friday

People with POTS or other forms of dysautonomia are going to have their colds for a longer period of time just because there body already isnt functioning properly so add a virus to that and your gonna not recover too quickly...so that is normal for us, but it sure does stink!!!!

Thanks. it helps to know that I'm not alone on this.

How do you deal with doctors who won't listen or believe your problems?

Like my temp. My normal temp is 96.6 so If i get a fever of 99.8 I feel pretty bad. My face even gets red. Yet when I try to tell a doctor I had a fever. I always know it' s coming.

"How high was it.?

..um 99 .

OH that's not a fever...

Yeah but my normal temp is 96.6.

yes but that's not a fever. normal temperatures can fluctuate and be a little over 98.8.

Yes but my normal temp is 96.6..and on and on.

They just can't accept that since my temp is low, a 99.8 is equal to about 101. ANd I feel really bad.

I dont' understand why it is so hard to get through to them.

I have the same problem with my salt levels. I need to know if they're ea little abnormal. Sometimes doctors will tell you everything's normal, after taking blood tests. They ignore little lows and highs. I tell them I need to know the numbers because i have trouble with keeping my electrolytes up. ANd they say oh well there's always little fluctuation's that's okay. And I then have to try to explain to them, if i can get a word in edgewise, how important it is to me that these levels be normal. They don't understand how it effects me because their minds see everyone as a being normal. Just like the temps. This is what's normal.-98.6 Why is it so hard for them to except that some of us aren't normal. It makes it so hard . ANd when I try to explain it they don't' want to hear it. They think it' s just overreaction or well who knows. It drives me up the wall.

I also have this trouble with my iron anemia. I feel it way before the hemoglobin shows it. They took me off my iron tables cause they said I didn't have anemia. I said it' s becuase i 'm taking iron tabs but of course they said I didn't need them so a few months later I feel weak and ask for the test. Of course hemoglobin shows up fine. Then I keep feeling weaker so finally i got a doctor after twisting his arm to do ferritin and saturation levels. They came out so low he had me back on iron pills immediately. Yet before that he thought I was fine. Don't understand this.

So maybe it isn't' normal for iron to effect people in that way. Maybe most people don't' feel it until the Hemoglobin clearly shows it..but I feel it way before.

Why is it so hard to accept that some patients are different.

I'm really nervous now because my GP has left. I have to get a new one.Not that he was perfect but over the years he's actually saw the weird things my body has gone through.LOl And so we had some kind of an understanding. He also knew my CFS doctor and had respect for him so that helped. If my CFS doctor said something he'd consider it. But now I have to go through it all over again.I'm so sick of this!

I was just curious , do others here find it's hard for them to get rid of infections or viruses?

It seems whenever I get sick it takes longer than normal to get rid of these things. My brother and aunt had a stomach virus and they got rid of theirs.

Then I got something and

at first it seemed vague. I was just kind of sick, but then eventually I got really sick and figured it was the same virus they had but it stayed with me. I went to the doctor and she even gave me antibiotics because she thought it was a bacterial infection. But then after the five days of antibiotic I still had whatever it was. I still feel sick now, about a month after it started, but it seems like the fever has gone down and the symptoms are a little better. I 'm not even sure what it is.

This seems to happen whenever I get "something" It takes a while to develop and then it stays with me for a long time. I see other people i know get sick , then they're sick bad for a few days and then they have a few days recovering.

I was just wondering if anyone else had a similar problem to mine. Whenever you just seem to have a harder time fighting things and have them a longer time than normal. One time a doctor said I didn't have a virus or infection cause it wouldn't last over a month. But then what was it.

Hi All!

Thanks for your responses! It is kinda funny because my question came after going to the nutritionist and she was wondering how long I would be on this diet and what changes could be made, because she seemed to think there maybe some long term consequences.

I think she was thinking the increased salt, and increased meat (with it comes increased saturated fat intake).

Since, being on the board I have seen where a lot of people appear to not eat much meat, due to that it makes their symptoms worse. I find this interesting because my cardio. said to make sure and get a ton of protein and gave me a really hard time because I didn't want to eat a lot of meat. He refered me out and explained me as uncooperative etc. to his change of diet plan. All, I did was say I would try the protein, but I would need to try and find soy and other proteins because I know I didn't want to eat a ton of meat.

