Monthly Archives: January 2016

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Imitrex…Side Effects

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1/28/16 I HATE IMITREX!  The side effects are so awful that I just don’t like to take it. My heart begins to race, my chest tightens, my throat constricts making it t difficult to breath. HOWEVER, it seems to be the drug that actually helps knock down the migraine that occurs over my right eye, the classic migraine that I fight often. I’m not sure how long the good effects last because I am starting to feel it creep back up, but it’s something.   BUT DID I TELL YOU THAT I HATE IMITREX. Why does the medication that causes the most terrible side effects have to be the one that may help with the migraine. Ugh!  But I am thankful that there are a few options out there now to treat the different types of migraines that I suffer from.  Some people don’t even have that, so I shouldn’t be complaining.  When I looked up my side effects though, it says to discontinue and to seek immediate medical help because the medication also has the side effect of heart problems that can be masked by the side effects I am having, so I would have no idea if I was in real trouble.

So in the mean time I will take Imitrex if I feel a classic migraine coming on.  Prednisone will be reserved for long trips or very important events for the time being and Toradol and Robaxon work well to manage the tension migraines and New Daily persistent Headaches.  I feel like I am gaining a little bit of control over this demon, but am a long ways from finding the medication that prevents the migraines/head pain/headaches from happening.  One step at a time.  I go back to MHNI next Tuesday to work on a new plan of attack.  I have ideas and am learning so much about my migraines and patterns through writing this blog, that I feel like I am finally putting the pieces of a puzzle together.  And though it is far from complete at least the outside edges are getting closer to being done.

All I know is that because of Imitrex I was able to pick up my son from school when he called saying that his thumb really hurt, run errands and take him to the Dr. in E. Lansing yesterday and this is all after waking with a migraine and not being sure if I would make it out of bed.

I am glad we were able to get in to Josiah’s Dr. yesterday though because the splint they put him in at the Emergency Room was really cutting off the circulation and causing a great deal of swelling even after we had already loosened it.  They also determined that the fracture that the ER dr. saw wasn’t really a fracture.  But because of the bruising and the areas the hand and thumb are sensitive, they said he likely sprained it pretty bad.  We go back in 2 weeks to find out how he is feeling, but for now he loves his new Spiderman boot splint in his favorite color!!  It is pretty cool if I might say so myself.  He can take it off to take a bath, but for now he keeps it on all the time.  When you just look at the splint it looks like any other, but it is actually hard and formed to his hand just like a cast, but this one can be removed.  He was happy and the swelling went down rather quickly.  So hopefully the pain will go down too 🙂

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Postdrome and the ER again

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1/24/16 Sunday was a day of feeling nauseous, feeling groggy and just an overall day of feeling gross.  Head pain was dull all day, but that’s because it was overshadowed by everything else.  I couldn’t sleep the night before due to feeling so well from the shot of Nubain.  So that didn’t help.  Trying to get myself re-hydrated and eating again was my main goal of the day.  And then to get some sleep.  I went to bed at 10:30 pm.

1/25/16 I woke today feeling refreshed was a wonderful way to wake up, since I had woken with severe head pain for the previous week.  I had a couple of hours this morning when I felt relatively good, but then fatigue came on quickly so I decided to take a nap.  But before my nap I decided to turn the vibrate on my phone off, so that when I have it in silent mode it doesn’t vibrate either.  Of all days to do this!  I got 4 phone calls that I really should have gotten.

The calls were about Josiah…he had injured his thumb and needed to go the ER.  Luckily Dan answered the phone.  And then he had the brilliant idea of using “Find my iPhone” which makes a sound no matter what setting you have it on.  Which finally woke me up and heading in to the ER to find out what the verdict was on Josiah’s thumb.  Broken!  My boys…just can’t keep themselves safe!

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IceKap Review

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1/24/16 My friend Mindy said that this cool cap makes me look a Migraine Super Hero!  I kinda like that!  Not sure what my super power is…maybe living in a cave for days on end??

The sales ad for this migraine product kept popping up everywhere for this IceKap.  I read several reviews and thought that this might be something that might be great to add to my migraine toolbox.  And indeed it is most definitely awesome!  I used the IceKap both hot and cold.

Hot: In general I use heat in the form of heated rice bags.  So the first way I tried the Kap was hot.  But the way to heat the gel packs is by putting it in the microwave for 10 second spurts.  The first time I heated them it took 2 minutes at 10 second spurts…this was not fun at all with the amount of pain I was in.  Then my husband recommended the crockpot on warm since that is the way I heated my rice bags.  However this was not a good idea.  When I took the gel packs out in the morning one of them was about to explode and I could not even touch them.  In fact I couldn’t even touch them for several hours.  In other words I have not found a good way to use this Kap as heat, however the directions did suggest using hot water to heat them.  So at some point I will try it and let you all know.

