To the Negative Nay-Sayers and Migraine Disease Bashers

This site is not intended for Diagnosis or medical purposes. This is only an account, a diary of sorts of my personal journey and this site is newly created (Nov 2012) and a work in process. There are a couple of other sites that are older and more established since early  September of 2012.

My Migraine journey has been long and hard-fought with many obstacles, of which include many people, including those close to me, There always has been a stigma attached to Migraine Disease that it’s “just a headache”. If it was just a headache I’d be doing cartwheels and going on my merry way. I’d love nothing more than to have a plain old run of the mill headache. But I’m surrounded by family and loved ones that have a hard time accepting the diagnosis of Migraine Disease which is an Invisible Chronic Illness that has no cure. Sometimes it can take over 25 years of experimenting with hand me down drugs that were originally designed for other conditions to try to find the right combination that will attempt to control the disease but it will never cure it. And if you ever find the combination the body over time will adjust to that dose and you have to work on the doses again or start over again. People that don’t experience this disease 1st hand just cannot comprehend this and cannot come to terms with this. They just DON”T GET IT. And it’s a constant struggle. (No “Step” I’ll call you, this is not whining, this is called complaining. Learn to decipher the 2, would you please and get on w/your life)

To explain my migraines: Excruciating pain on 1 side of the head most days it doesn’t go down below a level 6 (if it does I dance a jig)  and most days it’s a 8-9, stabbing throbbing-behind the LH eye it’s an intense stabbing pain, the eye is constantly watering-they call it ice pick I call it jackhammer, the LH temple is throbbing, stabbing pain to the LH ear-the LH ear rings and pops-the whole scalp is very sore and tender to touch-the back of the neck where the skull meet is extremely sore & painful-neck is stiff & painful-extends to LH shoulder-pain is sharp and radiating, throbbing. LH eye is partially blind in peripheral vision, any type of lighting makes sharp stabbing pain more intense behind eye and in head. I will have partial numbness in the LH cheek of my face-it will run from the corner of my eye to my jaw. I’ve been trying for the past 2 1/2 yrs to get really dark sunglasses and have failed. At times I have to wear them in the house when the sun is too bright and I have to keep the curtains pulled shut. Going outside is a nightmare. Any kind of strong smell, or faint smell makes my stomach super sensative, off to the toilet even if I take my anti nausea med Zofran they give cancer patients. The smell of bacon frying, scented soap, scented lotions, or laundry soap, hand soap-the house is made scent free as possible because even if my migraine is down to a 6 if I smell something it will trigger a stronger migraine. Going out in the stores I have to stay away from isles that have laundry soap and scented candles because my stomach will start to roll and I have to get the heck out of there. Sometimes if I think I’m doing ok and in the clear someone will reach in front of me and it’s like they put on a gallon of cologne of perfume and I have to make a run for it. Going out for dinner if were inside it’s ok because most places are smoke free now. This past summer this one restaurant was slow so we went on the patio. There were only 2 girls on the opposite side so we thought “Ok” so we sat down and I was sipping on my water. Pretty soon cigarette smoke came drifting our way. Had to get up and leave. I get extremely dizzy with poor coordination. Some of these signs mimic stroke symptoms and they are worrisome but my neuro and Teri Robert from tell me if I get a headache like one I’ve never had before to seek immediate medical attention.(No “Step” I’ll call you, this is not whining, this is called stating the facts. Learn to decipher the 2, would you please and get on w/your life)

There are a lot of times I cannot form or say a coherent sentence-I cannot even put a sentence together in my head let alone say one out loud. I get extremely confused and flustered. If I try to do something I get lost easy and I’m banned from driving just because of that. If I’m baking and follow a recipe I have to line the items up in a row as they are listed on 1 side of the countertop and as I use them put them on the opposite side of the kitchen because I so easily and often lose my place and get distracted. And to double-check myself I have to mark the item off as I go. A few times I will put chicken breasts on the grill and I will get distracted or just forget about them and have burnt chicken. That has happened more times than not this summer and is very upsetting because I’ve never burnt food before. And I’m getting more and more forgetful about other things too and this is also upsetting. I can see an occasional thing here and there but multiple things every day is not acceptable and it’s upsetting. (No “Step” I’ll call you, this is not whining, just stating facts-you can check out and see others too have voiced the same if you dare educate yourself)

