Needle phobia, about to do autonomic testing - any advice?

[js_langy]

Hi all,

First post here, so please feel free to redirect me to a different forum if this is not an okay question or the wrong place to ask.

I was diagnosed with POTS by a cardiologist a few years back, from a symptom history and a pulse and BP check when standing/lying down/walking. I saw a neurologist today to do more thorough autonomic testing/tilt table/etc just to get a better picture of what's happening. He has ordered a lot of blood work to rule out other issues, and also said there will be some blood tests during my testing to check for differences in levels (I think he said norepinephrine?) throughout the testing. On a health, and also nerdy intellectual level, I am super interested in this! and know that it's important. However, I am paralyzed by a needle phobia and often avoid medical treatment and testing because of it. I have severe panic and often I have such an intense and involuntary physical reaction that it sometimes becomes impossible for the phlebotomist to successfully draw blood (veins shrink even when super hydrated, BP plummets, near fainting, body panic overdrive, etc).

To illustrate, I have had two surgeries, each time just for IVs, they needed to give me liquid anti-anxiety medications (which just made me panic in slow-mo) and then put me completely out with gas first because it was such a problem. A phlebotomist once cried of happiness when I finally was able to get a blood test done after trying so hard with her a few times a week for nearly a month. I have tried exposure therapy, CBT, hypnosis. You name it. Xanax and adequate hydration usually gets the job done. They are my greatest source of anxiety, and I go far out of my way to avoid them.

 

The doctor and I discussed the phobia and he took it seriously, and said it would be fine for me to take an anti-anxiety medication for the general blood tests - it wouldn't affect the findings. He said not doing the blood test during the office testing would be fine, but not preferable, and if needed, a small dose of xanax might be okay. My anxiety levels are so profound that I'd assume even the idea of a needle that day would probably affect the findings as my body truly wreaks havoc on me in those moments, even with xanax.

I will be doing the prior blood tests to rule out other issues, but, in people's experience, is that information important enough for me to find a way to manage to do this in office blood testing? Is it worth doing it without the blood tests and then, if needed, go back a second time to redo it? I am more motivated than ever and want to find a way through, but I don't want to torture myself just to get a test with questionable validity.

Does anyone else struggle with this phobia and have ideas of things that have helped them get through this?

Thank you!

[Jan]

Is it possible to get a port put in the day before so when they need to draw blood the opening is already there or would having a port in your arm for a day be too much to deal with?  Not sure if it is the act of breaking the skin or the idea of a needle in your skin that sets off the anxiety. 

[js_langy]

Hm that's an interesting idea. I hadn't thought of it in those terms before, but it's definitely having something in my skin that bothers me, not just the breaking of the skin. That "type" of breaking skin is also something that bothers me. Who knows. Partially lack of control I am sure. Things where they aren't supposed to be. 

 

Thank you for the suggestion! If it were pain/that moment only, that would be a great solution. 

[shan1212]

Your doctor said forgoing the second test would be OK but not preferable, right? I guess in your case I would not do it, then.

I have a flying phobia and while I can make myself do it, my body is in such a state of panic and alarm for a long period that I have to take that into consideration when I decide whether or not I'm up to it. I have to recover not only from the effects of flying but from the adrenaline and cortisol overload. I took 8 flights this summer and fall and it never really got any better, so exposure didn't help much. I also did hypnosis which did help some.

Kudos to you for trying so many times with the phlebotomist until she could draw blood. That shows perseverance and courage. 

This is probably silly, but have you ever tried using a needle on yourself? Maybe if you were in control you could get a bit more desensitized.

[Clb75]

I have a port, and they use a needle to access it. It’s only one stick but it may still bother you. Plus it requires surgery to get it placed. It may be a solution if you need a lot of blood drawn on a regular basis, but if it’s on an infrequent basis, surgery to place it then again to remove it may be a lot to go through. 

[HangingByAThread]

If I’m not mistaken I thought I heard that Norepinephrine levels can rise if you are scared to death when having your blood drawn so I don’t know how accurate this test would be for you if you find getting blood drawn so difficult.  When I had my tilt table tests an IV was placed into my arms beforehand – sometimes it was shortly before hand and another time it was hours before (due to the time I had to wait for the test).  If you can tolerate getting an IV put in, would it be possible to ask that the IV be placed first thing in the morning and then you sit around and have your test performed hours later, after you might have a chance to calm down a bit?  I remember specifically having a hemodynamic echo and not only was it the norm to inject a radioactive tracer into the IV in certain intervals, but every once in a while blood was drawn from the IV line as well - this way the test would be accurate (since many patients flinch or have a vasovagal response from needles/seeing blood.

[js_langy]

18 minutes ago, HangingByAThread said:

If I’m not mistaken I thought I heard that Norepinephrine levels can rise if you are scared to death when having your blood drawn so I don’t know how accurate this test would be for you if you find getting blood drawn so difficult.  When I had my tilt table tests an IV was placed into my arms beforehand – sometimes it was shortly before hand and another time it was hours before (due to the time I had to wait for the test).  If you can tolerate getting an IV put in, would it be possible to ask that the IV be placed first thing in the morning and then you sit around and have your test performed hours later, after you might have a chance to calm down a bit?  I remember specifically having a hemodynamic echo and not only was it the norm to inject a radioactive tracer into the IV in certain intervals, but every once in a while blood was drawn from the IV line as well - this way the test would be accurate (since many patients flinch or have a vasovagal response from needles/seeing blood.

Thank you everyone for the info and support! I think you are right, and I'd imagine that my blood pressure and pulse would also be really abnormal, not to mention other stress hormones. I think based on this and what other folks have said, it probably isn't worth it at this point since that is so much of what they're testing for. If, as he said, it is just "preferable" and he can get enough of a picture without the blood draws, then I can start there. And maybe if that is needed at a later date I can work harder to desensitize myself over time to be able to tolerate another round with IV or whatever they need to do. He is moving very fast and gave me the blood work papers yesterday and I am already scheduled for my 3 hour testing for Monday morning, so not a lot of time to work on the needle stuff. Luckily my symptoms are generally quite manageable so I'm in no rush to get all the answers. 

 

What other sorts of things do they do during the testing? I am so interested. What info does this all give? 

 

I love the idea of an IV early on and time to adjust, but sadly IVs are even worse for me. When I woke up from my surgery and felt that there was an IV in my hand, apparently I made them take it out immediately even in my heavily sedated state, haha. Maybe worth a shot some other time less high stakes. I should make friends with a phlebotomist and just practice a bunch of times 😂

 

Thank you all!