So, all of this has left me scratching my head on the whole eat meat or not issue?

Later on I may need to see if I can find a nutritionist that is a little more familar with all of this because she was only used to trying to put people on a diet or decrease High BP.

Thanks for your help!

Yeah that's the problems with nutritionists. They used to dealing with certain things. I would think if they a good nutritionist they should be able to help you figure out what's right for you as an individual..but maybe that' hoping for too much.

Hi!

I was just wondering if anyone had been told or has found out anything on what are the long term effects of these dietary modifications that we are told to make?

Example: Salt? Most people are told to limit or avoid it? Yet, we are supposed to pile it on.

My doc said to increase protein, specifically meat, so what is the long term side effects of increasing protein consumption? Increased fat consumption etc?

Decreased carbs and sugar of course is good. And decreased dairy is likely good as long as you get enough calcium etc. from other sources.

I don't know if all the extra water would do anything bad?

Does anyone know how much water (fluid) is too much? I drink a ton, probably at least 3 liters a day. Sometimes possibly close to 5 liters.

I am just curious what all this may do to myself in the long run?

Thanks!

I was thinking would it be possible to see a nutritionist? They might have some answers of these questions.

I know certain foods effect certain people in different ways. Like someone mentioned protein and the kidneys. I know my Dad has liver problems and so extra protein could be a problem for him, So, maybe you should check with a Nutritionist so that they can help you eat right for your body.

Melissa, I'm so sorry for your problems. I know you probably aren't up to answering this but I thought i"d ask some questions anyway.

You said you originally had some tests..blood cultures and they didn't show anything But later on they found a partially collapsed lung and pneumonia? sorry If i didn't get this right but I'm having trouble reading right now ans I am not feeling well.

I am having fever too. Not as bad as yours but daily. And my normal temp is about 96.5 so when I go to the doctor and it's 98.8 they'll say oh that's not a fever. I tell them about the fact hat I run low but they never really trust that. plus my GP left and I 'm left to start over with a new one..good timing.

anyway, Last time it was 99.9 so they paid a little attention to it. Gave me antibiotics zpack which didn't help.

SO I guess it would be equal to a 100 to 101 temp that I'm having. IF I was normal. I'm trying to figure out where mine in coming from also.

Like I said you're is much worse. But I know how it feels to feel sick from this fever every night, and not get any answers,

So, I hope you get your answers and get this resolved.

I was just wondering if there is any way to take potassium besides hard pills? I had to begin supplements again. WHen I used to take them sometimes they would come out in the toilet. I had IBS and sometimes I get that with certain pills. So Some of them I have to chew or get a liquid version.

I was wondering if anyone else had this trouble with potassium and what they did. I don't' know if I can crumble them up maybe? I just don't' feel comfortable not knowing whether or not they are getting into my system. Since my Potassium is a little on the low side I want to make sure I get the benefit of the pill.

Thanks for all of the replies.

I am so confused about what to do though,LOL It so hard because it' s different for everyone. I do see that some of you had trouble with the hormones.

Right now I'm thinking maybe I should try to stop the Prempro and see how it feels. I'm scared because i don't know if maybe I just need more hormones. Maybe it's not enough. Then it could be too much or this paritcular brand could be upsetting me. I just wish i knew one way or the other. I've been feeling sick now for a few weeks. And now I feel more exhausted. I saw a GP and she said to try a week off and see if it helps. I just hope it helps me feel better.

well thanks again.

HI. I've recently had my ovaries removed. I tired to keep off of HRT but I found I was just getting too many bad symptoms. I felt I needed something.

Anyway they put me on Prempro, which is in the same family as Premarin. I think it' s been a month. The thing is I feel very weak and tired. I felt that way before the Prempro, But I feel it' s gotten worse.

Now I have read an article by the author of "Screaming to be heard" and in it she stated that Premarin was not good for patients with CFS or Fibro as it could worsen symptoms.

