friday7

Hi there-

I could easily have written your post (provided my fingers worked) It actually helps to know someone else is going through the same things yet it is so hard for us to parse what is physical and what is emotional. I have no support myself and feel guilty that I cannot even reliably work/volunteer at my son's school. It is a very small school (2o kids) relying on parents to help. I cannot tell how I will be from day to day and hour to hour. For my own sanity, I need to get out more yet if I expend energy doing that the very basic housework I can do doesn't get done - gone are the days when I could clean for 12 hours to whip things into shape. Now generally I only have 3 to 4 hours of energy a day and divided into 20 minute chunks throughout the day. If I go to the doctor's the energy has been used driving there and so with luck I have 2 or 3 twenty minute chunks left. Even deciding to go to the doctors takes energy and if the result of getting help is iffy that ends up balanced against the sure thing that the house will get dirtier.

Nowwhat's reply was superb. If I only had a gauge to tell me when I have pushed and pushed too much before I flop!

That's so true about not knowing how you'll feel from day to day or hour to hour. That's the part that people have such a hard time with. I guess they can' t imagine that because they haven't experienced anything like it. Usually when people get sick they have an idea when they can' t do something when they can and when they think they are getting better. But I can feel great one minute feel like going out and all of a sudden it all goes away. I need to lie down and I'm done for the day.

It's also hard knowing what I should spend my energy on. I like you have only so much energy for the day and I have to choose what I need to spend it on...sometimes I can't even count on having energy to do anything. Or I'll have the energy but I'm too dizzy or whatever to do anything.. that's very frustrating.

I guess that's why it hurts so much when people assume we have control over these things. We are trying so hard and then you get criticized for not pushing hard enough. I guess it' s human nature. When you're not experiencing something directly, it' s really easy to give advice on how to handle it.

I understand too. I vasilate between anger and frustration and self deprecation, negative self talk, and generally beating myself up pretty good. I would never do that to someone else - Lord knows why I find it so easy to do that to myself. It's wearing. It's self defeating. It is not helpful at all.

I think somehow I should be able to "think" my way out of this. If I'd just find the right doctor, get the right medicine, do the right thing - life would be so much better. Of course that's not really possible. Not with this diagnosis.

I'm probably still in a bit of denial. A bit of shock. A bit of "why would I accept this? this awful thing?" No I can't accept it - and if I can't - how could I expect anyone else too.

Then the doubts.....is it 'real' or not. Of course it's real - it's documented in tests. In the vital signs - it's there. Same with the EDS - experts in our country say 'yes you have it'...??? Wha?

I seem unable to allow myself the slack I would kindly offer to another.... I push and push and flop. I get very upset when I lose things - most lately lose my mind. If I rest and take it easy - the place looks disheveled and reminds me of my weakness. I get a very poor mood when my place isn't clean - and it isn't clean a lot lately - or as clean as I'd like anyway - so the mood goes south.

Then you have no one to talk to that understands what it is to look 100% perfectly healthy -- and you know you are housing severe health issues that cause frank disability. It's not a battle that's easy to tackle. Yet we want to be engaged in some way to say our actions prove we want to be well.

Yes I hear you on that -- I think I bypass much of the guilt - because if I added that to the mix - the burden would be crushing. I try not to think about guilt - because of course we never asked for this. We did nothing to bring it on. We're doing everything we can to heal.

To not be able to support yourself when you have done so your entire life - is the most bitter pill to swallow ever. Yet at least we are alive this very day. And in this very day there are beautiful things. This is where I need to put my head and body and all of me -- into the present moment.

I get terrifying dreams of tornados lately...I'm on the ground and they are inching closer and closer as I press my body into the ground grabbing a tree for dear life - probably just a subconscious expression of what we live morning till night......... And you want it to stop desperately. Middle ground is so hard to bear .... and we appear middle ground to the world. Not well perhaps to those that know us best - but certainly not the other end of the spectrum - looking sick and very lame.

I would seek someone out to speak with about this - but that would feed my propensity to somehow validate I'm going crazy & none of it's real. It's very very real as you know!

So try try try to be kind to yourself and realize that we aren't of course the only ones carrying invisible wounds....someone is always worse off - sadly so. All corners of the world have people enduring heavy burdens ~ so we have to learn what feeds us and drives us to live in a peaceful way no matter the circumstances - because life will always have these frustrating hard things to deal with now and again. No one gets off easy - truly. But perhaps one way is to get involved with helping other people in the littlest ways we can - a phone call....an email....something to take the focus off of our hurts to bless someone else -- but only if it seems feasible with your energy of the day. Otherwise it's good to just be good to you period. Forget others and mostly forget their expectations if you can - the one you need to please is you.... Developing a non-judgemental view of yourself is crucial - and something so hard for us to do sometimes.

Hang in there :-)

Thanks so much for your words.

