Do you know what I go through?

I found a list of common migraine symptoms – and when you read this remember that I have most of these 100% of the time – as in they never go away.  Let that sink in for a moment.

migraine-symptoms

and migraine-is-more-than-a-headache-the-many-symptoms-of-migraine/

Lets go over some of them together off that list.  I will add some of my own that are missing and mark the ones that don’t pertain to me.

Visual Aura (before the pain begins)

  • a bright shape that spreads across the visual field of one eye and appears to block some or all of the vision; can be seen whether the eye is open or closed – I have this almost 24 hrs a day
  • flashes of light and color  *  24hrs a day 
  • wavy lines  * 24hrs a day
  • geometric patterns  *Not really
  • blurred vision  * 24hrs a day 
  • partial loss of sight  *Not really
  • *I will also have hallucinations of things that are not there (spiders/bugs/shadows) mostly caused by medications that I take to prevent and treat the migraines/daily headaches I have.

Sensory

  • numbness or tingling on the face or upper extremities * 24hrs a day 
  • a sense that limbs are a distorted shape or size *No
  • heightened sensitivity to lightsound, and smells  * 24hrs a day 
  • smelling odors that aren’t actually present (like natural gas or something burning)  *happens a lot – mostly Gasoline, burnt bread, chocolate(that I am allergic to) dirt or dust, grass, something is wet or damp…
  • skin sensitivity and intolerance of being touched (allodynia)  *happens a lot
  • *things will feel overly cold or hot to the touch…or if it is a little cool to the touch I can’t tell if is it damp or not, and not in like a normal way, like my nerves cannot relay what it is they feel correctly – and the reaction of something being too hot might be delayed. 

Motor

  • partial paralysis  *Not really
  • weakness or heaviness in the limbs on one side of the body  * happens a lot
  • *with chronic fatigue comes chronic pain – so I have pain that radiates all over my body.  a migraine will make that worse.  also if I have had a CFS flare, it makes the daily headache worse or a chance of a migraine higher.

Cognitive

 Digestive
  • food cravings (particularly for carbohydrates, candy and chocolate)  * 24hrs a day 
  • stomach rumblings * 24hrs a day 
  • constipation  *I have IBS

Fluid disturbances

  • increased thirst  *Not really
  • frequent urination*Not really
  • bloating/fluid retention *Not really

Mental/Personality

  • fatigue, lethargy  *I have Chronic Fatigue Syndrome
  • mood changes  * yes
  • irritability  *sometimes
  • high energy  *sometimes
  • depression  *yes – I want to cry all the time
  • anxiety  *And panic attacks – thank you Botox for that.  I have not done the treatment in years yet I still have the panic attacks – plus I worry all the time that my support system will have enough of all of this one day.  Also adds to my depression 
  • nervousness  *yes see above
  • euphoria, feeling of intense well-being  *yes, followed by depression and feeling like it is all going to go wrong.
  • *I feel all alone – most of the time.  

Digestive

  • nausea  * 24hrs a day 
  • vomiting  *sometimes
  • intolerance of food odors  *sometimes
  • loss of appetite  *Sometimes
  • diarrhea  *Not really
  • constipation  *most of the time(IBS)

Skin

  • paleness  *Not really
  • cold, clammy hands and feet  * 24hrs a day 
  • facial swelling*Not really
  • goose bumps*Not really
  • bloodshot eyes  * 24hrs a day 
  • black circles around eyes  * 24hrs a day 
  • sweating  * 24hrs a day worse at night

Respiratory

  • frequent yawning    * 24hrs a day 
  • sighing  * 24hrs a day 
  • hyperventilating  *Sometimes
  • nasal congestion  *sometimes
  • runny nose  *Sometimes

Circulatory

  • changes in blood chemistry *Not sure
  • changes in blood pressure  * 24hrs a day 
  • blood vessel dilation  *not sure
  • difficulty regulating temperature  * 24hrs a day 
  • changes in heart rhythms  * 24hrs a day 
  • *blue fingers/toes

So I have added a bit of what I go through or feel.  I hope that this helps some of you feel not so alone, or gain a better understanding of someone you are close to who might have this horrible health condition.  Remember that a migraine is not a singular thing – it is a condition.  The head pain is only one phase of four – the third phase.   I will get into the different phases on another post.