I have been told I have CFS prior to being diagnosed with POTS and as we know a lot of the problems we with P.O.T.S. have we share with people with CFS such as low blood volume. So I am concerned about being on this drug because I am concerned it maybe making the CFS worse.

I was wondering if anyone here is on HRT and if so what kind?

Have you felt an improvement of your symptoms after receiving HRT or ERT?

Hi!

I was just wondering if anyone had been told or has found out anything on what are the long term effects of these dietary modifications that we are told to make?

Example: Salt? Most people are told to limit or avoid it? Yet, we are supposed to pile it on.

My doc said to increase protein, specifically meat, so what is the long term side effects of increasing protein consumption? Increased fat consumption etc?

Decreased carbs and sugar of course is good. And decreased dairy is likely good as long as you get enough calcium etc. from other sources.

I don't know if all the extra water would do anything bad?

Does anyone know how much water (fluid) is too much? I drink a ton, probably at least 3 liters a day. Sometimes possibly close to 5 liters.

I am just curious what all this may do to myself in the long run?

Thanks!

I think it's mainly because salt can cause a high BP. You always hear about how bad salt is but people don't realize if you have a salt deficiency it is going to help you. Salt is bad for most people, so people just assume it's bad for everyone.

In most cases of P.O.T.S. we are trying to raise out BP. Of course like some of the people hear have said you have to monitor your BP and your electrolytes while you are adding salt and water.

But if you already have high BP and P.O.T.S. that's a different story. You'd have to go about things differently and i"m not even sure how. You'd have to ask your doctor and some of the people her who have a high BP about that.

I have a book to recommend for you.

No Death, No Fear (Paperback)

by Thich Nhat Hanh

you can go to amazon and read the customer reviews to see if you might like it. Thich Nhat Hanh is very readable, personable,

simple and profound.

I haven't been reading much lately . I can' t read much cause I have trouble with my eyes, but I read a little bits at a time . I have read are books are to do with Zen, budisum, The I ching, Etc. So I have heard of Thich Nhat Hanh and particularly that book. I guess I was afraid to read it. LOL

See, I had a near death experience years ago.

After that I didn't really have a great fear of death.

But then my brother died,

and then I went through an experience in the hospital where thought I was going to die after that.

Part of what was hard was that I felt bad for leaving my family after they already lost my brother. The other part was just not knowing what happens after.

I'll go over to Amazon and look for the book. If it isn't the right one I can look for others. I think it might be good though because I have found books on eastern philosophy to be helpful.. It 's something I have to deal with. And I have to find a way of dealing with the fear. Thanks for the suggestion.

Friday,

I know just how you feel. My little one, when he was a toddler, almost died in my arms. He was actually blue and unconscious and I had to do rescue breathing, etc. He's seven and healthy now, but you never forget... Even now, if I'm around someone who even sounds like they are having somewhat labored breathing I tend to overreact.

My escape is to read. I love to read, and I can lose myself in books. It is better to get uplifting or funny ones, though, and not gruesome mysteries or Stephen King novels. After reading for a while, I find that my panic is pretty much gone and I can go to sleep.

Are you on any meds that might help you with this reaction?

Good luck,

Angela

Angela,

I'm so glad that you're child is alright now. That must have been so horrible to have to go through.

But I see you know what I mean. It's a reaction that you don't really think about, it just happens automatically.

I'm glad you found something to help you. My mother's a big reader. I wish I could read but I have trouble because of my eyes. I have thought about books on tape. I htought maybe I would try to listen to that at night and maybe it would be relaxing. I'm gonna look tonight and see if they have any online that I can download right into the computer. Thanks for the suggestion.

The only med that really helps with anxiety is Ativan. I've tried other things but they never seem to work. But it doesn't put me to sleep.

thanks for sharing your experience with me.

I don't deal with scary stuff well at all, actually. So, I am right there with you. HOWEVER, I am really working hard on not being so scared and worried all the time. It's just not worth it.

Thanks.

