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4 days on 2days off 8 days on 3 days off 4 days and counting on

The month of January:

Jan. 1-4: Non functional with mind stabbing pain over my right eye…pain of the worst kind .

Jan. 5-6: Baseline head pain but functional enough to run a few errands

Jan. 7-15: Three days of tension migraine (at debilitating levels), 2 days classic migraine, 3 days both tension and classic migraine (very debilitating): finally did a migraine cocktail which happened to finally break the migraine cycle.

Jan. 16-18: Lots of energy, very low head pain, got a lot done (at least on my blog and on FB).

Jan. 18-23: Classic migraine (the mind numbing, stabbing pain over my right eye).  Finally went to the ER for a shot of Nubain and finally have some relief.

So if you do the math in the last 23 days I have had 5 days of mild head pain when I was functioning.  It takes a lot out of a person having so many days of head pain in a month.  Migraines sure are a bitch.  This most current migraine has kept me in my cave for four days.  I didn’t even see anyone for two full days. Thankfully I stocked my Crave Cave because it was the only food and water I had. I felt like I didn’t exist and I was in extreme pain.  This helps show a little bit how I felt. No shower for days. No brushing teeth for days. Pain for days.  Over and over and over again.   I go to MHNI on Feb. 2nd and plan on really pushing them for something…even if it means being admitted to the hospital again.

Pretty sure I could use this for a mug shot…orange shirt and everything…but my hair actually looks better that it really was 😉 ha!  Which reminds me I need to make an appointment to get my hair and nails done soon!!

Sleep Schedule

Even though this doesn’t have much to do with this post, it is something that I have been wanted to write about.  This is very different from other Migraine sufferers I know, but I am also on several medications that keep me pretty sedated: Klonopin, Trazadone, Robaxon, and Prozac.  But the debilitation is just as real…I am just sleeping for most of the time.  I feel so bad for other sufferers that I know that cannot sleep during their migraines.

Sleep schedule during a migraine:  To bed at 12:30am, wake at 1:30 pm, nap from 2:30-4:30 pm, nap from 5:30-7:00 pm and back in bed by 12:30.

Sleep during Migraine Hangover: Usually pretty exhausted but will often be awake most of the day, just sitting on the couch watching TV.

Sleep schedule during baseline or low head pain day: To bed around 2:30-3:00, wake anywhere from 7:30 am to noon depending on the day, but I often get up and get going to get things done.  I rarely nap on these days and stay up late again.  Someday when I have only had 4 hours of sleep I will take an afternoon nap, but my energy level is so high that I can’t really sleep, so I just keep on going.

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Do you have trouble with blood draws or IV starts?

Ever since I was a patient at Chelsea Hospital in the inpatient program through MHNI I have had veins that seem to collapse, create a hematoma (a solid swelling of clotted blood within the tissues), and act like brittle paper.  While I was there I had 31 needle pokes to either draw blood or start new IV’s because the previous one was hurting so bad.  I was on a medication called DHE (Dihydroergotamine) that causes vasoconstriction (the constriction of blood vessels, which increases blood pressure) and tends to be really rough on veins.

So every time I have to go the ER or have blood drawn I end up with what you see below.  The bruises on the hand don’t show up very well but boy do they hurt.  They always try the hand first and then work their way up my arm trying to find a vein and trying to find a vein that won’t collapse.    When they just can’t find a vein, even after 6 pokes…they finally call in an IV team (I had never heard of it until my last ER visit) that uses ultrasound to find a vein deep down that wouldn’t collapse.  It was so fast and easy…I wish they could always do that, but they can’t.

One of the biggest problems I have is that if I have a reason to go to the ER or have a procedure done, I am often in the middle of a migraine, so I am very dehydrated.  Hopefully having the Migraine Cave stocked with water (which has already been helpful) will make this plan more effective. But after what happened during my last ER visit (pics below) I have come up with a plan:

  

MY NEW BLOOD DRAW/IV PLAN

My plan came about accidentally really.  I was shopping at Walmart in a clearance section and came across the gloves that are show below, called Red Hot gloves.  They came with two hand warmers that you insert into the top of the hand into a little pocket.  The hothands that are in the picture are cheap replacements since they are only 1 time use.