I know what you mean about not wanting to accept it. Sometimes I feel like part of the guilt is me not being able to accept that I'm not the same person I was. That I am disabled. That the life I had is no longer my life. If I'm not accepting that, It's like I'm saying I'm well and if I'm well what am I doing laying around the house all day?! So in comes the guilt.

But I do have more acceptance than I used to. Somehow I have to accept it without feeling like I'm giving up on ever being well again. I have to accept that now I am a sick person. And this is my life. But that doens't mean it will always be that way.

The thing is I haven't always worked . I haven't always been productive. I had a hard time as teenager. I went through a depression for about ten years. And I did a lot of lying around doing nothing. I had a lot of people then telling me what to do. And I had a lot of guilt an eventually a lot of self hate.

I overcame the depression and got praise for that..But that reinforced the belief that I was doing something bad before that. The thing is I would have liked nothing better than to be happy , running around with the other kids my age but I didn't know a way to make that happen at the time. So I carried that guilt with me. Until I started to work and have goals and date and get a life. The guilt lessened. I had almost ten years..Then I got sick. I couldn't do those things that people value anymore. I had no way of proving I was a good person. On top of that you get people telling you to push yourself and not understanding. So in comes the guilt.

In many ways what I'm going through now is similar to what I went through as a teenager. Feeling helpless, no one understanding, or thinking they understood and telling me what to do and making me feel worse. What you say about having compassion for yourself is true. And I think if that girl I was, was someone else I would have compassion for her.

What's frustrating is I know all of this stuff, but yet I keep falling into the guilt trap.

But hearing form other people here that understand is good. It reinforces the good things I say to myself.

Thanks for your help

Susan

.

I hate the guilt.

I get it in many forms-it's part of my personality.

I feel guilty spending any money at all on myself because I feel like I'm not a contributing member of society any longer I know really warped. I've got issues. So I really have to let go and say hey I'm going to try to enjoy every day of my life despite it all.

Just do what you feel like you can do and do not try to compare as much as possible. I think it would probably be possible to come up with a great comeback for situations like you encountered if we think on it hard that would make the therapist reexamine their own words.

If the pain that you're experiencing or discomfort outweighs the benefit of the event that you're attending it is pretty much a no brainer-stay home!

Thanks for your support.

I know logically that guilt does nothing for you. If anything it beats you down. It's just really hard to fight it. Sometimes you need to hear from others.

I would love to come up with something to say when people like that therapist say the things they do. My first thought when she said "well Anna comes here and she has Fibromyalgia". I wanted to say well good for Anna!LOL But that wouldn't' be so smart to say. I think it might be important for me to let her know how that made me feel to be compared to someone else.

I think part of it is accepting I have a different life now and my goals and achievements are going to be different than other healthy people. I really don't care anymore about having a career and money and husband. Well, those things would be nice but right now my main focus is well, me. I think society doesn't work that way. It's all about achieving, getting out there and getting more. So it makes me feel guilty for not doing that..Even if I don't want it. stupid I know. It's hard habit to break.

Well thanks for listening and thanks for your reply. It helps.

Susan

Hi,

I am so sorry that you are feeling so bad at the moment. I just wanted you to know I completely understand how you are feeling.

I have been ill for nearly 4 years now with some sort of neurological problem plus autonomic issues that have left me housebound and on some occasions bed bound for days on end. I have no diagnosis of any ilness other than low b12 serum levels and low normal cortisol levels.

Its not helpful to try and compare yourself with other people or for others to compare you with people that are also chronically sick. You do know how your body is coping with things and you are the best advocate of what is best for you.

I also get times where I am hard on myself and call myself lazy or I am not trying hard enough. Its like this other person takes over and says "you aren't sick, if you pushed yourself you would do more." So you do more because you think the voice is right and then you end up collapsing and being even sicker. Its a vicious circle and its so easy to get sucked into it because for me no one believes (other than my family and husband) that I am sick. I look reasonably well and I can do the basics of day to day living most days, but do anymore than that and I will collapse and be bed bound for a few weeks.

I think you will find that there are a lot of people on this forum that feel exactly the same way you do. Ive seen posts where people have said they have pushed themselves for family occasions and ended up sicker. You aren't alone in this.

This is a great place to vent when you are feeling so overwhelmed you dont know where to turn, because a lot of the people here have been there and understand it.

Plus your typing was fine!

Hang on in there

Rach

Rach, thanks for the reply.

That must be really hard not having a diagnosis. I have a diagnosis, several in fact:(and I still doubt myself . But I know that you are sick. I can say that because I read you words and I hear myself. I had a friend years ago that used to fake illness to get attention..that's a whole nother kind of talk. I wish people would realize the difference.

Anyway thanks for the support. I know myself how if I push too hard I wind up making things worse..It's hard when most of the people you talk to don't get it..But as you said people hear will. That helps.

