Cardiologist has lost it or I'm not getting it.

[taniaaust1]

why is florinef used, and not some other corticosteriod like prednisone?

Florinef can help those of us who have low blood volume due to the ME/POTS or whatever. Those other ones dont boost the blood volume hence Florinef.

 

[taniaaust1]

Does anyone experience tremors. Mine are getting worse and becoming embarrassing. Can anything be done about them?

Ive had a lot of issues with tremors (which got to the point where I was appearing like a Parkisons disease patient) due to the ME in the past... now I only get them due to POTS when Ive been upright too long.

As far as those go, it all depends on what exactly is causing them. eg if they are being caused by low blood volume eg OI triggered as often is the case if you also have POTS.. then measures in improving blood volume to the brain may help (increasing salt, fluids, compression stockings, Florenif).

If this are caused post exertionally by the ME and arent related to blood volume... they may be being caused by neurotoxicity.. and over active sympathetic nervous symptom. (Im not sure how wel neurological drugs for these work.. in the past they just admitted me to hospital for them and then discharged me again when they had settled.. 24 hrs in hospital being looked after, having my food brought to me etc etc helped me to get out of the crash I'd been in for 3 weeks in which they'd became constant.. happening every moment.. before that they were just on and off).
*Note.. i rarely get this issue now as I know to stay within my limits to avoid post exerctional symptoms like this or crashes and take care how long Im upright for.
(Im currently undergoing treatments to try to help the POTS which still can cause these for me if Im not careful)

best luck finding a solution. (I dont know if low dose Klonopin would help them if they are caused by neurotoxicity... anti seizure meds could also be tried but consider first if its a lack of blood getting to the brain tiggering them.. eg are they worst after youve been upright).

ps .. bouts of hypoglycemia too may cause bouts of tremors.. consider this cause too (hypogycemia isnt unusual in ME).

 

[PNR2008]

Thank you very much for your input. I've had three tilt tests and 2, I fainted within 7 minutes. The third was handled differently but kept me at the point of fainting for 45 minutes and was the worst test of my life. Throughout all this it seems that I have NMH rather than POTS and blood volume wasn't a problem. I have pheripherial nueropathy and have been treated with klonopin and inderal for years. About 5 years ago my hand started shaking on and off but stopped then a year ago my head and hand started up and got worse with stress. I've gone to a movement disorder nuerologist and Parkinsons and Dystonia were ruled out. Non essential tremor was mentioned and inderal increased. The shakes seemed to have improved but the stress can trigger them instantly like trying to get out of the house for an appointment or putting on make-up, writing checks etc. I was diagnosed 24 yrs ago and am getting worse. The best time for me is Lying in bed with my legs elevated above my heart and eat small meals more often to keep up sugar levels, still I feel drained and must lie on the floor if I get up to fast. Always had low BP.

 

[Tito]

Does anyone experience tremors. Mine are getting worse and becoming embarrassing. Can anything be done about them?

I have tremors too. It is socially very embarrassing. People make all sort of comments. I don't know what to do about it other than not showing my hands or moving them constantly so people do not see the difference between the tremors and the voluntary movements.

 

[taniaaust1]

and blood volume wasn't a problem.

The best time for me is Lying in bed with my legs elevated above my heart

Im curious how low blood volume was ruled out as being any kind of factor in your case? Having to lay with legs elevated above your heart, the raising legs to that level thing, that sounds like a low blood volume thing.

 

[maddietod]

and blood volume wasn't a problem. Always had low BP.

Before my appt with Dr. Rey (Klimas' clinic), she had me record blood pressure for 3 weeks. Because systolic dips too low, I've been told to increase water and salt intake to see if I can keep it over 100. I found that extra salt makes me go much too high, but 3 glasses of water a day in addition to what I was already drinking (milk, tea, coffee, whatever).........this works. Dr. Rey mentioned increasing blood volume, in this context, but I don't think there's a direct test for it.

I find I feel better overall when I drink the extra water and keep systolic pressure over about 105 at the lowest (NOT on average).

Also, it's probably different (?) but I get restless legs, sometimes to the point of whole-body shaking at night, unless I supplement with magnesium. I've just switched from pills to a freeze-dried form that works well at a much lower dose.

