Help And A Chat Needed!

[DESPERATE DEB]

Hello everyone,

I am new here and have not yet been diagnosed. I haven't been well since last August and because some of my symptoms don't appear to be the same as others, I am not really sure whether it is dysautonomia or not but could really do with some advice. I will try to be as brief as I can:

I used to have panic attacks (or what I was told were panic attacks) which strangely only used to occur just before my period. I have had bouts of weakness since I gave birth to my first child in 1995. As I had been anaemic since I was 16 I was always told the weakness was due to this. I would take my iron supplements until my levels topped up then would start to feel better, until my level dropped again. I have been on and off iron supps most of my life. My periods are heavy so it made sense that my levels would go up and down and that I might feel weak after my period but never could understand why it would happen BEFORE my period.

Two years ago I was trying to lose a bit of weight for a holiday and started doing quite a bit of exercise to get in shape. I've always been really active and the exercises I did were actually nothing in comparison to what I used to do years ago. I took on board the fact that I was obviously older and had two children since then but I had terrible chest pains one night and went to my local A&E. They did a chest xray and ECG and bloodwork. Nothing could be found so they sent me home with indigestion tablets. This then happened again quite a few times accompanied by breathlessness and feeling faint. I was sent for an angiogram. This was also normal. This kept happening for a while and although I do get acid reflux and take tablets for it, it didn't feel like just heartburn. I was then put on omeraprazole for almost two years. Although the heartburn settled I still had chest pain quite often but every time I saw the doctor and mentioned it he said it was just stress and anxiety.

Last July I went to Cyprus for a holiday and on the flight on the way out, all of a sudden I came over really faint while sitting down feeling quite relaxed and eating. This left me feeling terrible, clammy and weak for the rest of the flight. I put it down to nerves and travel but it happened again five days into the holiday. Again, I was sitting down and this is the point I find confusing. I felt so bad afterwards that it ruined my holiday. I couldn't even go swimming or go shopping. My legs were just so weak, like I had the flu. I got in the pool one day and was so breathless I had to get out.

When I got back from the holiday I went to see the doctor as I actually thought that feeling that bad I had had swine flu. I had never felt so awful. He said it was probably anxiety but would check thyroid, iron etc. It came back I was anaemic but not enough to warrant how I felt. I had started to go numb down one side of my face and then sometimes in my left hand and arm. I had heard of B12 deficiency and asked to be tested, in fact had to beg him to check it. It came back normal and was told to just take the iron again, the rest was probably stress. At times I really thought I was going crazy because I had all these terrible things going wrong and yet there was no medical reason for it. My legs ached, I sometimes felt so tired felt too tired to speak and when I did my speech would often be slurred. I would be freezing cold when everyone else was warm. I would be shaking inside when it couldn't be seen outside. I had chest pain and palpitations and became afraid to go out. The doc put me on propranolol. They made me feel even worse and started getting funny twitching all over my body. I would have pains in my hands feet and even (and I know it sounds odd but my veins hurt). Weirdly around Christmas 2009 I had started to settle down.

I would get weakness every now and then but hardly any chest pain and no fainting. Last month, it all started again! with chest pain and aching all over. Have near fainted 3 times in the last two weeks. I can't find any triggers for two of the times. The first time was again, just before my period. I feel sick for no reason whatsoever, but never actually vomit. I then won't eat because of it. Today I have been shopping and been to parents evening at the school and feel exhausted and like I have the flu where my legs just ache so much I want to curl up and cry.

I decided last week I would go to see the doctor again as I couldn't stand this any longer. Apart from calling me a hyperchondriac, he has told me there is nothing he can do for me as I have had all the tests he can send me for so, I should just try and CALM DOWN! I am so frustrated I actually cried in front of him and he said it was because I was depressed. I told him I was depressed because I don't feel well and I want my life back.

I was actually really excited when I came accross this site, to actually feel like I am not CRAZY.

I'm sorry it's so much to read but my symptoms don't seem the same as others as although I always feel giddy when I am upright I only seem to pass out when sitting or lying down. I don't understand it at all.

