Oh what a day - advice?

[denabob]

I'm glad to see that you're doing a little better! I try to put myself into the shoes of our "significant others"( I'm not married but have a great guy) I cant imagine how frustrating it would be to watch him suffer through our symptoms and not be able to help him! I'm sure it would wear on us after a while.

We also met later in life (after POTS) and he loves me just the way I am. He says everything that happens in our lives makes us who we are at this moment and I guess you have to look at it that way. You may wish he new you when you were 22 but were you the same person then? I'm not! I like me better now in spite of my physical problems.

It is my personality type too ,I worry and get insecure especially when I'm ill!!! My boyfriend told me to not worry about what he can handle or what he should feel or think that it is his job to do that!

Whoever said to just ask them to say what we need to hear is a genius! Men are definitely NOT good mind readers. Bless their hearts they try! Usually you do get what you asked for and some extra because then they realize what we need. I'm done rambling now.

hugs!

Deanna

[laila]

Hi Jackie,

I just found this support site, read your letter and couldn't beleive what you said because I could say the exact same thing about my Psychiatrist I almost fell out of my chair when I read your post!! After 8 long years of struggling to get a correct diagnosis for my health issues, I think there is some light at end of tunnel. I have had generalized anxiety disorder and major panic attacks, which are pretty much controlled soley with xanax. But I also have been dx with chronic fatigue and fibromyalgia but the feeling of tachacardia and near faintness has never been solved. Was sent to cardiologist, tests, ok. Never actually fainted but come very near to feeling, especially in stores or when trying to take walks. Have been so sad that the answer is always ANXIETY@!!! My pysch doc never listens to anything I say, just gets irratated with me because I can not tolerate any antidepressant I have tried, and yes I felt like I was a child being chastised because I would have to take more meds than prescribed at times, and he would act like it was my fault!! He is going to get ditched shortly. I will mail him info on this condition. I swear, he seems like a nice person but I could probly help myself more without a degree in stupidness. My PMC doc who I really liked, at least she ran a lot of tests left the practice and I finally started reading about pots on the internet, I actually asked a dr to check my blood pressure ( I was in for a sinus infection) while lying then standing ,I was almost in shock when he patted my hand, walked out of the room and said "I don't have time!!!) THis was a Saturday visit, but my golly is that what hmos have come to? I finally picked a new younger physician assistant (woman) for my physical, I had seen her once for sinuses, and approached the subject again about the horrible physical distress my body felt under, especially upon rising in the morning, etc. She kind of shook her head and said ANXIETY can take over your life!!! I tried again at the physical and bless her heart she did the blood pressure check, of course it was normal, but I tried being very calm and saying how long I had suffered, etc. she looked in my eyes and asked if I wanted to see a neurolagist for possible orthostatic problems.(AM now waiting for referral.) She acually also had a bunch of blood work ordered, I had also suggested being possibly hypoglecimic. I cant beleive someone actually listened!!! I am still not sure what and If I have pots syndrome but the symptoms sure are like Panic attacks. I think that not knowing was the worst thing of all. Bless this ladys' heart. AT least shes trying. I did however ask for an antibiotic for my sinuses after being there for 2 hours, she was running between patients, she said no I didn;t need them. HHHHAAA. Well now I have a flaming headache from waiting a week and will have to fork out more money, what a scam. Well, the important thing is at least she got me an inch in the right direction. More later. One day old on this site, maybe this is the end of the line !!!!!!!!!!!!!!Good luck to you.

[Merrill]

Laila--make sure you ask for a tilt table test!!! I have read in many medical articles on the topic (may I recommend also the NDRF.com web site as another source of information), and they all say that one of the key diagnostic tests for POTS specifically is the tilt table test. POTs or orthostatic intolerance is indicated if your heart rate goes up 30 or more beats per minute in the first minute of being tilted from flat to a 70 degree angle. They measure your blood pressure throughout the test as well as heart rate; for some pressure drops, for some it rises, for some it stays the same.

All that's to say, you can have dysautonomia (dysfuntion of the autonomic nervous system) WITHOUT having blood pressure problems. For example, I have POTS without BP fluctuations (the fluctuations I have are normal; everyone's fluctuates to some degree depending on what the body is being asked to do at any moment). But I passed (failed?) my tilt table with flying colors--and the diagnosis finally explains a lifetime of weird symtoms--INCLUDING problems with panic and anxiety! I also have trouble standing, walking etc without fierce tachycardia (fast heart rate over 100--mine's typically between 120 and 155, even when I'm not doing anything!) A fast heart would make anyone anxious!

You said you'd had cardiac tests, but I wonder what kind. Did you wear a 24 hour holter monitor? (If heart rate is elevated during the day but goes down during sleep, it's much less likely you have something called Inappropriate Sinus Tachycardia.) The blood tests you had should check for thyroid function; problems with thyroid can cause tachycardia also.

