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New Migraine leads to ER Visit

I will look back at this and one day laugh…in fact all I can do is laugh about it now.  I have already written this post, but had completely forgotten about it.  I spent about a half an hour putting it together….and it was already put together.  Ugh Oh well!  Maybe some of you didn’t see the first post about the New Migraine 😛

The new migraine involves the left side of my neck where there is a great deal of muscle spasming.  On the back of my neck, it feels like a hand is being placed at the base of my skull and the fingers are tenticles of pressure that engulf my head before finding their target behind my left eye where it feels like a dagger.  It may sound dramatic, but this is the pain I felt for 6 days and on the 6th day my classic migraine behind my right eye joined the party.

March 26th: I am guessing that this drastic change in barometric pressure could be why I have been 6898_10153978454741897_7694716924008176830_n (1)down for two days. Such terrible pain and meds are not working. A 0.1 change can result in migraine. This shows a change of 0.66.

March 27th: Parent Fail due to Migraine #126: The kids have no idea it is Easter and that is ok because I was never able to get to the store to get any Easter basket stuff. I feel so terribly guilty, but luckily I was blessed with children who simply go with the flow and are not very aware of time. Maybe next week will be better and I can get to the store and hit the clearance sales so we can celebrate next Saturday or Sunday. I figure as long as we go over the real Easter Story that is the main point and it doesn’t matter when we do that. But the guilt will remain. And back to bed I go. This round of migraines/headaches has been really awful and I even have a new one that I have not experienced before. And to top it off it does not seem to be responding the medications that I have on hand. But I have taken all the meds in combo and am hoping for some lowered pain time to spend with my family later on today.

March 28th: Today is my 5th day in row down with the same migraine. Meds so far haven’t helped. This seems to be different than previous migraines/head pain. I am hearing from others that they are also suffering right now. I just wish the weather would stabilize. I have no other map_tileexplanation than that. At some point I am going to have to go to the ER but it is so damn inconvenient. So if anyone has no plans or kids to take care of who wants to hang out at Sparrow, let me know?

March 29th: I finally decided to go to the ER. My speech was getting increasingly more slurred forgetting words. 6 days straight does not do a body good when it comes to migraine.

Their new triage system is quite nice and efficient.  I never sat down from the moment I walked through the metal detector until I was in a room getting ready to be hooked up to an IV.  I got my wrist band, talked to the first person to tell briefly why I was there, then off to explain further and make sure all of my info and medications were up to date in their system.  In that same room I met with a triage Dr. where she came up with a plan which was put into the system.  I then went to get my blood drawn and give a urine sample.  I didn’t even have time to put my name on the sticker and they were whisking me to my room where a nurse came in quickly and started the IV.  My veins don’t like to cooperate, but today the woman drawing my blood got it on first try and the woman putting the IV in only took two tries.

The first round of meds is the migraine cocktail and for me that is generally; Toradol, Benedryl and Zofran.  It didn’t work of course (I had already tried that at home, but they have to try).  Then they came back with Haldol (which made me want to crawl out of my skin, it was terrible) and Pepcid.  It finally knocked me out but the migraine remained ever so present when I awoke.  They were debating on admitting me at that point, but after a consultation from the hospitalist on call they decided to try Nubain and guess what it worked.  I has yet to fail me in these terrible, long term migraine cycles.  They let me lay for quite a while and once the narcotic effects wore off the migraine was gone.

Dan had taken the kids home earlier in the evening because each one of these medicine cycles takes time to take effect.  So I called him at 1:00 am and gathered up the kids and came and picked me up.  I love that my kids are so malleable…they just go with the flow no matter the situation (well most of the time anyway.

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Mayo Clinic

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I got the call that Mayo is going to take my case!!!  Happy Dance!  My series of appointments start on April 15th.  Good thing I already filed my taxes.  And a really good thing that my mom will be home from Florida and is available to drive out there with me.  Now to start filling out headache questionnaires and gathering all of my medical files.  Just hoping that they can get me some answers.   I have my next apt at MHNI on March 31st and I really hope that they will continue with me as a patient even though I am going to Mayo to try and get more answers about the why? the migraine started to begin with.  Hopefully they will do more extensive testing or having other ideas or who knows what!  But it can’t hurt at this point!  I am kind of excited about this journey.