[lauralulu]

Hi Deb-

Is there any way you can find a NEW Doctor? I ask this because back in 2002, I was experiencing symptoms I couldn't understand and my Doctor didn't believe me either- he put it down to 'stress' or anxiety. Getting a new one was SO much better for me EMOTIONALLY- the Doctor didn't actually help me to discover about dysautonomia but once I HAD discovered it, knowing I had SUPPORTIVE Doctor gave me the confidence to ask for a referral to someone who could run the right tests for me.

I think it is SO important that when you have something mysteriously wrong (whatever it may be) that you have a Doctor who is supportive and understanding, NOT one who just calls you depressed because you (quite rightly) burst into tears out of frustration!

Passing out when feeling calm and relaxed doesn't sound like something anxiety would cause. If your Doctor has 'written you off' as there's nothing more they can do, maybe it's time to find someone else who's prepared to look deeper. NO Doctor should call a worried patient who is only trying to find a reason for abnormal symptoms a hypochondriac!

[DESPERATE DEB]

Hi Deb-

Is there any way you can find a NEW Doctor? I ask this because back in 2002, I was experiencing symptoms I couldn't understand and my Doctor didn't believe me either- he put it down to 'stress' or anxiety. Getting a new one was SO much better for me EMOTIONALLY- the Doctor didn't actually help me to discover about dysautonomia but once I HAD discovered it, knowing I had SUPPORTIVE Doctor gave me the confidence to ask for a referral to someone who could run the right tests for me.

I think it is SO important that when you have something mysteriously wrong (whatever it may be) that you have a Doctor who is supportive and understanding, NOT one who just calls you depressed because you (quite rightly) burst into tears out of frustration!

Passing out when feeling calm and relaxed doesn't sound like something anxiety would cause. If your Doctor has 'written you off' as there's nothing more they can do, maybe it's time to find someone else who's prepared to look deeper. NO Doctor should call a worried patient who is only trying to find a reason for abnormal symptoms a hypochondriac!

Hi Laura,

Thanks so much for your reply. I apologise for all that you had to read I think I just blurted it all out to get it off my chest. I forgot to mention that because of the way he spoke to me last time I have managed to get an appointment with a new doctor at the practice who I have heard is great and understanding. My problem is that because I have had so many different symptoms and such a wide range I don't want to confuse her from the start. I want to go in and get my point over without going into floods of tears and blurt everything out. I'm hoping she'll know something about it and might know the first place to start. With the other doctor, I can understand how frustrating it was for him too as every time I went it was something else, headache that won't go, fainting, fuzzy feeling, chest pain, shivering, nausea, shaking and aching. I think everyone at home is probably fed up with the sight of me too always something wrong with me understandably they don't know what is going on either and they are even starting to roll their eyes when I complain about things. I can't expect them to understand. I seem to have lost touch with my friends because of all this too. I feel like I don't want to speak to them at the moment because I am not very good company.

Obviously you are here because you are suffering too and I appreciate your help. Hope you are not too unwell. I note you're in the UK too, which is nice. If you ever want to chat or let off steam, please send me a message.

[RIfainthearted]

Deb- I think we've all been desperate at times with our various symptoms. One easy way to check for POTS is to take your BP while lying down, sitting and standing. You must be in those positions for 2 minutes before you get the BP reading. For me, it started with tachycardia being explored (150 HR resting, rising to 180's standing). It was later that the lowering of the BP upon standing became so evident. I think if your BP drops more than 30 pts. upon standing, while your HR rises significantly, you may have POTS. I, too, am cold all of the time (particularly my hands and feet). Perhaps you could print up some concise info on POTS and show it to your new doc. You have to trust your instincts. Ignore any who doubt that there's something physiologically wrong. Continue to be your best advocate. Tell any doc who dismisses you with "it's anxiety, depression, stress, etc." to take a flying leap...

[lauralulu]

I had trouble remembering everything too so this time I've written it all down, from when I first got ill, including ALL the symptoms I've ever had, even ones I thought in the past weren't 'significant'. I've also written down which symptoms trouble me the most, when I get them, and what medications and herbal supplements I've taken or am taking. All written down then scanned into my notes. Then I just update it when anything new happens. It's much easier than trying to remember everything, and you couldn't get it all across verbally anyway even if you COULD remember.

