After a visit to the emergency room yesterday and my doctor this morning regarding heart problems and more, everyone was agreed on one thing: That I needed a full series of blood tests, and soon. However, what no one had yet faced seriously was the one thing which prevented that bloodwork from being taken: namely that I suffer from what many would consider an extreme case of Trypanophobia; a recognized condition in the DSM IV, but more commonly known as “Needle Phobia.”
The real problem is athough 10% of the population suffer from some aspect of Needle Phobia, medical practitioners rarely take it seriously, are never trained to deal with it and do not have the adequate medical equipment or procedures available to treat someone with it. My doctor (or rather my soon to be ex-doctor) after 12 months of repeatedly telling him my severity of Trypanophobia and the two ways I had found of overcoming it; basically did the old, “You just don’t want to have a blood test so buck up and don’t come back to my office until you get that bloodwork done.”
That’s an attitude I run into a lot, and it is stupid. You know why? Because Needle Phobia kills. Dr. James G. Hamilton, the first doctor to extensively research Needle Phobia in peer reviewed journals did so because his own father was one of the 23 medically reported deaths from just ONE of the ways needle phobics can die from getting a needle. His father went in for a routine blood test and suffered the most common Needle Phobic response, a rapid drop of blood pressure (these are people who often faint) which sent him into cardiac arrest. Half of all needle phobics fall into this category. I don’t (wish I did). Hamilton has recorded 63 different symptoms which can occur with needle phobia including: "transient psychosis, combativeness, random motor movements, rolling eyeballs, involuntary loss of bowel or bladder control, seizures, clenching of the jaw muscles, loss of responsiveness and transient coma."
There are however hundreds if not thousands of deaths or permanent injuries from the other three types of Needle Phobia, primarily because in a severe case, treatment will always be avoided all together (including such things as dying rather than take an insulin injection). Hamilton with Lamb interviewed 1500 people with needle phobias, finding that, instead of “bucking up” many people would simply go into extreme fight or flight responses including: "the woman who refused to have a Cesarean section because she didn't want the injected anesthesia; the man who jumped out of a second-story window at a hospital in Knoxville, Tenn., rather than have blood drawn for testing; the patient who tried to punch the nurse who was preparing to give him a shot, ran outside and swung a branch at the pursuing nurse until he passed out. He could remember none of this when he came to a few minutes later."
There are four types of Needle Phobia: Vaso-Vagal (5% of population) which is a passive response in which blood pressure drops, sometimes to lethal levels. This however is the easiest of the types to overcome. The second is known as Associative (3% of pop) in which the approaching procedure produces abnormal anxiety and is usually created by a bad needle experience. This can be helped by different forms of therapy but it can also be created at any age with one very bad experience (I know a person who developed it after three nurses tried 16 times to put in an IV line). Resistive (2% of the population) is the third, which is characterized by high blood pressure, adrenaline and a “fight or flight” response. The most important aspect to treating this type is to make the patient feel IN CONTROL and build trust. The fourth kind is Hyperalgesic (1% of the population) in which due to inherited pain sensitivity, needles are excruciating painful for these people. This can be overcome with using different anesthetics including topical and oral. There is also an associated disorder in which one is fearful of ALL invasive procedures. There is also “Vicarious Needle Phobia” where a person can be fine having a needle done on them, but will sympathetically respond when it is done to a loved one (like fainting). As for needle phobia, some research shows it is heredity, some an acquired phobia, some research suggests a combination of the two.
Unfortunately, my needle phobia combines the three rarest types along with an invasive phobia. Everyone has different pain threshold. Some people, like my father, can have dental surgery without an anesthetic or drive a bus for eight hours while having an infected internal organ (he drove his bus to the hospital, told the passengers another driver would be along soon, and then was rushed by the ER team to immediate emergency surgery). I am the other extreme. All of my long term GP’s have stated that I have the lowest pain threshold they have EVER encountered and am acutely sensitive to whatever goes on inside my body. What that means in the case of needles, for example, is that if a doctor needs three vials of blood, once the needle is inside of me, I am usually restrained and screaming every time he attaches another vial from the pain of the needle moving inside my vein. That is if with my and Linda’s help he gets past the “fight or flight” response because I have dealt enough with the Associative fear to actually make it inside a room where blood can be taken.