Thanks again for your understanding.

Susan

First off please forgive any typo's but I'm not feeling up to reading right now, so I can't reread this to check for typos and I'M not the best typist.;)Sorry, but hey, maybe I'll give you a laugh.

I"ve had a hard time dealing with feelings of guilt. Ive been in the house a lot lately and I guess its getting ot me. I"m not bedridden but I 'm just not up to doing much.I know I"m sick. I know I have something that most people don't understand but yet it gets to me, and i start to feel like I should be able to do something about this. Like i"m just not trying hard enough. It's almost like people that get brainwashed. You know how you see those reports on the news shows about people giving false confessions because they just cant take anymore badgering from the police, and they're mind finally gives in and makes them think , maybe they're right. Maybe I did what they said..It's like the same thing. year after year I see doctor after doctor and they say the most hurtful things sometimes. Or worse they ignore you alltogether. And when you look to people around you for support you get things like. "well, When I get sick I push myself to get out" and helpful suggestions like that. SO instead of feeling supported you feel, Guilty. Maybe I"m not trying hard enough. Maybe it's something I'm doing. Maybe I"m just not strong enough. SOmetimes it just gets overwhelming. And i joined a support group but I'm not going to go anymore. Last time I got sick while i was there, and I was afraid i would pass out. Then the therapist running the group tells me how it's alright to come when I'm sick and how this other woman makes it here who has Fibromyalgia. So that's great instead of saying something like. Well you know you'r e body, so if you feel like you're not up to it you'r e the best judge of that. Just know we're here for you. That would be lovely to hear.. But instead she' compares me to this other woman not knowing how either of us actually feels. You then get the feeling of..well Anna nmakes it here so I should..not real helpful.

IT's really horrible when you feel horrible and you miss your life and then on top of all of that instead of getting support when you talk about it you get suggestions that don't help because they don't understand. I know it's only human but I wish some people would just learn how to support a person and not give them advice on how to deal with things that they have no idea about.

Well I just had to vent. Thanks for reading..if you could understand my typing.

im going through the same thing right now.. my sinuses and ears have been messed up this past year to the point my vision is affected. They are very dry and i get pain all through my face and ears. Also have fluid in the ears. Been on tons of antibiotics that help when im taking them, but not after.

I have done tons of research and keep coming back to the same problem: candida overload. Yes many will argue it does not exist, but i do believe if your immune system is compromised and you are on tons of antibiotics after another, then you can have it.

This might not be your case, but i have almost every symptom listed for it. (there are tons) I am going in this week to get tested for candida (the stool is the best way)

i really hope you feel better, and i know how horrible it is to go through all this and be so frustrated that no one can help you. One day you will find your answer, it just takes time. but dont give up!

Thanks for the encouragement. I really need it at this point.

I too have had some much antibiotics that I wonder about candida. To me that's why it's so important to look for the cause rather than just treating it. I don't think there are any tests for Candida that my insurance would cover.

Thanks for the support though.

I guess we gotta find out what we can eat and what we can't.???

Sometimes I'm okay with potatoes-so I don't know why that little bit really set me off last night.

I know peas are a no no for me.

The last two times I ate those I felt horrible.

I seem to do okay with a nice salad.

But I doubt there is anything in it that raises my bp very quickly like carbs would?

I haven't experienced what you have exactly but I have heard that some people have their POTS symptoms exacerbated after eating. I have felt a few times like I was weak or felt a bit like fainting right after eating.I found this weird cause usually people feel better after eating. Last time I had a subway sandwich an I felt faint right afterward..Maybe it wasn' t the particular food but the stuff used in making it. When you're out or use packaged food you don't know exactly what's in it. I guess the best thing is to eat whole foods as much as possible.

Over the past two years I've had one ear infection after another. I've have fluid build up in my ears too even though I had ear tubes put in several times. Only the fluid is supposed to drain out of the tubes when that happens.

what usually happens is I spend weeks with my ears clogged and no draining..until I finally get an infection and then they treat that with antibiotics.

I was wondering if anyone else suffers from frequent ear infection or fluid in the ears or even just dizziness.

I've been dizzy and unable to drive most days for about two years straight. I really think the sinus and ears are the reason but they keep ignoring my opinion.

I'm trying to figure out myself why this keeps happening and the doctors (I've seen three plus two GP's) that are not all that interested in figuring out why this keeps happening . I had one say to me ..You can't be perfect..at which point I broke down and cried and said I dont want to be perfect I just want to be able to get out of my house..Didn't seem to get through to him though...He said something like "Just try this ( the same thing we've done ten times before) and see me in two weeks". Sure it was better in two weeks and then in was back two months later. Not that it didn't bother me in between.

I know this is not a sinus forum..but I also know that POTS causes a lot of symptoms..I know I have a weakened immune system, but I think there's more to it.

