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My Current Condition Cheat Sheet

My Current Condition Cheat Sheet

For Family & Friends 🙂

 

The last few months have had its ups and downs as I’m sure of all of us have had in our own way. For me it’s always been surrounding health or my ‘condition’ so I thought I’d put together a bit of a ‘cheat sheet’ around the info and research that’s helped me understand all of this and hopefully will help you if you have the same or something similar. It’s confusing, unfamiliar, and I am always learning. I thank you for learning with me and your sensitivity.

 

Many people ask me what I’ve had and I’ve explained it in a roundabout way, somewhat general with some blogs posted (like the ‘The Invisible Visitor’) here and there, so I thought I might just get straight to it for what’s currently going on as my Doctor explained to me…

 

Firstly, introductions:

 

Autoimmune conditions like mine occur when abnormal antibody attack white blood cells, which attach vessel walls and cause inflammation and destruction of the vessel wall. In a nutshell your own immune system is attacking itself.

I have what they call…

Polyarteritis Nodosa involved Systemic & Leukocytoclastic Vasculitis

It’s bit of a mouthful but basically it’s the inflammation of my blood vessels throughout my body which manifests as arthritis (stiff joints that can be hot to touch, red, immobile for periods of time) and also nodules or ‘lumps’ as I tend to call them. Earlier on, it was more obvious in my extremities, trunk and legs – they looked like bruises that would last for weeks. It was a painful time. But I’ve learned how to cope and live a lifestyle that doesn’t trigger them as much as they did before.

This is where it gets a little more complicated. My condition sort of evolved. Most recently in the past couple of years the inflammation has spread its locations and ‘flare ups’ (aka episodes that sort of come out of nowhere) occur also in my brain’s blood vessels which cause seizures.

The kind of seizures I have can be called complex partial, focal, and/or temporal lobe seizures. Patients seem to be “out of touch,” “out of it,” or “staring into space” during these seizures. Patients with complex partial seizures may or may not remember any or all of the symptoms or events during the seizure.

 

My seizure symptoms vary including:

  • forced turning of the eyes/changes in vision/temporary blindness (which can last from a couple of hours to a few days)
  • extreme dizziness/vertigo (You know how people talk about the 6th sense? No, I’m not talking about seeing ghosts, I mean that sense that tells you where you are in space time – bear with me I did include hallucination as a sign but this isn’t it – sort of like your perception – how far the chair is from you, are you standing up or sitting down – yeah that right there, well I feel like I lose that sense – damn it I actually know there’s a term for it but I can’t for the life of me remember it right now, will get back to you on that one – perhaps spatial perception? cognition?)
  • changes in mood or emotion (like in the same second, crying to laughing hysterically)
  • nausea accompanied/followed by extreme vomitting
  • pain at the back of the head behind the ears (well for me it’s always there)I usually don’t remember what happened only the feelings remain – and I’d imagine it feels like waking up after the worse hang over of your life and someone bashed the back of your head with a baseball bat (too imaginative? maybe not…)
  • numbness/crawling sensations
  • memory loss/blackout spells (periods of time lost from memory)/reverts to past childlike behaviour, and/or hallucinations
  • flushed face/extreme sweating
  • rapid heart/pulse

 

What to do if I have a seizure when I’m with you:

  • Stay calm (I know it’s scary but you can do it)
  • Call Tom (lol…but I’m actual quite serious, call him)
  • Remember the actual seizure itself doesn’t last that long only 2-3 minutes, it may take an hour or so for recovery though and I will most probably be out of it, we can recount the random funny or weird things I say later together lol
  • I will look exhausted and won’t have energy to sit up and will lose control of my muscles/tongue also. Put me in a recovery position – where I need to lie on the side of my body. Do not attempt to make me sit up or lie flat on my back.
  • I do not have shakes/convulsions like other seizures you may have witnessed, which is why it is called a complex partial seizure not a grand mal (that my husband has as part of his epilepsy)
  • They end naturally, except in rare cases the brain has its own way of bringing the seizure safely to an end after a minute or so
  • If extreme vomitting keeps going for more that 30minutes – please bring me to the hospital. I have had 4 days before non-stop vomitting – was absolutely horrible, the hospital might not be able to stop the vomitting but its safer to be close by as there are sometime lasting effects from these seizures and one must also be cautious with things that we can’t really understand. I haven’t had a seizure the same way twice if you know what I mean? Only from experience, so far I’ve had about 8; 4 more serious, and 4 which were fine that I could sleep off at home.
  • Remember you cannot stop them. In an emergency, doctors may use drugs to bring a lengthy, non-stop seizure to an end. However, the average person should wait for the seizure to run its course and try to protect the person from harm while consciousness is clouded.
  • Usually when I’m coming out of one, I go crazy for bananas. Don’t ask me why lol I just do. Family and friends tell me I say “I love bananas” alot lol and eat them really slow like they’re the best thing since chocolate!
  • Sometimes I have relapses, so it’s best to let me rest and get home to bed after an initial one has occurred.

 

Medicines & Treatment:

A lot of people have been confused with how my medications aka treatment works. While symptoms may mimic or seem similar to a complicated migraine or other autoimmune conditions, we have found that traditional pain killers, antidepressants (that are used to treat migraines) do not work on me, this is because it does not treat the root cause – which is the vasculitis which causes the seizures. Its important to also know what medicines I take if in case you are with me when I have a flare up and someone may ask you also since I wouldn’t be able to answer.

I have been prescribed immunosuppresive medicine that I need to take over long periods in order to change or as they call them DMARDs (disease modifying anti-rheumatic drugs) and corticosteroids which are anti-inflammatory. So while these might not have an effect on you for a headache or pain relief, on me they do all the difference. These include Imuran (azathiproine) and Norgesic or Celebrex (Celecoxib) an anti-inflammatory. They aren’t for the seizures but the overall autoimmune condition itself.

For seizure activity maintenance I take Trileptal or Endep (switching over every few weeks/months) .

In case of Emergency

Stugeron Forte 75mg (regain balance, anti motion sickness)

Prazole (anti-emetic)

Betahistine 16mg (anti-vertigo)

Arcoxia 90mg (pain relief)

 

The main, consistent medicine I am currently taking is Prednisone, which is raised to 50mg everytime I have a ‘flare up’, ‘episode’ aka ‘trip to the hospital’ and then tapered until I’m at the maintenance dosage of 5-15mg.

There’s a lot of confusion over corticosteroids, mostly because the word ‘steroids’ is in the word. Corticosteroids mimic the effects of hormones your body produces naturally in your adrenal glands, which sit on top of your kidneys. When prescribed in doses that exceed your body’s usual levels, corticosteroids suppress inflammation. This can reduce the signs and symptoms of inflammatory conditions, such as arthritis and vasculitis-induced seizures. Corticosteroids also suppress your immune system, which can help control conditions in which your immune system mistakenly attacks its own tissues. For more info about the difference between anabolic steroids (the one you may be more familiar with) and corticosteroids, read my other blog post about it here.

Thanks for reading and I hope this has helped with your understanding with all of it. Gah a cheat sheet! This is me cutting down lol. Hugs xo

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