friday

avais,

thanks for the info.

The norepinepherine is another name for adrenaline isn't it?What did the doc do about this high level if anything?

Friday

I am a catecholamine mess. Yes, it does make a difference when you sit, lay down, and when you stand. Mine were tested at Mayo. When I lay down, they are normal, they are 297 (norepinepherine rate for normal ranges from 70- to 750). However, when I stood up, they jumped to 800, which is well past the highest normal reading. Mine was done with a blood test, with an indwelling line, so that I would be unaware when they were pulling blood out of me (to compensate for any anxiety factor). I hope this helps!

Thanks for the replies. I do have a therapist and psychiatrist so I'm okay on that end. My therapist is wonderful she even discounts her rate for me because she knows i can't afford it. I'm on antidepressants already. Zoloft and Anafranil. I really do know the difference between what I feel physicaly and mentally because i went through a long depression as a teenager/young adult ,years in fact. ANd I know this is definately not depression. I do get depressed because of the things i can't do but i want to . When you're depressed you really don't have any ambition and no feeling for anything. What I feel now is so different. I want to do things so bad, have all these things i'd love to do and as soon as I feel a little well I do. I'm an artist so I work on that when i can. I also have hobbies, I've started writing lately. What gets me down is when I'm too tired to keep my eyes open, or when they are so irritated I can't work on my art, etc. Or a lot of the time I'm nauseated, and it prevetns me from doing a lot. ANnyway, I was hoping maybe some people here might have some stories of hope. You know, like they were in bed but after receiving treatment, they feel at least a little better.

Thanks again for the support.Sorry for the typo's but i'm too out of it sometimes to type correctly..plus i was never the greatest typist. They don't have spell check on here do they?

Anyway,thanks,

Friday.

But the name of the game here is Getting What You Want. And the bottom line about mentioning other disorders (like sleep apnea) is do NOT mention it unless you want the treatment for it. Most docs will not see an accumulative pattern of symptoms that encompass other disciplines as they tend to look only at their little slice of the pie.

Thanks for the advice. It's true I should've just kept the apnea to myself because it just got in the way.But I was kind of shocked that just because of a good MRI he was clearing me of anything nuerological problems. Anyway, I didn't really explain that right. He didn't offer me a sleep test, he just mentioned they had such things. He wasn't going to send me there. I didn't actually tell himI wasn't interested.

I just meant It wasn't the reason I brought it up.

I had been through a sleep study before and they said I didn't have an apnea episode that night. Although it was only three hours. They said I could get occasional episodes but, it has to happen like 100 times in order fort them to think it was a problem.

I actually never even heard of an electrophysiologist. I wish i had known of this when I was at the neurologist. I could find out if there are any electrophysiologist/cardiologist I could see, because he didn't give me a referral to the doc he just writes a script saying I should see one.Then my primary doc has to refer me.

Thanks also for the advice on dealing with docs. It's so hard, because most of them have this attitude of you know nothing you're just a patient, but unless you bring things up they shove you out the door before you know what happened. I could really use a book on how to deal with doctors.

Friday

Well, yes and no. I'm seeing a doctor now who has suspected POTS, he hasn't diagnosed me though. I have only seen him once and he's been doing some tests, I'm thinking he doesn't want to misdiagnose me also. I had asked him about the TTT but he said he didn't want to make me go through that if i didn't have to, and based upon the info i've given him and BP and heart rate redings I've reported myself( i keep a journal of my BP readings from my home BP monitor) he could see that I have a problem with it and the TTT would just give him the same information. I kind of understood that when he first said it but, now I'm not sure because i'm still not diagnosed.

The sleep apnea doesn't seem to be major. I had a sleep study done where it didn't happen. I only had three hours sleep but it didn't happen during that time. It seems to happen once in a wihle when I'm falling asleep, and sometimes, it has woken me up but not lately. My Mom has also watched me sleep for an hour, two times and it didn't happen then. I was thinking on trying another sleep test but it's a big ordeal for me and they , the doctors say that they don't really do anything about the apnea unless it happens a certain amount of times a night. Anyway since it wasn't a major problem the sleep doctors don't really pay it much mind.

I had talked to my doctors partner recently and she had mentioned they do the IV thing so I was wondering about it. I'm supposed to see the doc soon so i want to ask him what's up. He is treating me like i have POTS.The beta blocker,taking the salt, but he hasn't said yes it's POTS so I'm stuck in the middle. I don't want to get misdiagnosed but yet I need to know what's going on.