First off, I have to take six salt tablets a day plus load my food with salt and drink a couple of gallons a water a day. Just to stay hydrated and keep my BP up high enough. I know I can not retain water. My skin, hair, eyes and so dry. I have to put baby oil on my skin to keep it from flaking and in the winter to stop it from cracking. I have been tested for Sjorn's syndrome and it came up negative.

I've seen two neurologists about the dizziness and they can't find anything..One said it might be migraines but he didn't like diagnosis that because it didn't quite fit.

I'm starting to suspect that the dizziness I've been experiencing over the past few years has to has to do with the fact that my body does not retain salt and water. I think the excessive dryness is causing the mucus to become so think that it will not drain.

For instance the last time I went to the GP she said I had fluid in the ears. I told her it wasn't draining, and she could see that. She told me to use the Neti pot more to thin the mucus..But what happened was the ear tubes were so clogged, when I started using the Neti Pot more often, it put my more fluid in my head and it felt like it was going to explode. A few days later I got so sick the room was spinning, and I felt so sick to my stomach I was throwing up. I realize now that you can't put more fluid in your head if you've got an obstruction like that. So I went to the ENT who said my ear tubes were clogged with hard debris. I asked if this could be caused by dryness, he said yes..But wasn't interested in discussing further. He told me to use peroxide to clear the debris which it did..but that's it. They only treat what is happening at the moment they dont' care why it happens and keeps happening.

The thing is I feel at this point I've got enough evidence to suggest that I need more moisture in the sinus..however, it's hard to know what to do. like I said last time I started using the neti pot more the room started spinning. Plus,

I've had fungal infections in the past so I'm scared because I don't want to put my humidifier on too much or do the sinus rinsing too much for fear of creating a fugal infection.

I really wish I had a doctor that would take some times to think this trough with me and suggest different ideas of dealing with it..I hate experimenting on myself for fear of making it worse.

Sorry I guess this is a bit of a rant already. But I just came back from another ENT..the one that put the tubes in. ( my original ENT no longer does surgery, he's over 70, so I had to go to this guy to get the ear tubes put it) He doesn't think I have a problem because now the tubes are clear. I told him what had happened but he just ignored it. I told him how my GP saw the fluid in my ears last month, He started going on about how interns don't know anything and and when I told him my ENT said he saw debris in the tubes two weeks ago, he commented on that doctors age. (he's about 70) So apparently to this doctor if your young or old or a patient, you know nothing.

Ugh! I really wish I could see a doctor that treated me as a POTS patient because they might look at things differently.

Okay, end of rant.

I just got my labs back. After 6 weeks of prescription high-dose vit. D, my level rose from 22 to 27. Wow. And the vit. D council prefers that we get up in the 50s. At this rate, it'll take me until next summer to get into a good range!

Thanks for that info. my Level is now up to 28, still a little low. And I was wondering too..the range is up to 100, but what is optimal?

I will print out and take that info from the Viatmin D council to my doctor when I go.

Problem is most doctors stop as soon as you are in the normal range. But maybe some of us that are Vit D deficient need a level of 50 ng/ml to feel improvement.

Last March they discovered my son was vitamin D deficient. His was 7, waaay to low. He was in bed all day and night and his POTS symptoms were much worse. After being on vitamin D for 1 week he had great improvement with everything. His POTS symptoms were still there, but he became functional by 1:00 in the afternoon and his energy level also improved greatly.

Vitamin D was a great help to him. Since he still isn't get sunlight(or not very much anyway) he still takes 2000 IU daily.

Christy

I'm glad to hear you Son has had improvement on it.

I know myself last time it was low I felt really tired and felt better a few weeks after taking it..I just don't quite understand why I dont see fatigue listed as a symptom on the medical sites.

I did do a search for Vitamin D and fatigue", and got a lot of different sites with articles saying it could cause fatigue..In fact a lot of stuff about Fibromyalgia and Chronic fatigue syndrome came up and it told about people having some improvement in fatigue and pain, after taking Viatmin D.

I guess your regular healthy person might not feel it if their Vitamin D level was low but if you have something like POTS or Fibromyalgia it's going to make you feel worse.

My doctor didn't say anything--I had requested the test and he allowed me to test. Then, he just wrote the prescription when my levels came back at 17(or 22, I've had low results twice). I just did labwork yesterday to see what it now is. I have to say, though, that while I was taking it, my large joints(hip, shoulders) all ached for a few days after each dose. That is either good news, in that they are taking up calcium, or NOT good news, as they are losing calcium!!!

How are you taking it? Are you getting injections or taking a monthly pill? You said you ached after each dose so I'm getting that you don't take it daily, so I'm just curious.