I think that's the thing. I'm trying to deal with the fear. It' s so hard. It' s just hard to address all of the issues I have in therapy in just 45 minutes a week. I need about three hours.LOL

I want to try hypnosis with my therapist. Problem is right now I'm too sick to ride all that way..She's pretty far so we do phone sessions. But I was hoping that might help me deal with the fear easier.

Hi, I sympathise with you. It is a horrible feeling. Deep Breathing exercices have helped me with this and I also take a mild tranquiliser or anti-histamine which helps the relaxation and slows down the tachy / restlessness. I also do some relaxation techniques which involves repeating a phrase over and over in your head such as: 'My left leg is very relaxed and comfortable' - repeat 3 x and then go on to right leg, arms and other body parts until you should eventually fall asleep. Emphasising a different word in the phrase each time you repeat it, will help relax your mind as well as body but it is important to keep to the same phrase. It is good to practise this when you are feeling better too so that it becomes easier to do at the times you really need it. I do hope this helps! Helen

Thanks,

Yeah I have done those types of excersizes in the past, and found them helpful.

I guess what happens is when have trouble breathing it gets harder to do them. Or when I feel this really weak feeling. It' shard to describe but when I am falling asleep, it' s like all the life is draining from my body. Then that scares me and I wake up. I can do the excersizes and get to the point of relaxation enough to start sleeping but then like I said I get these weird feelings and get scared and then that wakes me up. I gets really frustrating relaxing yourself with all of these excersizes and then get jolted awake anyways....I guess what I really need to do is work on the reaction I'm getting to these feelings. trying to re frame the way I'm thinking about them. Not an easy task.

But all the support helps. Thank you.

Friday,

I SO feel your fear!

I think the breathing exercises (and relaxation in general) is an excellent suggestion. You're doing the right thing also by being aware of what you're telling yourself. I know that's a huge issue with me, and I'm working on it!

I don't really have anything new to add. I just wanted to let you know that I -- and we -- understand.

Amy

Thanks for your understanding.

I also have been taught the relaxation techniques..for trying to sleep etc. I guess it' s difficult.. sometimes it helps and sometimes I just get nervous about using my breathing to relax.

See when my brother passed one o f the things that was so upsetting was he couldn't breathe. So the subject of relaxing my breathing brings up conflicted feelings. It' s hard to explain. But I'm trying to get through this. Talking about it helps. I have tended to avoid talking about the breathing thing for a while. But I need to address so ..

Thanks for your understanding.. it helps.

I think breathing meditation would help. Its paced breathing and mind clearing. Its also a basic form of meditation-

so, not difficult.

Sorry to hear about the ordeal with your brother.

good luck

thank you.

I have been taught breathing excersizes..I have trouble remembering to do them.LOL The deep breathing diaphragm ones, I mean. I have to remember to do those throughout the day!

I've been trying to meditate a little but I'm not very good at it. I guess it takes time to learn. I really wish I had a teacher or a class. It 's just harder to do on my own. But I guess I don't have a choice.

Thanks for help

Right now I am having trouble getting to sleep because sometime I have trouble breathing and I'll wake right as I'm drifting off because of a tightness in my throat. *been tested for sleep apnea so it' s not that*

I try not to focus on it, it's just hard to get back to sleep after you were just jolted awake and your heart is pounding.

I would like to find a way to deal with these weird feelings because most stuff doesn't seem very treatable.

I'll also get scared when I suddenly feel weak for no reason. just feels like the life is draining out of me. I hate that feeling so much. Some night's I don't feel sleepy as I I fall asleep so much as weak. And then I try and let it take over and just go with it so I can fall asleep. Not the most restful way to sleep.

I guess I have a harder item with it because my brother died in front of me a few years ago. and he had similar symptoms. I know it' s not the same as him but my mind can' t forget what happened either. As soon as I feel the breathing things I think of him. I don't do it consciously . It's just a knee jerk reaction. same thing with the weakness or numbness when it happens all of a sudden I get scared, in a knee jerk reaction way. Ten I have to try to deal with going back to sleep when my heart is racing. I've been checked out thoroughly and I know it' s not anything dangerous. I really wish I could just turn that reaction stuff off.

I was just wondering how others deal with the scary symptoms you have? What kinds of ways do you have to cope. What kinds of self talk helps you?