Friday.

HI. I've been feeling very depressed lately because i can't seem to do anything anymore. I feel sick all of the time and hardly go outside. I try to, i just can't. I have a hard time just going to sit from one room to the other. I can't drive and most of the time can't even stand being in the car when someone else is driving. I'd just like to hear from some people who have experienced getting at least a little better. I want to believe I can have a life again. Even if it's not the same as it used to be. I have no family of my own. I mean husband or kids. I live with my Mom and Dad. They are both near 70 though and my Dad's a very negative person so I avoid him most of the time. I only get to see my brother once in a while. Other than that I don't have friends because when I got sick I only had aquaintances, not really friends, especially not friends I could lean on like i need to now. It's just hard because i want to go out and be with people but I get too sick. Nausea, too tired, etc,etc, and even the times when i finally make it out, most of the time, all i want to do is close my eyes and lay down. I've only tried a beta blocker, metropol. And I take lots of salt. So far that is not helping. I just need to know this can get better.

Friday

I have seen a neurologist twice. I told him of my symptoms and he did a MRI. When I came back the 2nd time he said good news no MS. So yes, that is good news but then he said that it seems my problem isn't neurological. So, I'm like what about the apnea I told you about, where I wake up gasping for air. If it's central, that's neurological. And he talked about a sleep study. I wasn't so much interested in that because it doesn't happen that often, but I was telling him about it because I thought it was one more thing, besides these feelings I have, numbness, breathing problems, and restless leg, that seem to be related to a neurological disorder. So again he says he clears me for neurological disorders. So I say isn't POTS neurological? And he goes; now you're going from MS, to apnea, to POTS. Like I'm just jumping around from one thing to another. So I stopped him and go; No, you were looking for MS, I told you I thought it could be POTS the first time I saw you. Also the only reason I mentioned the apnea was to show that I think these others things are probably also neurological. At least there's enough evidence to point in that direction. I told him of my charting my Blood Pressure and heart rate, and he laughed. Which I got PO' ed at told him there is no reason an intelligent person with a BP monitor can't do this, and the results I've gotten are the same as POTS patients. So after that he said okay lets get a record of your bp, I'll send you to a cardiologist. So again another doctor. I don?t mind, if I am heading in the right direction. It 's just that they (doctors) confuse me so much when they are supposed to treat neurological problems and they say you?re clear because your MRI is okay. What I think is happening here is that he doesn't know much about POTS and is basically saying go to the cardiologist for that. But the way he says your clear neurologically bugs me. It seems to me I'm clear with what he knows, about which seems to mainly be MS. I'm just looking for some feedback here. As far as I know the MRI doesn't detect POTS. And as far as I know POTS is neurological right?

Friday.

I was wondering if anyone had had a sleep study at home. I thought i remembered hearing somewhere that it can be done at home. I'm asking because i had one done in the hospital over a year ago. I couldn't hardly get to sleep because I have a hard time sleeping at home where I'm comfortable,let alone a hospital. Plus my sleep is all messed up in hours. Sometimes I stay awake the whole night and wind up sleeping in the day. When I did the test in the hospital. I finally fell asleep, after hours of trying and wracking my nerves, and I barely got three hours. The thing is it didn't even seem like a normal sleep. I didn't feel like I had slept at all and had no dreams, which is wierd for me. So I wondered if that would give innacurate results. I've tried to explain this to the doc, but I guess if you haven't had insomnia it's hard to understand. Anyway, I had heard about the home test, and was wondering if anyone has had that.

Friday.

I have a standing order and have used it several times. It is a quick fix and is very beneficial so you don't have so much catching up to do. If I didn't have the IV saline, it might take me a couple of weeks to feel better.

I was wondering what you mean by quick fix. I am feeling pretty desperate right now and was wondering if it might help. I am having so much trouble with fatigue and nausea and breathing. What did it help you with?

Friday

I was curious to see if anyone with POTS had tried having the saline IV treatment, and has it helped you?

Friday

The things that have helped me have been wearing compression stockings and also taking midodrine (the vasoconstrictor). This is actually the only time that I notice a difference in symptoms when I take midodrine....otherwise it seems to do little for me but make me want to go to sleep.

I haven't tried the stockings yet because it's been so warm, and I?ve gotten used to not even wearing socks in the summer, I thought it would be too much for me. Now with the cooler weather I am going to try them. If they work I'll probably wear them no matter how hot it gets!