My Life With A Flare…

I know I have been quiet and I am not going to say I am sorry.  I have had things going on, and I am sure you have too.  I hope you have missed me as I have missed this.  I wanted to share a little bit into my life – I read something the other day that was like someone took the words right out of my mind and wrote them down…

You Don’t See the Worst Days of My Illness Because I Hide Them From You

So I got to thinking that maybe I should write a little something about my “flare days” or what they mean to me.  This morning I woke up with a mild one, so it’s a good day as any to start.  When you read these remember that I am only 35 years old and have had most of these since I was a teenager/young 20’s.  Here is a bit of my everyday life with a small glimpse of what the flares mean to me. (and before you look at this and think TLDR – remember its my life, I don’t get the TLDR option)

  • I have lived the last 11-12 years with a constant 24hr a day headache – please let that sink in.  It never stops, it never goes away.  Even when the Migraine pain goes away, the headache pain that I have never goes below a 3 or a 4.  When I have a flare day it can go up to around a 6 or so
  • at the Age of 21 I finally got my diagnoses of Chronic Migraines even though I had started having them when I was around 4 years old my mom said but none of the Dr’s believed her.  When I was a teenager they were almost constant in my life.  I had a Dr when I was 16 who was convinced I was faking it, it wasn’t until I had my second Seizure (yes I said second) at 20 that she sent me for tests and it took her another 6 months to agree with the other Dr’s diagnosis of Chronic migraines.
  • I have pain all the time in my mid/lower back, but on my bad days it like to lock up to where I cannot move for fear of causing myself nerve damage or exploding a disc in my back.  This started when I was about 13 years old, of course no one cared – no one has still looked at my back or my hips
  • I have pain in both of my hips on a daily basis, on a bad day I can hardly walk. (did I mention I am only 35 years old BTW)  Its worse on my right side with sciatic issues.
  • I have bilateral subluxation of the patella – or in non medical terms both of my knee caps slide around where they are not supposed to be – its worse on my right knee and I should have had surgery when I was 16 and collapsed on it or again when I was 23 and did it again – when I was 16 the Dr gave my parents some BS line and sent me to Physical therapy – when I was a young adult I had an awesome DR who diagnosed me, but I could not afford the surgery nor the time off from work.  (I still can’t)
  • Both my ankles click and hurt, I have broken almost all of my toes and my feet go numb with the slightest cool temp.  OH, they will also have pins and needles if I stand for too long – good times.
  • I have issues with my Lady Parts – I cannot have children – I have to have surgery to removed polyps, and ties my tubes, but there again, I cannot afford surgery.  My Doctor also diapered on me and treated more like a number than a person so I am on the hunt for yet another new OBGYN – oh the joy!  I also have ovarian cysts – on both sides.
  • Just like most people with Chronic migraines – I have IBS
  • I have issues with maintaining a healthy weight, I was under weight for most of my life till around 21 – now I have been considered over weight since.  I could stand to lose 50/60lbs and be comfortable with myself.  I know that doesn’t sound like a lot to some people, but I have yo-yo’ed with my weight for some time now.
  • My Shoulders are sensitive to repetitive work, like a few weekends ago when I took on painting our master bathroom by myself and had to call in sick the next day because I could not raise my right arm. I also broke my right arm when I was a kid so I have some nerve damage in my arm and hand.
