Identifying and managing an SPS Attack

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The key SPS attacks of concern are when:

1. The dangerous ones are the ones that happen in my throat/neck or my chest/thoracic area.​

2. What you may observe: 

   1. ​I've stopped speaking:

      1. You may not know, as I might just look like I've 'glitched', zoned out, or got distracted.

      2. See a psychologist's letter on this wonderful SPS neurological presentation. This is geared to my medical team, but the same principles apply in daily life and to those around me. Also useful for you and the doctors if we end up in a medical setting.  

   2. My left eye is watering (weirdly never my right eye!)

   3. I've gone into a concentration phase and am not engaging in eye contact

   4. I'm trying to sip water to ease it

   5. I might be coughing to try to get airway clearance

   6. I am taking Ventolin

   7. I've stopped moving if walking

   8. I may also be choking on food if the muscles are constricted from spasming today or in prior days, leading to tightness

 

How you can help:

1. Calm prompting, don't assume I have it covered even if I truly look like I do :-)

2. Ask if I am having an SPS attack​ to get my attention and regain my focus

3. Sometimes I default to using my mindset to breathe it out - old techniques before I had treatment options. I can 'glitch' and don't take the best course of action. 

   1. This usually happens if I'm in an unfamiliar place, it's loud, I can't concentrate properly, or other SPS triggers cause me to "glitch".

   2. If I'm alone, I focus much better. Many of you have probably seen me walk out of a room and sort it! Or if I've been on the phone with you, I've texted you to say what's happening. 

4. I will nod if I can not speak and you ask if I am having an attack.

5. If I can not speak, this needs medical intervention.

6. Ask me to take my Ventolin first (20% of the time, it is an asthma attack! They feel the same)

7. Ask me if I should take my breakthrough tablets (clonazepam) or my Celine Dion rapid rescue drug (intranasal midazolam). ​

8. ​I have all these drugs always on me, and I can deploy them if you pass me my bag. I usually have my tan shoulder handbag or a little backpack. Sometimes Ventolin will be in my pocket. If I'm confident it is asthma, then I also have steroids. Epi-Pens don't work, so I don't carry one. 

9. Note the tablets take 30- 60 minutes to kick in.

10. With the Intranasal Drug

    1. It is a rapid anaesthetic-like drug, so I need to be put in a position so I don't fall and hit my head.

    2. I need to inject it via a kid's syringe into my nose.

    3. A safe spot is important, and I need to move to it first. Lying down is ideal but not always realistic, so maybe wedged into a booth or a corner with a wall behind me etc. 

    4. I need a water chaser as it burns the hell out of my throat. 

    5. I've never actually fallen asleep on this, but it could happen. 

11. I will choose to take the tablet if I feel it's a mild enough attack and I can manage with my mindset, water and Ventolin.

12. I must take the Intranasal if it's going too long, or I have a second one that same day. 

13. Sometimes I've been known to have SPS attacks in other parts of my body that tear or sprain muscles and bruise my body. 

    1. During these, I can speak/yelp/scream (haha) and can decide on which drug, but will need your help getting it from my bag.

    2. If it is aggressive and unrelenting (this is very obvious to those around me!), we don't bother with the tablets.

    3. But don't be shy to get my focus and ask, should I take a tablet or go straight to intranasal meds.

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IF IT BECOMES STRESSFUL OR TOO UNPREDICTABLE, CALL

PROF/DR REECE ON 0424 439 639 OR

DR HEINER ON 0409 576 270

TO HELP MANAGE AN EMERGENCY / ED / AMBULANCE EXPERIENCE.

 

GIVEN THE RARITY OF MY COMPLEX MIX OF DISEASES (PRIMARY IMMUNODEFICIENCY, ASTHMA, SPS ETC) REGULAR MEDICAL PRACTITIONERS CAN GIVE MEDICATIONS TO MAKE THE SITUATION WORSE, WHICH IS WHY WE AVOID THE HOSPITAL. 

 

I AM NEVER TO BE GIVEN KETAMINE. REFER TO OTHER ALLERGIES IN FAQ'S. 

 

PLUS, HOSPITALS HAVE ALL THE CLASSIC SPS TRIGGERS TO EXACERBATE THINGS!  

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MY SPS IS 'TECHNICALLY' UNDER THE CARE OF THE NEUROIMMUNOLOGY TEAM AND ANDREW SWAYNE AT MATER PUBLIC HOSPITAL, BRISBANE. BUT AS THEY KNOW, I'M MOSTLY SELF-MANAGED GIVEN THE RARITY, AND THEY ARE NOT ACROSS THE OTHER DISEASES COMPLICATING THINGS.