Interesting too how the midodrine only helps during that time. I had noticed that I had felt a little better doing the salt thing and having the Beta blocker, but then my period comes and screws me up for weeks, so I think I need something more for this time. I was worried about the side effects of the suppressing my period too, that's why I?d like to try other things before that.

Friday

http://dinet.ipbhost.com/index.php?showtop...me+of+the+month

Here is the link to the discussion from last week. I have the same problem. I am a different person once my period stops. The Dr. told me that I should increase my beta blocker around the time of my period, which should theoretically start in about 10 days. I will let you know if it works.

Thanks for the link.

Let us know how the increasing the BB works.

Friday

  it's important to let him/her know this is happening and maybe have your blood pressure and pulse taken in his office, going from lying to standing.  however don't let them take it immediately. 

I just wanted to add, you have to get them to check you BP that way. Most of the time they'll just do it sitting. Also it doesn't always happen everytime, so It'd be good if you could get the TTT. I knew nothing about the TTT when I suspected something up with my BP and heart rate. I would tell the docs, but since my bp was low normal sitting, they'd say that was good. Getting the home BP monitor for me was good because it allowed me to check things myself. From Lying down, to standing up, to Standing for ten minutes. When I did it over and over and kept getting the same results POTS patients did, it gave me confidence to fight with the doctors and get them to listen to me. Finally they started to realize I had a major point. I wish someone had just given me a TTT in the first place.

Friday.

I've had a problem with this also. I had heard that it might be due to low dopamine levels, and mine were low, so I thought this might be part of the cause in my case. I was going to ask my doc. I think there are different reasons why people get it so I guess it's not always related to dopamine. I found a page that talks about it and the type of things they do to treat it.

http://www.postgradmed.com/issues/1999/03_99/evidente.htm

Also,

After being low on Magnesium have found when started taking Magnesium supplements the restless leg got a bit better. Although it's not completely gone. So that might be part of the trouble for me. It might be good to try Magnesium and see if it helps. You might want to ask your doc or pharmacist first though. I think Magnesium is pretty safe except too much will give you the runs. But still I would check.

Friday

When orthostatic symptoms occur in patients, but blood pressure does not fall as much as 20/10 mmHg on assumption of upright posture, the patient has orthostatic intolerance (OI

I'm confused, if this is saying, if a patient has symptoms but thier blood pressure doesn't drop when they stand, they have OI?

I thought if BP does drops when they stand they have OI.

I've got major brain fog tonight so excuse me if i'm easily confused.

Also does anyone know what happens after you stand for a while. Say 10 mins. I mean does your blood pressure go low and then after a while go up to normal. Does it stay the same? I'm wondering what it's suppose to do for POTS patients. Most times my BP drops right upon standing. Then after a minute it goes back up. then it just fluctuates back and forth. I was curious about why that is. Also My heart rate rises. Most times it immeadiately goes up 20bpm if not more then as I stand longer it rises. By 10 minutes if i can stand still (because the symptoms just get worse) it's usually over 30 bpm from when I started.

a standing plasma norepinephrine level of at least 600 pg/ml.

So does that mean it makes a difference if you're standing and sitting? OR does standing plasma mean something else?

I think I'd like to get the catcheclomines done again since it's been a while since I had it done and so much has changed since then. I'm still not sure of the connection, but I'd like to find out more.

I have heard that some people with restless leg syndrome get relief from some form of dopamine related drug they use for Parkinson's, sorry don't know the name. Brain fog is bad tonight. Hope I'm making sence.LOL

Friday

I have read that one of the things they look for in POTS patients is an abnormality in catecholamines. Has anyone found out if they have this? And does anyone know what the abnormalities would be?

I had a test done months ago. I remember everything being on the low side or normal..very low. I had mentioned this to the docs but as long as it is within normal range they say it's okay. I also read that restless leg syndrome is associated with low dopamine levels. Since I have restless leg syndrome, and my dopamine levels were so low, even though they were still low normal, I thought this may be a problem for me. Anyway, I was wondering if anyone knew about catecholamines.

Firday

I read a post the other day in which a lot of women were saying that they get worse during thier period. Well, I can add my name to that list! I am going through that right now and things have gotten twice as bad as usual. This does happen a lot during or after my period. My question is. Since a lot of women experience this has anyone's doctor helped them deal with this. I mean have medications been adjusted or has anyone found anything else that helps for this time?It's difficult for me because someitmes I get PMS, sometimes I get sick because of my immune system being even more vunerable, sometimes, I get very tired, no exhausted, because I normally have to take iron for anemia. It seems that as soon as I get over it, it starts again. I also get irregular periods which doesn't help. I have considered going on that birth control that limits your period to four times a year. Has anyone tried it?