Good luck!

[futurehope]

My suggestion is similar to what's already been said. If you could get your hands on a blood pressure cuff, take the reading after lying down, then after 2 minutes of standing, you may have the information you need.

You can take your own pulse in these two positions so you can see if it is elevated after standing still. Look at your hands and feet after standing still as well and note any color changes like reddish purple.

My suggestion is to hone in on the BP/HR readings early into the actual doctor's exam (especially if the change from supine/standing is significant). This way the doctor will see scientifically what is happening in your body and know it is not all in your head.

Than, find a doctor who understands this condition and may be in a better place to help you, if the new one has no idea.

[DESPERATE DEB]

Deb- I think we've all been desperate at times with our various symptoms. One easy way to check for POTS is to take your BP while lying down, sitting and standing. You must be in those positions for 2 minutes before you get the BP reading. For me, it started with tachycardia being explored (150 HR resting, rising to 180's standing). It was later that the lowering of the BP upon standing became so evident. I think if your BP drops more than 30 pts. upon standing, while your HR rises significantly, you may have POTS. I, too, am cold all of the time (particularly my hands and feet). Perhaps you could print up some concise info on POTS and show it to your new doc. You have to trust your instincts. Ignore any who doubt that there's something physiologically wrong. Continue to be your best advocate. Tell any doc who dismisses you with "it's anxiety, depression, stress, etc." to take a flying leap...

Thank you, and all the others who have replied to my post. There is a lot of useful information here. I am going to borrow my mum's BP monitor at the weekend and see what happens. I feel a lot less lonely now I have found this site. Although I am surrounded by people, I always feel so totally alone with this as nobody I know has ever gone through this. Thanks everyone

[StacyRN]

Hi Deb, boy you sound just like me when I first found this forum It sure sounds like you have some form of dysautonomia, whether it's POTS, or NCS, or whichever type, it sounds just like some for of dysautonomia. I have hyperadrenergic POTS, which they found because my supine/standing norepinephrine levels were 604/1231... really high. There are many tests they can do, but it's hard to find a doctor who knows what to order, and even what the tests are for! I was lucky to find a great doctor at Stanford University in California, USA.

I remember about 5 years ago I fainted when I was sitting at a computer at work, not stressed or anything, and I feel really sick even lying down or sitting a lot of the time, so it's not just when you stand up that you have the symptoms always...

Good luck to you finding some treatments that help you, it's so individualized, you'll find out! I'm trying different things, and different meds, but I still am unable to work. I'm a new RN, so it's frustrating, but I'm not going to give up!

Hang in there, and good luck to you!

Stacy RN

[DESPERATE DEB]

Hi Deb, boy you sound just like me when I first found this forum It sure sounds like you have some form of dysautonomia, whether it's POTS, or NCS, or whichever type, it sounds just like some for of dysautonomia. I have hyperadrenergic POTS, which they found because my supine/standing norepinephrine levels were 604/1231... really high. There are many tests they can do, but it's hard to find a doctor who knows what to order, and even what the tests are for! I was lucky to find a great doctor at Stanford University in California, USA.

I remember about 5 years ago I fainted when I was sitting at a computer at work, not stressed or anything, and I feel really sick even lying down or sitting a lot of the time, so it's not just when you stand up that you have the symptoms always...

Good luck to you finding some treatments that help you, it's so individualized, you'll find out! I'm trying different things, and different meds, but I still am unable to work. I'm a new RN, so it's frustrating, but I'm not going to give up!

Hang in there, and good luck to you!

