Relationship between Florinef and Blood Pressure

[charlie1]

I was started on florinef last September for my chronic low blood pressure. Started at 1/2 tab and went up to 2 tabs before seeing my blood pressure at a normal reading and was feeling somewhat better.
I have since decreased to 1/2 tab because I was becoming mildly hypertensive. Also, my doctor and I suspected the florinef was contributing to an increase in frequency and duration of migraines. As well, I decreased salt pill intake because of stomach aches and nausea.(still heavily salt my food).
First 10 days saw stomach relief and some improvement in headaches. BP reduced to normal range - which was the original goal - and experienced no additional ill side effects.
However 5 days ago I saw a sudden increase in PEM and POTS intensity.
Could the reduction in Florinef be causing this (in spite of good BP) or is it likely something else is going on?

 

[taniaaust1]

Yes I'd think the Florinef was helping POTS also (as many of us take Florinef for POTS not for low BP) and now that you've stopped it.. its stopped helping your POTS and if you have POTS happening.. I myself have found I get more PEM with it.

You need to consider other treatments for your POTS eg medical compression stockings or other POTS meds.. or take a Florinef dose to help it which isnt causing you negative symptoms. Two pills is a lot for OI. My specialist wont allow me to take more then 1 pill of florinef. 1 pill unfortunately only helps me a bit but I wouldnt go without it.

Be aware too that the BP can change in time just due to the ME itself. I used to have low BP which ended up going into orthostatic hypertension due to the ME (the hypertension wasnt related to me taking Florinef or anything else but just due to the ME autonomic issues itself). But yeah I agree..that its likely that dose of Florinef put your BP up while you were on it.

 

[MishMash]

Don't tell Dr. Klimas you are not taking your Florinef. She will scold you. It's part of their CFS orthodoxy, and is not to be questioned.

 

[charlie1]

You need to consider other treatments for your POTS eg medical compression stockings or other POTS meds.. or take a Florinef dose to help it which isnt causing you negative symptoms. Two pills is a lot for OI. My specialist wont allow me to take more then 1 pill of florinef. 1 pill unfortunately only helps me a bit but I wouldnt go without it.

Daily I take: florinef, drink >1 litre of water, salt ALL food (no more salt tablets), wear compression socks and have the head of bed raised 6". Tried very small dose of Zoloft for 2 wks but caused stomach upset. At bedtime I take .5 lorazapam to help with sleeping.
Not exercising as I'm afraid things will get worse. Presently rarely able to leave couch without symptoms of cognitive impairment and body weakness.

Couple of questions: 1) I've noticed that when POTS is severe, taking .5 loraz will help lessen the intensity. I'm not anxious so I know loraz isn't affecting that. Perhaps it works similar to Clonodine- vascular stabilizer?? I see some ME/CFS clonodine.

2) I used to take 3-5 one mg. salt tablets / day with meals but it started to cause nausea and stomach aches so I discontinued that at the same time that I decreased the florinef (still using salt shaker).
Is it possible that when I limited my salt intake, I didn't give the new low dose florinef a chance to work properly?

You can see that I'm trying to figure out any way to have as little florinef as possible!... do not want daily headaches/migraines. Also, I do not want to have addiction problems with lorazapam. If it isn't my imagination, and the loraz is actually doing something to help with dysautonomia, then I don't care (for now) if I get hooked on it, I just want to feel better. That sounds awful but I'm sure its understood.

Hoping that some day soon I will be well enough to start recumbent exercises - I plan on starting low and slow!

 

[ahimsa]

Daily I take: florinef, drink >1 litre of water, salt ALL food (no more salt tablets), wear compression socks and have the head of bed raised 6".
...

Hi Charlie1,

Since salt tablets aren't working for you, maybe you can try some fluids with more electrolytes? Perhaps something like Pedialyte or the equivalent generic brand? (Walgreens makes one) It has both sodium and potassium. Or you could try mixing up your own version. Or tablets that are dissolved in water such as the ones made by Nuun.

Florinef worked better for me once I was including both sodium and potassium. I'm able to tolerate salt tablets (Thermotabs or Bio-Salt) and I'm also on a prescription time-releaseed potassium (Klor-Con or some generic equivalent). On the other hand, I never got more headaches from Florinef. In fact, I think I got fewer migraines after I started taking it.

Don't tell Dr. Klimas you are not taking your Florinef. She will scold you. It's part of their CFS orthodoxy, and is not to be questioned.

MishMash, it's sounds like you had a bad experience with Dr. Klimas. Sorry to hear that.

Most doctors realize that even with treatments that work well for many patients there will always be exceptions. I thought it was pretty well known that some people can't tolerate Florinef. It can cause headaches, and I think even depression (am I remembering the right drug?) in some folks.

 

[SOC]

Don't tell Dr. Klimas you are not taking your Florinef. She will scold you. It's part of their CFS orthodoxy, and is not to be questioned.