  • I have numbness in my hands when they get cold just like my feet, it was intensified with the medication that I take for my migraines but I had it even before I started to take it.
  • I have had chronic nausea for over 3 years now – it comes and goes, but typically lasts for a few days when I have a flare up.
  • I have acid reflux
  • My migraines are about 1-2 a week – most I deal with without medication and push through if they last just a few hours – the bigger ones that knock me on my butt – I end up taking medication for – last week I had to take 3 doses of medication in 24hrs – that is so hard on my body, but I didn’t have a choice.  I was in tears and almost in a panic attack.
  • Between my work and my home – the temperature is never warm enough for me and I am in pain almost all the time.  I always have a sweater on at work, I even have gloves and a blanket on my work chair.  At home I always have a blanket on my chair.  At night when we go to bed I am cold at first but then shortly after we go to sleep I get hot and will kick everything off.  If I get too cold or stay cold for to long, all my joints hurt and my head will start to hurt.
  • If I get too hot, and it doesn’t take much time out in the heat and where I live our summers are HOT – I will get light-headed, can (and have) passed out and feel sick to my stomach.
  • I shake, I get dizzy/light-headed for no reason.  I feel like the ground under my feet is shaking or moving.  I tripe over air and down I go.  I stub my feet all the time or miss negotiate doorways and clip my shoulders.
  • I can get exhausted from taking a shower, brushing my hair/brushing my teeth.  I have Chronic Fatigue Syndrome, so it doesn’t matter how much sleep I get, I am always tired, always ready to take a nap.  I fall asleep very easily during the day.  If I have a CFS flare – forget it – I have little to no energy to do anything.  My hair will not be washed, I am wearing my PJ’s or something close to them for most of the day and might not make it out of my recliner that often.
    • What a CFS flare means to me: I am extremely exhausted, like fall asleep any time during the day if I sit still for a moment kind of tired.  Yet no length of a nap will make it better, in fact after I wake up from a nap I feel almost like a panic attack or like I was drugged.  Taking a shower makes me wiped out and I shake or physically hurt from the water hitting my skin. (I have to take a HOT shower because the cold water will make my joints lock up.)  I will just feel “off” like there is something wrong but I cannot place it, nothing sounds good to eat, nothing sounds fun to do, nothing I want to watch on TV.  I just don’t want to do anything.
  • I have insomnia – have since I was very little and if I have a flare up of any kind it is not unusual for me to awake till midnight even thought I am exhausted and have taken medication to sleep.
  • I have panic attacks – they were never that bad until I had my last dose of Botox injections a few years ago for my migraines and they got supper bad.  Everyone that got them around the same time I did had the same reaction and mine have not really gone away.
  • I am on a restricted diet – I have to have low potassium, low sugar, low sodium, low-fat and non dairy if I can help it foods.  I avoid cows milk and limit my other dairy intake.  I also have to avoid Pork and lower my intake of red meat.  My body cannot seem to process the potassium in foods or water that I drink.
  • I was tested for MS, Lupus and various other Auto Immune disorders – the Lumbar puncture I had done said no for MS but leaned toward Rheumatoid condition – the Rheumatoid Dr took blood work and never called me back – so starting over there.  I still feel I have something like Lupus or Firbro and so does my Neurologist – she was the first dr to believe me in all of this mess.

