OI, florinef, pulse, advice please

[maddietod]

Thanks, Sushi, Valentijn and SOC. I'm profoundly confused about how to proceed from here. It sounds like specialists in this are rare, and I just don't want to go to yet another doctor who knows less than I do (which isn't much!). EDIT: There are 2 specialists within an hour of me, and neither is seeing new patients for 6 months.

I had taken 1/4 tab of florinef and about 1/4tsp of sea salt for 3 days, including the day of the tests. I've stopped both today, and I'll redo the test in maybe 3 days (does that sound like a good wait period?). I'll also redo the standing still test, with BP at the end. It does look like the florinef + salt has moved me from lifelong low-normal blood pressure into the high range.

 

[Sushi]

madietodd wrote:

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).

Those aren't specifically POTS symptoms--rather dysautonomia. Your weird BP pattern might be causing you a lot of problems. Low pulse pressure can make you feel like hell. How bad would it be for you to travel to see an autonomic specialist?

Best,
Sushi

 

[SOC]

Thanks, Sushi, Valentijn and SOC. I'm profoundly confused about how to proceed from here. It sounds like specialists in this are rare, and I just don't want to go to yet another doctor who knows less than I do (which isn't much!). EDIT: There are 2 specialists within an hour of me, and neither is seeing new patients for 6 months.

I had taken 1/4 tab of florinef and about 1/4tsp of sea salt for 3 days, including the day of the tests. I've stopped both today, and I'll redo the test in maybe 3 days (does that sound like a good wait period?). I'll also redo the standing still test, with BP at the end. It does look like the florinef + salt has moved me from lifelong low-normal blood pressure into the high range.

I believe it takes weeks for the full effect of Florinef to be felt, so I'm not sure that taking it for 3 days, then not for 3 days is going to give you a clear picture of its effect for you. In fact, it might be worse for you to be mucking with your blood volume on such a short time scale.

Cardiologists and electrophysiologists treat dysautonomia. Some are better at it than others. You should be able to find a cardiologist locally who can help you. I'd ask your local GP, if you have that kind of relationship, which local cardiologist knows about dysautonomia. If she doesn't know, you might be able to call the local clinics and ask which cardiologist handles dysautonomia. A dysautonomia specialist would be better, of course, but if you don't want to travel to one, a cardiologist is a good specialist to try locally.

Another thing to think about -- you might want to deal with the extra daytime fatigue for a bit and let your body adjust to the Florinef before you make up your mind about it. Once your body is adjusted to what is effectively a hormone increase, you may find that the side effects fade.

 

[maddietod]

I see my local doctor next week. I decided that the most useful information for him would come from doing the BP tests free from florinef "contamination," because I hadn't tested myself in over a year. If I get interesting results and get referred for testing, I need to be off florinef for that anyway. Then I have a baseline for myself as well as I experiment with the doses of salt and florinef, if they're recommended.

I only took 1/4 of a tablet, for 3 days. I haven't been peeing any more than usual, off it today, so that dose wasn't doing much.

If I wait until Monday to run the tests on myself, hopefully the week off it will give me results that are useful enough to show my doctor. That's all I need ATM.

If I need to see a specialist beyond what my doctor can locate, I will travel if necessary to get seen sooner than March.

 

[heapsreal]

The last few days i have monitored my morning BP and HR, so lying in bed before i get up in the morning then another on standing, then i have my 500ml electrolyte drink.

There doesnt seem to be much of a change between the lying and standing bp although my hr jumps 20 bpm but not tachy eg hr 70 lying to 90 standing. My bp is around the 120/80, after my 500ml electrolyte drink my bp jumps to 140s/80s and pulse drops 10bpm compared to previous standing hr. I feel like im functioning better with bp up around the 140s/- i suppose this gives me more leeway for error if it does drop after being upright for a certain length of time. One thing i find strange was that when my sinus infections put my bp up it gave me terrible headaches but now with sinus infection cleared and getting my bp up to close to what i had with sinusitis doesnt seem to cause me any issues??

Even before i started using the drinks my bp would vary alot throughout the day as much as 30 points and doing very little other then pottering around the house.

So theres not big differences in vitals signs that most docs would worry about but the symptoms of chronic headache/brain fog have eased up with electrolytes. Also the symptoms of head sweats and flushing as well as the pale episodes i think are the things that are obvious symptoms that have made me think pots/oi is an issue for me, also the big increase in urinating and thirst as well. There are alot of other symptoms as well that i think may also be autonomic dysfunction.

When i get a round to it i will do a standing BP first thing in the morning before any drinks and test it at 10min and 20 mins to see if theres a drop in bp, check for neurally mediated hypotension.

Im not interested in seeing a specialist if i can avoid it, i think i would rather try and work with my cfs doc on this for now. Although my symptoms have increased of late i think they are mild compared to most plus the good response to just electrolyte drinks is promising.

I think it is a very hard symptom to notice and pick up as there seems to be a suttly different type of brain fog and fatigue with pots/oi compared to regular cfs brain fog/fatigue??

