Hello Kiddos!

Apologies for my absence. I forgot I have a blog.

On Saturday, I had my 8th low dose ketamine infusion. Yes, eight this year, and I forgot to tell you!

Sawreeeeee.

I have other treatment updates I must get around to sharing. I have never felt better. Nor have I ever been more active and productive, never in my life.

What is a low dose ketamine infusion?

Guidelines are not totally flushed out, but if you are in masses of pain, you will probably be offered a ketamine dosing strategy of maybe 100 mg or more, lasting 2-4 hours, everyday or every other day for a week or two. Something like that. This is a very powerful treatment for chronic pain sufferers.

Dosing is calculated by weight, that is your body weight.

But many practitioners find low doses extremely effective. I wrote an article about my experience with low dose ketamine infusions for the Pain News Network:

How Low Dose Ketamine Has Helped Me

Since I’m not in tons of pain, I did not want to take the time or endure the discomfort or cost of many infusions at once.

Response is very individual.

I am extremely drug sensitive, having Ehlers-Danlos. Some people might not even feel a low dose. But it’s working for me.

Spacing my low dose infusions out over weeks has given me lasting and profound improvements.

What’s unpleasant about ketamine?

A lot of nausea, you can’t eat before and then there is recovery time after, not just that afternoon, but sometimes days of shifting symptoms. You might be emotional, maybe have extra pain or tiredness.

But I have found each infusion less jarring and less disruptive to my life. Yay!!

Oh, ketamine tends to be extremely constipating, for days even, so take steps ahead of time and have a plan.

Initially, I got a 35 mg infusion over one hour for my foot swelling. It was f*cking fantastic! I wait 2-3 weeks between infusions.

Ketamine is a regulator of inflammation, not a suppressor like steroids or NSAIDs. It doesn’t do weird brain-damaging stuff like antihistamines. I f*cking hate antihistamines, in case you did not notice. They make my brain fog and fatigue worse! worse! worse! And also give me terrible food cravings. Yuck. They solve nothing.

Ketamine aids healing, a much better goal than symptom suppression.

I was also hoping ketamine would reduce my remaining symptoms of central sensitization.

Yes, it has relieved central sensitization!!

Central sensitization is an over-reactive nervous system. Heightened by prolonged pain, the body comes to interpret benign stimuli (gentle touch, light, sound, smells) as excruciating. This can become profoundly disabling. It is stylish in the EDS community to call this phenomenon mast activation. But is it?

Yes, mast cells get overactive in connective tissue disorders. But I am careful not to blame everything on them. I blame little on them. I get stress rashes from stress, which seems to be the most common cause for the general population, at least. Shhhh!! This is top secret in the EDS world.

Some think the outside environment is the problem and is poisoning you, EDSer. That is very disempowering. And frightening. It sets you on a paranoid goose chase, imagining allergic reactions everywhere. Well, maybe that is not what is happening. Pursuing wrong treatment is an incredible waste of time and energy, when you could be benefiting from treatments that work.

All in all, I have had ketamine infusions ranging from 35 mg to 50 mg over an hour.

The truth is

I HATE THEM

But I have gotten used to them. They aren’t so bad.

I’m not down for a drug trip, thanks. I’d prefer a glass of wine, foie gras and excellent conversation. The ketamine experience is lonely and disorienting. It reminds me how paralyzing my fatigue used to be, which is incredibly upsetting.

But that is part of the magic of how ketamine works!

Pain hyper focuses you, without your consent, making you feel more pain, become more cranky, and stupider, because your brain has less energy and attention for anything besides pain.

Ketamine causes dissociation. No fun for me, but this seems to re-arrange the brain so it can focus more broadly. Some people really like the feeling of ketamine.

To get the most benefit from a ketamine infusion, skip benzos or propofol during. Just my opinion, not medical advice, folks. Those are brain damaging drugs. Ketamine is a brain healer. Don’t interfere. Plus, you want to experience the drug trip to help shift your focus from receiving painful stimuli.

Ketamine has been so powerful for me!

My level 1 and 2 aches have vanished. I did not know how draining they were. They seemed like nothing, after pain that made me suicidal. But they have been sucking up my brain power.

My spine sensitivity is waaaaaaaaaaay down. Yay!!

I am a happier person after each infusion.

I can be touched or handled as a normal person would. Like in medical procedures, you know, how they kinda rough you up? I’m not noticing it. I just had my thoracic MRA and all my joints x-rayed. Took hours with lots of lying in the hard MRI machine, not moving, and shoving for the x-rays. Didn’t bother me. I zoned out and relaxed without trying.

Ketamine is extremely effective for PTSD.

Pain, chronic illness and disability cause severe PTSD. We’ve all seen Philoctetes, right? The Greek tragedy about pain, chronic illness and disability by Sophocles? No? You must!

I AM WRETCHED!!!!!!!

Mr. Pennington says that Philoctetes’ agony sounds like every day of my old life. Ah, good times. Not.

Phil screams out and begs to cut off his foot, just like I used to beg for the guillotine to end my neck and head pain. That went on for 10+ years of my life. Who would think that could be healed?

Hang in there with the neck torture.

Keep trying to get strong. It can work. Strengthen your entire torso, from your thighs to the top of your neck.

Skip the crazy surgeries. You can always do them later. They are questionable, especially in the long-term. They seem to lead to . . . wait for it . . . even more spine surgeries. How is that helpful? I mean, to anyone but the neurosurgeon? I think that is the highest paid specialty, so good for them. I’m sure that does not influence the advice they give, or the active EDS patient-seeking. For sure.

Remember, pain is a brain disease.

Remember, your muscles can improve your joint function.

Why not do everything possible to get strong and heal the disease of pain before life-altering spine surgery? Maybe then you won’t need it.

I should mention . . .

I went to physical therapy 3-4 times per week during the Covid-19 shutdown. My lovely PT had plenty of time, and I needed to be do something useful.

Let me tell you how f*cking fantastic that was! Extremely productive! OMG get professional help for your joints when you can! We worked a lot on wrist stability, my foot mechanics. I even let her touch my neck and back to work on the soft tissue there. So scary! But so useful!

Finally I called my insurance and asked if I could have multiple visits in one day, so we could do different joints. They said yeah, sure.

I made a couple of videos talking about ketamine.

See them above.

Sorry for the low production value. Just don’t have time. Nor do I really care to make them any better.

I’m very busy, enjoying the last wisps of summer. Hope you did, too!