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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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Several Good Days/Barometric Pressure

In a previous post I thought that the burst of energy might be a precursor to a migraine, because that seemed to have happened before the previous two migraines.  But this time it wasn’t the case. which is good news for me really.  I have had three days in a row with functional head pain and lots of energy.  In fact I was up until 4:30am last night and awake at 7:30am…no nap!!  This is a big deal.  I am a bit tired, but my head won’t calm down…I feel like the energizer bunny, hence the Migraine Cave being created in the matter of 3 days.

Things that have changed in the past 3 days:

  1. The new glasses: Theraspecs Website.  I have been wearing them at all times both inside and outside.
  2. I have stayed well hydrated (which was very helpful when I got a blood draw for allergy testing today).
  3. I have not spent all day in bed.  I have been out and about, visiting with friends, shopping, etc.  It has been a good 3 days.

I have also been watching the barometric pressure and feel spikes in my head pain when the pressure changes.  But so far it hasn’t gone into a full blown migraine or a debilitating NDPH.  There have been moments throughout all three days where the pain spikes for a half an hour or an hour here and there but I can almost always trace it to a drop in Barometric pressure.

A great article that my mom found about how Barometric can scientifically effect or trigger migraines.

Barometric Pressure in Relation to Migraines

My mom also found a great app for my phone that allows me to track 48 hours of Barometric pressure.  It is called Pressur but you can do a search for Barometric pressure and it should come up.  I paid the $1.98 to upgrade so that I do have the 48hrs.  The free one comes with a 12 graph.

  

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My Migraine Cave is Complete

My Migraine Cave

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The idea behind the migraine cave did not come from me. In fact I used this blog post:  Migraine Cave. Her list was very complete and it made sense to me so I went with it!!!!

1. Room-darkening thermal drapes block out light even on the brightest days.  Check!

So far so good. But the real test will be during my next migraine. 

2. Dimmers on your lights help you gradually adjust to light as you begin to recover.  Check!

I just use a small and dim light 15watt

3. A wide variety of pillows help to prop you up when you are tired of lying flat but not ready to sit up on your own yet. Check!

I have lots of pillows. In fact I got two new body pillows for Christmas. 

4. A small refrigerator with freezer can store ice packs, water bottles, healthy snacks, and medications that require refrigeration. Check!

 I bought the mini fridge on a virtual sale on FB for $30. Very excited that it fit so perfectly under the table. The Fridge is stocked with water, Ensure and cheese sticks for now.  

5. A small microwave allows you to warm hot packs quickly, heat water for ginger or peppermint tea, etc. Check!

 I got the microwave on a virtual sale for $15 and the table for $9 at Goodwill 

6. Fill the top drawer of your nightstand with abortive and rescue medicines so you can find them quickly in the middle of the night. Check!

 Flashlights, abortive a, TV controllers and iPad with headphones 

7. Keep non-perishable, easy to digest snacks in your nightstand, too. Check!!

 Crackers, ramen noodle cups, meat sticks, sour candy and a new minion Tervis mug that fits in the microwave 

Sweet snacks: Hershey Kisses and Gheradeli chocolates and the oh so important Oyster crackers in the Tupperware container. 

Popcorn, pop tarts, lunch on the run chicken and tuna salad

I also have some perishable stuff like fruit 🙂

8. Sunglasses or FL-41 tinted glasses can be stored nearby, too.  Wearing them now!

 Just got my new Theraspecs and so far they seem to really be helping.  But I think I need to bedazzle them. They are not cute!! 

9. Ear plugs or noise-cancelling headphones help to block out those loud noises that make the pain worse.  Check!!

 I have worn ear plugs every night for bed since shortly after I got married. Someone snores!!  I always have ear plugs nearby; by my bed, by the couch, in my purse, and in the car.  

10. Fill a basket or box with comfort items and keep it near your bed.  Check!

Rice bags, head scratcher, ear plugs, my monkey, eye mask and neck rest

11. Keep a small flashlight nearby to help you find what you need in the dark. Check!

I have Flashlights, abortive a, TV controllers and iPad with headphones in the drawer in my end table. 
12. A TV tray or lap desk is nice when you get hungry but are too weak to sit at the kitchen table. Check!

 It hides right under the table. Almost a perfect fit!! 

13. A power strip is handy to keep your cell phone charged in case you need to call for help.  Check!

Gotta have all my electronics plugged in!! 

14. A fan can be helpful if you tend to get overheated during an attack. Check!

 I’ve had a fan running in my bedroom since I was in college. 

Oh and one cannot forget back up supplies!! 

Still gathering a few things but for the most part my Migraine cave is ready.  I just need a sign which I am hoping to get back from the USGS today. And the sign is perfect!!  The cave is complete 🙂

 

All this means that I will feel a little more prepared for the next migraine when it comes and that brings me great comfort.

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New migraine precursor possibly

I’ll let you know tomorrow if my hunch is right. The last two migraines were preceded by an enormous burst of energy that lead to very late night cleaning/organizing.

Tonight I was so addicted to updating my blog that I just kept going and all of the sudden it was 12:40 am. My time stamp for this post will be around 2:45 am. In between the blog and going to bed I organized all of my Migraine Cave snacks, I moved furniture and put the new furniture in place. It fits perfect! And I put the microwave and snacks in place. Hence the crazy burst of energy.

I hope I am wrong about this hunch because I could really use at least one more good day before I need to use my Migraine Cave. I still have to pick up the mini fridge I found today for $30. Very excited to get that in place.

I had a very productive day so if I do go down tomorrow at least I am prepared with food and water!!

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For my Future Self: Migraine Cave Update

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I did! I started purchasing things for my migraine cave!! I bought a small microwave off of the Eaton Rapids Virtual Yard sale for $15, I bought room darkening shades so I could take down the sheet from one window and the Mickey Mouse blanket from the other,

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I asked Dan if I could borrow his mini fridge from the garage until I can find another one, I bought a table at Goodwill for $10 (hoping the fridge will fit under and the microwave on top) stocked up on water, protein drinks, snacks, food that needs no prep and no storage and some fruit. Oh and oyster crackers of course. I also treated myself to two minion Tervis glasses that were on sale (but I have a feeling they may not stay in my possession for very long. I’ll keep them a secret as long as I can 🙂

It sounds like a lot for my recovery day, but like I have said when I am feeling at all functional I have to things done. Really I only went Goodwill quick, Walmart (in and out in under 10 minutes using a cart) and Meijer (also using a cart). But I am worn out now and am resting.

Looking forward to my friend Dawn coming over to make us Turkey noodle soup and frost some sugar cookies!!