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Weather and migraines don’t mix

This whole weather changing thing has got to stop. At least the drastic changes. I woke with a migraine so disabling that I could barely handle the pain. Dan took the kids to the bus stop and I went back to sleep only to wake up to excruciating pain. So I brought out my Arsenal of abortive meds and took them all. I took the one that has been working for migraine first but 30 minutes later nothing changed. Then I took benedryl to hopefully go back to sleep and waited and put my IceKap on but nothing was helping. I finally brought out the big guns: 2 doses of Toradol and I was relaxed enough to fall asleep in about 15 minutes and slept until now. The excruciating pain is definitely gone, PTL, I just feel groggy with moderate level pain which I am so grateful for. Hey at least I finished and filed my taxes last night; maybe that was the cause of the migraine 😜. And thankfully I had planned today as a day of rest. So I will continue to rest and pray that when the meds where off the migraine does not return.

Of course this migraine lasted 72 hours followed by a day of disabling fatigue and dull head pain.  The 2nd day I just tried to sleep as much as I could to deal with the pain, using medicine alternatives like the icekap and heated ricebags.  However by the 3rd day I couldn’t take it anymore, so I took abortive meds again. Fortunately the meds take the severe pain away but unfortunately they leave me very dysfunctional and sleeping most of the day, then I couldn’t sleep at night, so I slept most of the day today (migraine hangover day).  The past 3 weeks have looked exactly like this and I am just getting frustrated.  Yes, there are meds out there that take the pain away, but they don’t make me functional.  So I am starting to consider a 2nd opinion.

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The reality of Life with Chronic_______

I have had 2 1/2 days without migraine pain since January 1st. So for 13 out of the past 15 days, this is what I look like…


I have showered 3 times in those 2 weeks, brushed my teeth a few time (brushing hair or teeth causes more pain than I am willing to allow on top of the migraine pain).  I change my underwear if I remember and never wear a bra.   This is my reality!!!  And the reality for many others who suffer from Chronic Illness.

But today is our 16th Wedding Anniversary and I was having nothing to do with it, I am so over the pain. So I called my doctor and asked if I could take the migraine cocktail at home even though I have used the meds as much as I should this week. He gave me the go ahead. After about a half an hour the pain is much reduced and I am determined to enjoy our night.

Me after the migraine cocktail….


And so now we can go celebrate. Plus all my boys brought me home a new plant. It should be a good evening!!


So off to Carrabbas we go!!

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A Dream during a Migraine

The nausea is so bad today that it even entered my dream. I was at some random persons, oh wait I remember now, it was at our first day care, Kim’ house (I ran into her at Walmart yesterday) learning a craft.  I told her right away that I have a migraine and that I am very nauseous. She just said I was probably dehydrated. Boy did I get pissed, but then realized it was probably true.

At some point we were in the corner of a room because that is where the glue guns were. I have no idea what we were making and none of it made any sense.

I felt so awful. Why in the world did I even go in the middle of a Migraine and why the hell didn’t I leave. Oh yah what were Dan and the boys doing there running around being crazy. I told Dan he was going to have to help but he took off with the boys. I was so confused about what was happening, about what page we were on and even about what she was saying. At different points I remember having to get up and stumbling around to find it at her house.   I was trying to refer her to my blog but I kept writing it wrong, adding words, forgetting words. Then the pencil would break, or the piece of paper would be too small to write it on with the crayon I found. I was absolutely beside myself. Nothing like having and anxiety attack during a migraine in your dream.