I've been on six weeks of vit. D, and can't honestly say if my fatigue has improved. I think so, but not sure. My days are spent with things changing by the hour, as in being really fatigued to not really fatigued. Or, feeling not to lightheaded to feeling really lightheaded. I am constantly trying to relook at what I ate or what did I do. So I'll have to spend months actually seeing if I have less hourly changes. I really think it has improved my mood. My mood before was not depressed, but just "blah". I seem to have spurts of actual "alive" feelings, but in my brain only, which I will take! I just wish my body could follow.

Did your doctor think it would improve the fatigue?

You say you've been on it for six weeks..has your doctor taken any follow up tests to make sure you were getting enough?

I'm glad to hear you feel it has improved your mood.

Hi. I know a lot of people that have Chronic fatigue syndrome are known to have low Vitamin D levels. I assume that a lot of POTS people probably also have this issue. My question is to those that have had a Vitamin D deficiency, has it made you feel overly fatigued? I know it's hard to tell when you are already fatigued, but I have felt soo tired lately. I can't seem to get enough sleep. I got some blood tests back and nothing is wrong but the Vitamin D level is low. I know in the past I had a low Vit D level and I felt very extra tired at that time. But when I look up the symptoms it just says muscle weakness and aches. It doesn't sound as bad as this feels.

But still I thought, what is the difference between muscle weakness and weakness. Wouldn't you just feel weak?

Anyway, I guess I'm just looking for an explanation for this exhaustion I've been feeling lately. I normally dont' feel this tired. I can hardly do anything because I get so knocked out by any activity. OH and I've had blood tests recently, and this is the only abnormal that came up.

All of the info I get on dysautonomia and meds I get from medical journals and from medical textbooks. Sorry I don't know of sources that are accessible for laypeople that provide a more detailed explanation than what has already been given here. However, if your doctor wants to know why fludrocortisone is used in POTS/dysautonomia, it would be extremely easy for a physician to look this up in peer-reviewed journal articles via Google Scholar and/or PubMed or to access autonomic textbooks via a hospital or university medical library (ones that aren't in holdings can be accessed via interlibrary loan). There's really no reason your doctor shouldn't be able to find this information, so if you bring up the name of the drug, your doc should be able to research it quite easily. I'm not a doctor (not in the least!) and I find and read all of this stuff; if your doctor can't, you're in more trouble than you think.

Thanks for the info. I guess I was concerned that fludrocortisone might not be that well known for treating POTS. I used to be on a drug that was used for another disease and doctors that didn't understand would always question why I was on it. But I guess the thing was they weren't really doing any research on it.

I suppose even if I point my doctor to potsplace she should find enough info to support me using it..But if not I could always point out the resources you mentioned.

thanks.

I only gained 2-3 pounds water weight (on 0.1mg twice a day) and no increase in appetite. I noticed improvement about a week and half in.

Well that's good to know.

I guess it works differently on each person but still it's good to hear that it helped you and you didn't gain much,thanks.

I saw an endocrinologist who ordered the renin and aldosterone. It is important not to consume a lot of salt before the tests as sodium can suppress renin. Beta blockers and clonidine can also reduce renin levels, but you did not mention being on those. Luckily, I have not noticed any puffiness or swelling, so that varies from patient to patient. I did gain weight, but I needed the extra fluid volume. Too much swelling should be evaluated by a physician.

Thanks for the info about the renin and aldosterone. I will have to watch the salt then if I take the tests. I take a ton of salt each day in my food and then six salt tablets. Yeah I haven't been on Beta Blockers for a few years so that's not problem. Only problem is who will give me the tests and will my insurance pay for it. I hate the idea of gaining weight. I've already got so many things that make me gain weight. I have such trouble just keeping from gaining. Although if it helped me enough I guess I wouldn't mind. If I felt better I might be able to exercise more and that could help the weight.

thanks again.

Susan

I think that I am experiencing some nasty side effects from Florinef. I have only been taking it for 3 weeks now, .1mg, 3x a week and I know that isn't alot. But within a few hours of taking it I am having bp spikes up around 130/79 (normal for me is 90/60ish) and my heart rate is going crazy. Then my tremors are being FAR worse than normal. When it starts doing this I have a headache around 10 on a scale of 1 to 10 and sweat profusely. I am going to the doctor tomorrow and hopefully we can figure something out.

Also Friday7 if you go to NDRF.org there is a handbook for people like us. If you go to the treatment section it has a pretty good description of all the different meds that are used for treatments. Hope that helps some for you!

Sorry it doesn't seem to be going well for you. Maybe you need to start on a lower dose? I know you're not taking much but I know sometimes some people are more sensitive to medication than others. I always start out with the lowest dose I can on Meds cause I've had problems with meds in the past.

Thank you I'll try that site.

friday7,

Considering the dryness, have you been thoroughly evaluated for both thyroid disorders and Sjogren's?