So what do I do, I try to put a smile on my face and hide it from everyone.  Why?  Because when someone asks me how I have been and I try to tell them, they either back away from me like I am bothering them, or their eyes gloss over like “God, will this girl ever shut up, she can’t possibly be this sick.”  I get that all the time, “Well you don’t look sick…” “You were fine yesterday.” “You were fine and hour ago/15 mins ago…”  You have no idea how much your words hurt.

But, this post isn’t to make anyone feel bad, this is to make you understand, or try to somehow.  When I say I am sick, or that I hurt – understand that the level of pain that I am in – you will never fully see, because I try to hide it.  My poor Husband is the ‘lucky’ one who gets to see me sink to my knees and sob – yes sob like a 5-year-old asking “WHY ME!  What did I do?”  And cry so hard that I make myself sick because it hurts so damn much.  So don’t you ever, for one damn second think I am faking this.  I would not wish this on my worst enemy.

I have a few close friends who say they can see it in my face when I am trying to hide it, or hear it in my voice.  And I guess just over time it’s getting harder and harder to hide.  So there it is, a little bit of a view into what its like to be me.  Maybe you will better understand me, or someone just like me…or it offers someone who is just like me hope that they are not alone.

I don’t want you to feel sorry for me, I don’t want you to think I am weak – I want you to see how strong I am.  For all the people out there who hide behind the smiling mask, I am here with you!!  You are not for one second alone!

Hello Readers…

Wow, Its been since October 4th of 2016 since I posted anything – and I am so sorry for that! a lot has gone on since then…

  • We moved! That’s right we sold our house and moved finally! That was in Nov
  • I have been having lots of tests done and we have ruled things out but still no idea whats really the cause of my stuff
  • My awesome husband got my 1971 VW bus on the road! I had tears running down my face watching it roll out of the garage under its own power the first time – its been a long 3 years of working on it, but so worth it.
  • I am going to be an Auntie, my lil’ sister told us on mother’s day this year that she is due in Dec! on our mother’s birthday!

I have been winning lots of stuff off the amazon giveaways, and I have been getting lots and lots of samples that I have been slacking on getting on here – I know I have been a very bad blogger, but life got very busy with setting up house and the actual move.  And you guys all know that with my chronic fatigue, chronic pain and migraines…it takes a lot for me just to get up and go to work.  But I had to check in with you guys today, I felt the pull and the need to stop in and say HI!  I have also been doing really well on making and selling some homemade soaps, lotions, lip-balms, lip-gloss…Crochet items and soon I hope to be adding shirts with funny sayings on them.  I don’t make a killing, but just enough to buy more supplies and that keeps me happy.  a little play money and bringing joy to those I make the items for.

I recently made a crochet chicken from a kids movie for a foster agency in my home town that my work commissioned me to make.  It was part of our community outreach.  It brought me such joy to be able to do that.

A little update…

Dear Readers,

So I took a little break – again – and I know I said I wasn’t going to do that but we have had a lot of changes going on in our home over the last few months.

First off on July 22nd I had a lumbar puncture done.  It’s also known as a spinal tap, they are testing for a number of things but most of all I wanted to be tested for a Pseudotumor cerebri (also known as idiopathic intracranial hypertension) It’s where there is too much pressure inside your skull from a build up of spinal fluid.  And I also wanted to be tested for MS.  What is MS? Multiple sclerosis (MS) is an unpredictable, often disabling disease of the central nervous system that disrupts the flow of information within the brain, and between the brain and body.  You can live with it, with the help of medication, and with dedication from yourself, your support system and your medical staff you can live a full and happy life.

I have 90% of the symptoms for MS and it would be validating to be told that I was right.  That I finally stood up for myself and I was right!  On the MRI I had 2 years ago the Rad told me I would ask for the tests for MS, and I let it go when my Dr disagreed.  But I only have about 70% of the symptoms at that time.  Now, I am much worse and I feel that I need to be taken seriously.  And when I expressed my feelings she seemed hurt that I didn’t come to her.  Like I was afraid, and I realized that I wasn’t giving her a fair chance.

I have had doctors in the past who were, lets say, MEAN.  And they would almost place blame on me for my migraines, my high blood pressure, all of it – it was all my fault and they were almost punishing me for it – yet at the same time when I told them that my menstruation time was killing me, that my migraines felt like death warmed up and that I had no idea how they wanted me to go on living like this being told that I was “healthy” – I was labeled a drug seeker or someone who over dramatized her pain levels.

Back in 2004 when I expressed to my doctor at that time that I was having abdominal pain after eating in an area that was so bad I would be doubled over – and I pointed to where it hurt – she said it was impossible because there was nothing there to cause pain…..are you kidding me right now.  I am telling you I hurt and you are calling me a liar, to my face.  I have been treated this way my whole life and I finally have a neurologist and a primary care who believe me.

I am not someone who goes around liking the feeling that I am ill.  I don’t like to think that I have this illness or that illness – but when they cannot tell you whats wrong, and yet you KNOW there is – it makes you a little crazy some times.  I live in constant pain, I have heart palpitations, my muscles are stiff and sore – I have numbness and memory issues – I trip and fall over air – and did I mention I am only 33 years old.  and I have been this way for years.  I would have to say well over 10 years at this point.

