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Old 11-07-09, 01:27 PM
fridayschild fridayschild is offline
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first real dose of ADHD stigma--awful medical experience

I was diagnosed in June, started medication, and I must live in a bubble, because up to last week I've encountered nothing but supportive, educated people. My therapist has warned me about possible stigma, and I haven't been that concerned--I figure I've learned every way to stand up for myself already from being gay.

Last week I went to get an EKG, my psychiatrist wanted me to have one done because I'm taking concerta. My doctor's clinic scheduled an EKG and echocardiogram, even though I only requested the EKG, but I figured, ok, can't be that bad.

Getting an echocardiogram is incredibly uncomfortable and vulnerable feeling if you have large breasts. I don't recommend it. It was worse than any gynecological exam I've ever had. 35 minutes of lying on my side, turning, twisting, holding my breath until it hurt, and having the tech guy move the sensor every which way around what is a pretty damn sensitive area of my body.

As he started the test (so I'm in a hospital gown on a table) he says, "ADD at this stage in your life?" in a horribly scornful tone. I said yes but nothing else--didn't feel like arguing from that position.

During the test my heart rate got really elevated. I'm sensitive to stimuli (part of the adhd,) nervous in medical settings, was cold and physically uncomfortable, and angry at his tone. He told me my heart was up because of the medication. I said I was very uncomfortable and anxious and thought that could more likely account for it. After all, it was 4PM and I'd taken the concerta at 5:30 AM.

After the test he told me I had to see a cardiologist because of my rapid heart rate, and that I should learn to manage "this add" without "using drugs." I replied that I was taking a prescribed medication for a real condition, and if a cardiologist thought it was unsafe for me to be on a stimulant medication, I would switch to a non stimulant, but my quality of life has increased greatly from the medication. He answered, "It's bad that you are dependent on chemicals." And I said, "I disagree, and it's not for you to say." And he said, "But it's bad that you have such a rapid heart rate from these drugs."

I cried all the way home, than called my gp at the same clinic to complain. All day the next day I took my pulse, which never got above 85. And my blood pressure was normal at the end of the test, even though I was so upset.

I talked about it in therapy, and made an appointment with my gp--if she thinks I need to see a cardiologist I will, but I'm not going through that on the recommendation of a med tech. I'm worried now that my psych will not prescribe concerta anymore because of the rapid heart rate during this test. I told the clinic not to forward him the results until I've spoken with a doctor there.

I'm planning on laying it all out with my gp (whom I trust) on Monday, and even asking if she can take over prescribing. I don't like running around to specialists, don't think I need to see a psychiatrist anymore when I've been stable on concerta.

Anyway. It was a nightmare. The med tech had a narrative about me--druggie. He didn't think there was such a thing as adult ADD, so I must just be using. After that, everything I experienced was put into that narrative, and it didn't matter that I was saying I was anxious and under stress--and I was practically having a panic attack through the test.

So that was the worst experience I've had since diagnosis. Now I'm trying to get past it and make sure it doesn't make me unable to get my needs met.
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Old 11-07-09, 02:59 PM
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Re: first real dose of ADHD stigma--awful medical experience

Some medical professionals (any some people in general) are just total insensitive jerks when it comes to learning disabilities and mental illness. I've found people in hospitals and labs to have little compassion for what we experience. Thought I'd share a couple of my stories, to let you know you're not alone.

One time, I experienced what I thought was a severe asthma attack. I have an inhaler for such instances, but it didn't seem to help. I felt like I was suffocated and was losing senstation in my hands and feet. So I have my mom rush me to the urgent care center, thinking I need a nebulizer treatment (which has been the case in the past).

After checking my vitals, the doctor actually laughs at me, sitting there gasping for air and tells me it's all in my head, must be a panic attack. At that time, I had been diagnosed with a panic disorder, but largely had it under control. I wasn't experiencing any emotional "panic," just physical symptoms.

So he gave me a paper bag to breathe in and watched me cry because I felt so ridiculous thinking I had a medical issue. He asked if I took medication for my anxiety and I told him that I took Ativan, but had none on me. Instead of offering to provide a dose to alleviate the attack, he just nodded, reviewed my chart, and told me that using an inhaler and taking adhd medication was the cause of my panic. Of course, I can't stop using either of these things, which only made the panic worse.

