friday

Thanks for the advice guys. It helps. I went to see that nuero today. He did as I said : the MRI was clear so you're fine. I then questioned him about why I couldn't breathe and the apnea. I also asked him what about POTS. Thought I would give it one last try. He says yeah but now you're jumping from one thing to another from MS, to apnea to POTS. I told him, I'm not jumping around. I didn't think it was MS, and had told you I though it could be POTS from the beginning. I also told him the main reason I was pointing out the apnea was because it can be neurological, and to me it's just one more thing to point to a neurological problem. I told him I have been charting my blood pressure and heart rate, and how it related to POTS. For this I got laughed at. For that I got angry. I asked him what was so funny about an intelligent person trying to find out why they've been suffering for over a year when doctors haven?t. I told him I was capable of taking my blood pressure and heart rate and charting it. And what it says points to POTS. He started listening after that. Nice surprise. He said we should get some documentation on that by doing a TTT. He recommended a cardiologist to do it. I appreciate my other doctor not wanting to put met through that, but I think it might be worth doing so that they have something official to look at in the future, and I don't face another laughing or even smirking doctor in the future. I just can't stand that. He also said I could go to the Mayo clinic and have all these specialist look at me under one roof. I asked him how much that would cost. He kind of laughed and said I don't know, so I think he sees the point I was asking which was I have no money. Anyway, I figured I?d try to get to appointment with the cardiologist. And in the meantime I'll have to make an appointment with the CFS specialist again and see what he?s planning on doing.

I have heard a lot of people complaining about having trouble breathing. This bother?s me that so many POTS people get this but no one seems to have an answer from anyone on how to get rid of it. I mean not being able to breathe is a pretty horrible symptom. It shouldn?t just be ?put up? with. You would think some doctors would realize that. There should be something to help us with that. I think my breathing either comes from laying down, or gets worse when I lay down. Most times it seems that way. Sitting with my head propped up sometimes helps.

Just wanted to update my message and thank you for your help.

Sue

Hi. I haven't been officially diagnosed with POTS, although I have a strong suspicion that that may be causing some of my problems. I?ve been offline for a while so since I last posted I have seen a neurologist and a CFS specialist in NJ Dr.Podell. The neurologist gave me an MRI (which was normal) and didn't seem to want to deal with anything else. He told me since I was taking a beta-blocker that should deal with the POTS,like that was a cure. And he told me to see a cardiologist for a TTT. Seemed like he was passing the buck, on that one. Don't neurologist also give TTT? Anyway, one of the first things Dr.Podell mentioned was POTS. He didn?t' say I definitely have it I think he wanted to rule out other things first. He took some blood tests, CBC, thyroid, iron, etc. which came out normal. I haven't made a new appointment with him yet because he had also wanted me to get an ATCH test, which I still have to get, and a blood volume test (I don?t know the specific name for that). The hospital that was supposed to do that however now says they no longer do that test. So Podell is going to call them and see about it. In the meantime I'm waiting. I asked about a TTT but he said it was a really horrible test to have to go through and since he had my records (I take my blood pressure and heart rate several times daily and write it down) he could see that I have a problem with low blood pressure and high heart rate. He said it already told him what a TTT would so why put myself through it. Okay so now I?m waiting, seems like I?m always waiting. I have had a lot of trouble with breathing lately and it is really horrible. It?s hard to relax when you can't breathe. What I am wondering is do I have a nurological problem? I think so but I'm not being treated as such. I mean the neurologist is supposed to take care of that isn't he? I have had what seems to be apnea in which I wake up gasping for air, or it happens as I fall asleep. I read about central apnea and that is neurological. I don?t seem to get it all the time. I even had a sleep test done last year, nd it didn?t happen then.( although I only got three hours sleep) It?s not that I?m really worried about the apnea , it just seems to be another thing that points to something nuerological. I've also had numbness and weakness in my limbs so bad i felt I couldn't walk. I also have restless leg syndrome. I?ve read that also is due to the nervous system. I have an appointment with the neurologist again and I really don?t know what to say. I just want someone to help me and they act like it?s nothing don?t worry about it. I read a lot about things, and it seems to really sound like me, but then I go to a doctor and I get no help. It doesn?t help that I have such brain fog I get confused and have a hard time explaining things to the doctor. I have to go back to the neurologist and I just know he?s going to say the MRI is okay so I?m fine. Or he?ll say it?s anxiety related. The only thing making me anxious is being sick and having to deal with doctors. Any suggestions?