Once I found out why I felt like I was panicking, I felt so much better! It's not ME, it's my BODY that's acting like it's panicking. This is hard to explain! But now when I feel awash in adrenaline, I can at least say, oh, there's my old familiar friend POTSY -- and I know better how to deal with it.

I hope this helps in some way--Good luck--and write with more questions.

[MightyMouse]

Here is the link to the quality of life article mentioned above. I will post under a separate thread as well so that it doesn't get lost in here:

http://www.mayo.edu/proceedings/2002/jun/7706a4.pdf

[laila]

Hi Merrill,

Thank you for your reply and information. As for the bloodwork, it is the usually battery of regular tests, my thyroid has always been ok, she asked for sed rate, lupus,lyme, and rheumatoid factor, as well as i thinkmaybe some blood sugar and urine stuff. The first cardiologist I went to was an old fart, he did do the 24 hour holter, and echo, which both were ok. That was years ago. He said it was all ANxiety and that I should take more xanax, that "everyone who comes in here has this problem." I was very frustrated. THen about a year ago after my hysterectomy everything got real bad, and I was referred to another cardio doctor who did a one month event moniter, an echo, and a cardiac asthma function test, all normal. My current new lady DR. was about to refer me to a cardio but when I mentioned I had been she shut down, that was before the latest good appointment. Is a Neurologist the right DR. for pots? I have read that others were going to a cardio. Thanks again for your help. P.s. I have also recently quit smoking and drinking, which has actullay helped the anxiety but depression is bad!!!!!!!!!! I tried half a lexapro in desperation but felt awful. It is supposed to be a very clean, side effect free drug. Well I dont know. I have problems with all kinds of meds. This doc also gave me atenolol ( a beta blocker) but it kept me up all night, and I seemed to get wheezy. I have copd from smoking plus have asthma and my lungs are taking forever to clear out. Its been 2 months. I am 44. Bye now. Laila

[MomtoGiuliana]

Jackie

Didn't read all of the posts in response to your original, but I just want to say that I am so disgusted and disturbed that a psychiatrist ESPECIALLY would behave that way to a patient. Something is WRONG with him. I hope you can find someone else. In my limited experience with a psychiatrist, I went to one when I was still undiagnosed (was bullied into it by my gp) and she was SOO nice and LISTENED. She said that she didn't see evidence of mental illness/instability, and didn't prescribe any medications, I had so many unexplained physical symptoms--she helped me re-convince myself that more was wrong than this out-of-the-blue anxiety and "depression". There has got to be a better psychiatrist out there for you to consult. Maybe a woman--I think a lot of male psychologists unfortunately are more likely to subscribe to the "old school" of thought that women tend to be "hysterical" or imagine problems.

Best wishes. It will get better!

Katherine

[denabob]

laila :COPD complicates things as far as POTS meds. my mom has POTS symptoms but she also has COPD so they wont treat her for POTS! Beta- blockers can be hard on your lungs if your not otherwise healthy. Be careful when trying new ones! One test that I didnt see mentioned was to rule out addisons disease- it carries the same POTS symptoms but is a failure of the adrenal gland which is dangerous! But can be treated and controlled with a pill!

As far as the right kind of doctor ,I dont know that there is one excpet that they are knowledgeable of dysautonomias! I have seen a neurologist who wouldnt know what was happening if he watched me fall. Then on to a GOOD neurologist who ordered a Tilt Table Test ( which I hear is rare for neuro's) Then on to two different cardio's and a electrophysiologist cardiologist now I see an endocronologist ( that I'm pleased with so I'll stay with!). You just need a doctor who if they dont know will try to send you to someone who does instead of labeling you with anxiety!

Good Luck!

Deanna

[Jackie]

I know it has been days but I just wanted to come back and thank everybody for their tremendous support. It never ceases to amaze me that people would take such time to comtemplate my stupid problems and give me advice and support. I truly appreciate it to so much. You are light when the days are dark and my reality check when things are confusing and I thank you.

Things with hubby are much better as he finally got a couple days off in a row...and well after a row or two of us venting, we got back on the same page and things are just fine. I think we are basically both so overwhelmed with this, my time off work, our subsequent financial problems, and everything else...and reacting to the stress of it all.

Also, not surprisingly, I realized I'm in my 7-day countdown to ye' old period again. The usual time I'm going to obscess over something if ever. Does anybody else get more emotional and more fragile health-wise and mentally before "that" time?

Anyway, just wanted to say thanks and even though the PMS is raging, all in all I'm holding my own.