Then there’s the food triggers. Everything is a potential hidden no-no. I react to MSG, Soy and Nitrates. Then over the years to learn there are so many hidden names for MSG and Soy I cannot learn them all there are too many so have to take 3 print out sheets to the grocery store. Well that got to be too much so I pretty much go to the point I have to make everything for myself fresh-no frozen, no canned, no prepackaged and no injected or “flavor” added or “flavor” enhanced. So no chicken broth or canned soups-they have MSG and even if they say No MSG added you read the fine print Yeast protein or Yeast extract is a hidden form of MSG. THEN to find out by Diamond Headache Clinic cannot have any foods that contain high concentrations of Tyramine-so more foods to add to the list-nuts, aged cheese, spinach-too many to list. (No “Step” I’ll call you, this is not whining, just stating facts-you can check out and see others too have voiced the same if you dare educate yourself)

Now to the person that left me a comment that was negative saying I was “whining” I am NOT whining. This is MY webpage and it’s MY diary and MY account of what “I” had to go through and what “I” had to endure to find out what “I” first was “Thankful” for, Of all things that was what I was whining about? Whatever. But this page is what I had to do to find out my migraine triggers because my list is extensive and also the lack of support that so MANY migraine sufferers endure, not just myself. If “Step” I’ll call this person thinks I was whining because I was getting little support then this person must call an awful lot of migraine sufferers “whiners” because there are an awful lot that do NOT get a lot of support. Then again there are a lucky few that do. But there are a lot of use that have suffered 20+ years with this disease and have learned over this time frame what to give thanks for and we do NOT consider this to be whining! So this “Step” will not disclose full name or email can take that and shove it where the sun never shines. I talk about “my” life. If you don’t like it don’t read it. End of story. Some people. Anyway, Moving along.

It’s been since approx 1987 since I had my 1st migraine. In 2010 they became daily intractable migraines and not from medication overuse. I hate taking medicines and sometimes I hold off too long taking my abortive and sometimes I admit I’m to blame if they get out of control. With my recent neuro I’ve gotten better with taking them on time so I cannot be accused of being a drug seeker or abuser-that I’ve made sure of.

But I have tried all kinds of alternative methods-acupuncture, acupressure, pressure point therapy, chiropractic, holistic, biofeedback, meditation, yoga, meditation, cupping, massage therapy, progressive relaxation therapy, guided relaxation therapy and mediation, Botox, vitamins, stretching and exercise,  herbal. Heck I’m ready to go to New Orleans and try Voo Doo. I’m trying binaural Beats brainwaves stimulation again, for the 3rd of 4th time. And even therapy. My insurance didn’t cover the 1st round of Botox and money is pretty hard to come by. Now that I just got Medicare trying to find out if that will cover Botox to try it again. But my current neuro I’ve had him since Oct 2011. He use to suffer from migraines so He’s had experience and I get empathy from him as well as understanding. He is nothing at all like my last 2 neuro’s, counting the one from the Diamond Headache Clinic in Chicago Illinois. He works Diligently with me and has tried multiple medications for preventives and abortive. I’ve taken in articles I’ve found online and he’s always open to discussing them and we debate if it’s a good thing to try now or later or in combination with such and such.     He was referred to me by my therapist with my former neuro was treating me like I was wasting his time and he had more worthwhile things to do and when I’d get a migraine cycle he would prescribe me steroids. I hate steroids. I react to them horribly. This neuro knows how I detest them and has promised not to prescribe them unless it’s a last resort. The former neuro was prescribing them like the were M&M’s instead of trying to control the problem by trying different medications he’d just toss out steroids and go back to the same preventive I was currently on. I detested him but loved his nurse. Gina. She was an angel. How she got stuck with Dr. A-holio I have no idea. My current Neuro has a dimwitted nurse. If I could only switch nurses it would be the best. LOL, if only. (No “Step” I’ll call you, this is not whining, just stating facts-you can check out and see others too have voiced the same if you dare educate yourself)

