Recovery #lupus #addisons

Recovering from the spinal tap has been up-and-down.

I have Addison’s Disease, which is an adrenal gland insufficiency, caused by autoimmunity. The adrenals are responsible for responding to and handling stress. Because mine don’t effectively produce cortisol to handle stress, I take replacement hydrocortisone. The amount of cortisol you need daily can change, as do daily stress factors. “Stress” refers to the obvious *regular* stress of daily living, but also encompasses excitement, getting your period, and getting sick. All of these things would cause the body to release more cortisol. Since my adrenals don’t do that, I have to take extra hydrocortisone in a stressful event. It’s a shot in the dark most of the time. There is no blood meter for cortisol. I just have to guess. If I don’t take necessary hydrocortisone, I will have what is called “Adrenal crisis” or sometimes called “addisonian crisis”. If a crisis is not treated with emergency steroid injections, it can be fatal. Most ambulances do not carry these injections. There are small charities working on this now.

Back to my spinal tap. I did not “stress dose” my hydrocortisone for this procedure. I have already been taking a stress dose to deal with the aftermath of the Rituxan treatments. I was concerned that my current stress dose could be a little too much, but I can’t get through the day without getting pre-crisis symptoms if I don’t take it. I didn’t take extra for the tap because I felt I was already taking enough “extra”.

I did well during and after the procedure, except for taking a nap after. But about 2 days later, I crashed. I had a delayed stress reaction from the spinal tap. I got really dizzy and weak, and my chest felt really heavy. Normally when I’m low on cortisol I feel like vomiting first, but I had different symptoms this time, so I didn’t recognize it right away. On top of that, I got a massive post-tap headache. I felt really, really awful.

When I realized what was going on I stress-dosed, and it definitely helped. The headache was another story, though. I’m still taking the stress-dosing day by day.

As far as spinal tap side effects go, it’s been a little unpredictable. The day of and day after did not consist of any headache at all. It made me wonder what my intracranial pressure is on any given day. My back has been pretty sore, most likely from the local anesthetic injections into the surrounding tissues. Some of the soreness traveled down to my butt and legs, which is probably just a result of those muscles compensating for my lower back. The headache hit me Sunday night, and it was really bad, and atypical of my usual daily headaches. I took imitrex and it helped, but curbing the adrenal symptoms was difficult to deal with at the same time. I still get headaches and dizziness, so I’m wearing my back brace intermittently to keep some pressure on the area. The nurse said applying pressure could help.

The puncture site is nice and clean. I left the dressing on for 2 days. I don’t have any swelling redness, or pain when I touch it. It is slightly bruised from the injections, which is probably why I’m sore. When I bend over it’s sore and tight in that area. All to be expected.

I gave lying flat on my back a try for the headaches, per the nurse’s suggestion, but it doesn’t help me. My problem is that lying flat on my back on a good day would give me a headache anyway, so it’s not going to alleviate one I already have. It just seemed to make it worse. Don’t rule it out for yourself though, it really does help other people, post-tap.

Since I get chronic headaches anyway, It’s kind of hard to tell sometimes if it’s a tap headache or a regular one.

Overall, it’s been a little rocky, but most importantly, I have no signs of infection.



  1. I am such a chicken I stress dose for everything. I figure the worst thing that can happen is that I will be awake for days. Do you have an emergency injection that you can use if things get bad? Hoping everyday you feel better.

    • Thank you ^_^ I guess I try to stress dose sparingly, but with the Rituxan I’ve been on an extra 10mg HC for a few months. I just can’t get through the day without it or else I want to vomit. It seems like if I don’t take it my lupus gets angry too. I guess I’ve done it sparingly because every doctor that isn’t an endo is like STEROIDS ARE BAD MMK? but really HC is mild compared to most steroids, and they can’t seem to wrap their head around the ‘it’s a replacement dose” thing. Anyhoo, I don’t have an injection kit, so far my endo doesn’t think it’s necessary, and it really hasn’t been necessary because I only seem to have to take an extra 5-10mg hc orally to correct the low cortisol symptoms. I know my insufficiency is a little different than most people with primary, I remember a doctor saying I have “the other deficiency” but I can’t remember what he meant by that. But it seems like even though I have to stress dose and everything, I don’t have emergency situations the way other people do. I’ve only had one crisis in 9 years and it was because I had a really bad virus that put me in the hospital, and probably contributed to the awakening of my lupus. If I ever do have an emergency, the ER doc here has addison’s too, so I know she won’t fool around, which is nice to not have to worry about. I still wonder about having a kit though, especially if I decide to go on a plane or something.

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