Stacy RN

Hi Stacey,

Thank you for your kind reply. I saw from another post of yours about a newspaper article that the BP monitoring isn't always reliable as you can have a high HR and yet BP doesn't change. I was going to borrow my mum's monitor this weekend and will still give it a go but if it doesn't show a rise I will still ask the new doctor to refer me for a tilt table test. Thanks again. Take care. Deb

[DESPERATE DEB]

Hi Deb, boy you sound just like me when I first found this forum It sure sounds like you have some form of dysautonomia, whether it's POTS, or NCS, or whichever type, it sounds just like some for of dysautonomia. I have hyperadrenergic POTS, which they found because my supine/standing norepinephrine levels were 604/1231... really high. There are many tests they can do, but it's hard to find a doctor who knows what to order, and even what the tests are for! I was lucky to find a great doctor at Stanford University in California, USA.

I remember about 5 years ago I fainted when I was sitting at a computer at work, not stressed or anything, and I feel really sick even lying down or sitting a lot of the time, so it's not just when you stand up that you have the symptoms always...

Good luck to you finding some treatments that help you, it's so individualized, you'll find out! I'm trying different things, and different meds, but I still am unable to work. I'm a new RN, so it's frustrating, but I'm not going to give up!

Hang in there, and good luck to you!

Stacy RN

Hi Stacey,

Thank you for your kind reply. I saw from another post of yours about a newspaper article that the BP monitoring isn't always reliable as you can have a high HR and yet BP doesn't change. I was going to borrow my mum's monitor this weekend and will still give it a go but if it doesn't show a rise I will still ask the new doctor to refer me for a tilt table test. Thanks again. Take care. Deb

[StacyRN]

Sure, Deb, glad to be of any help at all! And please let us know how it goes with the doctor, testing, etc., I will be thinking of you and hoping for some help for you!

Stacy

[momdi]

Hi Desperate Deb,

Best of luck to you. Most of us have been where you are or somewhere similar. Our son was misdiagnosed for almost a decade before I figured out that he had POTS by coming across some of Dr. Grubbs published articles on the internet. Don't even ask what that poor kid went through in those 8 years, and even after that. I say this only so that you understand that those of us here KNOW and understand. Unfortunately, all too well.

Anyway, back to you. Regarding the BP, Michael has the hyperadrenergic form of POTS and when he stands up, his pulse soars, but also his BP numbers get closer together - that's called a narrowing of pulse pressure. He starts to feel really awful, and if somehow he would not be allowed to recline, he'd pass out. Recently he had a horrid episode in an airport and the paramedics wanted to transport him to hospital precisely because of the narrowed pulse pressure which was 130/100. So you are correct... some people with POTS do NOT have a drop in BP. But a narrowed pulse pressure is what occurs just before one passes out (and the BP actually/ eventually does drop). I hope that's not too confusing. You can also have an elevated BP, in the same way that someone in shock has an elevated BP which is compensatory for their lowered blood flow.

Bear in mind that there are MANY forms of dysautonomia, POTS being just one of them.

As a nurse, might I suggest that you try to somehow categorize your symptoms so they don't look like a hodgepodge. Doctors seem to have a hard time handling more than one or two symptoms at a time. You might want to preface your list by saying something like you realize that there seem to be alot of disparate symptoms, but you don't want to leave anything out that might be significant to the doctor. Maybe say that you are totally confused by all these symptoms as you had been healthy and active until recently. I hope I don't sound as though I'm trying to make this your responsibility. In a perfect world, it would not be. But... the reality

Good luck my friend.

Let us know how it turns out.

[StacyRN]

I totally agree with you, Dianne, you explained it so well! That is what happens to me also, my pulse pressure narrows, sometimes down to a difference of 15! I feel the same way your son does when that happens. Thank you for explaining it so well

Stacy

[potsgirl]

Hi Deb~

Just a note to say that some doctors (including my doctor at the Mayo Clinic, Rochester) define POTS as a 30 or more point jump in your HR when you stand, but that your BP shouldn't vary more than 10-15 points or so. If your BP drops a lot, then you may have another form of dysautonomia called orthostatic hypotension, Neurally Mediated Hypotension, or Autonomic Neuropathy. Like others have written, there are many forms of dysautonomia.

The only other thing I would like to add is that I think it's beneficial to lie down for at least 5 minutes before standing, while taking your BP and HR both at the end of the 5-10 minutes lying, and then at 1, 3, and 5 minutes while standing. Hopefully your mother's BP unit also has HR on it. If not, you may want to buy one of your own, so you can take your readings every so often over time.