Nope. I don't buy your "part of their CFS orthodoxy, and is not to be questioned". I asked about Florinef and was told that we would try other things before we consider Florinef. For me, night/morning fluid loading and Verapamil (for tachycardia) is a better solution.

As far as I can tell, they have a number of tools to work with for PWME. Some they know work for a lot of people and they use them fairly often. However, when an individual's situation doesn't warrant a certain treatment, or a common treatment is contraindicated because of other symptoms or meds, they use a different treatment.

 

[taniaaust1]

One part of your post really stood out to me

Daily I take: florinef, drink >1 litre of water,

drinking at least 1L of water is the recommendation for a healthy normal person and not for a POTS patient. Think about doubling that amount to 2L as for Florinef to work well.. you need to be getting plenty of water and enough salt too.

Be aware that if you have them.. caffiene and alcohol are dehydrating and bad for POTS (thou can be good for other ME symptoms in some)..and for every coffee you should be having an extra glass of water.

Maybe try the Florinef again with the amount of water I'm suggesting. Also experiment with a very low dose and work up.. find out exactly how much you can take before it gives you unpleasant side effects.. then drop the dose to under the side effect dose. My specialist had me on only a quarter of a pill for a time.. then he had me on half a pill for a time. I think it was about 4-6 mths before I got put onto a full pill. At quarter pill I get no noticable effects at all, at half a pill.. Im like "maybe this is working but Im not sure.. I think it may be".. and one pill I get a good amount of improvement (thou still no where near enough). Do you have any idea of at what dose the florinef affects for you just start to kick in a bit?

Also I suggest to get to know at what amount the salt causes you issues and then stay just under that amount.

Maybe if you took salt with food it would be less harsh???? (maybe something like very salty potato chips would be easier on your stomach then straight salt?)

1) I've noticed that when POTS is severe, taking .5 loraz will help lessen the intensity. I'm not anxious so I know loraz isn't affecting that. Perhaps it works similar to Clonodine- vascular stabilizer?? I see some ME/CFS clonodine.

I dont know anything about loraz to comment about that. It should thou be easily to search and find out if it works on adrenaline or noradrenaline like Clonodine does. If so.. Clonodine may be a safer alternative to trial...

 

[charlie1]

Love this site! Without having a ME/CFS doctor to help me with this, the suggestions offered are so helpful.. and appreciated.

Since salt tablets aren't working for you, maybe you can try some fluids with more electrolytes? Perhaps something like Pedialyte or the equivalent generic brand? (Walgreens makes one) It has both sodium and potassium. Or you could try mixing up your own version. Or tablets that are dissolved in water such as the ones made by Nuun.

The few electrolyte drinks that I've tried, have been too sweet but your suggestions sound great! My endocrinologist has just started having my blood checked every other week since finding out I was low on potassium when hospitalized in Nov. Since then my levels have been coming back fine so it seems low sodium is the main issue with me.

 

[charlie1]

Sorry, I need to find out how to copy quotes from different members within the same thread and reply in one post! And how to write under each individual quote instead of at the end as done here.
Brain fog makes learning new things so difficult....

Be aware that if you have them.. caffiene and alcohol are dehydrating and bad for POTS (thou can be good for other ME symptoms in some)..and for every coffee you should be having an extra glass of water.

Maybe try the Florinef again with the amount of water I'm suggesting. Do you have any idea of at what dose the florinef affects for you just start to kick in a bit?

Also I suggest to get to know at what amount the salt causes you issues and then stay just under that amount.

Maybe if you took salt with food it would be less harsh????

I don't drink alcohol or coffee so that's not an issue. And although I do drink more than1 liter water /day, I'll increase to at least 2 litres. how is it possible to drink that much????

I increased my florinef to 1 pill (from 1/2) 4 days ago and the last 2 days were so much better. I though that must be the magic dosage but today I feel like crap again. You'd think I'd know by now not to make conclusions so quick

I salt all my foods and have no problem that way. I started salt tablets in the fall b/c I didn't like the taste of salted water. The tablets were always taken with meals with no problems until recently. I discontinued them for 1 week -nausea and stomach ache stopped. Started them again today, just 1/4 pill with my lunch... nausea.
I think they're just not going to work for me.
Thanks for your suggestions!

 

[ahimsa]

The few electrolyte drinks that I've tried, have been too sweet but your suggestions sound great!

I can't drink Gatorade and similar drinks, either. Too sweet for me, too.

Pedialyte type drinks do contain some sugar in the form of glucose (aka, dextrose - different name for the same thing). But they are much less sweet than Gatorade (less than half the sugar). Plus they have much more sodium and potassium.

By the way, if you decide to try Pedialyte then I recommend the unflavored kind (clear). I think the flavored kinds not only taste worse but have artificial sweeteners. I don't drink it very often but I keep a liter on hand for those times when I feel too sick to eat or drink much and I want to keep my fluids up. At those times it is feels easier on the stomach than plain water.