Friday

Regarding saline...some people do go on long term regimens of saline and give themselves IV's at home on a regular basis. I've had people tell me this really helps them, and there was a study some time ago that found saline to be the most beneficial treatment of the several treatments studied at the time. However, some physicians feel the benefits of IVs do not outweigh the risk.

HI. I was just wondering what do they consider the risks of this treatment?

(I know this thread was originally for Nichole so I apologise for butting in. I hope you get more help for your daughter, and she is very lucky to have you to help her).

Sue

I have had adverse reactions from a lot of medications I've been on, and depression seem to be a possible side effect of most meds. Out of curiousity I looked up Florinef side effects, and sure enough:

What side effects can this medication cause?

Although side effects from Florinef are not common, they can occur. Tell your doctor if any of these symptoms are severe or do not go away:

upset stomach

stomach irritation

vomiting

headache

dizziness

insomnia

restlessness

depression

anxiety

acne

increased hair growth

easy bruising

irregular or absent menstrual periods

Maybe if you look on the paper that came with your prescriptions it might have this listed, and then you can bring it to your doctor and show him. If even you want to bother with him anymore.

I don't understand his reasoning, if you don't cry you're not depressed? And that comment about just being afraid of a little excersize..ugh! I have been through a lot of doctors with a similar attitude, so have a lot of people on this board, and I think we all agree people shouldn't be treated this way by thier doctor.

Friday

hI. I haven't been diagnosed with POTS offically , but i have iron anemia, Hypoglycemia, CFS, and my hair is gone. Well not completely but it is so thin on top I have been spraying on scalp conceler. It works pretty good if you're desperate and don't want to where a wig. I have noticed in the past year, since i've been taking iron, and magnesum my hair has gained some of it's body back. It was like straw 6 months ago. Now it has some body. The top is still thin though. It's sad because I used to have beautiful hair. But its definately related to your health. If you get desparate you can try the spray or there's some powders that are good for cover. Nothings perfect but I told the doc I used it the other day and he said he would've never known so I guess it fools the eye pretty good. You can also swim in it. It's better than walking around with a bad combover.LOL

Hi Sue - I just wanted to send you a quick reply that may help ypu. I saw that you also are from the NJ area like I am. I suffered for over a year from 1/2001-5/2002 until I was diagnosed.  An elctrophysiologist/cardiologist at Monmouth Cardiology Group of East Brunswick NJ did the tilt table test and together with an endocrinologist, they diagnosed me finally at Rob Wood Johnson Med Center. I'll spare you all the long details of my story, feeding tubes, gi problems,etc,etc,etc, but if you need more info from me let me know. I hope you get help soon so your symtoms can atleast get to a controllable state so you can function a little better. Also, breathing is a problem for me, but I use a ventolin inhaler, only as needed when my breathing gets very bad and that helps me with it. Also, if you do not over exceed your limits, breathing is better. As soon as I feel my breathing getting labored and I start getting even just a little dizzy or tingly or ears ringing or any symptom happens, I sit down wherever I am for a little while until the feeling passes and that seems to work for me.

Have a good night

funnyfrog in NJ

Funny frog,

Thanks for the help. I'd like to email you and find out about the place you went to in east bruswick and your experiences. I'm so dizzy right now I can't . I'll try tomorrow thanks for the help.

Friday.

HI I just wanted to say that i have been seeing mainstream doctors for a year now and they have done nothing to help me. Or if they have it was at my request. I think it is worth trying an alternative doc. You have to be careful but it is that way with all docs. If you dont' have a positive experiece with this doc i wouldn't give up on alternatives because some might really help. Mainstream docs are so into giving out meds, like antidepressants, and they can really screw you up sometimes too. You just have to be careful either way. If a doc suggest a treatment look it up on the net and see what other people have to say. Hope you get some hep with this new doc.