I woke up from my dream and realized that this is exactly how I was feeling today. I had been stumbling around earlier, having difficulty finding words and I was and still am so nauseous.  Dreams are so weird!  image

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What is a Migraine, What are the 4 stages, My Experience

Definitions and Stage descriptions from the Mayo Clinic Website

What is a MIGRAINE

A migraine headache can cause intense throbbing or a pulsing sensation in one area of the head and is commonly accompanied by nausea, vomiting, and extreme sensitivity to light and sound.  Migraine attacks can cause significant pain for hours to days and be so severe that all you can think about is finding a dark, quiet place to lie down.  Some migraines are preceded or accompanied by sensory warning symptoms (aura), such as flashes of light, blind spots, or tingling in your arm or leg.  Medications can help reduce the frequency and severity of migraines. If treatment hasn’t worked for you in the past, talk to your doctor about trying a different migraine headache medication. The right medicines, combined with self-help remedies and lifestyle changes, may make a big difference.

Symptoms: migraine headaches often begin in childhood, adolescence or early adulthood. Migraines may progress through four stages, including prodrome, aura, headache and postdrome, though you may not experience all the stages.

Stages of a Migraine

1. Prodrome: One or two days before a migraine, you may notice subtle changes that signify an oncoming migraine, including:

  • Constipation
  • Depression
  • Food cravings
  • Hyperactivity
  • Irritability
  • Neck stiffness
  • Uncontrollable yawning

2. Aura: Aura may occur before or during migraine headaches. Auras are nervous system symptoms that are usually visual disturbances, such as flashes of light. Sometimes auras can also be touching sensations (sensory), movement (motor) or speech (verbal) disturbances. Most people experience migraine headaches without aura. Each of these symptoms usually begins gradually, builds up over several minutes, and then commonly lasts for 20 to 60 minutes. Examples of aura include:

  • Visual phenomena, such as seeing various shapes, bright spots or flashes of light
  • Vision loss
  • Pins and needles sensations in an arm or leg
  • Speech or language problems (aphasia)

Less commonly, an aura may be associated with limb weakness (hemiplegic migraine).

3. Attack: When untreated, a migraine usually lasts from four to 72 hours, but the frequency with which headaches occur varies from person to person. You may have migraines several times a month or much less often. During a migraine, you may experience the following symptoms:

  • Pain on one side or both sides of your head
  • Pain that has a pulsating, throbbing quality
  • Sensitivity to light, sounds and sometimes smells
  • Nausea and vomiting
  • Blurred vision
  • Lightheadedness, sometimes followed by fainting

4. Postdrome: The final phase, known as postdrome, occurs after a migraine attack. During this time you may feel drained and washed out, though some people report feeling mildly euphoric.

My Experience

Stage one (prodome): Symptoms that I have come to relate to an oncoming migraine include: Hyperactivity, Irritability, Neck stiffness and Uncontrollable yawning.  And now that I think about it I think that constipation  might also happen, but will have to track that maybe.  Any indicator that I need to prepare for a migraine are helpful for both my mental status and for my family.  It helps them prepare for the days ahead if I can tell them I believe a migraine is coming.

Stage two (Aura): I only experience the aura (flashing lights for me) once in a while and it is usually during a really bad migraine.

Stage three (Attack): My migraines last 72 hours and can occur as many as 20 days or more a month (making them chronic migraines).  In general I have stabbing pain behind my right eye brow…but sometimes can occur on my left or both sides at the same time.  During a migraine I always experience, sensitivity to light (photophobia), sensitivity to sound (phonophobia) and a crazy heightened sense of smell.  I often experience nausea (luckily I don’t have vomitting, blurred vision once in a while and lightheadedness.

April 11th

Stage four (postdrome): I am extremely fatigued but have very little head pain.  Although, because I also suffer from New Daily Persistant Headaches (see the next post), I usually have head pain across my forehead, but it tends to be mild.  I also feel a sense of heavy fog that effects me cognitively (or a mild case of aphasia: Aphasia is a condition that robs you of the ability to communicate. It can affect your ability to speak, write and understand language, both verbal and written.) ; for me I can’t find words, get right and left mixed up, use wrong words…have trouble communicating.  It can last a full 24 hours or just for a few hours in the morning before I really get up and around and moving.

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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.