I cry on my drive home sometimes, I even cry on my way to work too – I have a 45-60 min drive to work and so I have some time.  BUT – that will all be changing come January 2017 – more information to come on that later.  We will have a BIG change in our life soon that involves a location change and I cannot wait!

**September was full of Dr visits and more tests.  Turns out that the Lumbar puncture showed that I do not have the bands that they look for when diagnosing MS.  But I did have the restrictive bands used for diagnosing a rheumatoid condition.  So something like Lupus, sjogren’s syndrome, RA or many other things like that.  It is still an autoimmune disease like MS is, but a different kind.  Lupus does run in the family.  I had an MRI of my c-spine recently and awaiting blood work for the rheumatoid stuff now.  Then it’s off to see that doctor, early Nov its off to see my well women doctor for a well women check up that I have not had in 3 years.  We get to talk about taking out the nexplanon implant and what to do next.

When my Dr was reading the results and it wasn’t MS, I was a little shaken like well now what do we do, I have lost all my braveness, all my fight is gone.  But then she kept reading and she got to the part about lupus, and wouldn’t you know they are very similar to that of lupus and I match even better with those!  So now I have a new obsession – ME!  I started to cry and she told me – “you were right.”  Through my teats I managed to say it – “I knew it, I knew there was something wrong!  It’s still an autoimmune disease, and I was right!”  I had a good cry in her office and even she got a little emotional.  Its been a good walk her and I and I am going to further walk down this path with her.  Oh she also wants me to get a breast reduction, so I get to look forward to that too, yippy!

well, my dear readers – I will give you an update on my condition when I can, but for now  leave you with my regular sign off:

Peace, Love and Boxer Butts!

 

PS if you would like to I highly recommend that you check out Won’t stop Running – by A great Big World He wrote that song after being diagnosed with MS and it has become a bit of my own personal anthem.



Thus Endeth The Radio Silence….

So – my radio silence has been for a few reasons, #1 reason has been I have been one busy person!  After that the reasons involve health and life in general.

  • my potassium levels have gone up despite being on a restricted diet – means I retest in June and see where we stand.  Will also be tested for diabetes at that time.
  • Migraines have been so-so.  Getting adjusted to new medication and used to weather changes while on new medication.  This will be the first monsoon season I get to experience on this perticular medication.  Last year was the first for the botox so I am used to trying new medications during our rainy seasons.
  • trying to loose weight still is proving to be difficult.  As to that I have very bad fatigue and am very weak I really am having a hard time getting up and moving.  Plus its now 100+ outside – so YUCK!

We have been going camping about once a month here lately and its been amazing…I really have enjoyed the time with my husband, my in-laws and our fur kids.  The men did manage to even catch one small fish, that thye let go so he could grow up to become a bigger fish – but most of the time its just father son boding while “feeding the fish” as they have started to call it.  Alas I have yet to get them to take the gopro with them so I have yet to see any of their antics on video yet – but the stories they come back to camp with are very entertaining.

So I am looking forward to getting back to my writing, my sampling and my sharing with you all.  I have some things to write about so keep an eye out for some reviews to pop up here shortly…The next pinchme.com sample day is Tuesday the 14th at 12pm ET –  for those of you who have not signed up yet I highly recommend that you high tail it over there and go do that since you have some time left to do so.

I have received some tea samples that are super yummy and I will be sharing that with y’all along with a discount code and where to go order it on your own – they are an amazing company who know a thing or two when it comes to customer service so a big kudos to them.  I ordered a new tea pot just to brew the loose tea in because its so pretty as it brews – I know I am sucker for that kinda stuff, what can I say.  But I got it on sale with one day shipping on Amazon!  🙂

I will share with you as well as soon as I get new on my heath my dear readers, and I love hearing your words of encouragement and support as I go through all these times of uncertainty and change in my health and our lives.  I look forward to our next chance to share and I always look forward to hearing from you, my faithful readers.

Peace, Love and Boxer Butts!

