Spousal Support

[migraine]

Hi Everyone!

Based on several posts, I finally took your advice and asked my husband to come to my umpteenth doctor's appointment for POTS. This time it was a new cardiologist. I'm not sure my husband got the full picture of POTS, but it certainly helped him to see what it takes to go to each visit... The scheduling, the waiting room, starting from the top with my history, explaining, anwering questions, medications & their effects, discussing factual test results, etc. This was an actual doctor discussing my problems as medical rather than psychological. It helped him to see that this was not a made up disease.

Because my husband has not been with me to the doctors in awhile, I had forgotten how comforting it was to have him there. Not only did the doctor ask me questions, but he asked my husband about his observations of me and confirmed to the doctor some of my problems. I also felt like I was treated a little better because my husband was sitting there. I am usually rushed through my appointments only to discover I forgot to tell him half of my problems. I'm not sure why, but I felt like I was taken more seriously and things were explained a little slower.

What I did not like is the doctor's under empasis of POTs. Some doctors I run in to are very interested and concerned. Others dismiss it as some insignificant title. I really liked this doctor, however he referred to POTS as a "benign" disease and very common. I really did not need this statement with my already skeptical husband present. I do believe there are different degrees of POTS and some people have a mild case or don't even know they have it. With the birth of each of my children, mine has become progressively worse and I would not consider it "benign." I think we can only take the information from all of these doctors and be our own advocate and decide what is best for ourselves.

He did order a new test I have not had. He believes I have sleep apnea and that many of my symptoms (migraine, fatigue) come from oxygen issues or lack of sleep. I'm sure this is a possibility and certainly worth looking into. What I think they will find (based on my tilt table test and information posted on this site) is that my blood pressure is so low at night that I truely may not be getting enough oxygen/blood flow. This could be why I have headaches in the morning and don't feel too hot when I get up. So if they discover that, it is another validation...but is there a cure?

We did discuss medications and seem to be on the same page as far as treatment, so I guess we'll just go from here and see what happens. I plan on taking my husband to future appointments so he can be in the loop as well. I did notice a slight change in that it may have dawned on him that I am tired. He helped the kids with their homework this morning and did some budgeting regarding next year's childcare which was really freaking me out. Hopefully I will see these little increments of empathy in the future, because God knows I need them. Thanks for the great advice!

[justme]

Your husband should be there if he can. I take an active role in my wife's treatments and attend all pacemaker and cardiologist appointments. I think it does help to have a second person reaffirming the symptoms. I also seem to be able to add things that she really doesn't notice or has gotten so good at dealing with them over the years that it is just a part of every day life (most things are this way now). Our family doctor actually recommended I go to her next appointment with her. We are starting to get a little push back because we don't seem to be making much progress and her symptoms continue to get worse. I agree that POTS is downplayed by doctors and many websites. Even Mayo seemed to downplay it....except for the people in charge of the research studies.

[justme]

I forgot to add this... I knew that my wife's symptoms were bad and that she went through alot. She almost died on me a few time (prior to us being married). I have also taken her to the ER many, many times. I will say that sitting through the tests that Mayo did with her and seeing how sick she got that first week and hearing some of her explanations gave me an even better idea of the day to day things she goes through.

[Guest Julia59]

I would not call almost dying a "benign disorder". It seems a lot of people have gone through some life threatning experiences-------------so what's up with some of these Docs............................................

Julie :0)

[danelle]

justme, what do you mean by almost dying? If you don't mind my asking-what exactly happened?

[briarrose]

Please forgive my first 3 paragraphs as I'm angry and frustrated today but can't help myself for saying it

What's up with these docs. Well the ones that actually get some educations from some of the research hotshots are told that we just need water and a pat on the head to make us feel better (that's what's known in the medical profession as reassurance and lets move on to the next patient because they don't know how to help us.) Because the research doctors only see us for a day, a week or maybe at most a month. They really have very little idea, the **** we endure and how our symptoms change over time.

So hopefully in the next 20-60 years (I'm not feeling optomistic today) the medical students will get a better education. Oh yeah, guess that would mean they need better teachers. Oh yeah, we don't have that yet. We're still sitting in the dark ages of medicine. Some doctors say that stem cell research will be the possible cure to our problems, oh yeah America isn't allowed to do stem cell research. Well Go Europe!

Can you tell I'm having a bad day, one of those moments of anger about the stupidy and ignorance of others (namely doctors that have a decade of medical education that don't have the first clue because they can't stop and take the time to figure things out or listen to the patient!)

On a lighter note -

JustMe- you are a wonderful person. Can we clone you several thousand times. I nominate you in charge of educating family, friends and significant others that are suppose to be close to us for better and worse. Yes, I've noticed that doctors take more time and take us more seriously when someone is there to help represent us. It's easier to believe 2 people over 1. Furthermore, as a POTS patient and being under the stress to remember everything that I suffer, I often forget what the main reasons I go to my appointments and forget to say half the things that need to be. I try to always write them down and take them with me. Although I have been known to walk out of the house and forget my list on my desk LOL

I think that all spouses and families should read through the boards at least once, just so they know what their hearing from one is actually being said by many.

steph

[danelle]

steph, couldn't have said it better myself-all of it actually.