My second experience is one I can look back on and find a bit of humor in...

I was a teacher at Head Start for awhile. One day, I accidentally amputated the tip of my finger (just the very tip, above the nail) while trying to prepare a craft project. The center nurse rushed me to the ER, bleeding everywhere and in more pain than I've ever been in before or since.

The doctor unwrapped and rewrapped my finger, while I screamed the whole time. When he left the room, I continued crying (out of pain, obviously). He came back, found me bawling, looked at my chart, and suggested in an exasperated tone "Do you need a Xanax or something to calm down?"

I don't recall how I responded, only that it included a barrage of profanity and telling the doctor he was a "condescending ...hole."

He left the room again, and returned with some Norco and a prescription for Vicodin.
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Old 11-07-09, 03:10 PM
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Re: first real dose of ADHD stigma--awful medical experience

I have gone to the hospitlal 2 0r three times for panic attacks. By the time the doctor came to see me it was gone. A paper bag woill help to stop the hyperventilation. The first thing they did to me was check my blood pressure. I assume it wasn't high. The other thig you can do is to breath through your nose normally that will reduce the panic attack.
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Old 11-07-09, 04:41 PM
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Re: first real dose of ADHD stigma--awful medical experience

Trishcan, thanks for sharing. What a nightmare.
Excel, I've had panic attacks in the past (long in the past) and at this point know how to stop them with breathing. But I wasn't being allowed to control my own breathing--I literally had to keep holding my breath for the tech to get the image right. Maybe I should've asked to stop the test, but I didn't really want to.
I wasn't at the point of a panic attack, just a very rapid heart rate--I felt like I could make it through the test ok.
It was the horrible lecture after it was over that made the experience such a nightmare. By someone who is not a doctor and has no qualifications to be assessing my medication, interpreting my tests, or anything else.
I complained and will be complaining again.
It was just insane. Of all the places I expect to get a "you shouldn't be on drugs" lecture, the doctor's office isn't one of them.
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Old 11-07-09, 06:02 PM
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Re: first real dose of ADHD stigma--awful medical experience

Sometimes I think doctors would be so much better if they had actually experienced what their patients experience. I know its never gonna be the case, but how can they be so cold toward someone having a panic attack?

Don't they know how horrific that experience is? I know they aren't all like that but god... how about some empathy and a bit of respect
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Old 11-09-09, 12:31 PM
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Re: first real dose of ADHD stigma--awful medical experience

I can't really relate to the panic attack experiences, but I can relate to being stigmatised as an adult with ADHD.

I've had everybody from my sister through to psychiatric consultants take a dismissive tone of voice with me, and announce that I probably don't need to be taking stimulant medication and I'd do far better if I 'just learned to calm down a bit'.... hmm, right okay...

The most stigma I think I recieved was from a college where I used to work in the machine shop teaching the students how to operate the machinery to a high standard of worksmanship, and once HR found out through a random drugs test I was told that I could no longer be responsible for students in the machine shop environment as I was classified as a risk due to my condition. They transferred me into a classroom based role and I left soon afterwards as it was not what I was built to do.

Also, I find the Police can take a negative view of anybody taking controlled medication whether it be stimulants or something else.
I was told in custody once that I was "inherantly immoral for falsifying symptoms in order to gain a stimulant drug and an excuse for displaying inappropriate behaviour"
I had been arrested after throwing a man to the floor after I saw him slap my mother across the face, causing her a bloodied lip and bruising. I protected her, which fair enough got me arrested and charged (charges were eventually dropped), but they didn't need to make fun of me when they found out they had to ensure I recieved my medication whilst in custody and before being interviewed etc.

I'll admit that I'm no angel, and have been in custody several times, but I can pretty much guarantee that whilst im there, they'll poke fun at me and treat me differently.

Logic
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Old 11-09-09, 01:24 PM
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Re: first real dose of ADHD stigma--awful medical experience

Fridays child, I do hope you at the least write a letter detailing your experience to whatever relevant authority is in that hospital. It may not change that persons mind but at least someone else won't have to deal with his 'advice'.


