insomnia anyway.

Florinef is best taken in the morning and not at night as it can cause insomina, if you have it already it may make it worst.

If you do have POTS, things like medical compression stockings of the right compression can help too and are often tried before meds (or used along with meds).

 

[maddietod]

Thanks for these great answers.

SOC, I don't particularly want a TTT anyway.......now I REALLY don't want one! Re salt, my issue seems to be relatively mild (I'm up and about most of the day, although not vigorous). So I'm hoping to not spend a lot of money on electrolyte solutions if I can just use salt. However, if the electrolytes are much better for me, I'll go that route. What do you think? Does it depend on how much florinef I take?

It sounds like low blood volume is the reason my bp readings are so bizarre. I'll work on that first. My doctor offered florinef after I told him my readings from last year, and that Dr. Rey had told me I had to keep my systolic over 100.

taniaaust1, I will try taking florinef at 1/4 tablet. Good call. I am able to get more done on the days I take salt...so florinef is probably a good idea.

I did just enough research about POTS and OI to make my brain hurt. I think they are different, and that my readings put me in the OI category. I can't test myself for POTS anyway, as I can't test blood pressure while standing absolutely still.

 

[SOC]

madietodd, I think most people can drink less fluid if they take Florinef. That's how it works for my daughter. She tries to salt her food generously and doesn't take extra electrolytes. She might be a little better if she did, but it's not enough of a problem for her to want to bother. I, on the other hand, have to take 2.5 mg of Florinef and drink 3 L of electrolyte fluid daily. I'd suggest trying 1 L of electrolyte drink daily for a while just to see if it helps. At that rate, Electro-Mix only costs 25 cents a day ($7.50 per month).

Daughter and I both started at 0.1mg of Florinef without problems, but that's not true for everyone. Tania's suggestion is a good one -- start low and work up.

 

[OverTheHills]

Hi Madie there are plenty of recipes for homemade electrolyte drink online, using cheap ingredients such as ordinary salt, nosalt or low salt and epsom salts. What I do is mix lo-salt from the supermarket (which is 66% potassium chloride, 33% sodium chloride together with a bit of orange juice and top it up with mineral water. The OJ covers up the saltiness quite a bit. I get on really well with that and its dirt cheap; I used to drink coconut water which was tasty though pricey but i became intolerant of it.

 

[maddietod]

SOC I looked at the ingredients in Electro-Mix, because yes, that's a do-able price. But now I'm confused. I thought we needed to salt-load, but this blend doesn't have any sodium in it. Do I understand correctly that your daughter needs extra salt, but not electrolytes, and you are the opposite? So we're just all different in the blend we need?

In which case the simplest test might be to try heavy salting for a while, then try just the electro-mix for a while, while keeping the florinef constant. And see how I feel. I'm a bit scared of throwing myself out of balance. My doctor isn't up on electrolytes.

OverTheHills I read through a google page of electrolyte recipes, and they were all citrus juices, cherry juice, coconut water, or (one) water + salt. I could do it this way - I like lemons with stevia - but it's hard to know what I'm getting.


Also, I take 400mg magnesium glycinate at night or my bowels stop moving. I've taken this amount for years.

On a related note, blood levels of sodium, potassium, magnesium, and calcium are all normal. 24 hour urine excretion levels also included manganese and chromium, and are in range.

 

[Sparrowhawk]

Relatively minor add to the conversation:

Someone on the forum had mentioned that the Himalayan salt has fluoride in it. I couldn't find their reference just now but I did find this, which supports that:
http://forums.phoenixrising.me/index.php?threads/saline-infusions.17983/#post-278393

I was bummed because I've used probably seven of those trader joe's himalayan salt grinders since I got sick, the whole while thinking I was avoiding fluoride great because I had switched toothpastes... Now I'm using french sea salt.

 

[maddietod]

Relatively minor add to the conversation:

Someone on the forum had mentioned that the Himalayan salt has fluoride in it. I couldn't find their reference just now but I did find this, which supports that:
http://forums.phoenixrising.me/index.php?threads/saline-infusions.17983/#post-278393

I was bummed because I've used probably seven of those trader joe's himalayan salt grinders since I got sick, the whole while thinking I was avoiding fluoride great because I had switched toothpastes... Now I'm using french sea salt.

Take a look at this link: http://www.atthemeadow.com/shop/Resources/Minerals-in-Pink-Himalayan-Salt

I think I'll put up with <.1g/kg of naturally occurring flouride in himalayan sea salt

 

[SOC]

SOC I looked at the ingredients in Electro-Mix, because yes, that's a do-able price. But now I'm confused. I thought we needed to salt-load, but this blend doesn't have any sodium in it. Do I understand correctly that your daughter needs extra salt, but not electrolytes, and you are the opposite? So we're just all different in the blend we need?

