Right now, I’m lying in bed. Resting. After taking a shower. If I don’t, I’m afraid I might die. This is my life. You might think I’m exaggerating; I’m not.
People with PTSD often suffer from nightmares or night terrors related to the trauma. Sometimes they’re referred to as “nocturnal flashbacks.” For me, they can be parallel to the trauma, but they can also be symbolic. My night terrors can be anxiety producing even though they don’t make sense at all. Sometimes, in fact, more often than not, the memories of the nightmares or the night terrors, are fleeting at best. I take medication for all my MDD and PTSD related symptoms. These medications make me feel better, most of the time…
I DRIED MY HAIR
After taking a shower I felt very fatigued, so I knew something was up. Or rather…down. I pushed through anyway and I dried my hair and afterward, I seriously felt like I had just run a marathon, complete with sweat, fatigue, pounding heart, heaviness throughout my body – as if I had lead weights tied to my shoulders and arms, legs shaking, and then nearly passed out as a gray haze passed over before my eyes.
Keep in mind, that my hair is thin and fine and above my shoulders. It’s not like I have a head full of Cindy Crawford’s hair. It took maybe five minutes total to dry the wispy threads I call my hair. The blow dryer however, felt like it weighed 20 pounds. Literally, I could barely hold on to it.
This wasn't the first time it's happened and it surely won't be the last. I took my blood pressure because I knew that was the culprit.
My blood pressure dropped to 64/39. I took a photo as proof. Not that my doctor has a habit of calling me a liar, but I don’t think that even I’d believe someone who said her BP was that low and was still conscious to talk about it. And, interestingly, this isn't the lowest reading I've ever gotten.
My family doctor diagnosed me with orthostatic hypotension. Funny thing is, that I used to be hypertensive! Figure that out why dontcha! My doctor was proud of me, not because of the hypotension, but because of NO longer being hypertensive. He praised me for losing 35 pounds, and took me off all BP meds, but one: Prazosin.
Over the last couple of years however, my blood pressure has been falling rather rapidly in the mornings and recently it’s been plummeting to rather scary-low numbers. Often times it’s so low my BP cuff simply displays an error.
I take Prazosin for nightmares and night terrors, not BP, although it is an anti-hypertensive drug, it’s also used to treat nightmares and night terrors in people with PTSD.
I was on 5mg at night, (which was an increase from 2mg that was made in February 2016), but Christmas 2016, it was doubled to 10mg after episodes of screaming in my sleep – night terrors. On one occasion, I was screaming my husband, Scott's, name. It took him several minutes of wrapping his arms around me, putting some weight on my body, and saying my name over and over again before I awoke, or so he told me. Even on 10mg I still have breakthrough nightmares and night terrors. And, I have others that I just consider to be bad dreams that I may have in the past considered nightmares, but at this point it’s all relative. One person’s dream is another’s nightmare.
I wonder how many of you knew there was a medication that minimizes nightmares and night terrors.
Why Prazosin? As the story goes, the VA found that patients with PTSD, who were also on Prazosin for hypertension had fewer nightmares. I imagine studies were done and peer-reviewed literature is out there, but I haven’t looked into it. Why? Because I know it works for me, most of the time, and that’s all that matters. I’m fearful of what would happen if I were to stop taking it. And, that’s why I deal with the orthostatic hypotension.
Have I passed out? Yes.
Have I had to cancel appointments or have someone else drive me at the last minute? Yes.
Do I sometimes have to go back to bed until my BP rises and then get up slowly? Yes.
Do I take the elevator even when I only have to go up one floor? Yes.
Have I been unable to physically pick up my grandsons at times? Yes! And, it breaks my heart.
But I have fewer nightmares and night terrors and I don’t have to relive past trauma or even ongoing trauma when I’m supposed to be getting undisturbed and rejuvenating sleep – something that's vital even for someone without depression, much less someone with it.
Sleep is already hard to come by at times and the stresses of day-to-day life mean I need sleep, just like everyone else. My depression often means I either sleep all day or don’t sleep at all. I work hard to find the right balance.
TWO LITERS OF FLUID
However, that balance is slipping away from me. My blood pressure has been low before. In fact, my sister-in-law recently rescued me from a two-mile walk. Today, Scott immediately came home from work because our grandsons are staying with us and I knew I wouldn’t be able to climb the stairs to get them when they awoke. They are only 2 and 3, and generally stay in bed, calling out for ‘nana’ – that’s me – to come get them. It was 7:30 AM and Scott had only been on the job site for an hour. Thankfully, his manager was very understanding and said, “get her to the doctor immediately.”
I did go to the doctor and received two liters of IV fluids and was monitored for three hours. It turns out that Prazosin is also used to combat urinary retention. So, while I was drinking plenty of water and my urine was clear to prove it – I was also passing plenty of it as well. That was a double whammy for me because dehydration also causes low blood pressure. So, I was taking a medication that caused me to become dehydrated and lowers blood pressure to the point that my pressure is getting dangerously low, all so I can avoid reliving trauma.
I am in a lose-lose situation.
RISK BENEFIT ANALYSIS
So, after two liters of fluid, I am still lying in bed, monitoring my blood pressure, while my husband is enjoying playing with our grandsons.
Some have suggested psychotherapy, instead of medication, but I’m already in therapy 6x a month. I’ve engaged in Cognitive Processing Therapy and I’m currently in a Dialectical Behavioral Therapy group – both are forms of Cognitive Behavioral Therapy, plus I attend one-on-one sessions, and that doesn’t include meeting with my psychiatric nurse practitioner who prescribes my meds and checks my progress once every 4-6 weeks.
For awhile, the nurse practitioner had me add a little bit of sodium to my diet in the morning, hoping it would be enough for me to retain some water and therefore keep my blood pressure within normal range. How was I doing that? V8 juice.
Update: A risk benefit analysis was discussed among my providers and me. I wanted to stay on the Prazosin and hoped that I could drink enough water to carry Noah’s Ark away so that I can stay hydrated and hope the extra sodium intake could keep my blood pressure within normal range. I can’t, just can’t, live with the night terrors.
And yet, when Cassy, who is 25, asked me if there’s a chance my blood pressure could drop so low in my sleep that I wouldn’t wake up, I didn’t know how to answer her, because I knew that by ‘wouldn’t wake up’ she meant, die.
After blood pressure complications following several surgical procedures, it was decided that my Prazosin needed to be reduced by half. I now take 5 mg, with fewer extreme drops in blood pressure, but I now have more break through night terrors. Scott isn't always home to wake me from them.
What to do? What to do? Cricket will be evaluated as a potential service dog so she can wake me from those night terrors, among other things.
And, for now, when Scott's away for work? I pray. I pray hard.