About a half an hour before a procedure, blood draw or IV poke I plan to put these on to heat up the veins on the top of my hands.  The idea came from MHNI wear they often submerse my hand and arm into warm water and then a lab used one of the hand warmers after I told them that my veins were difficult to find.

I get so sick of the phlebotomists that just think they are going to be “the one” that gets it on the first try.  Four tries later, after not taking my advice about heat on my hands I have 4 hematomas and they have finally found a vein.

Now I can always have heat on my hands coming into the lab, hospital, ER, etc.  I don’t have to deal with the person that won’t listen to me that my hands need to be heated in order to draw blood or place an IV.  I took my health care into my own hands.

The second part of my plan is only for times when I have scheduled procedures or blood draws, this will not work when I end up in the ER.  But hydration is soooo important for blood draws and IV starts.  This last blood draw, I drank water from the time I woke until 1:00pm when I got my blood drawn.  I read that 64 oz. the day before and the day of is the most helpful amount and that excessive amounts are not necessary.


This is my new water cup for my Migraine Cave…it holds the 16oz bottles of water perfectly 🙂  And it is soooo cute!

My Plan In Summary

  1. Hand warming gloves about a half an hour before blood draw/IV start
  2. Hydration: 64 oz the day before if possible and 64 oz the day of the blood draw/IV start.

 

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ER Visit #2: Blood Patch

So the pain didn’t go away on its own…I could not stand up at all (but I could continue to lay down with no pain).  So took me in to Hayes Green Beach Hospital Emergency Room (I should have gone to Sparrow, because I don’t think these people had ever actually done a blood patch before, but the convenience won out and I paid the price).

So what is a blood patch: An epidural blood patch is a surgical procedure that uses autologous blood in order to close one or many holes in the dura mater of the spinal cord, usually as a result of a previous lumbar puncture. The procedure can be used to relieve post dural puncture headaches caused by lumbar puncture (spinal tap).

I ended up getting the blood patch. It was some of the most awful I have experienced to date.  They had me lean over simply holding onto a pillow while they not only shove a needle into my spinal column while also trying to draw blood out of my hand (which didn’t go so well).  The nurse and Dr. were so nervous it was weird.  The moment they started, the nausea hit and hit hard.  My coping mechanism for the nausea was yawning.  So now I have a needle sticking in my back, I’m extremely nauseous and every time I yawned the pain was excruciating.  As soon as they finished they did give me Zofran and that seemed to help a bit, but then the diarrhea hit and wouldn’t stop.  They finally brought in a potty chair.  During the time that I was supposed to be prostrate in bed I had to keep getting up to sit on the chair…yes to much information, but this blog is for that sort of thing…a place where I can speak freely about what really happens.  The nurses left Dan and I in the room alone with all of this happening and we had to keep calling for someone to come in and empty the chair.  The procedure, the service, and everything that occurred during this visit was horrible.  It was also one of the most embarrassing and painful visits to an ER I have ever had.

Ok enough drama for the day. I now have a Drs note that says I can’t do
anything for 48 hrs.  So off to bed I go!!!!

What a hell of a couple weeks. Not really sure how my head feels yet but it seems to be better.

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Home now and feeling some better but comfy on the couch hangin out with the fam eatin pizza.  Life is much better now smile emoticon. Thank you for thoughts and prayers over the past 2 1/2 weeks when this all started. Hoping and praying that by Monday I will be feeling good and ready to go back to work.

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Emergency Room Visit #1

I waited until super late to finally to into the Emergency Room, but I finally made it.  Thank you to my dear friend Dawn Tomlin for picking me up and taking me. The doctor that saw me in the ER was awful…basically a bully.  The entire time he spoke with me he was talking down to me.  I was so embarrassed that I was in the ER for a headache by the time he was done asking questions.

Once he established that I had never had a headache/migraine before he finally ordered a CT and a lumbar puncture plus some drugs that are supposed to help (Toradol, Depacon: which made my crotch feel like it was full of pins and needles, so weird and Zofran).  That didn’t work so then he ordered Nubain (a narcotic I had never had before and I didn’t know he was even giving me a narcotic at the time).  All of the sudden I was flying pretty high and my nose was itching a ton.   It was at that point that he did the lumbar puncture.  He had me lean over a table and told me to hold still.  I kept itching my nose the entire time and didn’t really even know what was going on which I guess is good because Lumbar Punctures really are quite painful.