Good luck to you, and so glad you found us! Please let us know what readings you get when you try your 'Poor Man's Tilt Table'.

Cheers,

Jana

[DESPERATE DEB]

Hi Deb~

Just a note to say that some doctors (including my doctor at the Mayo Clinic, Rochester) define POTS as a 30 or more point jump in your HR when you stand, but that your BP shouldn't vary more than 10-15 points or so. If your BP drops a lot, then you may have another form of dysautonomia called orthostatic hypotension, Neurally Mediated Hypotension, or Autonomic Neuropathy. Like others have written, there are many forms of dysautonomia.

The only other thing I would like to add is that I think it's beneficial to lie down for at least 5 minutes before standing, while taking your BP and HR both at the end of the 5-10 minutes lying, and then at 1, 3, and 5 minutes while standing. Hopefully your mother's BP unit also has HR on it. If not, you may want to buy one of your own, so you can take your readings every so often over time.

Good luck to you, and so glad you found us! Please let us know what readings you get when you try your 'Poor Man's Tilt Table'.

Cheers,

Jana

Thanks Jana and everyone else who has given me such good advice on this post.

Deb x

[DESPERATE DEB]

Hi Desperate Deb,

Best of luck to you. Most of us have been where you are or somewhere similar. Our son was misdiagnosed for almost a decade before I figured out that he had POTS by coming across some of Dr. Grubbs published articles on the internet. Don't even ask what that poor kid went through in those 8 years, and even after that. I say this only so that you understand that those of us here KNOW and understand. Unfortunately, all too well.

Anyway, back to you. Regarding the BP, Michael has the hyperadrenergic form of POTS and when he stands up, his pulse soars, but also his BP numbers get closer together - that's called a narrowing of pulse pressure. He starts to feel really awful, and if somehow he would not be allowed to recline, he'd pass out. Recently he had a horrid episode in an airport and the paramedics wanted to transport him to hospital precisely because of the narrowed pulse pressure which was 130/100. So you are correct... some people with POTS do NOT have a drop in BP. But a narrowed pulse pressure is what occurs just before one passes out (and the BP actually/ eventually does drop). I hope that's not too confusing. You can also have an elevated BP, in the same way that someone in shock has an elevated BP which is compensatory for their lowered blood flow.

Bear in mind that there are MANY forms of dysautonomia, POTS being just one of them.

As a nurse, might I suggest that you try to somehow categorize your symptoms so they don't look like a hodgepodge. Doctors seem to have a hard time handling more than one or two symptoms at a time. You might want to preface your list by saying something like you realize that there seem to be alot of disparate symptoms, but you don't want to leave anything out that might be significant to the doctor. Maybe say that you are totally confused by all these symptoms as you had been healthy and active until recently. I hope I don't sound as though I'm trying to make this your responsibility. In a perfect world, it would not be. But... the reality

Good luck my friend.

Let us know how it turns out.

Thanks for your post. It really is helpful. It must have been terrible for your son and all of your family waiting for some help with this.

Because of the experience I have had so far with GP's, they have got quite frustrated with me and actually asked me "what tests do you want now?" ha ha. Of course before seeing this site I had no idea what the answer to that was. Now I have some ideas but because they will not understand this even though I will turn up with my print offs about it, I know for a fact they will not know where to send me. Do I say a cardiologist or a neurologist? and does it have to be a specific one? I know that I will eventually want to see a specialist in this but would I have to see a cardio or neuro person to have some "evidence" of a protential problem before I can get a referral?

I really have been through a bad time with this horrible thing, and its definitely been made worse from the sheer frustration and stress I have had from being treated so badly for not being a "straight forward" case for them. If it turns out that I am right about this and do eventually get diagnosed, I will definitely report them for their treatment of me.

Look forward to hearing from you.

Take care.

Debx

[lieze]

Deb,

I have a lot of the same symptoms that you do.

I have not been diagnosed yet either.

Please give us an update after your appointment and let us know how it went.

lieze