Re: fludrocortisone, I'd say it boils down to how well you're already doing without it. You said you already have your BP under control with salt-loading, but didn't mention the extent to which your other symptoms are or aren't resolved. If you're already under good symptom control, I don't see the point in rocking the boat. If you only have mild residual symptoms, you might have luck adding further non-pharmaceutical interventions to your treatment regimen, such as Rx graduated compression hose and/or abdominal compression (if you're not already doing that), or by trying something like physical therapy or cardiac rehab or some other physician recommended exercise program to gradually work up your muscle tone (and skeletal muscle return of blood to the heart).

If you're still having moderate to severe symptoms, then fludrocortisone would certainly seem like a natural choice for medication as you've had improvement with salt-loading and fludro. would maximize your salt/fluid retention. I'm surprised to hear you say that you've tried Mestinon but never fludrocortisone. Is there a reason that your docs tried that first? Do you have a contraindication for fludro? Or was there a specific indication that made Mestinon a particularly appropriate choice in your case?

Well I tried Mestinon quite a few years ago when I was first diagnosed and I didn't really know about other meds. I guess it was just something that that doc found helpful in some of his patients.

In me , I wound up having gastric problems and the food I ate wound up in the toilet a few hours later, so that was not good for me.

I am dong better than when first diagnosed. At that time my Mom had to push me around in a wheelchair in order to get out. Now I can walk and use a walker with a seat so if i feel faint I just sit down. But I still can't get out much. I still can't work. I still can't even get a volunteer job. Sometimes I can't even do much around the house. I need improvement.

I did have a test for Sjogren's done a while ago. It was a blood test. That came out normal.

And I was found to have hypothyroidism last year. I've been taking meds for that and my TSH is in normal range now.

The thing is it's hard to know what its causing what problems sometimes.

Like when you have POTS , a lot of people have low Vit D, low B, CFs, Fibromyalgia, GI problems, Hypothyroidism, etc etc,

So It's like, is the POTS causing me to feel weak or is it the Hypothyroid. or is it, the Anemia, etc. etc.

But I know since I haven't had a doctor that was informed in POTS I kind of let that part of it go.

I"ve had no doctor that treats me as a POTS patient because of my insurance (Medicaid) I only get so much help. No one I see knows anything about POTS. I've been from doc to doc to doc..and the only one that knew anything about it enough to treat me was the first doc that diagnosed me, and I can't afford to see him.

Well I've been treating all of the things that are wrong with me but not the POTS because of this. I feel like it's time to look a the POTS again and make sure I'm doing what I can to treat it right. It's gonna be hard of course because I'm dealing with a GP that never heard of it before me, but she seems nice and I feel if i bring in the right information , she might be willing to try florinef and things like that.

But I'm wondering if you or anyone knows of any good clear info on how and why it is used for POTS?

Wiki has some good info but I'm not going not bring in anything to my doctor from Wiki. Other sites I have found are way too technical for me to read without using a medical dictionary.

So if anyone could point me to a good site that explains Florinef well and why it is used for POTS I'd appreciated it.

It's my understanding that it's not just your BP that's important, it's your blood volume, too.

I'm on salt tablets, midodrine, and florinef. Before I added the florinef the salt and midodrine were helping, but they wore off very quickly and I crashed at night when I wasn't taking them. The florinef helps your body retain the salt, and seems to help extend the benefit of the midodrine and salt for a longer period of time. I have found that taking all three gives me a much greater outcome than any one of them by themselves.

So the Florinef helps with the blood volume..and you found the Midodrine helps also? See when i was on Midodrine, that was it. I wasn't even taking salt tablets back tehn. So who knows, maybe it might have been more beneficial had I been taking it with the Florinef and the salt.

To preface, everyone responds differently to medications. So, the following is just my personal experience.

Florinef has been a wonder drug for me. I was bedridden before I started Florinef in January. I believe it worked well for me because my aldosterone levels were undetectable during several blood draws. I had a sunken in appearance to my face, salt cravings, and extremely dry mouth and eyes. I looked like a prune. The Florinef helped expand my blood volume. I was not able to this with salt alone. It did improve my mouth and eye dryness. With that being said, I only take 0.1mg/ day. My blood pressure gets too high on higher doses, and I get the classic Florinef headaches.

It's important to "start low and go slow". Florinef does not work right aways but builds in your system over a period of 2-3 weeks until steady state is reached. I get my potassium levels checked periodically because Florinef can lower potassium levels. It causes your body to retain sodium at the expense of potassium. Personally, my potassium levels have always been well within normal range. Florinef is also a weak vasoconstrictor. It can help blood vessels constrict, but is not as powerful as Midodrine in this regard.

The point of Florinef is really to help your body retain salt. The question is whether you are able to do this adequately without Florinef. You may ask your physician. Have you had aldosterone and renin levels checked?

Hope this helps a little.

That's what I feel like right now, a Prune.LOL I'm glad to hear it helped you with that.