As for the doctor, I watched this Christian program over the weekend and suprisingly or not so much so the message was forgiveness. Well, I thought I have no issue with unforgiveness so I might not get so much out of today's sermon. Well, lo and behold, by the time the message was complete I realized it was totally helpful and speaking again directly to my situation. Sorry, I'm a spiritual person! But anyway, the concept was that we sometimes block or lose our blessing/healing by not forgiving and the principles were interconnected and protrayed with an example of (my goodness my mind goes blank on the name of the person from the Bible) but he was "condemned" by the priests for having leprosy and was banished to a leopar (sp?) colony. When Jesus healed him, he simply told him to go and show himself to the priest and offer the sacrifice that Moses commanded. Well the point was, he had to get over his anger at the person who had "condemned" him and show himself to him (forgive him basically) and offer his sacrifice to the Church (it was protrayed as a monitary sacrifice anyway) and well it was just acted out very dramatically and was very touching. Others refused to forgive and go to the priest and they remained stricken with leprosy...they lost their blessing. It was an interesting interpretation/protrayal of this scripture. It helped me to realize though that we have to forgive others because holding onto that grief will only be a disservice to us and impede our healing/blessings, etc. For me, I'm not going to let my anger, hurt, frustration, or unforgiveness at his condemnation of me block my healing and blessing. Don't know if that helps anybody but it sure helped me.

Thanks again for supporting me through a very dark day! I love you guys!

[WeimerMom]

Jackie,

I'm new to this site and have been reading about your ordeal. I too have had "bad" doctors, and I understand about forgiveness, however, that doesn't give him the right to treat you like a doormat and you should not just drop it. You will feel much better if you say something. You don't have to be rude, etc. Just send him an email or fax (fax is better, everyone in the office see's it, unlike an email) explaining that you have decided to change your care to another doctor who will actually listen to you and do a little research on your condition, unlike him. You can say that you forgive him for his shortgivings and hope that God will Bless him with some extra knowledge and understanding so he can help the next person like you. You don't have to hate him, just make a solid statement that he is not the doctor for you and why.....You will feel much better about yourself. You said that you used to be independent etc. Don't lose that. Doctors are not Gods, they do make mistakes and don't get along with everybody. You don't know what this guy is going through. Maybe God is trying to get him to wake up and you are the vessel that He is using. We could discuss it to death if we wanted, but the bottom line is YOU......Stand up for YOU....Tell this guy that you won't stand for this mistreatment/untreatment anymore. You have to become proactive in your health care, cause no one else is going to.......If you don't expect and demand the best for you, who will?....I've been to many, many doctors and undergone many, many tests just like most POTS people and actually got to the point when I thought I was nuts..... Believe me, I know. If you don't become proactive and take the reins, they will pass you pills and let you sit in some corner, wasting away. You used to be more independent you said, before you met your husband. He was attracted to that and probably expects that from you. You have let yourself lose a little of that, by depending on health care professionals to give you answers instead of getting them yourself. Again, been there, done that.....Partly because we believe that doctors are wonderful and we can't do the same thing as them. We think they are all pure, true and wonderful, not so.....as you have found out. Please believe me that I've been there and probably will again, but also believe that I expect the best I can get. When I go to the grocery store, I expect the best milk, meat, produce etc. for my money, and now I do the same for my health care. If I don't like how a doctor is treating me, I speak up. If they don't like it, oh well, I can get another doctor, cause most of them are not experts on POTS and will be learning the same as me. Might as well train a new one as you go along........right!!!!

Hang in there, forgivness is great, but you can also help yourself and someone else by saying something to the jerk doctor.....Better go, didn't realize it was past my bed time, gotta get that extra sleep. Please take care.....

[Marg]

Jackie -

Glad you're feeling better!

Forgive and forget is what I say. Forgive him and forget you ever new him! Send him a copy of the Hippocratic Oath and hi-lite the areas you think he needs to improve on. Then write him a little note and tell him how much better you feel now that you don't have to deal with him anymore.

When you look for a new doctor, it may be helpful to send a copy of the information from "PotsPlace". Let the doctor know that yes, you do have anxiety but who wouldn't when you're faced with all the symtoms you have to deal with when you have POTS. Ask the new doctor if she/he has ever heard of POTS or if they have ever treated any other patients with POTS.

Also, be very careful of how you feel on any medication you are given. Even if you are not having anxiety attacks, the medication may not be the right one for you. Let the doctor know if you think the medication is altering your personality in any way, especially if you are feeling depressed. Anti-depressants, specifically SSRI's can cause you to be even more depressed if it's not the right one for you. Don't let anyone tell you it's just the POTS making you more depressed.

Good Luck!

Margaret

[purplefocus]

I'm glad you are doing better and things with hubby are improving. I also have feelings of "I wonder if hubby will find someone that has more energy and isn't having a bad day all the time" and I also have extreme guilt feelings for not pulling my share as far as holding down a job right now. I just have to remember he married me......me not a disease and he loves me. He never says things to me or does things to make me feel this way it is just me feeling guilt, but it is out of my control just as it is yours. As for the doctor, I think you should make him aware of how wrong he did you. You will find the right doctor and things will be less anxious for you hopefully. Finding this site for me was a Godsend. It is such a comfort. I think everyone on here is so wonderful. I'm glad you have found this site also. Take care and I wish you rest and happiness.