Friday

I've had a really hard time dealing with anxiety lately. It seems to come out of nowhere a lot. I know a lot of the time it has to do with how well I feel. If I'm having a good day, the anxiety lays low, but if I?m feeling really sick it comes out more. I know it has to do with the fear I feel of getting sicker and worrying it won't get better again. But it also seems my mind is just more nervous in general even when I try and make a conscious effort to control my thoughts (cognitive therapy) It just seems at those times it's just soo hard to deal with anxiety and mood swings. Anyway, I was wondering what some of you do for anxiety. I have done relaxation techniques in the past, but that?s a problem if I?m anxious because I?m having trouble breathing. Then it actually increases the anxiety to try and control the breathing. It's like I can't take a deep breath its too much work. So I have tried anti anxiety meds like Ativan. I've been on and off this a few times. I went through major anxiety as a 20 something and I used it then. I never really had a problem being addicted because I always knew if I didn't need it, don?t take it, otherwise I would just increase the need for it. Anyway, I have been taking it now, but like I said I don't want to depend on it, I know that can get bad. So what else works? I have been on Zoloft and Anafranil but I don't feel they help. I have never felt any difference in my moods that I could relate to them. I had been on other antidepressants and they also don't seem to work on me. I have nothing against them, but I think I may be one of the lucky ones that are just resistant to antidepressants. It seems all of the drugs out there for anxiety are short term addictive ones. Depression?s not really my problem so much as anxiety. Does anyone have any other way of treating anxiety? PS going for a walk or visiting friends, stuff like that won?t help because at the times, I?m sick and anxious, I am usually bedridden.

I read a lot about people mentioning adrenal rushes with POTS. I was wondering what you do about your adrenals? Is there something that can help treat the adrenals, if you're not in complete Adrenal failure. Also how do you tell it affects the adrenals? I mean what tests have you had done? I had my cortisol level taken and it came out a little high,(1 point) twice. In the morning after fasting 8 hours. I was under no particular stress both times. Last time I had it done it was much lower in the mid range. Same situation, morning, fasting 8 hours, no particular stress. I don't understand why this would be. . I have Hypoglycemia and i know that also usually means problems with adrenals. Yet I have done the cortisol tests and the docotrs say that would show a problem. If the Adrenals are working overtime with the HYPO wouldn't that mean you're going to be having a problem, even if it doesn't show up in a morning cortisol. I mean I know I get more anxious at particular times, like right before a HYPO crash- helps keep me from crashing anyway. As soon as I eat it goes away. I have a bit of trouble understanding the adrenals so bere with me. Wouldn't that mean that it's not always going to be at the same level. My DHEA was okay in a test also. I had heard that was related to Adrenals. I'm just wondering if there aren't some other test that might show something?

Thanks for all of the replies. It is interesting that so many people with POTS have this problem also. I actually didn't start taking the BB until after they found out about the low potassium. However the last time I took a blood test my potassium level was in normal limits. I will have to check on that with my doctor though to make sure I'm not getting too much thanks. So I'm getting the impression that a lot of POTS people have a problems with at least potassium yet doctors don't seem to connect POTS and Electrolytes? Well except for sodium. I will also have to ask the doctor about this, and bring a copy of this post to show that other people are having this problem and not just me. It's weird I drink so much water but yet when I went to the ER on that day my Electrolytes dropped, I had been feeling so dehydrated.

Sue

I first started posting here right before a trip to the ER. My worst symptoms were dizziness, nausea, numbness tingling in the arms legs, apnea, High heart rate, restless leg syndrome, trouble breathing, pressure in the neck and chest, lightheadedness, (I have many more things going on but those are the one I related to neurology.) Anyway. Someone had told me it could be low Magnesium causing the problems, so I started taking 900 mgs, daily. Also in reading about POTS I started eating extra salt since my blood pressure was on the low side I thought why not. In spite of that, after a week or so of getting really weird times of numbness, difficulty breathing, weird feelings in my limbs, I wound up going to the ER because it got so bad it scared the **** out of me. It felt like I was almost paralyzed, and didn't even want to move my mouth to get words out. Plus the pressure I had been feeling in my chest and throat got worse and it got harder to breathe. Anyway, They were mostly concerned about my heart, and kept me in the hospital for a few days. It checked out okay. What I found interesting was that as soon as the blood tests came back they said I was low in Electrolytes and gave me several bags of fluids through an IV. In fact I was on it most of the 2 and a half days I was there. And I still left with the magnesium a little low. So since then I have upped my Magnesium to 1150 a day. Any more seems to give me diarrhea. I started taking calcium, and more salt, also the doctor prescribed Potassium. What I am wondering about is does anyone else have problems with their Electrolytes? They didn't give me an explanation about why they got so low. They suggested diarrhea since I had it in the hospital. But I was actually constipated until I went to the hospital. I didn't get diarrhea until afterthe Electrolytes had already dropped. I guess I?m just trying to figure out where low Electrolytes fit in, and if anyone else has problems with them?

Sue