No I never had my aldosterone and renin levels checked. What is the significance of those tests? The thing is I'm being treated by a GP right now and so I've really got to bring the information to her. So in order to get any tests or try new meds I've got to get some information I can bring to her showing why this is needed for patients with POTS.

To tell you the truth I haven't been paying attention to the POTS since I haven't had a "POTS" doctor so I've been concentrating on treating the symptoms mostly, like GI issues, and sinus . plus hormonal stuff. But now I feel I want to go back to looking at the POTS itself and making sure I'm doing all I can to treat that. So I kind of have to re educate myself.

I didn't know it can lower potassium.

I've also seen that people take Florinef and salt and say the two together are more helpful than just the salt. I think that Florinef is a weak vasoconstrictor is important since I'm only taking salt. Maybe adding the Florinef can help the blood volume better.

Multiple doctors told me to add salt for years and it didn't help, but this was prior to diagnosis. When I finally got someone to listen I began florinef. The florinef helps me. When I wasn't on it my heart rate was much higher and symptoms much worse! To tell the truth, when I first started it I noticed a difference. After a while I assumed it was helping but was still so miserable that I wasn't sure. THEN, I had to stop it for a while and let me tell you: it made me appreciate it all over again!

Florinef enables your body to retain more sodium (salt) than it can on its own. With the retained sodium is retained water (in the body, where salt goes, water goes). This means that on florinef your body's total fluid volume increases, which should decrease symptoms and help your body maintain blood pressure with less of a heart rate increase. Being a POTS patient, that's where my knowledge lies and to that, about 50% of POTS patients are hypovolemic (low blood volume) so an increase in volume (even if not blood itself) can help. Myself, I am not considered hypovolemic POTS but as I said before, still appreciate an improvement.

Realize though, that all the fluid retained won't be in the vascular system but outside as well. Usually, this just means some puffiness and swelling, mainly in the legs, feet, and ankles. The swelling can be minimized by compression stockings and the amount of fluid retention monitored by keeping an eye on your weight. Now florinef is a steroid (glucocorticosteroid)so if you're diabetic or border-line, you need to keep an eye on blood sugar. There are other side effects, of course, more so if you have other health problems, but these are the emain ones that the doctors and my own research uncovered. I hope I didn't confuse you with too much medical jargon and if so just msg me with any questions.

As to the dryness I don't have much to say. My skin and lips are really dry too and cottonmouth isn't rare either.

Thanks for the reply. I have a little bit better idea of what Florinef can do for you.

I'm not Diabetic but I have Hypoglycemia, so I already keep an eye on my Blood sugar levels.

You mentioned puffiness. Have you gained weight at all due to Florinef? just curious. I guess a little added wight wouldn't be bad if you feel enough improvement in your health. I'm just scared because I already have such a hard time fighting to keep weight off.

How long were you taking it before you noticed an improvement in symptoms?

I have never tried Florinef. I got my BP up by just using the salt so I never bothered. But now I"m wondering I should try Florinef and other drugs like it.

I tried Midodrine, and Mestinon, but neither had any effect.

I tried a beta blocker but that didn't help either. Then I started taking salt tablets and my BP went up. That helped a lot. So I never thought of using Florinef. I guess I thought the salt did what the Florinef would have. But now I'm thinking , I don't really know a lot about the drug and what it does. Perhaps it could have some other benefits for me.

So, I just want to know people's experiences with Florinef. If it helped you, and if it did, how has it helped you?

P.S. I have a real problem with dryness. My hair, my skin, my sinuses, everything. and now my eyes are so dry they burn. I was wondering if Florinef helped with dryness at all..since I heard it was to help retain water.

It will be 6 years in December since I first got sick, 5 1/2 since my diagnosis. I learned early on that you have to be your own advocate, because you are the only one who really understands/feels what's going on in your body. I have bounced all around from doctor to doctor over the years. Mostly because they get to a point where they don't know what to do with me and refuse to see me anymore, partly because I get tired of their attitudes and doubting me. I've probably seen every type specialist there is for one reason or another. When the doctors can't explain what's going on with me, I usually don't push the issue, thinking it must not be life threatening, and then I learn to deal with it. Just accept it as a new part of my life. I currently have a dysautonomia doctor (who wants to refer me to Vanderbilt cause I'm getting too complicated), a cushings specialist (who insists I'm cured even though my symptoms are much worse and my hormones are far from balanced), a local cardiologist (who has been a great help, listening to all my concerns and new symptoms and telling me what kind of doctor I need to see for what), a neurologist (actually I'm in between neuros), a GI doctor (also changing docs because the last guy said I became too complicated), obgyn (for women issues and to try to control my hormones by controling my irratic periods with birth control), ENT, an internist/pcp, and it was suggested I get a local endocrinologist. They all have a special diet they want me on and their own idea of how I should exercise and for how long. None of them communicate with each other, so I'm left to figure out who to listen to and how to manage my life (how far to push my limits, how to cope when I crash, etc). My internist/pcp, who I thought was supposed to help me figure out a plan of action, is very little help. When I see him, he asks about any new developments in my conditions, but never comments on any of them, then address the reason for the visit then sends me on my way. If it wasn't for this forum and the advice I find here, I don't know where I'd be. But even still I'm finding that its getting to a point where I can't manage all the issues myself, I've become too complicate. Most days I can barely think straight let alone try to understand medical issues. Am I alone is feeling like I have to figure this out for myself? I know all patients are different and I have two "rare" misunderstood conditions, but if the "professionals" give up so quickly, how is a 23 year old with a 10th grade education supposed to figure it out? Anyway I'm tired, with a migraine who is probably having her biannual nervous break down. Thanks anyway.