 

Migraine Experience…

Excedrin has been working with Migraine sufferers like myself to put together a virtual reality to show their loved ones what a migraine “looks like” when one starts for them – it’s an interesting video – https://www.excedrin.com/migraine-experience/ – when I saw the commercial on TV the first time I broke down crying – I have always looked for a way to do that….

 

A personal note…

I would like to say how sorry I am for my lack of posts – My Brother-in-law passed away on the 11th of September and since then life has been very different.

  • In September, my In-laws, my husband and I all took an emergency flight to Oregon and spent 5 days with my brother-in-law’s Wife.  It was the first flight my husband has been on since sometime in the 90’s and it was the first flight we have ever taken together as a couple.  We have been on plenty of trips together but always in a car.

    image

    This was one of our fav places – we stopped here twice while were were there. Family owned and there were very friendly. I even bought a sweatshirt and a new Drink tumbler for work.

  • We have taken a camping trip and have started to plan a few more.  The original plan was to take one every month, BUT with Christmas and new years this month, plus it being abnormally cold in my part of the country this year for some reason – we might have to put off camping in December.  I am hoping that we can get a nice weekend in Jan or Feb but we might not do much till my Birthday weekend in March.  That has always kicked off our camping season anyways back when we were going to the dunes with the quads.  We would always go to the dunes for my Birthday.
    image

    View from the lake while Hubby and his dad were fishing

    image

    This kids is what we call a payphone….

    image

    Here are Dozer and Tuula out camping with us. Dozer has been camping before but this was Tuula’s first camping trip. And yes, that is me in my Doctor Who T.A.R.D.I.S. shirt.

  • I have been making so many gifts for everyone for Christmas this year that I might have yearn burn on a few of my fingers from it.  Just saying – y’all better love my efforts!
  • I still have a bunch of my homemade items from last years bulk Christmas gift making – so I am still gifting those.  And I am looking to add some new items to my list of things I can make.  My husband has made a few requests.  So I have a few things in the works….
  • We got another VW Micro bus – so now we have two – yes that’s right folks – two VW buses in our family.  His and hers’ and I couldn’t be happier.  So when we get it on the road and get to go to shows, I can bring my homemade hippie things with me and sell them out of our hippie bus – and up my hippie game to the next level!
  • And then there was my health, I have had migraines for a long time as you all know by now, but I have been felling worse and worse for a long time now.  I kept telling my Dr’s that something was wrong, but no one was finding anything.  I was cold all the time, tired all the time (and I don’t mean a little tired, I mean fall asleep standing up tired) I have no strength, very weak, no appetite, nausea all the time, but still over wt, heart palpitations, High blood pressure, Botox injections every three months for my migraines were getting to be too expensive…
  • So I am now on new Medication for my migraines – Good bye Botox! On a low Potassium, low sodium, low sugar, no dairy, and low-fat diet (already lost 15lbs since October)So then I found a new PCP because the last one I had after my other dr left the state was a joke – she never made time for pt’s and then refused to refill medications – it was a nightmare.  I had gone to the same clinic since I was a child (and maybe it was the best thing that had happened to me since I was just getting sicker and sicker anyways) and now I have the most amazing Dr – he ordered the most blood work I have ever had in my life – they took 9 vials of blood – yes I said 9 – they tested me for everything included food allergies – and found out my potassium was SCARY high – like where I was close to having to go to the hospital high.  No wonder my poor heart was freaking out.  But here is the kicker – my sodium was also high and those normally cancel each other out.  Yeah this Dr will soon find out much of a puzzle I am.

So – Still here, still getting samples and writing my reviews the best I can – have just been dealing with some depression and I have been keeping myself off the digital world and more in the real world.  And it is nothing off on you guys, I appreciate my readers, I really do, But I have to take care of me, and I have to take care of my family first.  And this has to come second in my life.

I hope you all had a very Merry and blessed Christmas and I hope you have a Joy fulled New Year.  I hope to post more often, but I also hope you can find it in your hearts to forgive me and to be understanding if I take time for myself and my family first and then get to my posting when I can.  Peace, Love and Boxer butts….

What is a migraine emergency?

