Migraine Disease-Why I’m not always as open about it as I use to be. My spouse and his family just don’t “get it”.

My spouse and most of my extended family really don’t listen to me and are not that supportive. I get criticized a lot and told to do this, try this-yada, yada, yada. I only have a few close friends and a few family members that will listen and support me-they don’t criticize and they certainly don’t tell me I’m not doing enough.  With those that have criticized me and don’t listen to me I’m starting to shut them out and build a wall  between myself and them. This has led more to my depression and isolation that was already there to begin with due to this horrible disease.

I just recently turned 50. My only child just turned 27. I’ve been married for a little over 30 years. I have been on a very long, painful frustrating and very misunderstood road. Filled with lots of trials and lots of experimental therapies-through traditional medicine, holistic and alternative. I call myself a Professional Lab Rat. I have spent countless hours of research online until I think I’ve become permanently cross-eyed and read a lot of books as well. I have lost track of how many doctors I have gone through, much to my dismay. I have also tried the Diamond Headache Clinic in Chicago Illinois for about a year. They ran tests, you know, your standard CT’s, MRI’s, blood work and urine tests. All came back showing nothing out of the ordinary. Well, the MRI showed a sinus cyst that they said was of no concern. 


But I have suffered from these debilitating migraines for over 20 years. In May 2010 they progressed into daily intractable Migraines that would make you want to ram your head through the wall and roll around on the bathroom floor crying with no relief in site. Nothing seemed to work anymore. Such agony and paralyzing pain. It was indescribable and to try to tell friends, family and co-workers was like talking to brick walls. No empathy, no understanding. I had gotten the standard comments like “take an aspirin or Excederin and just get over it” or “its just a headache snap out of it” or “it’s all in your head”. Check out this link:
http://migraine.com/blog/top-10-myths-about-migraine/ Well, duh, of course it’s in my head-the pain in my eye was such an intense throbbing, poking, searing pain and the partial blindness that came from it, not to mention the throwing up, sensitivity to light, partial numbness in the face, watering of the eye and sometimes the eyelid would droop, tunnel vision if not total loss of vision in the one eye affected. Super sensitive to smell and noise.  (gee, I wish these blog sites had spell check 🙂


It would get so bad that I had a hard time during and attack of forming coherent sentences, stumble like I was drunk but would be stone cold sober. If I was at work when one would strike of course they would not be happy about it but they’d let me go home-who would want an employee there getting ready to puke in their trash can or run to the bathroom and be held hostage by the toilet. And even if I was not getting ready to have an attack if someone passed by that would splash on an entire bottle of cologne or aftershave would set me off! Even to this day if my husband wants me to fry up some bacon, ewww super gross, the smell of that sets me off. I could not even pump my own gas when I was able to drive because the gas fumes were also a trigger.


The office lights they use are really awful too for me. I can tolerate normal light bulbs but those florescent ones for some reason after a few minutes my eye starts twitching, then throbbing and on comes a migraine. I have yet to find really dark sunglasses for when I venture outside when the sun is out and bright. Yep, I think I’ve become a vampire-shunning the bright light as much as possible. I had suffered really bad hormonal migraines when the monthly cycle hit so they put me on low dose hormone therapy a few years back to stop my menstrual cycle. That has been a little help in that area. I had wanted to have a voluntary hysterectomy but then read several articles online that would make migraines worse in some cases so that was taken off my “to do” list of migraine preventives.


My prior Neurologist did the Botox injections once they were approved by the FDA. The insurance did the precertification and sent us the letter and everything. This was approximately 2-3 years ago. It didn’t help much but I think that the fact my husband took me out shopping right afterwards for faucets and sinks and we did a complete countertop restoration that week for the kitchen and both bathrooms and had to hustle because it was the week of Christmas and we were short on time. So there really was no time to relax and let it set it. Then the aftershock to find out the insurance was not paying or covering it anyway. We appealed 3 times, 1 time to the Indiana Insurance Comission but to no avail. We were out-of-pocket $1500.00.  I really, really think had I been given a chance to rest and not been put through a ringer of moving cabinets and old countertops and doing extra heavy-duty cleaning and more moving on top of the stress of making and baking extra for a large family holiday meal (you know all the extra stress that goes with that because I had those shots the week before Christmas and this project was done the same time) the shots might have had a better chance of working. But who knows? Has anyone out there had good luck with those shots?


In the meantime while all this was going on I was on temporary disability from work starting May 2010 and it extended to full disability. I filed with SS in October per my Family MD. Of course I was denied May 2011. I got a really good appeals attorney to help me file my appeal. In April 2012 I won my appeal and got my SSD. So I got my back pay from Nov 2010 to April 2012 and then started getting my regular monthly SS payments. It’s not much but it helps, which is better than nothing. With my past and present medical history and all my documentation my attorney said I had a good solid case and the fact that my therapist showed up for my hearing sealed the deal for me. I was so lucky in that department.


But my Trials still go on. The neurologist I have now has also suffered migraines so he has empathy and knows what it is like. The neurologist I had  before him was a real jerk. His attitude came across to me like I should grow hair on my chest and “act like a man and get over it”. I really could not stand him! I would call him Dr. A-hole. My new Dr. I call Mr. Nice Guy. Dr. A would  prescribe me steroids at the drop of a hat when I get those bad cycles. I hated steroids cause I react to them really bad. Dr. Nice Guy will not prescribe them unless it’s a last resort, but he’s been working really hard with me. He doesn’t treat me disrespectfully. My last appointment last week as my new abortive he prescribed me oxygen therapy and Sprix nasal spray. The Oxygen has done some good as is the Sprix (new on the market). It’s short-term but I’ll take it. It’s still a long  ways to go but I’m in it for as long as it takes.