I hope everyone had a great Thanksgiving Holiday. It was pretty rough here. My husband started demolishing our kitchen floor on 11-14 so the couch behind the kitchen island got moved 1/2 way into the living room area up to the fireplace so he could take up the laminate flooring. He ripped up the 1st layer of sub floor which is 1/2″ after taking up the ceramic tile (part was coming loose) and found black mold on that 1st layer of flooring. We had a stand up water cooler that holds 5 gal jugs of water & it was leaking all summer & was not noticed until the leak made its way thru the basement drop ceiling. By that time the floor was slowly starting to buckle and tile in that area coming loose. But when that black mold was exposed to the air it took my breath away-I gagged, eyes watered, coughed, gasped and I felt like my air was trapped in my lungs. I had trouble breathing until I backed away. I had no idea black mold affected me that way. After he tore up the 1st layer it went down to the main sub floor 3/4″ and he had to saw that up. Black/gray saw dust went everywhere. He did that in 2 sections of floor. By the 18th he was done sawing, ripping and prying up flooring and was ready to start putting down replacement sub floor. My migraine meter was pegging to 7-8 but he had me hauling 8×4 I think 3/4″ heavy presswood particle wood onto saw horses on the deck so he could cut and we took inside the sliding door and placed so we could then place through the whole kitchen 1/2″ cement board as the new sub floor before the new tile could go down. In the meantime I had to clear out the Kitchen pantry so those shelves could come out and that floor ripped up to, only the 1st sub floor as that was getting re-tiled too and new cement sub floor. The house is a war zone. Boxes all over the great room area with kitchen pantry items. I hunt every day in the boxes for what I need. And every day during the day I try to keep up w/the dust w/those hand-held swifter. By Wednesday he still hadn’t gotten the cement board all down and I had to bake pies for Thanksgiving. Thank God we were not having it here. Ted’s nice sister that lives 20 min away was having it at her house. But I was up until 2 am making pies by the time he was done for the night messing w/the floor. (No “Step” I’ll call you, this is not whining, this is called complaining. Learn to decipher the 2, would you please and get on w/your life)

My migraine escalated to a 10 Thanksgiving day and heads down in the toilet. My meds were not touching it. My husband was all ticked off at me because I could not go to Thanksgiving dinner. He wore me ragged w/the floor project and the heavy lifting and black mold I was trying to dust-up and vacuum and late nights and late meals because he would not let us stop until he got to a certain point. I was doing all of this w/a high level migraine and keeping my mouth shut ( yes “Step” I will call you I did not and do NOT whine) and didn’t say I had to lie down because my head was ready to explode. He got frustrated and barked at me a few times cause “didn’t you see this or hear what I said” to which I flatly stated “no I cannot hear out of this ear or see out of this eye they are affected by my migraine-remember I get those blind spots and I get the ringing and popping noise in this ear when my migraine level gets this high” then he mumbles and goes back to what he was doing. and here we go again and I have to remind him “Look, you’re going to have to do this on my RH side so I can see and hear better because I cannot see or hear on my LH side due to my migraine-kapish” then he just looked at me like I spoke Yiddish to him. So I had to explain it to him again in slow moe and told him I cannot draw him a diagram right now he will have to understand because the only sign language I know involves the middle finger. (No “Step” I’ll call you, this is not whining, this is called complaining. Learn to decipher the 2, would you please and get on w/your life)

So actually my Thanksgiving started out pretty bad but then when he and my daughter left and my zofran kicked in and my sea bands in place I took my 2nd treatment of Sprix and 15 min of oxygen at 6 liter for 15 min, ice pack on the LH side of my head, heated rice pack on my neck. I snuggled up with my little Paco buddy and slept and  it was so peaceful. Until they got home somewhere between 5-6 pm. By then I was down to a 7. I was still dizzier than heck, and sometimes I get that tunnel vision thing-how you feel when you can’t see anything but what is in front of you. It’s hard to describe but it’s almost like your peripheral vision is gone but your vision in front of you is almost swirling but not quite. I’m glad that doesn’t happen, but when I get dizzy enough and about to play judo with the floor it does swirl and spin and then I go crash boom on the floor and both ears are buzzing and my face feels clammy. So I sit there for a while getting all kinds of puppy kisses. Some times I’ll lie down and put my face to the cold laminate flooring because it feels soothing until the swirling stops. But most of the time I see a blurred double vision. I’m past due on getting my eyes checked but with my migraines so frequent and on the severe side and all the visual disturbances is it really worth it to get them checked? More than likely on the day of my appointment I’ll have a migraine w/visual auras and disturbances and my prescription will be based on that day’s bad vision and I’ll get the RX filled and then on another day those glasses will be rendered useless by another bout of bad visual auras. (No “Step” I’ll call you, this is not whining, this is called stating a fact. Learn to decipher the 2, would you please and get on w/your life and leave me alone would you please)

When my husband and daughter came home from Thanksgiving they decided to go to the UP Mall which is about 40 min away to do some pre-Black Friday shopping. He ordered an out of stock French Door refrigerator to be delivered by Dec 9th. He’s hoping to have the tile and kitchen closet pantry done by then. I hope and pray so then I can try to get some serious dusting and vacuuming done and get the house in order after that. Our old frig has been acting up. It will freeze in the back and not so cold in the front. Time to go. And the dishwasher has not been cleaning well and making a sound like the motor is going out. So he ordered one of those too for store pickup.