CT came back normal and the pressure of the spinal fluid is good and clear.  So the doctor asked if the Nubain worked, and said otherwise he would have to admit me and they would have to do an MRI…basically he bullied me out of getting further help in a state of mind that the narcotic put me in.  All of the sudden he was writing on the chart that Nubain resolved the problem.  I told the nurse that I still had the headache/migraine, but she didn’t do anything either.  The instruction was to follow up with my family doctor.

So I made a Doctor apt for Wednesday.

 

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January 21st…the day our lives changed

I had a Dr. Apt with Dr. Avula my allergist on Jan. 21st to discuss further testing of foods and other possible allergens.  It was also my day to get my regularly scheduled allergy shot.  But because I was also seeing the doctor a different nurse did my allergy shots.  There are three possibilities that could have happened during this particular set of allergy shots: 1) the dose was just too high for my system, 2) I was given the wrong dose from the correct set of vials or 3) the next set of vials were mixed up and the dose I was given was actually 10 fold higher than I should have been given.  We will never know.  When the shots were about to be administered I asked the nurse if this was going to be my highest dose so far.  I was wondering because I had been having increasingly more swelling around the injection sites.  As soon as I asked her the question, she responded with “oops” and she put one vial down and retrieved a different one.  It was strange, but I just thought I was ask about it later.

I got the injection and then the Dr came in and we started our discussion about options. when my first sneeze came.  Throughout the conversation, I became more congested and kept trying to sneeze.  Both of my arms began to itch very badly (which normally doesn’t start happen until about 2 hours later).  I started scratching all the way up and down my arm.  No one seemed to notice anything.  By the time I checked out I was sneezing. This was about 30 minutes after the injection when I checked out.

By the time I got to the car I knew something was wrong and I took a Zyrtec to help the allergy like symptoms.  And then we went to pick up Gideon from day care about a mile from the doctors office during which time my nose started to run and my eyes were starting to burn and then I started to cough.  Josiah instantly recognized that something was wrong when I started coughing because he suffers from asthma.  So I called the doctors office and headed directly back to the office but the doctor had already left and was not answering his phone.  I sat at the office for about 5 minutes waiting to hear from the doctor or to figure out what I should do.  Instead I googled anaphylaxis and immediately left the doctors office and headed to Urgent care.  I still had not heard back from my doctor and as it turns out he had not turned his phone back on and his staff were freaking out, even his wife because they knew that he needed to get a hold of me.

In the Urgent Care, I still had to fill out forms even though I told them I was in anaphylaxis, but once they called me back they moved fairly fast.  I itched everywhere, especially on the palms of my hands and the bottoms of my feet…I even bruised the bottoms of my feet from trying to scratch them with my big toe.  I could no longer breath through my nasal passage and my air way was beginning to close off.  My face had also began to swell.  Oh and I had both boys with me through all of this.  Luckily they both had electronics and sat quietly in the corner…although they were very interested when they started giving me shots.  Dan was still at work and was on his way.

I learned a very valuable lesson from this visit to urgent care…when you are facing a life threatening situation GO TO THE ER!!!  But as soon as they had me in the back they gave me a shot of epinephrine and gave me Benedryl and Prednisone.  And then they left the room.  I was not hooked up to monitors and they had not started an IV.  In fact I was on a chair like table that I couldn’t even lay down on.  Pretty sure they should have sent me to the ER (especially since they were in the same building).  But the first shot of epinephrine didn’t work, so they had to give me another one…and soon after I could begin to breath again and the itching on my hands and feet were starting to calm down.  On the flip side the effects of the two shots of epi were taking full hold.  I was shaking everywhere, even my butt cheeks were shaking.  So weird!  And then they just let me go home and said I could drive.  Again I am pretty sure they should have sent me to the ER and a good lesson about going to the ER instead of Urgent Care for any kind of allergic reaction.  Instead of driving right away, we dropped off the script for Prednisone and went to Taco Bell for some dinner.  Once we picked up the script I was feeling a bit less shaky and decided I would just drive as carefully as I possibly could.

So we headed home having no idea what this day would lead to in the very near future.

April 17th