I definitely had to change pharmacy over my medication as the attitudes were not cool. I've had a Doctor laugh and ask me if I throw rocks when I asked him if he would feel comfortable treating me for my ADHD. I didn't have one at the moment to convince him.



I'm visibly ADHD for anyone who knows what to look for and lots of people 'guess' including employers and now that I know more about it I've come to realise that people hold so many misconceptions about ADHD that even when they believe that it's real, can see it, attributions of cause and how to treat it are matters of opinion and not medical expertise.
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Old 11-10-09, 01:57 AM
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Re: first real dose of ADHD stigma--awful medical experience

I should begin this post with the caveat that nothing I am posting should be construed as specific personal medical advice or replace the advice of your doctor. I am just responding as a typical forum member but I happen to be an Emergency Medicine physician by trade so I may have something worthwhile to contribute. I should also mention that I do not intend this response to hijack the discussion and rebrand it as a debate of healthcare reform but there are some issues related to that I will mention.

First of all, in response to the comments regarding the echo tech:

The person who did the echo has the title of sonograper, and has a degree called an RDMS. This degree teaches them much about anatomy as it relates to obtaining ultrasound imaging but no official medical diagnostic skills or any psychiatric training. While it is true that many experienced sonographers learn how to diagnose a number of conditions quite well along their career, this is not part of the job description.

As a result:

1) The tech would not be expected to have any more knowledge about ADHD than for instance a person working at your local carwash. Unless such comments would have bothered you coming from a carwash attendant, don't let this person get to you as best as possible as they likely know less than you.

2) In the USA, sonographers are not licensed to interpret the ultrasounds, but rather pass them on to MDs/DOs for interpretation. In some places the comments you mentioned could get one repremaneded or even fired. Ultimately the cardiologist that reads the echo makes determinations about its implications so do not fret about the sonographer's opinion if you can help it... unless the cardiologist themself perfomed the echo, which is uncommon. I hope that makes you feel better. Sounds like that one was totally out of line.

Urgent care centers are a bit differnt than Emergency Departments (EDs) in that they are essentially glorified clinics with usually primary care trained physicians staffing them. There is no formal residency for urgent care medicine at this time (although unofficial fellowships exisit). It is rare for UC centers to be staffed by Emergency Medicine trained physicians, thus what I am about to say really is not applicable for urgent care encounters but may explain the feelings of a lack of compassion during some ED visits.

In the US, nurses are limited by state law in most locations to a certain number of patients they can manage simultaneously. Typically 4 if not crtically ill, and 1-2 if critically ill. Physicians have no such caps. As a result, a typical emergency medicine physician is managing 6-20 acutely ill patients at a time. Due to the nature of the ED, the majority of these patients need some form of workup or active intervention to stabilize them or determine that no stabilzation or intervention is necessary. All the patients the doctor is seeing still have not had this determined, as if they had they would have been admitted or discharged already in most cases. Thus the physican is juggling all their acute needs as they see other patients.

Physicians must prioritize time and resources to those patients with the most acute need as appropriate to their level of illness (as best as the doc can judge) and any interventions required on the part of the physician to prevent loss of life or limb, or permanant disability. Although the symptoms of a panic attack and/or anxiety frequently overlap with those of for instance a heart attack, once the heart attack has been excluded by tests, the pt is determined to not need any of those acute interventions. Due to the nature of the healthcare beast these patients are then usually not able to be granted as much time by the physician as would often be optimal to convey compassion even if it is present because of the need to attend to ther acutely ill patients. Of course, like any profession there are also jerks in medicne, unfortunately.

Ironically, amongst physicians, those who choose to be residecy trained in Emergency Medicine have a reputation for being ADD themselves, due to the phrenetic nature of the job. I myself was misdaignsoed as other things my whole life until finally being diagnosed at age 34... 2 years after completing my EM residency. I am thus a walking stereotype. But it goes to show that unless a physician has a special interest in ADHD, even psychiatrists often don't recongnize it in adults. As a result, there is a lot of partial knowledge floating around amongst other practitioners and opinions and reactions to the diagnosis vary widely.