Sue

Thanks so much for that information. I had no idea you could do anything like that. Actaully I think the Beta Blocker i'm on isn't good for me either. It seems my OI has gotten worse since last week. I can hardly stand for a few minutes without getting sick. Also my blood pressure drops signifigantly upon standing. It wasn't doing that before the BB. I read that for some people it will do that, so I guess I'm one of those. Can I ask if anything you've tried has helped?Since we seem to be similar on the Beta Blockers, maybe I can try something that has helped you.

Sue

Thanks for all the suggestions.

Sue

I'll answer for Ernie in case she doesn't see your question--I believe she's referring to Primary Care Provider. Funny, when I read her reply, I thought you'd ask: What's a poor man's tilt? 

Take care,

m

OH okay thanks. I usually just say GP. I guess I figured a poor man's tilt would be what I do at home. Take me blood pressure and pulse lying down and then standing. I've given it up to 10 mins. myself. That's all i can stand, and my pulse just about always goes up about 30bpm. also when I feel the symptoms badly the blood pressure goes down. I noticed today that besides the symptoms increasing my feet also turn bright red then start to get purplish. With all this going on and the fact that my electolytes and sodium dropped the day I went to the emergency room because i couldn't walk, Why or why is it so hard to get someone to give me a TTT. My gp already decided I don't need to see him for two months!! The Neurologist is just giving me an MRI, and says to see a cardiologist to see about a TTT. So that means, I'm supposed to wait two months till i see my GP and then try and convince him to refer me to a Cardiologist, then wait for who knows how long to see him...then I have to convince him to give me a TTT!These people are unbelievable! Hopefully Podell will be more helpful. Sorry for ranting, I get so fed up with thier lack of concern!

Sue

Thanks for the replies. I finally got to a neurologist and told him about the symptoms i've had and how i believe it seems like POTS. He was just intertesed in doing an MRI. Not that I'm against it, I want to make sure it's not something else, but i don't know why it's so hard for docotrs to agree to do a simple TTT. Anyway if the MRI is okay I'm going to get more insitant about the TTT. Thanks for the info.

Sue

I have an appointment for an MRI on Monday. would that show any evidence of POTS or OI or does it just show things like MS or Parkinson's? Sorry if it's a stupid question. I know nothing about MRI's.

Sue

Could it be restless leg syndrome? I found out recently it's not just in the legs.It also happens or gets worse when you are trying to go to sleep. I think the more still you are the more you notice it. Anyway, I have it. Mine's like bugs crawling on me. Sometimes pinchy bugs. It's kept me up nights. Someone told me to take Magneseum, as it was suppose to help restless leg syndrome. I don't seem to have it as much as I used to so maybe it's helped.

Sue

I have heard that some people can be helped by increasing salt and fluid intake. My question is..how does one know how much to take. The water. I drink a ton of. I don't drink anything else, so I drink about double of what is normally recommened. The salt. I add salt to everything. And was even taking a spoonful or two a day but when I had my last blood test my sodium was low-114. norm -135. I've also heard of salt tablets. Again I'm not sure how you'd know how many to take. Ayone have any idea?

Sue

Until you get a real TTT you could always ask your PCP to give you a poor man's tilt.

Ernie

Ernie,

I'm sorry what's a PCP?

Sue

Nina,

Thanks. I just got an appointment with Dr. Podell, for two weeks from today so I guess i'll see what happens with him.

Thanks

Sue

Thanks for the fast replies. And thank for the links. Unfortunately for me, they are all in NY and I am controlled by my insurance. See in order to see a specialist, first they have to take horison NJ/Medicaid,(which is rare) then I have to get a referral from my GP to the specialist. Since they already sent me to the neurologist, it would be hard to get them to send me to another Neurologist. Since I had all these tests done on my heart and they checked out okay, I know they're gonna say I don't need a cardiologist. Getting these people to do anything is like pulling teeth. Being on Medcaid is terrible. They don't want to pay for anything. That's why I 've been dropped by a couple of docs recently. Unfortuantley it's all I've got.

I am still planning to see Dr. Podell, who doesn't take my insurance, but like i said few specialist do. It's just that I have no idea when I am going to get an appointment yet. And this whole buisiness this past week has just got me wanting some kind of help fast. I guess I will have to try to call his office. They must have my application by now, so I won't wait around for them to call me. I just hope it's not gonna be months until I get an appointment.