Update: After sending an email to the company, here were the suggestions they gave me after reading my review 🙂  Great suggestions!  Great company!

Regarding the heating part. We say 10 second intervals as everyone’s microwave is different and we want to make sure nobody bursts them. Sounds like you could get away with doing 30 second intervals. Try 20 first. Also when using hot water the gel will expand if it’s left to continue heating or it will burst. Try pouring near booming water over them on a pot or even warming them on the stove in a pot of warm water.

Cold: After reading the information on the website and knowing so much about my migraines and what helps, I decided to try the Ice/Cold aspect of the cap.  In the past I have not been able to use ice because it caused vasoconstriction immediately and increased pain, mostly because it was cold in my hands and sent chills up to my head, which in turn caused the constriction of the blood vessels in my head and increasing the pain.  However, with these gel packs, you can put them in the refrigerator and make them cold instead of ice cold.  Using the cap in this manner, reduces the swelling and since the types of medications that work on my migraines are anti-inflammitory drugs, I thought I would give it a try.  And it provides a great amount of relief…enough so that I could fall asleep with the IceKap on.  When I woke I was able to put the 2nd set of gel packs into the Kap.  It was also a great cap to wear on the way to the emergency room today because I was able to pull the cap down over my eyes blocking out the light at the same time providing some relief.

Overall I highly recommend the IceKap for Migraine, Head or Sinus pain.

Here is the link to the website and an explanation about how the IceKap works.

IceKap.ca Website

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Andrea Jones, ICEKAP founder

As a migraine sufferer, I was desperate to find a natural solution that would not only help relieve the pain but also allow me to keep up with my active lifestyle. I suffered from migraines and headaches for well over a decade. During this time I have been in and out of the hospital and had many serious and invasive tests done to determine what is causing my migraines. I had also become far too familiar with the steady flow of ineffective prescription drugs that impacted my ability to operate normally. I had become so desperate to find something natural and drug free to help me I started going to work in a tuque filled with ice. This is where it all began.

I developed this product for anybody who suffers from pain, sick days, lost wages, and the pure frustration of having a migraine or headache. When our whole ‘control center’ is in pain, how are we supposed to accomplish anything?  Never mind getting dressed in the morning. My work was suffering, my pocket book was suffering, I needed to find another way. Now there is – a soft, soothing and natural way to sooth you in your time of need and I’m so happy to finally be able to share it with you! I am not making any claims that Icekap is the miracle cure for migraine headaches but I can assure you it will soothe your symptoms, offer great relaxing relief and help you along the way to recovery in style!

How your Icekap works…

Icekap uses a combination of cryotherapy, aromatherapy and pressure therapy to treat symptoms. Cryotherapy is the general use of cold temperatures in medical therapy or the removal of heat from a body part. During a migraine the blood vessels in the head dilate causing pain. These vessels become swollen with blood and thus put pressure on the nerves surrounding the vessels. Both heat and cooling therapies use temperature manipulation to reduce migraine/ headache pain.

The use of cold therapy (Cryotherapy) is believed to cause the swollen blood vessels to constrict, thus reducing the pressure of the migraine/ headache pain. The use of heat therapy increases blood flow, increasing the amount of fresh blood, oxygen and nutrients to the head.

Icekap Essential Oil:

This combination offers an amazing soothing and cooling effect to the migraine sufferer. Cooling to the touch, it offers instant relief and a wonderful sense of well being. Lavender oil has calming properties that aid in relaxation and reduce anxiety while peppermint oil has cooling properties that create a cooling and soothing effect. Distilled essential oils have been employed as medicines since the eleventh century and are 100% natural.

Icekap Pressure System:

Some migraine/headache sufferers feel relief when pressure is applied to their head. To accommodate this, Icekap has an adjustable pressure band which allows the user to adjust the pressure of the cap to whatever tension they desire. The pressure system offers a comforting support to the key migraine areas – occipital, frontal, parietal and temporal regions. With this band the user can apply pressure to sooth the key areas of ‘pounding’ during a migraine.

Sincere thanks and joy to you for trying Icekap.
Andrea Jones, ICEKAP founder

 

 

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Hugs make everything better!

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1/23/16 Friday night I had a very brief period of relief from the Migraine cocktail.  I was able to get up and eat and I even got some snuggles and hugs from my two little boys.  Love my boys!!!

1/24/16 Tonight after a shot of Nubain, I was feeling even better.  Gideon just came out, walking in his sleep, and climbed right up into my lap and fell right back to sleep and I just let him snuggle right up.  It was a little piece of heaven having my baby snuggle like when he was little.