By Tammy Rome—July 31, 2015

Two years ago I was doing some last-minute shopping the night before Thanksgiving day.  I started experiencing a prolonged aura that could have been the early signs of a stroke.  After an hour of progressively worsening symptoms, my husband took me to the local ER for evaluation. All the tests were clear, so I was sent home with instructions to return if the symptoms recurred. Fortunately they never did.  Even though it was a “false alarm”, that’s one ER trip I will never regret. Knowing the signs of a true migraine emergency is essential for every migraineur and caregiver.


People who say “Migraines don’t kill” have obviously never heard of these life-threatening complications, any one of which can be deadly if not diagnosed early and treated aggressively. We get so accustomed to tolerating the pain that it’s easy to forget how dangerous migraine can be sometimes. We take for granted that “…at least it’s not fatal” when we should be much more vigilant.

Migraines can kill.

There are four potentially life-threatening complications of migraine. Even though they are rare, learning to recognize the symptoms is essential for every migraineur. Knowing what to look for helps determine when it is appropriate to seek emergency help.
If you do end up in the ER with these symptoms, it is critical that you (or your caregiver) be able to clearly explain the symptoms that you are experiencing so that you get fast response to either rule out problems or get emergency treatment right away.

  1. Status migrainosus
  2. Migrainous infarction
  3. Persistent aura without infarction
  4. Migraine aura-triggered infarction

Status migrainosus

Any migraine attack that lasts longer than 72 hours should be evaluated by a doctor. Even if you are able to sleep through the attack or get temporary relief from taking medication, you still need to get it checked out.  Doctors will want to rule out stroke and administer treatments to break the cycle. Sometimes long-lasting migraine attacks are caused by other problems such as medication overuse headache. However, status migrainosus must be ruled out first.

Persistent aura without infarction

Anytime we have an aura that lasts for 1 week, we should get it checked out. Again, your doctor should rule out stroke before giving this diagnosis. On rare occasions, persistent aura without infarction can last for years.

Migrainous infarction

This is what doctors are trying to rule out in order to make a diagnosis of persistent aura without infarcition. It appears like a typical migraine with aura except that the aura lasts for longer than 60 minutes. When tested, an MRI or CT scan will show evidence of a stroke. This is distinct from the increased risk of stroke in younger patients (under 30) with migraine with aura.

Migraine aura-triggered seizure

The name is pretty self-explanatory. It is a seizure that is triggered by a migraine attack and typically occurs within the first hour during or after a migraine attack. Patients with epilepsy often experience migraine-like headaches just as the seizure is ending. When a seizure follows a migraine attack, is it commonly referred to as “migralepsy”, although the more accurate diagnosis is migraine aura-triggered seizure.

Of the four complications of migraine, only status migrainosus is seen in patients with migraine without aura. The other three are only seen in migraine with aura. Since none can be accurately diagnosed without at CT scan or MRI and time may be critical, the ER is best equipped to determine the level of your emergency, rule out life-threatening issues, and provide the right interventions should you experience one or more of these migraine complications.

Print off this article.
Memorize these symptoms.
One day your life may depend on it.

 

In addition to the situations listed above, please ensure that you discuss any symptoms that are new or different with your physician or a healthcare professional. While migraine symptoms can change over time, it is essential to rule out any other underlying causes for your symptoms.