Justme-you are one great person! your wife is very fortunate! Send some of that supportiveness my husband's way! LOL

[briarrose]

Danelle - thank you for the support today, needed it

[Ernie]

It is a good idea to have someone with you. I see the difference when I go to appointments with a friend and when alone.

Ernie

[morgan617]

my husband always goes to my cardiac appts as those are my worst, but definately not only, problem. he is very careful to explain to the doctors what he observes and i often find as just me said, i don't even realize i do this stuff or act this way. sometimes it's a real eye opener. but bless all those spouses out there who are towers of support and bless those few and far between doctors that really care. my doctor isn't an expert on this, but he definately cares and is worried about me. he's done a lot of research on his off time to try and help me. it sort of makes up for the ones that have patted me on the head and said, are you de[ressed debbie. oh heck no, body of a 95 year old at 49, but no big deal JERK. anyway, my pcp is great at least. morgan

[justme]

Thanks for all of the kind words. I don't think I do anything special though.

As far as for the almost dying. The three incidents I am referring to happened after she got her pacemaker and complications during the weeks following the surgery. First off, if you are planning on having a pacemake implanted, don't let this scare you. This stuff only happens in a small fraction of the cases. My wife seems to hit that small fraction on alot of different things though.

I don't remember the exact order that these happened. Following her surgery, she had a difficult time recovering. Her lungs collapsed and she also had a fluid build-up around her heart.

When they put in the chest tube, the anesthesia almost killed her. She didn't come out of it. It took about 8 people to bring her back. We warned the nurse that she was sensitive to anesthesia because she had ran into problems in the past. The nurse told the doctor, but the doctor dismissed it. She needed to have anesthesia because she was very anxious about them shoving a tube through the side of her chest into her lungs (they normally don't put you under for this).

In the process of recovering from the chest tube, she had what I would call a seizure. The nurses used the words "passed out". I think there are a lot of reasons for this, but it really doesn't matter. This again took a team of about 6 people to bring her back. It seemed like it took a lifetime, but they were able to do it.

The third one was a repeat visit to the hospital emergency room. I don't recall how this visit initially started. She showed all the classic signs of a heart attack. I mean it was unreal. I have had some minor training because of some of the volunteer work I had done in the past. Their opinion was "She has a pacemaker, she can't have a heart attack". Well, that isn't exactly true. I don't think this was officially deemed a heart attack either. Her tests came back with abnormal results. This was a night they sent us home and I think even they were thinking she wasn't going to make it.

She also had the fluid around the heart, which was life threatening at the time, but over time they were able to get it under control.

[morgan617]

gees justme, i thought i lived in podunkville. i am sorry but a pacemaker only controls to the heart rate and has nothing to do with heart attack for goodness sake. as for the tamponade, or fluid around the heart, you are right that's pretty rare. but then we are such special people.... we get to have all the complications. glad she is better and you do a lot!!! don't sell yourself short, your wife is VERY lucky to have you and i feel blessed too. i think she and i may be in a minority here. but maybe not. but it sounds like it. keep up the great job you are doing. there are special places in heaven for guys like you and hubby! morgan

[migraine]

Sorry, I didn't mean to raise such a stir with my doctor's "benign disease" statement...but it certainly does seem like a slap in the face; because we know our pain is real. Benign to me is something that is present but causes no pain or other complications. That was his opinion and I didn't want to argure with him and I'm just exhausted from explaining my pain over and over.

I think our doctors believe that we have POTS, but do not believe that POTS is a diagnosis for each of our individual symptoms. For me, migraines are the issue, so the neurologist will focus on that and the cause. My Grandmother's syncope along with her pacemaker have been classified as a cardiologist's "heart condition" even though there are a bunch of issues that seem to elude them. She has also had these mini heart attacks which technically should not happen when you have a pacemaker and don't exactly seem to test out as a heart attack?????

So what we end up with is a career of planning doctors appointments for each symptom, and that's exhausting in itself. Once I deliver this baby I am going on a quest to find a sympathetic and available doctor who is interested in researching this disease as much as myself. I'm also going to demand some standing order for drugs for my migraines; and really research products that will prevent these symptoms. It is difficult to find one drug to help something that does not counter act another drug that is helping something else.

We kind of got off the subject here, but I will definately keep my husband coming to my appointments. Even though my doctor downplayed my disease he did confirm that I had things going on, and that was helpful for my husband to hear.

I set up a canopy tent this weekend and then dragged it back to my house from 5 houses down after it blew away. Since my appointment the tent has still been standing there. My husband asked why I had not taken it down, I simply said, "I just can't do it anymore." I will have to learn to let more tents in my life sit, so I can get the help I need and have the energy to at least survive this illness during its ups and downs. I will continue to take all of your fabulous advice.