I would consider myself to be more sensitive to these issues than most based on my personal experience but I have to say that often I am sure that patients I have seen and diagnosed with anxiety have felt I was not compassionate enough due to the fact that I simply cannot spend 20 minutes at the bedside helping them understand the diagnosis and expressing my empathy due to the treatment needs of the other patients I am simultaneously managing. It bothers me that this is the case, but it is not something I have any control over.

I hope this diatribe increases understanding. Good luck to all. These are my impressions and opinions and are certainy not gospel.
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Old 11-10-09, 06:22 AM
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Angry Re: first real dose of ADHD stigma--awful medical experience

Oh man! That story makes me insane!!!! First of all I always get a very high heart rate when undergoing medical tests. The only time it's not high is with my trusting GP. It's called the "white coat syndrome".

The first psychiatrist I ever saw pretty much threw me out of his office when I mentioned ADD. He said it was just anxiety and since I took klonopin I should seek an addiction therapist!!!!! I was so excited for that appointment. I felt like I was finally going to start living. I'd been in such denial about my ADD. And I had written out notes and everything. I left there feeling crazy and hopeless. He let me walk out crying and didn't even offer me a Kleenex.

As far as the worst medical experience ever. About 4 years ago I had an ovarian cyst on my right ovary. My doctor wanted me to have an ultrasound because it was on the right side. (apendix). The only appt the imaging center had soon was on my birthday.

So, I'm thinking that I should get it over with so I could enjoy my birthday. Nightmare!!!!! The technician (who are NOT supposed to say a word about what they see or give any diagnosis) said...."this is not a cyst. It is very suspicious. I'm concerned this is something serious. " Then as the images of dying from ovarian cancer in a few months came rushing in, she says " I'm going to have the radiologist read this and you should hear from your doctor right away. " The look on her face was like a death sentence. I literally had fear and panic unlike anything you could ever explain. I had lost my mom to cancer. All I could think of were my children. That I would never see them walk down the isle or meet my grandchildren. Happy 35th birthday to me!

After the bi*** told me to hang tight and don't worry til I know fir sure, I walked outside and had to face my husband. We cried and tried to call my doctor and avoided all birthday calls. I had caskets flying through my head.

It was a very long horrific and most hellish day of my life. My doctor finally called late in the day (he was ****ed) with the news that it was just a cyst. It had hemmoraged. Very common.

This is getting too long but that one stupid tech ruined the next few years of my life. Something happened that day. I had panic attacks all day every day for years. I knew I was dying. Every pain was cancer. All anxiety was a heart attack. Every headache was a brain tumor. I laid in bed crying for a year.

And the Psych doc judged me for taking klonopin?????

Just wanted to share my story. If it can help anyone than something good came out if it.
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Old 11-10-09, 09:55 AM
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Re: first real dose of ADHD stigma--awful medical experience

My poor sister had already been diagnosed as bipolar and OCD when she started falling down and having a lot of weakness The Dr.s checked her out (several times during a 4 month period) but kept sending her home telling her it was just in her head (mental) and she was obviously seeking attention! Low and behold when she nearly died because she could not breath they found out she had Myasthenia Gravis. The muscles in her lungs had gotten to weak to function so she had to be put on a ventilator. This happened several times over a two year period---we nearly lost her 4 times! Had the Dr.s found the MS when she first went to see them and she hadn't been dismissed as just a "mental-case" she might have been able to start treatment earlier, avoiding so much pain and trauma. It seems once many Dr.s know you are being treated for any mental illnesses they just assume everything is all in our heads. That is scary!! It makes me wonder if we should even tell them we are being treated for mental problems!
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Old 11-10-09, 01:11 PM
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Re: first real dose of ADHD stigma--awful medical experience

I had an EKG and echocardiogram done, too. I didn't find the echo thing to be uncomfortable at all, but I don't have large breasts (or any breasts, really). I found it pretty fascinating. In your case, I can see how it could be uncomfortable. You would think they could get a female to do it for women patients.

I wasn't crazy about the way they just shaved spots on my chest for the EKG. Afterwards it looked like I had some weird disease. They could have at least done the whole thing.