IS there anything you can do to help this condition? Also I never really had autonomic nervous system testing done. I went to a neurologist but he didn't even know what POTS was. Then he sent me to a cardiologist..who didn't know what POTS was. The doctor that originally diagnosed me, never did any tests like this because he doesn't take my insurance so I had to pay out of pocket to see him. And It is too expensive to see him on a regular basis.

SO I guess I want to know. What kind of doctor did these tests for you ..a neurologist?

I would like to find someone to really investigate this more for me, but unfortunately most doctors I go to have never heard of POTS. They have an idea of what it means when you explain what it stands for but they have know idea that it has to do with the nervous system and how you have all of these weird things happening. They think it's just a fainting problem.

I'm not sure what kinds of test I could have done. I mean I have a diagnosis and it' s obvious that I have POTS, But I'm thinking maybe I could get better help if someone would do some more in depth testing. Problem is . I don't know If I can get the GP to keep referring me to Neurologists until I find one that knows exactly what POTS is.

anyways just curious about who was treating you and what tests you've had done.

For me for my situation, GATORADE. I don't have to drink a lot, just a few glasses throughout the day.

Recommended by my ANS doc and most all the specialist my autonomic buddies of many years were told.

It's the BALANCE of carbs, sodium and potassium, ratio of those three, that helps most to RETAIN the fluid.

But I still need the anti diuretic hormone DDAVP as well.

As a former hater of gatorade, I have LEARNED to like it but am picky about which flavors. Some are really gross. I now use the orange powdered kind and mix it myself

The orange bottles can vary too much from bottle to bottle..with all the flavors, I think they mix up the lines or something.

anyway, this is way more info than you needed.

I also do well with a protein snack or good amount of protein with my meal of the day, and carefully watch the glycemic index.

How do you know how much? I am wondering that for others who take Gatorade also. Is it something that you just add or do you get blood tests and then add according to that?

Also I have never heard of the anti diuretic hormone DDAVP..is that to keep you from peeing too much?

Good job on getting the referral! But you had to agree to get counseling?!! OH BOY THAT MAKES MY BLOOD BOIL.

UGh! It's unbelievable!! I've been to so many doctors over the past 7 years and I am so sick of their attitudes. When you're sick and you need understanding the most, you get treated like it's in your head, or no big deal, passed from one doctor to another, not listened to , and sometimes treated downright badly...but then it' s your problem.

Doctors are what cause me stress!!

When I do talk to my therapist a lot of the time it's about experiences I've had with doctors. I swear I would be so much better stress wise if I didn't go through all the crap I did before getting diagnosed,.,.and since then trying to get help hasn't been a picnic. I keep hearing of Dr. Grubb and how great he is. And I think if we all had doctors like that, how much better we'd feel emotionally.

I've never heard of Delphin before..

Do many people with POTS take it? Or is this something new?

Morgan,

My neuro said she wanted me to go there, gave me a doctor's name and everything, and said she'd send the referral after my insurance approved it. (???) I thought you had to have a referral to go there... I'm so new at all this.

Sophia, I will let you know when (notice I didn't say "if") I decide to change doctors, and I can get your doctor's name then. For now, I don't want to rock the boat because of the Mayo thing.

I didn't get a call from any doctors today! Yay!

Someone told me that a neuropsych eval might be a good thing. Now I'm confused... I guess I don't really know what a neuropsych eval really is. I guess I just thought they were doing it because they think I'm having mental issues.

Thanks everyone!

Angela

Angela,

I looked up neuropsychological evaluation

and this is what I found

From-http://ccm.psych.uic.edu/Research/ResearchProgram/Neuropsych/evaluation.aspx

"What is the Purpose of a Neuropsychological Evaluation?

A neuropsychological evaluation provides comprehensive assessment of patients in whom impairments of cognitive or neuropsychiatric functioning are evident or suspected. Assessment involves a systematic evaluation of higher cognitive abilities in order to identify possible problems with brain functioning, help lead to a diagnosis, define strengths and weaknesses, and make treatment recommendations. "

So it doesn't seem to be a "mental issues" thing...even though it sounds like it , doesn' t it.