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

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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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1 year anniversary of the first day of my everlasting migraine/headache

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1/23/16 It only seems fitting that I am back in the ER exactly one year from the day the migraine began. One year of so much craziness, so many Dr visits, so many missed events, so many….

But also I am thankful for new friends, thankful tha I now have an  understanding of Chronic illness and living with chronic illness. I am also very thankful for health insurance because even though out of pocket I pay $845 a month and max out of pocket of $3000 at least I didn’t have to pay the hospital/Doctor bills that added up to over $300,000 last year.  I am so thankful for the family and friends who have supported my family and myself over the past year.

On my way to the ER after battling a 112hr migraine.  I just couldn’t handle the pain anymore and decided it was time to go in.

Waiting for the doctor at the ER.  It was one of the best ER visits that I have had in regards to a migraine.  She looked back at my chart and saw that Nubain was an effective narcotic for when the migraine cycle couldn’t be broken with Toradol, Benedryl and Robaxon.  I also told her that starting an IV was extremely difficult and if I could avoid it, that would be great.

Thankfully she really listened to me and did not insist on starting an IV or taking blood.  Instead she offered me a Nubain shot and when that took effect I was able to go home feeling so much better.  This is a picture of me after the shot of Nubain, kind of a goofy grin, but that is exactly how I was feeling 🙂

Me waiting for my family because they didn’t get any of my texts.  And although I am slightly annoyed I am so thankful for the relief.

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Quest for a Book in our House

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1/18/16 I slept until 1:00 pm and was pretty groggy for the next few hours, but I finally came out of the fog and had very little head pain for most of the day.  As the night wore on I got more and more energy, which is why I am still awake at 2:30 am blogging.  I hate it when this happens, because it means that I will either need a great deal of sleep the following day to catch up or it means there is a migraine on the horizon.  I did however have a nice weekend just laying low with my family.

0001452_complete_book_of_farmyard_tales_with_cd_cv_300My biggest challenge today has been to find a book that I purchased from Usborne books when Josiah was about 4.  I have looked everywhere that I can think to look and then I looked a 2nd and 3rd time.  I can’t find it anywhere.  So I finally put a note out on FB to see if I loaned it to someone…I have a vague recollection of signing my name inside a book I let someone borrow.  However my memory is terrible and I cannot remember if I loaned this book out, nor to whom or if it was another book I loaned to someone and signed my name in the front cover.  I remember having a conversation at my house in Gideon’s room about the book and how cool it was that it had a CD and everything…but no memory after that 😦  So if you read this blog post and happen to have it or remember me showing it to you, let me know!!!

Found it!!!

 

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A Lazy Saturday at Home

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The only activity that happened all day was Gideon’s swim lesson.  We had a really good talk about listening to Mr. Marty and watching and listening.  He did really great today…so proud and so excited to watch him progress!

All three boys took turns playing a new computer game called: Slime Rancher.  They all enjoyed it, but since Josiah had watched 28 YouTube videos he knew the most about it.  Even Gideon caught on with Josiah’s guidance quite quickly.

We watched all three movies: Inside Out, Pixels and most of Jurassic World  Thanks to Redbox we got the third movie for $1.00 and then I signed up for the email so my next movie rental is free!

I spent the day blogging.  I hit my 100th blog post today and have posted from January through April 30th.  Starting on May next and I want to make sure I don’t forget to post the current days so I don’t have to go back and try to remember what happened or rely on my headache journal or FB.  I can kill two birds with one stone  with posting my update on my blog and being able to share it on FB!

Love, love, love this picture of Dan and Gideon!  We were all on our electronics and watching movies for almost the entire day.  But I especially love that Gideon is wearing his party shirt and his under wear 🙂  After our Anniversary celebration last night, he decided he was going to have a birthday party for himself and that I was to call Douglas, Chase, Lakelan and Alyssa.  I asked for their phone numbers which then turned into him learning my phone number for emergencies…but no party!  I don’t think he understood in the end still why we couldn’t just invite them over today.  Oh well!  We have a plan to get some parents to give us a call to have a play date 🙂

I am so glad that I took the migraine cocktail yesterday, both so I could have a good anniversary evening, but it also stopped the cycle of the migraine, so that I could enjoy my Saturday at home with my family.  And even though I stayed up until 4:30 am last night I was up by 9:00 am today and never took a nap…the true sign of a good day.   It was only in the last hour or so that my eyes started to be strained and I felt some tension taking hold at my temples, but then I remembered the alarm going off for my 3:00 pm for my scheduled muscle relaxer, turning it off and never getting up to take the med.  So I just took the Robaxon and did a little Ethyl Chloride spray just so I can finish up this post 🙂  Priorities!!!

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The reality of Life with Chronic_______

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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!!