30 Things About My Migraines…

30 Things About My Migraines…that you may or may not already know.

  1. My diagnosis is: Chronic migraine with and without aura.
  2. My migraine attack frequency is: Three to four times a week, and sometimes almost daily.
  3. I was diagnosed in: 2003 After having a seizure that got my Dr to finally believe I had something going on that wasn’t “just a headache”
  4. My combined conditions include: IBS and constant never-ending pain in head in neck since about 2007.  Hypertension
  5. I take: 5 medications:  3 each day for prevention (2-3 doses of each every day) and 2 medications to treat an acute attack.  I also take medication every night to help fall asleep, (lack of sleep is a big trigger for me) And Every 3 months I get 31 injections of botox into my head and neck.
  6. My first migraine attack was: My mom said I was around 4 when I started to complain about my head hurting.  But they really started to get bad when I was a teenager/young adult
  7. My most disabling migraine symptoms are: Pain and nausea both can be extremely debilitating, Unable to remember things or unable to find the words I need to describe what I need or how I feel.
  8. My strangest migraine symptoms are: Feeling of being cold, like the temp in the room is around 50-40F
  9. My biggest migraine triggers are: Chocolate (also causes hives), smoke, changes in sleeping patterns, skipping meals, fluctuating hormones, Weather, Stress…
  10. I know a migraine attack is coming on when: I get very cold, depressed, tired, dizzy, “shimmer” or aura (dancing lights, shadows, loss of vision in one spot)
  11. The most frustrating part about having a migraine attack is: Not being able to stop it.
  12. During a migraine attack, I worry most about: Stopping the pain, being a burden, throwing up, having a stroke.
  13. When I think about migraine between attacks, I think: I try not to think about migraine between attacks, but if the thought creeps in I hope my medication will abort the next attack
  14. When I tell someone I have migraine, the response is usually: Met with lots of questions, or I feel like they don’t believe me.
  15. When someone tells me they have migraine, I think: I understand and wonder if there is any way I can help them.
  16. When I see commercials about migraine treatments, I think: More research is needed, and they make it sound like “just take a pill and all will be better”
  17. My best coping tools are: Ever changing
  18. I find comfort in: PJ’s, dark room, my dogs and my husband.
  19. I get angry when people say: At least you can’t die from it.   it’s just a headache.  I HAD a migraine (to me migraine is not something you have and don’t have)
  20. I like it when people say: They want to know how they can help me, they want to know what my triggers are, they say they believe me.
  21. Something kind someone can do for me during a migraine attack is: Be kind to me, bring me water, be understanding that I can’t communicate in the best way
  22. The best thing(s) a doctor has ever said to me about migraine is: “I also suffer from migraines”
  23. The hardest thing to accept about having migraine is: My limitations and how different my life is with migraine
  24. Migraine has taught me: Life is not about fairness, but life is lived.
  25. The quotation, motto, mantra, or scripture that gets me through an attack is: “This too shall pass.”
  26. If I could go back to the early days of my diagnosis, I would tell myself: It’s going to be a long haul, but someone will believe you one day.
  27. The people who support me most are: my husband
  28. The thing I most wish people understood about migraine is: It’s so much more than a headache.  It affects my whole body.
  29. Migraine and Headache Awareness Month is important to me because: It’s vital for public to understand how debilitating migraine can be and how negatively it can impact someone’s life.
  30. One more thing I’d like to say about life with migraine is: Finding a good support network is an important part of a migraine treatment plan.

Lets try this again…Weight loss…

So – I have done this so many times that I have lost count – I have been on and off a weight loss journey all of my adult life.  As a teen I was under weight, had to eat my lunch in a class room so they could make sure that I was in fact eating.  Hit about 21 and BAM – no more skinny girl.  I had a seizure after a car accident in 2003, they discovered that it was caused by low blood sugar and not epilepsy.  I had another one in 2005 after skipping a few meals due to getting ready to go on a trip.

By 2005 my weight had gone from 135lbs (2003) to 160lbs, they ran a bunch of tests and blood work, everything looked fine.  But I knew that after my second seizure that I panicked and started eating all the time to prevent another one.

My Job doesn’t really have much activity away form my desk so dropping the weight

Per my Shealth app on my phone

Current Status: 06/01/2015 7:21am

  • Heart Rate: 61bpm
  • SpO2: 97%
  • Stress: Low/Med
  • Didn’t weigh in this morning so last wt was done 05/04/2015 and was: 205.4lbs
  • Goal Wt 160lbs

Breakfast today was a smart one shake:

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Directions said to leave it at room temp for 30 minutes and then enjoy.  Took a little longer than 30 minutes, but it is kinda cold in my office.  So far I can say I really enjoy it.  A little texture issue with the seeds from the strawberry (but I have an issue with them in general) the flavor is really good, I just hope that it sticks with me.

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