Madie

 

[Sushi]

...Dr. Rey mentioned increasing blood volume, in this context, but I don't think there's a direct test for it....
Madie

There is a direct test for blood volume but it is complicated (and probably expensive!) and I think only done in certain medical centers. There are other indications of low blood volume--but don't ask me what they are! My doctor has mentioned them to me though, and someone here probably knows.

Sushi

 

[PNR2008]

Tania, Thanks maybe I'll ask my DR to just try Florinef because other than tilt tests I don't know how to measure blood volume. The first two tests showed only 98% and 96% blood volume but that was years ago so maybe that's an answer but I'm never far from liquids. bedside, car, outside. I feel apprehensive without a drink container nearby and I've been on mag since the beginning. Madie, I also have RLS and most of my pain is in legs and arms. I know we all get here but I have been terrible this last summer, no energy, motivation, long and instant paybacks when I do have a passable day. It just seems too much. Little walking and no biking with my dog, no scupting because of shaky hand and head, my balance is off and yet even at 63 people say I look healthy. OMG I feel like I'm dying but as usual I'll address one problem at a time, keep going, keep trying. Thanks all.

 

[taniaaust1]

There is a direct test for blood volume but it is complicated (and probably expensive!) and I think only done in certain medical centers. There are other indications of low blood volume--but don't ask me what they are! My doctor has mentioned them to me though, and someone here probably knows.

Sushi

nods yeah.. that's the problem where I are. No where to get blood volume actually tested. This is something often only done in research.

One indicator of low blood volume would be someone having to drink a lot (but who hasnt got diabetes), craving salt (those who are drinking more.. often crave salt).. I'd think could be another indicator.... and then there is also the having to put the legs up thing or needing to lay down to stop OI symptoms (eg to get more blood to the brain to due low blood volume).

 

[taniaaust1]

Tania, Thanks maybe I'll ask my DR to just try Florinef because other than tilt tests I don't know how to measure blood volume.

If you do get your doctor to allow you to trial Florinef.. make sure you only start with like quarter of a pill...

 

[Sushi]

If you do get your doctor to allow you to trial Florinef.. make sure you only start with like quarter of a pill...

And watch your potassium!

Sushi

 

[BEG]

why is florinef used, and not some other corticosteriod like prednisone?

Florinef makes the body retain salt (and lose potassium.) With the salt retention comes water retention and thus the ability to stand. That's the theory anyway. If you use florinef, I was told by a doctor to add a food containing potassium to your diet, for example a glass of orange juice.

Inester 7 is the first florinef success story I've heard. Anyone else?

 

[taniaaust1]

Inester 7 is the first florinef success story I've heard. Anyone else?

Ive heard of quite a few success stories of the level of Inesters (eg it allowing people who couldnt work, to get back to work) using Florinef.

Florinef in my own case has MORE THEN DOUBLED of what I can do. It raised things from being able to be on my feet for up to 1.5 hrs per day broken down time on a good day to 2.5hr - 3.5 hr broken down time on very good day. So far that's the best thing Ive trialed (and Ive trialed a ton of things).

Many if their ability to stand and be on feet to do things was more then doubled, that would be enough to get them to be able to get back to work.. unfortunately due to me being at such a low level to start with, the big improvement it has brought me is still no where near enough.

Florinef according to another sites recent survey of 26 people with ME who trialed Florinef... it had positive affects on 50% (while 20.83% had negative affect), the rest had no effect. The postive rate I think would be higher then that if some doctors were more cautious of which ones with OI they were giving it to.. some try to give it to ones who dont have low blood volume (which of cause it then wont have positive affect on). I think 50% saying they had a positive affect is rather good when it comes to this illness.

 

[xks201]

If you are aldosterone deficient you will benefit from florinef. the high BP and stuff from high angiotensin 2 production is coming from adrenal failure to produce aldosterone in some cases. Trick is to take the pill on an empty stomach. If you screw around and take it sublingually or with food in my experience it won't absorb or do anything. Also I fill an empty pill capsule with sea salt once per day (because I do not like the taste of saltwater) and because florinef is only half as potent as human aldosterone supposedly. You'll know it is working if your BP raises.

 

[BEG]

If you are aldosterone deficient you will benefit from florinef. the high BP and stuff from high angiotensin 2 production is coming from adrenal failure to produce aldosterone in some cases. Trick is to take the pill on an empty stomach. If you screw around and take it sublingually or with food in my experience it won't absorb or do anything. Also I fill an empty pill capsule with sea salt once per day (because I do not like the taste of saltwater) and because florinef is only half as potent as human aldosterone supposedly. You'll know it is working if your BP raises.