Thanks also for the links on types of treatment and detection.

Sue

Hi. I just went through **** this past week. I've been having all these terrible symptoms, like numbness, not being able to breathe right, you name it , in the past year , I've probably had it. Anyway, last week, the breathing problems seemed to overwhelm me, and the pressure in my chest was really bad, I tried to stay clam because i read about POTS and it seemed to be what I had. I didn't really think of it as a heart attack or anything, but it just kept getting worse. I got really weak, The room was getting dim. All the energy was draining from my body. Then I felt real numb all over. I tried to get up to go to the other room but my legs didn't want to move. Then when I could move them, I knew they wouldn't hold my weight. Sure enough, I tried to walk and fell.I had trouble getting words to some out of my mouth also. This really scared the **** out of me so I calld 911 and went to the ER. They said after the first blood tests that my Electrolytes were down. They specifically said, magneseum( which is weird because I was already taking a suppliment of 950 mgs. a day) calcium, and sodium. So they set me up with IV's . In the meantime, they checked me in and did all kinds of tests on my heart. All that seemed to check out well, so they were satisfied. I kept trying to tell them about POTS and the fact that i had been checking my blood pressure and heart rate, and it all seems to point in that direction, esp. since i'm a cfs.but they were like let's take this one step at a time. We'll work on that stuff as an outpatient. The thing is, I don't know what caused the symptoms to get that bad all of a sudden. I don't know why the Electrolytes dropped so bad, and that scares me. They are not used to dealing with CFS or POTS patients so to them it was no big deal. They did give me a Beta Blocker. Because my heart rate was pretty high, and my blood presssure was low and irratic. But they fail to aknowledge that I need to be properly diagnosed and treated. I saw a neurologist, At my insistnce, but he mostly just wants to do an MRI and send me back to the regular docs. Not that I mind the MRI, I want it, But I told him about the POTS , he seemed to understand but then was also like well, you're on a beta blocker so that should make you feel better. And it would just mess up the tilt table test. He also said I have to see a cardiologist to get that test. I feel like I'm in the Twilight zone. Nobody seems to be doing what they should. I mean even the Beta blocker, the gp says well, you won't have to take that all the time. It's like I just want them to seriously consider that my problem might have to do with OI or some form of it. I want them to do the necessary tests to make an accurate diagnosis so I can discuss with them the best way to deal with it. So I can have a definate diagnosis if I go to another doc. If I go to them and say I suspect I have POTS, they'll just blow me off. Just like my Hypoglycemia. They tried to ignore me when I said I had that , at the hospital. When I informed them that one of thier own docs gave me that diagnosis , then they listened. I really don't know what to do at this point. I don't even know if a Beta blocker is the best way to go with this. I have felt a little better since I came home from the hospital, but I still feel bad. And my thought process is really shot sometimes. I'm surprised i can tell right from left some days. I don't have an appointment for 2 months to see my GP and this guy ( the neurologist) tells me I need to see a cardiologist to get the tilt table test ( it's called pass the buck..I've been here before) So now i have to wait to see my doc and try to convince him I need to see the cardiologist, then I need to wait get an appointment, and HOPE this doctor will listen to me and do things in the correct manner. In the meantime. I'm scared, I feel so alone, and nobody seems to believe anything I say, so what good does it do me researching all of this stuff!!! I'm really at my wits end. It's like they're trying to drive me bonkers, just so they can say they were right, it was all in my head.

Any advice. Is a Beta Blocker the way to go? Will it be useless to get the tilt table test now? They don't understand , I want to do this in the correct order so that I have a diagnosis, and can get the right help. Plus I really don't feel like going through anything like I did last week, and I am still unclear as to why it suddendly happened like that. So I'm carrying around, magnesuem and salt in my pocket, where ever I go. Sorry for the long post but I'm so stressed about all of this.

Sue

Fellow jersey girls,

Hi. Thanks for the info on your experience with Dr. Podell. I'm glad to know he knows about POTS. I have seen the costs listed on his website. I'm on Medicaid, so most private doctors don't accept that insurance.:(I'm at the point where I feel it's something I need to do. I've been to so many doctors that know nothing about anything I have.