 

[ahimsa]

I found yet another recipe for mixing your own over at WedMD.com:

http://www.webmd.com/hw-popup/rehydration-drinks?navbar=hw86827

Note that these type of oral rehydration therapy recipes that are found online are meant for people with severe diarrhea and vomiting. I'm pretty sure that's one reason that sugar of some kind is usually included. (see http://rehydrate.org/ors/ort-how-it-works.htm where it shows how glucose helps the sodium to be absorbed in the intestines )

I'm not sure whether the added sugar, and the warnings to "mix it up exactly!", apply to people who are using it to help with symptoms caused by Orthostatic Intolerance. But I'm not a doctor so I don't know for sure.

 

[SOC]

I can't stand how sweet most electrolyte drinks are. The electrolyte drink suggested to me at Dr Rey's office is Electro-Mix. http://www.iherb.com/Alacer-ElectroMix-Lemon-Lime-30-Packets-4-2-oz-120-g/17246 You have to mix a packet in a liter of water. There is no suger, just stevia --30 cal per liter (approx 1 qt). No sodium, either. Lemon-lime flavor is very, very mild. This is great for when you don't want mix your own.

 

[charlie1]

@ ahimsa and SOC - thanks for the drink suggestions!
I don't remember recipes for drinks being quite like this back in the good ol' days pre-illness

 

[SOC]

@ ahimsa and SOC - thanks for the drink suggestions!
I don't remember recipes for drinks being quite like this back in the good ol' days pre-illness

LOL! Somehow that last sentence encapsulates life changes with ME/CFS in a single image.

 

[taniaaust1]

I increased my florinef to 1 pill (from 1/2) 4 days ago and the last 2 days were so much better. I though that must be the magic dosage but today I feel like crap again. You'd think I'd know by now not to make conclusions so quick

maybe try 3 quarters of a pill (one half and one quarter). At least you know now that even 1 pill works on your POTS even if its giving you side affects, so maybe less will help some too....

Some people cant tolerate salt pills.. I just highly salt things.

If you really cant take Florinef in an amount which will help boost your blood volume and help the POTS, maybe u can find someone to help you do saline IVs. That's what Im still wanting to try.

 

[SOC]

FWIW, my doc wanted to try fluid loading and a calcium channel blocker (for tachycardia) before I tried Florinef. While it's somewhat inconvenient to make sure I chug 0.5 - 0.75L immediately before bed and again first thing in the morning (before I get out of bed), it really has helped my low blood volume situation. And it's easier than going in for regular saline IVs.

As I understand it, our blood volume drops overnight and since we're sleeping, we don't drink enough to replenish the loss. The idea of night/morning loading is to start you off in the morning in a better fluid volume situation. You have to keep drinking during the day to maintain, of course. I have to drink a minimum of 3L of electrolyte drink daily. I do feel a lot better.

Some people manage with morning-only loading, but it wasn't enough for me. The trick is to figure out how much you can drink the not before and still not have to get up to pee in the middle of the night.

 

[charlie1]

Crap...my headaches are daily again with migraines about 3x week even though I cut down to 1 pill / day ( .1 mg). I'm starting to think the head pain may not be related to the florinef dosage and more likely just another awful POTS symptom. POTS was confirmed last week within 5 minutes of ttt'ing and neurologist mentioned beta blockers but I showed him a 48 hr. holter report that showed I was bradycardic 3/4 of the time.(he prescribed mestinon)
Hopefully I discover the right dosage of florinef b/c my blood pressure is falling again and I don't want it to get close to my old numbers again. - 88/52 .

 

[taniaaust1]

Crap...my headaches are daily again with migraines about 3x week even though I cut down to 1 pill / day ( .1 mg). I'm starting to think the head pain may not be related to the florinef dosage and more likely just another awful POTS symptom. POTS was confirmed last week within 5 minutes of ttt'ing and neurologist mentioned beta blockers but I showed him a 48 hr. holter report that showed I was bradycardic 3/4 of the time.(he prescribed mestinon)
Hopefully I discover the right dosage of florinef b/c my blood pressure is falling again and I don't want it to get close to my old numbers again. - 88/52 .

Ive learnt over time to distinguish what symptoms are from what. eg a headache just isnt a headache but different things will give slightly different kinds of headaches. See if you can learn to be more familiar with the different headaches you can get so to be more aware of exactly what is causing it when u get one.

sorry to hear that you are getting headaches daily.

 

[ahimsa]

Crap...my headaches are daily again with migraines about 3x week even though I cut down to 1 pill / day ( .1 mg). ... Hopefully I discover the right dosage of florinef b/c my blood pressure is falling again and I don't want it to get close to my old numbers again. - 88/52 .

Have you looked into trying midodrine? (if you've already mentioned this, and I've forgotten, sorry!)

Midodrine doesn't work for everyone - some folks get bad side effects - but it has helped me.

 

[charlie1]

Because of the bad side effects with midodrine, (for some people), I was prescribed mestinone. I will start tomorrow.
8 vials of blood were taken (not sure what was ordered), so perhaps something else will be prescribed as well.
Also, a 24 urine is ordered.