Good information! Thank you.

 

[Questus]

It does sound counter-intuitive...To do a cardio workout with POTS.

I have a severe case, dx'ed by Dr. Klimas. She recommends aerobic exercise for POTS and CFIDS.

I do strength and weight training with a trainer, am too thin, but have good muscle tone.

The cardiologist I'm seeing now wants to get my heart and BP stable and then wants me to start cardio rehab.

I googled POTS and cardio rehab, and it is the script given by Mayo, Cleveland Clinic, and lots of other places treating POTS. (Talked about on DINET a lot.) Google POTS and Cardio rehab...I was surprised.

So, I agree. It sounds counter-intuitive, but cardio rehab is definitely not just something recommended by Dr. Levine, (ugg). It really is being used as a state of the art treatment for POTS.

I don't yet understand the reasoning entirely, but I'll be clear about it before starting it.

Does anyone else have vomiting after excessive heart rate while standing?

Anyway, I feel very fortunate that I've found a cardiologist who really does treat a lot of dysautonomia, POTS and other forms, and knows what he's doing.

Bright Blessing...

 

[taniaaust1]

There is no way that I'd be able to do cardio workout with the POTS. I was feeling energetic so I tried a dance class one time and only lasted a few minutes before I suddenly collapsed on the floor due to the POTS with people thinking about ringing an ambulance. (I wasnt ok for ages, I probably was on the gym floor for an hour).

I'd get vomiting too if I pushed it, I sometimes do push to the point where Im very nauseus with the POTS (I have some of those anti-nausea pills they give chemo patients that I can take so I can feel better, if I pushed things to that point. I try thou to not push myself to the point where Im having to dose up on lots of pharma drugs).

I personally think thou if a person isnt laying a lot (which can give a person POTS) that for many of us exercise dont seem to help the POTS in us anyway (ME patients often have low blood volume and I cant see how exercise could help this?). A doctor once told me getting my lower muscles all tonned up would help with my POTS.. I did tone mine up and it made no difference to the POTS at all (but that wasnt aerobic.. as I said I cant do aerobic without risking unconsciousness).

Im very surprised to hear that Dr Klimas recommends aerobics for severe CFIDS patients.

 

[Questus]

Taniaaust, I learned that cardio rehab is done in a cardiologists office by a cardio physical therapist. They keep you hooked up to an EKG the entire time, take BP throughout, and administer fluids. It's done carefully for POTS in a very controlled environment.

The purpose (as I understand it in very simplistic terms, will learn more later), but it seems the heart like any other muscle can atrophy. I thought the whole 'grinch syndrome' was/is offensive, but I assumed they were suggesting we had small hearts congenitally.

Now I see thinking is our hearts are deconditioned, so become smaller, like any muscle that becomes deconditioned. Cardio rehab, (done as I mentioned above) can recondition and thus make the heart larger and make postural changes much less stressful on the heart and autonomic nervous system. This is a simplistic explanation. I'll get a better one after I see the cardiologist. They only start with POTS patients after the pulse is stable with BB's.

If ANY doctor told me to do aerobic exercise without the kind of monitoring done in cardio rehab, I'd say, 'No thanks, NO Way'

As for the vomiting, it happens to me just by walking around our house, not by 'pushing it'.

Have been too sick to be on PR in a long long time. The 'likes' are new to me. Don't even know how to do it. I'll figure it out.

Taniaaust, you mentioned in another post that you might have masto, and that BB's were contraindicated...I DID NOT KNOW THAT! Thank you for that information.

I have a lab order from Dr. Klimas for a tryptase test because she suspects I have mastocytosis. I haven't done it yet. I have had 3 to 4 doctors appts a week for months, and going to the lab for a blood draw is on the back burner, so thanks for the heads up about BB's and masto! Especially since I'm starting a new BB for POTS.

Dr. Klimas does recommend conditioning exercises, but she recommends it be done in a very, very specific way. I'm not suggesting otherwise.

She says CFIDS is a spectrum disorder, and she's patients on all ends of the spectrum. She said I'm definitely in the very low end of the spectrum.