I have worked many times over the years to try and find a way to deal with my needle phobia. As you may have noticed from some of my other blogs, I am not a person who likes giving in to anything (even gravity, damn you, I WILL fly!). But from a few early experiences I knew that once a needle enters the room, Beth is no longer in the building. Instead there is a bundle of complete and irrational terror which will do anything to escape. When I was in second grade my friend at the desk next to me showed me his new clickable pencil shaped like a syringe. Two seconds and several desks knocked over later, my screams of terror convinced him (and the teacher) not to ever bring that pencil to school again. Until recently, I would try every few years several times with a “new therapy” to get a blood test. Nothing ever worked. One of the major problems was that my fight or flight reaction was so severe that almost no amount of medication would show a noticeable effect.
Things changed after I moved to Britain and found a doctor (Dr. E), an extraordinary man, who agreed that as long as I would keep trying, we would find a way to get a blood sample. He like virtually every health professional before and since had genuinely never seen anything like me (When you are screaming blue murder, crying, begging, your body arched backward off the bed while throwing off five grown individuals who are trying to hold you down because you are “trying” to restrain youself and get this blood test, medical personnel tend to stare, blink a lot and go, “Ohhhhh, you have a needle PHOBIA!”). After two failed attempts in his office he decided the most important thing was to prove to ourselves that it COULD be done. The plan was he gave Linda (my partner) pills to knock me out completely, then she would call him, he would come to our house and without a tourniquet take a blood sample, all while I remained unconscious. Well, we took his pills, along with some valium and washed it down with liquor and I was out like a light. He arrived, Linda told him what I had taken, he muttered something dosages and getting arrested and all went well until the needle entered my arm. The pain shot me awake with a scream of “I can feel it!” Linda, already anticipating this possibility was across me, holding me down while I screamed. He got the blood sample, I fell back into unconsciousness and that was the first time in 14 years of trying that I had gotten a blood test. After knowing it WAS possible, I began to get regular blood tests from him, eventually working out a protocol where I would have 20 mg of diazepam (valium), Linda would hold my arm and stand beside me, I would listen to my music on the headphones, use a topical anesthetic on my arm. When ready I would count down, then give the nod to Linda and the doctor, completely unseen and sometimes unfelt, would draw the blood. And I started to clear up a lifetime backlog of surgeries, dental work and other medical procedures.
Of course, every time we went for a procedure, we would explain to the medical staff at that location all over again, be told to “suck it up” or, “everything will be fine” or “We know all about people with needle phobia” only to arrive to have them give me 10 mg of diazepam and think that was going to solve everything. Luckily to Dr. E and Linda, we were well stocked. With one specialist, I had to go twice for a procedure which required me to go under, as depending on what was found, it could take multiple hours. Only they couldn’t get me sedated enough to start the anesthetic. In situations like this Linda ends up taking charge as she tells doctors and nurses how to proceed. “Give her these” she said, giving them more diazepam; having already discussed possible lethal doses with Dr. E. We went up to 60 mg before I could be restrained enough for the anesthetic, then my body overcame the anesthetic and woke up DURING the procedure. The next time I had to go in there, they must have doubled or quadrupled the dosage: they took it seriously, I was out like a light and there was no problem.
Thanks to the one anesthesiologist, who with advance notice, actually researched the subject, and ensured that I got a Teflon IV injection tube: no needle. And she used pills AND nitrous oxide before trying to inject me. Often Needle Phobics are the people who either invent or understand how to use technology to help their problem which to them is life threatening. Dr. Keith Lamb, a co-author on a book about Needle Phobia with expert Dr. James Hamilton is himself a needle phobic. In 2004 he twisted and tore his knee but was unable to get it operated on for three months until he could find an anesthesiologist who would work with his needle phobia. The needle came into use in 1853 but now it is slowly getting the boot. Thanks to Pfizer, there is inhalable insulin. Mark Allen has invented a “micro-needle” the width of only two hairs. Air injection, patches and ultrasound are other ways that are starting to avoid the need for needles, at least in delivering medication. There is not yet another way of getting blood.
Ever since my episode at the Battle of Seattle, the need for me to get extensive medical tests has growing immediate. However, my doctor, though outwardly sympatric, had still not acted to find out if any one, including himself, was willing to work with a needle phobic patient since the heart/collapsing problem was first reported to him four weeks ago. I had another “incident” the day after a fencing workout last week and Monday, after fencing, noticed that my heart rate was not going down. Hours after fencing, when I went to bed, with sedatives to slow my heart, it was still beating at 130 beats per minute (my resting heart rate should be 55-65, a slow jog should be about 130). Tuesday morning, it was still over 110 beats per minute. I called a medical help line and they said to go into emergency. At emergency 18 hours after fencing, my heart rate was still over 100. However, it was stable and as I was seeing my doctor this morning, it was decided he should do the referrals to heart specialists. Thus full circle, I am back this morning facing my doctor who tells me, “You are starting to annoy me.”, refers to my competitive fencing as “that lifestyle choice”, tells me not to fence, then tells me that I should try repeat the experience (passing out during fencing) so ER can “record the experience before handing me the forms to go to a lab with the message: don’t come back till it is done (Protocol for dealing with a person suffering from needle phobia includes having a crash cart nearby in case of arrest – I have never seen this along with any other of the protocols for needle phobia ever followed).