On Sunday he started to lay the tile. My head was finally down to a 6 by then. Still pretty painful but my blind spot almost gone but double vision still there but not as severe and still somewhat dizzy. At that level I still have ear popping and ringing but not at the severest level where I cannot hear at all out of that ear. But I still react to smells, sound and light. The smell of that thin-set was pretty gross and my husband was looking at me w/that usual “You have 2 heads” look. He will just never get it. A few fellow migraine sufferers penned it so correctly when they said it best-you have the keen sense of smell like a dog, meaning you can smell things more acutely than other people and from farther distances. And sometimes, and it’s been proven, in the beginning stages of the migraine called Aura Stage there is Olfactory hallucinations where you can smell things that are not there. Check out this link there have been many times I can smell cigarette smoke when no one in this house smokes and our nearest neighbor is 1 1/2 acres away.

So in closing I guess my point in this post is that you cannot “judge” a person and call them a whiner when I’ve been fighting tooth and nail and still fighting to this day to this very minute to combat this Migraine Disease and the Comorbidities that come with it, that exacerbate it and make life pretty hard. But then as the saying goes what doesn’t kill you makes you stronger. In saying that I should remind “Step” as I’ve been calling my critic who calls me a whiner that Migraines over time the more frequent you have them the more likely they are to cause migraineous stroke, so they can be deadly. So in closing they are not “just a headache” and we who suffer this disease are not “whiners” we are trying to get our stories out to others and as a community to support each other and uplift each other and if you “Step” are not a migraine sufferer you do not understand and therefore have no business being on blogs like this and have no business judging people who suffer this disease.

So kindly keep your comments to yourself because you’ve already proved your ignorance once and making another comment would prove you are downright stupid. And if you chose to comment or judge again I might be tempted to post your email address online for all to see. We do have a right to free speech, this is MY site last time I last checked and I can freely post what I see fit and this is the truth as I see it to the best of my ability and to my recollection. If you do not agree then move on along and ignore and forget it. But I do not appreciate being attacked for how my life is and how it’s being played out. You have no right to judge me or call me out for it. I will not stand for and will not allow being attacked. Not in person and definately NOT on my websites. You attack me then expect it in return.

Until next time to my fellow kind hearted and deserving Migraine sufferers I wish you well. I wish you pain free days and make the most of them when you can get them and to cherish your loved ones. And do not tolerate attacks by foolish idiots who know not what they speak of for they are foolish.

In closing I find this so appropriate in response,

Ephesians 5:13, Light exposes the true Character of everything

4 thoughts on “To the Negative Nay-Sayers and Migraine Disease Bashers

  1. I am no longer sure the place you are getting your information, however good topic. I must spend some time learning much more or working out more. Thank you for wonderful info I was looking for this information for my mission.

    • Thank you so much for your positive feedback and for visiting my page. I’ve gained all my experience from suffering and researching for over 25+ years. . Blessings to you for a pain free day. Julie

  2. Hello, you used to write wonderful, but the last few posts have been kinda boring… I miss your super writings. Past several posts are just a little out of track! come on!

    • Thank you for visiting my site. I’m sorry if my blogs disappoint you. I do suffer Daily Chronic Migraines as well as severe Fibromyalgia muscle and nerve pain and the pain level does not fall below a 5-6 for the Migraines, and the Fibro Flare-up I’ve been experiencing has forced me to seek PT through my doctor and stronger medications and alternative therapies, so the Migraine Fog as well as the Fibro Fog do play with my mind that is already wracked with pain. I try my best as blogging to interact with people as the benefits and commentary are very therapeutic. But I write on topics that are first and foremost a monthly theme from the Migraine Carnival Blog Posting. Then I write in between for things that come up and I’m often asked about, or to share items I’ve come into contact with to help with chronic pain as it’s a wide topic of discussion on my Chronic Migraine Awareness support group-people are struggling to come to find tools and tips and if I come across something that helps me I will share it as it’s not often postings you find online that lists all these alternative tips and tricks to incorporate into daily chronic pain management-the support just isn’t out there. If you have a particular subject you wish to discuss then send me a message. Otherwise I continue to write on what I have “personal” experience and knowledge on. Blessings for you to have a pain free day. Julie

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