So, I'm actually hoping I can get my heart rate under control and try cardio rehab. I think most of it is done in a sitting position...recumbent bike, etc.. All done in a very safe environment.

Bright Blessings..

 

[Sushi]

Taniaaust, I learned that cardio rehab is done in a cardiologists office by a cardio physical therapist. They keep you hooked up to an EKG the entire time, take BP throughout, and administer fluids. It's done carefully for POTS in a very controlled environment.

The purpose (as I understand it in very simplistic terms, will learn more later), but it seems the heart like any other muscle can atrophy. I thought the whole 'grinch syndrome' was/is offensive, but I assumed they were suggesting we had small hearts congenitally.

Now I see thinking is our hearts are deconditioned, so become smaller, like any muscle that becomes deconditioned. Cardio rehab, (done as I mentioned above) can recondition and thus make the heart larger and make postural changes much less stressful on the heart and autonomic nervous system. This is a simplistic explanation. I'll get a better one after I see the cardiologist. They only start with POTS patients after the pulse is stable with BB's.

If ANY doctor told me to do aerobic exercise without the kind of monitoring done in cardio rehab, I'd say, 'No thanks, NO Way'

As for the vomiting, it happens to me just by walking around our house, not by 'pushing it'.

Have been too sick to be on PR in a long long time. The 'likes' are new to me. Don't even know how to do it. I'll figure it out.

Taniaaust, you mentioned in another post that you might have masto, and that BB's were contraindicated...I DID NOT KNOW THAT! Thank you for that information.

I have a lab order from Dr. Klimas for a tryptase test because she suspects I have mastocytosis. I haven't done it yet. I have had 3 to 4 doctors appts a week for months, and going to the lab for a blood draw is on the back burner, so thanks for the heads up about BB's and masto! Especially since I'm starting a new BB for POTS.

Dr. Klimas does recommend conditioning exercises, but she recommends it be done in a very, very specific way. I'm not suggesting otherwise.

She says CFIDS is a spectrum disorder, and she's patients on all ends of the spectrum. She said I'm definitely in the very low end of the spectrum.

So, I'm actually hoping I can get my heart rate under control and try cardio rehab. I think most of it is done in a sitting position...recumbent bike, etc.. All done in a very safe environment.

Bright Blessings..

Hi Questus,

Good luck with the cardio rehab. Just be your own monitor of the process. Though they often recommend cardio rehab for POTS patients, many places that do it don't really "get" POTS, and think that you can recondition like a "normal" person.

If anything doesn't feel right, speak up and ask for adjustments.

Best wishes,
Sushi

 

[Questus]

Thanks Sushi,

I agree...Be your own monitor, and speak up. That should be part of an instruction list given to all patients with CFIDS and/or POTS. How is your POTS?

The cardiologist I found was an amazing strike of good fortune. He's brilliant and really does understand dysautonomia, POTS, and related immune and viral issues.

I probably spent 20 hours on the internet searching for an M.D. in my town (a big city!) who knew anything about POTS. Dr. Klimas is great, but I felt I needed someone local for POTS.

In my internet search I found many names of doctors but when I called would learn they were researchers and didn't see patients, or that they really didn’t know what POTS was. The search went on and on. Lots of dead ends and blind alleys.

Finally, I came across a 'dead' forum on the internet. Posts were still there, but nothing new, and no way to contact the people who had posted. A woman in my town talked about this specific cardiologist who diagnosed her with 'inappropriate sinus tachycardia', another form of dysautonomia. Fortunately she mentioned him by name.
When I first saw this doctor he ordered an echo, a stress echo, a TTT, and two weeks wearing a holter monitor.
Two weeks wearing a holter monitor is a long time and NO fun.

Anyway, he never talked about stress or anxiety, or suggested this was anything other than POTS. He’s very respectful of the fatigue aspect although I never mentioned it to him. He just ‘knew’. Because he’s also an accredited Internist, he understands the immune and viral components that accompany POTS.

Have just started the BB he prescribed, 12.5 of Metroprolol 2x a day. He’s going to do another TTT on the bb in a few months and add a drug during the test. Not sure what the purpose of this is? Anyone have any idea? Was very brain fogged during my last appt.

The Cardio rehab would start after being stable on a BB for many months.

Just feel lucky to have found this doctor! Makes me smile because when I’ve seen him, he always asks “What do you think?” Geez, how many doctors ever ask that!

Bright blessings...