I'm so expert, but this is the way I understand it: We need more blood volume. Increasing sodium levels by increasing dietary sodium sometimes works in milder cases. For those of us for whom that is not sufficient, Florinef is used to supplement the (assumed) insufficient aldosterone. Florinef (and aldosterone) preserve sodium in the body. They also decrease potassium. It's important to keep a balance of the main physiological electrolytes (sodium, potassium, calcium, magnesium, and chloride ions, and some ionic compounds). Your body does this naturally, but the system can be upset in a number of ways including taking in too much of one or more electrolytes, excreting too much of one or more, taking medications or other substances that increase or decrease specific electrolytes, vomiting, diarrhea, and a number of other ways.

I still have to drink a lot of fluid to maintain my blood volume, so it's easy for me to screw up my electrolyte balance by taking in (in those fluids) or excreting too much (or too little) of some electrolytes. It makes sense for me to drink fluids with the appropriate balance of electrolytes to compensate for the loss through excretion. I do have to keep an eye on my potassium levels because Florinef depletes potassium. So far I've been fine with the potassium in my electrolyte drink. My electrolytes are all good so far.

My daughter doesn't need to drink as much fluid. Extra dietary salt and Florinef at 0.1 mg seem to keep her blood volume at an acceptable level. So, as a busy young woman, she prefers not to mess with electrolyte drinks. We still keep an eye on her electrolytes. Her potassium is down at the low end of normal and her chloride is at the high end, and her blood sodium is low normal which is okay, if not ideal. She's probably benefit from a better balance of electrolytes, but can't be bothered, yet. We have another round of tests coming up next week. We'll see how she's doing then.

I'm not sure if I answered your question, but I did babble on quite a bit. Let me know if I wasn't clear enough.

 

[SOC]

I'm so expert, but this is the way I understand it:

Yep, I'm SO expert. I meant I'm NO expert.

 

[maddietod]

Excellent, thanks. It helps a lot to understand how much florinef your daughter takes, and that that + salt works for her. I believe that I have a relatively mild case, and am hopeful that small interventions will work for me. Salt alone has helped, but not been enough.

No I LOVED the 'so' expert! Said like my kids would, sarcastically, 'I'm soooooo expert!' I'm still chuckling.

 

[maddietod]

I'm confused about POTS diagnosis. It seems to be based on an increase in pulse rate >30 bpm from resting to standing, within up to 10 minutes. I don't have this; my heart never races unless I exert myself.

What I have is very unstable blood pressure which rarely gets elevated, and a ton of POTS-type symptoms (eg heat sensitivity, major cognitive problems, sleep disorder, sweating, dizziness).

I don't want to go through a lot of major interventions like I did for presumed gluten intolerance, without more information. How can I find out if I have POTS, or any of its variants? Dr. Rey and my local doctor seem to assume I have it, with the salt loading, increasing fluids, and florinef. But nobody has run any tests, other than taking my seated blood pressure 3x a day for 3 weeks, and taking it on waking and 10 minutes later for a week.

EDIT: I just took my readings at the end of an hour of lying-down meditation, immediately on getting up, + 2 minutes standing still, + 3 minutes standing still. Is this normal?

110/74 (pulse 90), 146/105 (90) 134/106 (100), 133/104 (96)

 

[JAH]

I'm confused about POTS diagnosis. It seems to be based on an increase in pulse rate >30 bpm from resting to standing, within up to 10 minutes. I don't have this; my heart never races unless I exert myself.

What I have is very unstable blood pressure which rarely gets elevated, and a ton of POTS-type symptoms (eg heat sensitivity, major cognitive problems, sleep disorder, sweating, dizziness).

I don't want to go through a lot of major interventions like I did for presumed gluten intolerance, without more information. How can I find out if I have POTS, or any of its variants? Dr. Rey and my local doctor seem to assume I have it, with the salt loading, increasing fluids, and florinef. But nobody has run any tests, other than taking my seated blood pressure 3x a day for 3 weeks, and taking it on waking and 10 minutes later for a week.

EDIT: I just took my readings at the end of an hour of lying-down meditation, immediately on getting up, + 2 minutes standing still, + 3 minutes standing still. Is this normal?

110/74 (pulse 90), 146/105 (90) 134/106 (100), 133/104 (96)

I think you have neurally mediated hypotension, not POTs. Probably have to do the dreaded tilt table test to know for sure . (I am having one this week, but I clearly have POTs, pulse soars when I get up) Have you ever tried to stand completely straight, like back against the wall for 30-40 minutes? That's what would happen in the TTT, see if it would induce fainting. Also you could lie completely flat - no pillow, and see how you feel. If it brings on nausea, headache, fatigue, that could be a clue. (At least that is true for POTs, not sure about NMH) since you have done your research, you probably have run across excellent work by Peter Rowe who has some good videos on youtube re orthostatic intolerance and CFS. http://phoenixrising.me/treating-cf...ing/orthostatic-intolerance-and-cfs-resources

Best to you in finding some answers,

JAH

 

[maddietod]

Thanks for the links. I actually emailed Dr. Rowe last year, asking if he'd take me as a patient. He replied immediately and very kindly that he's strictly pediatric. What a nice man.
I'm going to go watch the videos now.