Wow..you took the words right out or my mouth. I am so sick of trying to figure out things for myself. It's especially hard when you get brain fog all of the time.

I think what frustrates me most, is the lack of caring. I think that should be a big part of what a doctor should be. And also the lack of communication between doctors. It's really ridiculous when you are seeing all of these specialists and none of them communicate with each other. I once had a GP that asked for one of my specialists number..I felt hope...but she never called them.

It'd be so much easier if you had a complicated issue and instead of being ignored, passed from doctor to doctor, not listened to etc. IF they would take the time to listen and work as a team.

I guess having a degree ,as the others say , you might still get some of the same problems. But I really do wish I could take a class to educate myself more in all of this. I do think someone that has a degree might get a little more respect than people that say "I read this on the internet".

I'm just getting tired of having to educate myself. My mind is too foggy and I just want to give up already. And I don't like that. But I'm just tired of it all.

A while back, when I had a little money , I used to see a holistic doctor. She was very nice and it was almost a therapy session when I saw her. Not just because she was understanding but because if I brought something up medically , she'd listen! And then she'd discuss it with me. One time in particular I brought in some info and we talked about it and tried it..And it helped me.

She did help me physically but I think what helped most is that she treated me so well as a person. I wish more doctors were like that. Unfortunately I can't afford to see her anymore because of the insurance. But It would help so much if some doctors would realize that when you have a chronic illness you start to really know your body. You know not only from instinct but from experience.

I was really hesitant to try compression hose because of my Raynaud's issues as well as the burning pain in my feet and legs. My rheumatologist suggested starting with Sheer Energy pantyhose as they exert 5-10 mm Hg of pressure, enough to make a little difference in pooling but still extremely mild. When I got up the courage to buy my own pair of prescription hose, I did go to a medical store where they're trained to measure and bought my first pair there. It was more expensive but they had a policy that allowed me to return them if they didn't work for me.

thanks fro the reply.

I'm glad to hear your rheumatologist told you to start with Sheer energy pantyhose because I was thinking of the same thing. My mom used to use support hose and I was thinking maybe I could try them.

I did not know they were trained to measure for the compression stockings at the medical supply store. That's good. Thanks for the info.

I never tried compression stockings but I hear so many people hear saying that they use them and it helps.

I had wanted to try them once but my doctor at the time was unsure if it was a good idea for me. She wanted time to check with the CFS specialist I was seeing when I was diagnosed with POTS, but I can't see him anymore since I cant' afford it.

I am being treated by a new GP now. I just started seeing her, and she just learned about POTS from me. I'd like to try the compression stockings but I'm a little afraid now.

Has anyone that hae used compression stockings ever had trouble with them making you feel worse?

Also, I read on WIKI-

"Nonetheless, there are several crucial cautionary steps that need to be taken before self-prescribing such medical hosiery! No.1 is the person's ABI (Ankle Brachial Index) for both legs. It must be >1.0 to wear such stockings. Otherwise, they may obstruct the patient's arterial flow (the ABI indicates how unobstructed one's leg and arm arteries are. Any competent Doctor or nurse can measure & calculate one's ABI).No.2 Fit. It's crucial that such hosiery (Stockings) be properly sized! The compression at the smallest part of the ankle must be the highest with a 70% reduction of pressure just below the knee! In top clinics, vascular doctors & nurses use special pads to insure uniform higher pressure around the circumference of the ankle (smooth out the irregular cross-sectional profile.) So long as the compression gradient is 15-20 mmHG, the ABI (for both legs) is >1.0, and the stockings are the proper fit, self-prescribing is reasonably safe. "

I'm unsure how to get a proper fit, and I definitely don't understand about the ABI. It says ,"Any competent Doctor or nurse can measure & calculate one's ABI"..is this true?

I'd really like to try the compression stockings now that it is getting cooler. That way by the time summer comes around I might be used to them.

Is there any information anywhere, about compression stockings and why they work for POTS patients, that I can print out and bring to the new GP perhaps? Maybe then she could help me figure out the proper size and ABI.