It seems entirely inappropriate for the tech to be making ANY kind of comments about your medical issues or your treatment. Especially when they're uneducated about the topic.

I'd take the suggestion of someone above and contact someone at the facility where this happened. Make a complaint/suggestion about the experience you had. If nothing else, the tech involved might get some training or education about stimulants and ADHD in general.

I went recently to a different pharmacy to get the med I'm trying now (my regular pharmacy doesn't stock it). The pharmacy tech ****ed me off. She looked it up on the computer, then proclaimed "THIS IS A NARCOTIC!" quite loudly. I thought she was joking. I chuckled and said "no, it's a stimulant." (it's Focalin XR 5mg -- pretty mild.) She looked at me like some kind of addict and said "NO, THIS IS A DANGEROUS NARCOTIC. The pharmacist will have to handle this." There was a line of people, and I got a few looks from the crowd.

So I talked to the pharmacist and told her. She said yes, I heard that. I asked if the techs don't know the difference between narcotics and stimulants. She said all they know is they're on the same DEA schedule. I said well you might want to find a teaching opportunity to explain the difference. Her response: "I'm not the pharmacist in charge so I don't do that."

So I said "give me the script back, I'm going elsewhere". Then went to my regular place and just waited until they got it.

Can I ever write a short posting? arghhh
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Old 11-10-09, 01:22 PM
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Re: first real dose of ADHD stigma--awful medical experience

Also: I monitor my own pulse & BP. I had an episode of afib before I ever took any stimulants, so my Dr was reluctant for me to try stims.

I keep track of the numbers in Excel so I can get a picture of changes. Handy, if not a little obsessive.

The good news is that none of the stims have had much effect on my BP or pulse rate.
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Old 11-10-09, 04:39 PM
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Re: first real dose of ADHD stigma--awful medical experience

Thank you all for your feedback!
I went to my gp yesterday. My blood pressure was really high when the PA took it before I met with my doctor--this is a concern.
She was furious that the tech was playing doctor (her words) being a "jerk" and a "moron" and "insulting me." I laid out my concerns beyond being angry--that this would jeopordize my treatment, that I didn't want to get into a cycle of seeing specialists, that I wanted to coordinate all my medical stuff through her, even if she could take over prescribing the concerta. She said she could, but if I needed to switch medications because of my blood pressure, I would have to go back to the psychiatrist--so I'm just staying with him.
I wanted to know if I even need to go to the cardiologist, because I don't want to deal with this all. She said she'd run another EKG and we'd see from there. After the EKG, she recommended that I see him for clarity and peace of mind, especially since I'm on this medication. So I am.
As for my blood pressure, she said I can continue with the concerta if I can bring it under control with lifestyle and diet changes, if not, I'll need to try something else. (I guess strattera.)
I realized I do eat an insane amount of salt and very salty foods (olives, soy sauce, capers) Salt is my favorite taste. So there is something I can work on.

I feel more in control, though I'm not happy about having to see a cardiologist.
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Old 11-10-09, 04:43 PM
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Re: first real dose of ADHD stigma--awful medical experience

So sorry you had to go through this! Don't really have anything to add, but I know how uncomfortable those things are. Was there for 40 minutes lying at akward angles with my bits being prodded and the damn gel dried on my skin.
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Old 11-11-09, 12:14 AM
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Re: first real dose of ADHD stigma--awful medical experience

I'm glad your doc was supportive. That helps.

If salt affects your blood pressure, you might try some of the salt substitutes. I don't have a BP problem but so many friends do that I thought it might be wise to start cutting back. I rarely add salt to anything, but I also get this urge sometime for salty stuff. So I bought some stuff called Morton Lite Salt -- it's 50% salt and 50% something else. Tastes fine to me.

I also bought some low sodium soy sauce. It tastes fine to me. Since there isn't salt in it as a preservative, it has alcohol in it! But that typically evaporates quickly on hot food.

I hope it all works out.
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dx - ADHD combined, at this point. 7/2009: now w/anxiety
rx - things the Dr had me try: Wellbutrin, Strattera, methylphenidate, Adderall, Vyvanse,
other trials: SAM-e, Fish oil, Mg, 5-htp
---! I need to update this. I'll put that on the list


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