Saturday, September 4, 2010

A Hundred Miles Per Hour

Prednisone High

I'm a fast talker.  I grew up in Northwest Missouri and I guess we all had lots to say and little time to say it in. We were all fast talkers up there, you had to compete to be heard.  I now live in Southwest Missouri and they are more southern in accent and are slower talkers with softer voices.  Being a fast talker makes you seem pushy and agressive so I have learned over the last 20 years to pace myself.

On prednisone I seem to loose all control over verbal speed.  I am talking at 100 miles per hour, super animated, and then all of a sudden I crash and burn, drained of energy until my next day's dose. 

I have a Minnie Mouse annoying voice and depending on whether my angioedema affected my vocal cords too much I either drop down to a husky Marlene Dietrich range or accelerate to Spongebob Squarepants squeakiness.  Today I was definitely Spongebob.
I have trouble sleeping anyway and prednisone makes it even worse. Had an hour and a half of sleep last night, came home a little early from work because the energy all burned out of me at around 3:30.  Wasn't able to rest but at least the lip swelling and the sinus swelling have gone down.  My ears and behind the ears are still not completely angioedema free, but hopefully tomorrow's dose of prednisone will calm it down.  I'm still itchy but its much better than it was.  The Headache is not happy today, but that is right on schedule so I am hoping my antihistamine triatholon I will be doing tonight will help with the added ouchiness.

I am very very tired tonight (second day in a row with very little sleep!) so I am hoping the antihistimines will help send me to dream land.  I'm not so nervous about having my ability to breathe stopped while I am sleeping tonight.  I have gone to bed and woken up in the morning completely covered with hives, so I am always afraid the angioedema might get worse at night also with no way to wake up and use my epipens.  I get a little wheezy and it just ratchets up the old anxiety meter that prednisone gives me anyway.    My blood sugar is running high, but not too badly high, it should drop as I drop the dosage of predinsone.  Maybe if I take the cyclosporin it won't be as bad.

Tuesday I will be flying to Arizona and staying for a few days and I desparately want this episode of hives to be almost over if not completely over.  Eating out is pure misery  when you don't know what is going to start up The Hives, and to stay alert for the clients I can't take as many antihistimines as I really need to do.  Oh well.  Hoping maybe the icky gastrocrom will have kicked in by then!

Hoping everyone has a great Labor Day Weekend!  Hope some of you are actually planning to do something fun! FUN! "F is for Friends that do stuff together, U is for You and me, N is for Anywhere and Anytime at all Down here in the Deep Blue Sea"  Spongebob wisdom for us all, although I have been a bit Planktonish this week.


  1. Roger has started back on his Prednisone this week, taking 4 pills a day for a month, then 3 a month and then 2. It's going to be a very long 3 months. He is grouchy and his arms look like I have beat him from the bruising. Hang in there and I hope you have a great weekend.

  2. Ness: Glad I don't have such a loooong taper, but have it in the past. I become full blown Grumpy Bear when that happens too! I also eneded up on insulin for awhile the last long period a couple of years ago and gained betwen 29 -36 lbs. I was already short and round - with the extra weight (which is finally off) I was like Spoungegirl Roundpants - or the Bluebery girl off Willy Wonka.....

    Hope the prednison does its work fro Roger! I bruise terribly with it too, unfortunately prednisone does do the job its desgined for - it helps you keep your body from doing its worst for a while!

  3. Hope you were able to get a good night's sleep. Not sleeping well just makes everything else so much harder to handle.

    By the way I awarded you a One Lovely Blogger Award!

  4. Thanks Diana Lee for the Award. I will check out the other blogs you had listed - you are one connected lady!!!

    No sleep probably tonight but I step down the prednisone tomorrow so I am in hopes I can rest then. But I'm still super fast today!!! Woo Hoo! Woo Hoo!! :) Feel like Daffy Duck today.

  5. I was watching "Mystery Diagnois" the other night and the woman ended up having Angioedema. What a scary thing to have!

    Also, do you find your antihistamines actually help decrease your migraine pain? I have taken the reglan/benedryl combo before but was jumping out of my skin. I take phenergan for nausea once in a while too, but haven't noticed a decrease in pain with that. What do you take again???

  6. Jessica: The scary part of angioedema is once you've had a problem breathing then it's very hard not to panic when it happens the next time. This time I swelled rapidly enough it broke the skin along my lips about every half inch - the advantage of being old is when the swelling backs down they just look like part of the wrinkles!

    I could not do the reglan (it makes me nervous) but I use either Vistaril (which doesn't make me want to move as much as benedryl) or benedryl 25 mg with phenergan 25 mg at the same time. Another lady I know does compazine and benedryl. I then repeat in 4 hours or sooner depending on the pain levels. Both combos are sedating, and also seem to help with the headpain. I have one combo of this that was formulated at a compounding pharmacy to be absorbed through the skin in case I am having trouble holding down anything or just to bypass the digestive system, plus I have pills and suppositories.

    It works best for me with I do bypass my stomach. I try to watch the benedryl because you can build up a tolerance so I switch between vistaril and benedryl. This combo was presribed by the headache specialist that diagnosed me with HC in Kansas City.

    For some reason, when I am hospitalized for pancreatitis I have a great deal of trouble getting a hospitalist to prescribe this. They will give me all kinds of pain killers that DON't work for the head pain (but work for the pancreatitis) but tell me they just won't prescribe this. It is then left to the poor floor nurses after hours of trying to help me in extreme agony of headpain and vomiting to convince the doctor to prescribe what I requested.

    At home I take it as proactively as possible. My new headache specialist realized there is a daily pattern and every 4day pattern to my headaches and suggested I take this on a real schedule (at x hours and every x days) BEFORE I feel the pain. It has helped because I get in pain trouble before I realize it. You have to take the drugs as a combo - they are old style antihistimines and potentiate each other.

    I have dilaudid as my rescue medication (as when I was stuck on the airplane) but it only takes a slight edge off the pain once I get to that level, about like taking an aspirin for a migraine.

  7. PS Jessica just want to make sure you know I have hemicrania continua now, but for years had chronic migraines of the common or non-aura variety. These were related to my hormonal cycles and once I had a hysterectomy disappeared for a few years. Then I got The Headache, which some doctors think is mixed with cluster variation or still the occassional migraine.

  8. Thanks for all the info! My diagnosis at this time is Migraine with Aura and Occipital Neuralgia. But who knows if that'll change with the next Specialist. Oh and also what my dr has referred to as "Transformed Migraine." Either way...I have a headache everyday. I can't imagine taking 25 mgs of Phenergan with 25 mgs of Benedryl! But I was taking 50-100mg of Demerol with I guess it can't be worse. Right now my rescue meds for pain are the new Sumavel DosePro injectables and Norco. Neither seem to be greatly effective!

  9. Hope the sumatriptan helps, triptans only worked for a few hours for me with The Headache, but it was a few hours of relief! You will find the magic combo some day that brings it all to a halt.

    My favorite diagnosis was intractable migraine. Intractable was right!!! HC is 24/7 nonstop headache, no relief just variation in pain, which is why I am so glad for the occipital stimulator. Indomethacin is the only effective everyday medication for HC, and I couldn't take that long term due to side effects.