I think if someone gets alot of headaches and brain fog or it seems different to normal then its atleast worth trying the electrolyte drinks, i think just trying this can help us to make a diagnosis as well??

cheers!!!

 

[SOC]

I think it is a very hard symptom to notice and pick up as there seems to be a suttly different type of brain fog and fatigue with pots/oi compared to regular cfs brain fog/fatigue??

For me, there is a subtle difference between OI cognitive problems and previous brain fog (HHV-6 related?). The ME/CFS brain fog for me included a true foggy feeling -- cotton wool in the brain. I couldn't concentrate at all, not even enough to read a book. Word-finding was a problem. I couldn't follow an argument or carry on a conversation of any length.

The OI thing seems to be more the ditzy stuff -- "senior moments". You know, like forgetting where I put things, or losing track of time.

 

[Sushi]

Yesterday, I majorly "overdid" -- could barely stand up to brush my teeth. So hauled out my abdominal binder thingy , laced it up, pulled on my tightest compression socks, what a difference!

The funny thing was that the "overdoing" was almost entirely mental but wiped me out physically.

Sushi

 

[SOC]

Yesterday, I majorly "overdid" -- could barely stand up to brush my teeth. So hauled out my abdominal binder thingy , laced it up, pulled on my tightest compression socks, what a difference!

The funny thing was that the "overdoing" was almost entirely mental but wiped me out physically.

Sushi

Compression socks and abdominal binders haven't done much for me, but maybe next time I overdo and feel tired, I'll try them anyway. It would be great not to have to take a week off. Let's hope it's in the winter, those things are hot!

 

[Sparrowhawk]

Yesterday, I majorly "overdid" -- could barely stand up to brush my teeth. So hauled out my abdominal binder thingy , laced it up, pulled on my tightest compression socks, what a difference!

The funny thing was that the "overdoing" was almost entirely mental but wiped me out physically.

Sushi

Glad to hear those socks and things helped! I've not quite gone there yet. A great point though. This is yet another remarkable thing about ME/CFS that will likely take years, if ever, to show up on a mdeical diagnosis sheet: mental, emotional energy expenditures wipe us out as much as physical. For myself I find emotional expenditures (good or bad -- e.g. watching a moving video or dealing with an upset child) wear me out far faster and for longer than straight intellectual engagement. I can do a series of phone calls with no emotional content, and be relatively ok. One half hour on the phone with a relative in distress...that can take me days to recover.

 

[maddietod]

It turns out I don't get good readings with the kind of cuff on the CVS meters. I bought this one and my blood pressure is testing normal.

 

[Lilly1212]

Can anyone help me? I've been on florinef 3/4 of a tab for a week... Drinking two teaspoons of sea salt a day..... Taking 20meq potassium a day.... Just had labs checked before going to 3/4 a tab... Was on half a tab for labs .... Potassium was at 4.5 and sodium 140.....after I drink my sea salt water for past two days I'm getting diahreeh ? Should I be decreasing my salt intake as I increase dosage..... I'm so sick to my stomach today and tired.... Am I taking too much salt? Also taking 25mg if hydrocortisone a day ......I'm at a loss today.... Is florinef helping me now retain some salt and I need less????

 

[*GG*]

Cannot address your specific question @Lilly1212 but my dr has me taking 0.1 mg, I think, was on 1/2 that before. He also has me on Elyte, an electrolyte solution and my percentage of water in my body, I have a scale that measure this, is finally increasing! I was always around 50% but have climbed to 54%, wonder how high it will go? I believe we are 70% water, so is 70% a reasonable expectation? perhaps time will tell.

GG

 

[Lilly1212]

Cannot address your specific question @Lilly1212 but my dr has me taking 0.1 mg, I think, was on 1/2 that before. He also has me on Elyte, an electrolyte solution and my percentage of water in my body, I have a scale that measure this, is finally increasing! I was always around 50% but have climbed to 54%, wonder how high it will go? I believe we are 70% water, so is 70% a reasonable expectation? perhaps time will tell.

GG

Cannot address your specific question @Lilly1212 but my dr has me taking 0.1 mg, I think, was on 1/2 that before. He also has me on Elyte, an electrolyte solution and my percentage of water in my body, I have a scale that measure this, is finally increasing! I was always around 50% but have climbed to 54%, wonder how high it will go? I believe we are 70% water, so is 70% a reasonable expectation? perhaps time will tell.

GG

 

[Lilly1212]

Now up to a full tab of florinef and two 20meq tabs if slow release potassium ..... I'm trying to drink more sea salt water, but 3 teaspoons a day is leaving me more dry mouthed than anything .... My blood pressure gets better when standing with the higher salt intake but I'm not feeling right at three teaspoons a day.... Sodium is stuck at 140... Not budging.....do you think I may end up needing more than one tab a day of florinef???? Before starting my aldosterone was a 2...... I'm so confused and not feeling well....taking 25mgs of HC and 3 NDT a day.....all i want to do is heal my adrenals so I can optimize my thyroid!!!! Any input would be appreciated.....