I really don't have the money. I get 600.00 bucks a month from SSI. 200.00 goes to car bills so that leaves me 400.00 to deal with. Luckily I don't have to pay rent or for much food because I live with my folks. The thing is, I can never go out because I am too sick, so I don't really have to spend money on much. I can do without hair die, makeup and such..who am I going to impress at this point. Long story short, I sent in an application to the office. I know he's really the only so called expert in cfs in NJ that I've found. And i do like the fact that he's involved in research. I also like the fact that I don't have to inform him about CFS, because most of the doctors I see have no clue.I'm not expecting a mircle cure, I just hope to have enough improvement to be able to have more of a life than sitting in bed. I don't know about how long I can keep seeing him but I'll have to play it by ear. You are right this state is terrible when they don't find a simple explaination to a medical problem! This past year has really opened my eyes to that. It just makes more stress on the patient , the way they treat you. All I'm doing is making myself sicker by dealing with these unreasonable people.

Hopefully I can at least find a little improvement . I had thought of going to other states, but I don't think I can because of the fact that my insurance comes from the state.

Well, thanks again.

Sue

That is a hard one. I have been going through that for a year now. Going from doctor to doctor telling me my symptoms are caused by depression or anxiety, and having to disagree with them, and believe in myself. I think one thing you can remember is they seem to tell everyone that. I keep doubting myself too, and thinking, maybe they're right, maybe it's in my head. Then I have to trust in myself and what I feel,and I know in my soul, it's not all in my head. They've told me it's in your head before they found other things that were wrong with me. Anemia, Hypoglycemia, even sinus problems. Just remind yourself they are human beings. Just because they sound like they know what they are talking about doesn't mean they do. They can be wrong also. They can't feel what you feel, they're just hearing words. And they'll keep insisting they are right until they're proven wrong. You've been diagnosed with POTS, you know that's not in your head.

Sue

Danelle,

Don't give up. And you didn't fail your family. It's not your fault you got sick. Keep on trying, and maybe that attorney will turn out to be wrong and it will be quicker than you think.

Sue

No, I don't think I have a family history of anything like this. At least not to this degree. I do have a family history of sinus problems though.( Now that I think of it, my dad has Nueropathy because of his Diabetes. I know that's related to the nervous system.

Sue

Thanks all. It is sad at how sick one is yet they have to do so much work to get help. It's also sad how many doctors want to blame anxiety or depression for everything. I guess it's just easier for them. I think it has a lot to do with the amount of time insurance allows them with each patient. But they really should listen to a patient with an opened mind. So often I go in with information to ask about and they are so quick to try and disprove it. I'm waiting for my appointment with the GP now, to get a refferal to see a nuerologist. I feel nervous thinking about how I have to plead my case when I go in. Then the next step is, will the nuerologist even know enough about this stuff? Well, I'll have to take it one step at a time, and not give up on searching for answers. thanks again.

Sue

Since i'm new here I was wondering about how some of you found out you have POTS or OH or any of the other ANS what do you call them? Syndromes?? Did you describe the symptoms to your GP and he /she suspected it? Did you get sent to a nuerologist, and they found it. Did you read an article and say that's me and then have to get the doc to give you the right tests? Did you have any probelms getting diagnosed?

Sue

Thanks for all the help and support. It sounds funny but it makes me feel good to know some of you have experienced the numbness and breathing problems. I have been reading some of the links you sent. One of the docotrs listed. Dr. Podell in nj, is supposed to be an expert in CFS, I guess he would know about POTS, or any about the other things you guys mentioned. I read that a lot of people with CFS also have POTS. Some people believe that that might be causing some of thier CFS symptoms. It makes sence, It seems all these things are connected that have similar symptoms. I'm glad my pulse isn't as high as some of you. I don't knw how i could take it. I can barely climb the stairs without my heart wanting to jump out of my chest. I had to walk up one at a time last time i went to the docs, and even then I had to stop and rest...while my 69 year old MOM stood and waited for me. I told the doc but he didn't think anything of it. Okay I won't go into "doc ranting " mode. The thing about the pulse is, it is a bit high for normal and then it goes up at least 30 bpms when i stand for a few minutes. And then the symptoms worsen.That's what I read POTS does so I thought it was worth looking into. The tilt table test is definately worth doing. I know my bp drops when I stand too. To answer someones question I haven't lost weight. I imagine some other stuff i have going on might be keeping it on cause i really don't eat much. As for trauma or illness. i haven' had a physical trauma preceding this, but my brother had a heart attack and died in front of me 2 years ago. That would count for emotional trauma. Other than that , the only illness I had was last year when it rained constantly through the whole spring. I was sick for months with a sinus infection that wouldn't go away. That' s all i can think of. Well, Hopefully I can get an apointment with the nj CFS doc soon. I don't have the money. I'm on SSI ..but I'll live on nothing for the month if i have to. In the meantime, I'll try to load up on the salt and water as some of you suggested. Thanks so much