EDIT: I don't get the increased heart rate (POTS) or the drop in blood pressure (NMH). I was fine for 20 minutes standing still. Darn.......it sounded like a good fit.

 

[Sushi]

Thanks for the links. I actually emailed Dr. Rowe last year, asking if he'd take me as a patient. He replied immediately and very kindly that he's strictly pediatric. What a nice man.
I'm going to go watch the videos now.

EDIT: I don't get the increased heart rate (POTS) or the drop in blood pressure (NMH). I wonder what makes me dizzy when I stand up?

I forget, have you had a TTT? NMH often only shows up after 20 - 30 minutes even though you can have symptoms on standing. Other weird autonomic screw-ups can be happening before you get a noticeable drop in systolic.

Best,
Sushi

 

[maddietod]

No TTT. My doctor here said he'd order one if I want it. Is it one of those tests that has to be done a special way for us, to catch our issues? Do you think it's worth getting?
Did you see my second edit? I can try standing still for 30 minutes, and hope that cute groundhog comes back for me to watch .

 

[Sushi]

No TTT. My doctor here said he'd order one if I want it. Is it one of those tests that has to be done a special way for us, to catch our issues? Do you think it's worth getting?
Did you see my second edit? I can try standing still for 30 minutes, and hope that cute groundhog comes back for me to watch .

It is a tough test and needs an expert to set it up and read it. Otherwise I wouldn't bother to get it.

Sushi

 

[SOC]

I'm confused about POTS diagnosis. It seems to be based on an increase in pulse rate >30 bpm from resting to standing, within up to 10 minutes. I don't have this; my heart never races unless I exert myself.

What I have is very unstable blood pressure which rarely gets elevated, and a ton of POTS-type symptoms (eg heat sensitivity, major cognitive problems, sleep disorder, sweating, dizziness).

I don't want to go through a lot of major interventions like I did for presumed gluten intolerance, without more information. How can I find out if I have POTS, or any of its variants? Dr. Rey and my local doctor seem to assume I have it, with the salt loading, increasing fluids, and florinef. But nobody has run any tests, other than taking my seated blood pressure 3x a day for 3 weeks, and taking it on waking and 10 minutes later for a week.

EDIT: I just took my readings at the end of an hour of lying-down meditation, immediately on getting up, + 2 minutes standing still, + 3 minutes standing still. Is this normal?

110/74 (pulse 90), 146/105 (90) 134/106 (100), 133/104 (96)

Sounds like me. I thought I didn't have POTS/OI, but I was very wrong. Your symptoms sound exactly like mine and OI treatment really helped.

Were those results taken while you were on Florinef? That will alter the diagnosis.

Have you seen this article here at PR? If you click on the link for Simple Test for Orthostatic Intolerance, you'll find the instructions for a 30 minute tests and some information about interpreting the results. Here's a bit to get you interested.

Normal Test Results

• Systolic Blood Pressure (top number): recumbent: 100-142; Standing (4 min): 94-141; Orthostatic change: -19 to +11
• Diastolic Blood Pressure (bottom number): recumbent: 55-90; Standing: 61-97; Orthostatic change: -9 to +22
• Pulse: recumbent: 54-96; Standing: 62-108; Orthostatic change: -6 to +27

Indications of orthostatic intolerance

• Orthostatic systolic hypotension (low blood pressure): fall in systolic blood pressure of 20 mmHg or more
• Orthostatic diastolic hypotension (low blood pressure): fall in diastolic BP of 10 mm Hg or more.
• Orthostatic diastolic hypertension (high blood pressure): rise in diastolic BP to 98 mm Hg or higher
• Orthostatic narrowing of pulse pressure: reduction in pulse pressure to 18 mm Hg or lower.
• Orthostatic postural tachycardia (increased heart rate): increase in heart rate of 28 bpm or to greater than 110 b/min.

Based on the above, your 3 minute test results do not look normal to me. The 30 minute test is likely to show up even worse abnormalities.

 

[Valentijn]

110/74 (pulse 90), 146/105 (90) 134/106 (100), 133/104 (96)

Your pulse pressure (difference between systolic and diastolic reading) is getting low, especially in the last two (28 and 29). This seems to fall under the Neurally Mediated Hypotension definition more than anything else.

Narrow pulse pressure means the amount of blood being pushed around with each heart beat is too low. This can cause just as much trouble as a more typical low blood pressure. And if it's that low after a few minutes, it's probably getting very bad after standing upright for longer, or even after sitting upright for hours, especially if your feet aren't up.

Normal pulse pressure is typically around 40. Some say 30+, but based on personal experience, 40 feels a helluva lot better than 30. All sources say 25 and under is extremely low.