I definitely wouldn't take the Effexor though if it was giving you a bad reaction. It's dumb of them to want to up it. Some people just have bad reactions to certain drugs.

Hi,

About the Hypoglycemia . Yes it is reactive Hypoglycemia.

What happens in reactive Hypoglycemia is when the person eats sugar or bad carbs, the body overproduces insulin..for some reason it produces more then the body needs and then the blood sugar drops.

Similar to the way a diabetic would react if they were to inject too much insulin.

In the case of a Diabetic though, they could have something with sugar in it to bring their sugar level up..

But in our case it would just start the whole cycle over again.. since eating sugar would begin the overdose of insulin again.

Since there are no meds to stop this so, the only way we can keep our BSL under control is to cut out sugar completely. Some of us can't even have fruit . I'm lucky enough that I can, as long as I eat it with a protein..

Anyway,

Thanks for the info . I am getting a sodium level done but I didn't think of the 24 hour urine test. The only doc I can really talk about this is is my CFS doc who I see only when I get the money.

Unfortunately most of the others doctors I've seen say .."what is P.O.T.S."? Then I have to explain it to them..so they don't' understand the whole salt loading thing.

Like I said when my BP was borderline low they thought that was good. Didn't matter that I was dizzy and sick..

Anyway,I figured if my BP was to go too high I could always cut back on salt since I take enough of it. I will be careful with this and check in with my CFS doc when I can afford it.

I have been thinking about it and trying to write down what else has changed in the past two months.

I have noticed that my IBS symptoms got worse after the operation.

So, I I have changed my diet lately because to reduce the IBS symptoms. I have mostly been eating soups.

So, I'm wondering if perhaps I am not getting enough protein. I'm going to check into that and get more info on how much protein I should be eating. If I 'm not getting enough that would explain the loss of energy.

I figure I can add foods one by one and see how my body handles them. Tried tofu and it was really good the way I prepared it and it didn't bother my IBS so I suppose that's an option.

Makes since to try this before I do more salt loading.

Again, thanks. It's a good idea about the 24 hour urine test.

Susan

I have been salt loading for quite some time now. I dont' have a daliy dosage or salt tabes or anything. I just adds tons of salt to my food. Luckliy I'm a salt lover.

Anway,

This past year I felt it was really helping. MY BP went up and I felt more energetic and was able to do more. I wasn't doing backflips or anything.LOL but I felt good. I could actually do things again. I noticed at this time anytime my BP was taken it was around 120, sometimes a little lower lower 117 or so. When I was first diagnosed with POTS it was about 90.

This is when it's taken in the doctors office, sitting.

I don't' know what it is doing while I'm walking or whatever.

Now, I recently had my ovaries removed. I felt lousy at first but have improved. I noticed I don't' feel as good ..as much energy as before. I feel a little weaker again. Better than I was when I was first diagnosed with POTS and wasn't salt loading but,. not as good as before, when my BP was 120 . I also noticed that now, every time I go to the doctor my BP is always around 110...again, sitting in the docs office.

I'm starting to wonder if I'd feel better if my BP was higher. I know doctors love it when it's below 120. But they also told me that it was good to be at 90. And I was weak and dizzy as anything.

Anyway, Could this be the optimal BP..for me. I'm thinking of adding more salt and try and raise it and see if it makes a difference.

Does anyone else have a particular BP they feel best at?

Also when adding salt. I can't just add more to my food. I love salt but I already put in as much as I can take. So does anyone have an idea of about how much one would add by day to raise their BP. I can't take salt tabs because I have IBS and it bothers that. And I can't take Gatorade cause I have hypoglycemia and I can't have sugar. So, I guess I would have to add it to water or something.

but, I have no idea of how much to add. Any Ideas?

I just read this at:http://www.cfids.org/about/whats-new.asp

Medicine Discontinued

King Pharmaceuticals? has decided to discontinue the manufacture of FLORINEF? Acetate (Fludrocortisone Acetate Tablets, USP). Read all the details at http://www.fda.gov/cder/drug/shortages/florinef.pdf