Sue

HI, Thanks for the reply. I think the breathing has something to do with the blood pressure/heart rate because when i was testing my blood pressure standing, the longer i stood the higher my heart rate went and the more my symptoms worsened. I found i couldn't stand longer than 10 minutes because I got so sick and couldn't breathe. I've had tests to rule out Lupus,Thyroid,Lyme disease, and a few others I don't even remember.Unfortunately I don't know anyone who could help me. I just heard about POTS for the first time last night.I've been going to the docs with these symptoms for months, and they haven't been any help. Whenever i mention something I read on the internet that relates to me they act like i'm stupid for bringing it up. It really angers me, because i am in no way a Hypocondriact, I'm pretty honest with myself, and know when i'm sick. I just wish the doctors would trust that.I'm amazed by the doc's some people have. They perform tests my docs won't even consider. I always have to plead my case when I go to the docs. Then finally they might give in and try something. It really adds to the stress of being sick. It's like they think these are minor things that are bothering me. I am supposed to see a neurologist but the earliest I can get an appointment is September. In the meantime i have to suffer with this. If I knew of a good doctor that knew about POTS I would pay out of my pocket to see them. I'm in NJ if anyone knows of a good doctor. I do see an endo..once in a while because although my thyroid tests are normal I do have a goiter.So he likes to check that to make sure it's not growing, plus he's treated me for the hypoglycemia. I could ask him for the Insulin resistance test if the GP won't give it to me. Sorry for the long post but I can't help venting about the docs I've seen. How did you find out you have POTS?

Sue

HI. I'm very new here but not to health support groups. I started out with Hypoglycemia, found out then I was anemic, and was diagnosed with fibromyalgia and cfs. It was from a few links from them that I found out about POTS . The thing is in the past few months I have been having very weird and scary symptoms that docs won't take seriously. First my right toes went numb. Off and on, more on than off. then A few months ago i noticed trouble breathing. Which is sort of hard to explain. It's like I'm out of breath, breathing short shallow breaths. Then I had heart palpitations. The next day I woke up and my left arm was numb. Okay I panicked and went to the emergency room. They gave me an ekg and sent me on my way. The only thing the could say the numbness was from was of course that old stand by ..anxiety. I told the guy I wasn't anxious until after I found my arm was numb. Then he said i probably slept on it wrong. Anyway, it just seems to get worse, i get soooooo weak, I feel like I'm dieing..sorry but i don't know how else to put it. ONe day I woke up and I could hardly move my muscles to walk, and speaking words were an effort. I noticed I feel a perculiar pressure in my upper chest and throat, when I have the breathing problems.NOw my legs and arms take turns getting numb. Also it feels like if a band was strapped around them sometimes. I had noticed that my blood pressure although it's not technically low. adverage105-65 IT can get lower but often stays right at the borderline of normal. So the doctors say that's good. But then I noticed a lot of the symptoms i have are symptoms of low blood pressure.Also my sodium level was low, and I eat a ton of salt. So I decided to do a little testing of my own. I started taking my bp lying, sitting and standing. I noticed a drop in pressure as I went from lying to standing. Then I also have a rapid heart beat. Anywhere from 80-95.again it's not as bad as some people but still. I noticed that it would go from 82 - to 127 within 10 mins. of going from lying to standing. Also I noticed all of the symptoms I had just kept worsening as I stood. First my legs had great pressure, then my chest , then the breathing got hard, dizzyness and faintness came in towards the end, & my fingers started to get numb. Oh i also get nausea all the time, wrecks my appitite, I can hardly drive anymore. So I'm wondering does any of this sound familiar to anyone here. From what i was feeling lately i thought it might be neurological, since I also have restless leg syndrome, and wake up gasping for air sometimes..which i heard could be central sleep apnea. Sorry if any of this is confusing but I'm also not thinking clearly sometimes. It's just really hard to funtion these days. It seems that it may be something to do with the blood pressure but I can't get a doctor to help me, and i don't know what to do. I'm not usually like this. Any help appreciated.

Sue