I am now freaked and confused, since going hours at a time with 130 beats per minute worries the ER, but not my doctor. And until I get the blood tests, my non Dr. E (new doctor here in Canada) will not send me on for a holter, echo or other heart tests. Enter Linda, wonder woman, who in 20 minutes on the phone finds a woman in a pediatric (Childrens) outpatient unit where people HAVE dealt with needle phobia, they will do the test and today, for some reason, the waiting room is empty. We grab a ride out to the hospital, having slathered topical anesthetic on my arm (it’s called EMLA, I believe God made it just for me) and 25 mg of diazepam in my blood.
We are soon ushered into a room by a no nonsense female nurse/technician with an eastern European accent who has probably a trail of terrified kids in her wake. Actually being in the room with a needle has put me into shock and I am curled up on the bed teeth chattering. “Look at you! You are worse than the children” The woman tells me leaning over. “Here, you want your teddy bear?” She asks very sarcastically, offering me a stuffed toy. This would be very emotionally painful if I hadn’t already heard the likes a few dozen times before (it was a woman like her, who tried to take a shortcut by repeatedly attempting to put an IV into my hand that regressed about 2 years of Dr. E’s work – my screams were heard through the entire floor of the hospital. She never got it in). I rouse myself from my panic to bat the stuff toy away and say to her, “Look at you, you are incredibly condescending.” She left with a huff and a REAL professional came in, Nurse D. Nurse D was patient, and calm and worked with me through the various stages, including where I needed to have her just by me so I can try to relax and trust her, that she wouldn’t try to force a needle into me while I was still (which is often attempted). She had a special ultra small Teflon needle and tube system which meant once in, the tube wouldn’t move as she changed vials, which meant I wouldn’t be able to feel it once it had gone in. At one point Nurse D said to Linda, “Maybe next time she could have a valium before coming in to calm her down.” Linda dryly replied, “She’s had five.”
“Oh? Oh!!!” (they start to “get it”)
Meanwhile the eastern European nurse had gotten impatient, decided to try and speed things up by coming bac, grabbing my wrist and holding it down. I am getting blood taken from my “Epee Arm” so I lift her with ease which terrifies her and she leaves again. (Linda kept saying, “Just relax, she won’t come back” – afterward she told me when I resisted, my veins disappeared entirely as my tendons and muscles rippled against the skin). Nurse D is standing there with her kit. I am listening to my music and I start the countdown, gripping my other hand into a fist as tears start trickling down my cheeks. I am determined to do this, but Oh God, I wish, I wish I didn’t have to. I count down from 10 and then tell Linda, Yes. And Nurse D starts to work. I am holding my body as stiff as a board and screaming, “Yes”, “Yes”, “Yes”, hanging on as long as I can (about 30 seconds) before I can’t take it anymore and am wailing and crying and begging them to take it, oh please, take it out. And then it is done. I am sobbing and thanking Nurse D. And she promises that she will do ALL my bloodwork in the future. The whole episode took 15-20 minutes. It was, Linda and I agreed, a medium experience. Not the best, but certainly not the worse. Somewhere to start. And now, I know, I can get bloodwork done in Canada (we were discussing having to fly back to the UK to get Dr. E to go it).
Since most people in the medical field don’t have it and deal with needles all the time, people like me are un-understandable. This is because people as bad as me never go to a hospital. I have been in large cities where I was the first extreme needle phobic person EVER that any anesthesiologist has seen or worked with or even heard about. Most surgeons, specialists or doctors come back and say, “Knowing what I know now, I never would have believed (X prodedure) would have been possible.” (and then they go over and thank Linda; rightly so).
For those who have not met someone with needle phobia or cannot imagine it, I hope this helps. If you cannot and think me "a wimp", let me put it this way: I have had a man hold a loaded gun on me, I have fallen off a cliff and ripped my leg open to the bone, I have been in a car skidding out of control into a intersection on a red light, I have faced what I thought was my imminent death, I have been in a car where the driver drove into oncoming traffic, and I have been lost and alone at night in sub zero weather as it snowed without provisions and I have never once come close to the terror I get from being in a room with a needle or that moment I tell Linda “Yes.” Trypanophobia really exists, so spread the word, particularly if you are in the medical field.
14 hours ago