  (  I like to be more open and more willing to help others who suffer from the same affliction that I do. We all share the same common bond, we know where we’ve been, what we’re up against and what struggle lies ahead. We all have empathy for each other. We do NOT roll or eyes at each other nor do we turn a deaf ear to a fellow sufferer. I’d much rather get advice from a co-sufferer than a non-sufferer who knows not what they speak of because they have not been there and they have not experienced they hell we’ve all gone through. Call it the sisterhood of Migraine Hell. If you know not what you speak of 1st hand keep it to yourself. That is why I jumped at the chance to do this web blog carnival. Better to share experiences and gain knowledge from others that are in the same boat as I am )
 

Romans 15:4
New King James Version

For whatever things were written before were written for
our learning, that we through the patience and comfort of the Scriptures we might have hope

68 thoughts on “Migraine Disease-Why I’m not always as open about it as I use to be. My spouse and his family just don’t “get it”.

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    • Thank you so much for your positive feedback, your kind words and for visiting my page. Blessings to you for a pain free day. Julie

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    • Thank you for visiting my site and for your positive feedback. I’m glad you found my information useful . Blessings to you for a pain free day. Julie

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    • Thank you so very much for your kind words and for visiting my site. It’s interacting with people like you that make it all the more worthwhile. Blessings to you for a pain free day. Julie

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    • Thank you for visiting my site. I don’t strive to please everybody-just myself, I only write on what I have experienced and what I know based on my past and present journey thus far. I justify my opinions to myself and God first and foremost as all information in my posts are true and unfaltering-I stand behind each and every word. I am confident in what I write because I have passion about sharing what trials and tribulations I have endured, and I do so to help others who are going through the same trials now. Migraine Disease is so stigmatized that more and more of us are starting our own blogs to communicate the same frustrations and anguish. I can connect with others in the Chronic Migraine Disease community and my views are validated as others too experience the same thing and I validate theirs as well. Maybe my views are radical because you have not obviously experienced a chronic debilitating disease and as such I’m surprised you’d visit and comment on a site that you don’t have the education and knowledge to back up your argument. I wish you a good day and I hope you continue to search online and find blogs that are more in your area of interest and needs. Blessings.

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    • Thank you for checking out my site. For WordPress I’m using the free version and it has all the templates you can apply to customize it and you can also upload your own photos to personalize your page and make it your own. I’m new at this and never hosted or wrote a blog before and this is pretty easy to navigate. Have a go at it and you will have a blast. Blessings to you for a pain free day.

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    • Thank you for visiting my site, your kind encouraging words and for your positive feedback. Blessings to you for a pain free day. Julie

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    • Thank you for visiting my site, your kind encouraging words and for your positive feedback. I consider it a true Blessing to blog for such appreciative people. Blessings to you for a pain free day. Julie

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    • Thank you for visiting my site, your kind encouraging words and for your positive feedback. I consider it a true Blessing to blog for such appreciative people. Blessings to you for a pain free day. Julie

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    • Thank you for visiting my site, your kind encouraging words and for your positive feedback. I consider it a true Blessing to blog for such appreciative people. I have only been at this a few months so I am learning. I thank you in advance for your patience. Blessings to you for a pain free day. Julie

    • Thank you for visiting my site, your kind encouraging words and for your positive feedback. Blessings to you for a pain free day. Julie

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    • Thank you for visiting my site, your kind encouraging words and for your positive feedback. I consider it a true Blessing to blog for such appreciative people. Blessings to you for a pain free day. Julie

  14. Thanks for your handy post. In recent times, I have come to understand that the actual symptoms of mesothelioma cancer are caused by the build up of fluid between lining of the lung and the breasts cavity. The disease may start from the chest location and pass on to other limbs. Other symptoms of pleural mesothelioma include losing weight, severe inhaling and exhaling trouble, fever, difficulty swallowing, and irritation of the face and neck areas. It ought to be noted that some people existing with the disease never experience almost any serious signs and symptoms at all.

    • Hello. I truly hope and pray that you or a loved on is not experiencing mesothelioma cancer. Cancer is a terrible, terrible disease and is also one of the many “invisible” illnesses that needs to have light shed on it. Maybe with your knowledge you can start your own free blog on WordPress and get the information out there as it is really needed. Thank you for visiting my site and for your positive feedback. Sending you prayers and blessings for a pain free day. Julie

    • Hello. Thank you for your positive feedback and I hope to continue to post useful information that I’ve gained over the years to help others. Blessings to you for a pain free day. Julie.

    • Hello. I do a lot of meditating and soul searching. Also I dig for a lot of information online via support sites and my fellow bloggers. Also I have gained some useful experience over the 25+ years I have suffered this and I share it in hopes that it may help someone or anyone to make their lives better. I’m am trying to learn more and gather more info to share and hope it’s of use to you. Blessings to you for a pain free day. Julie

    • Hello. I’m glad you found my website too and that it helped you in some way. Thank you for your positive feedback and I hope to continue to post useful information that I’ve gained over the years to help others. Blessings to you for a pain free day. Julie.

    • Thank you for your positive feedback and for visiting my site. I’m glad you liked it. I follow a lot of other blogs and sites and over the years have gained some knowledge and hope to share as much as I have learned with everyone to make it easier on others. I hope I can continue to post information in the future that can help as well. That is my goal-to share what I’ve learned on my own and through many other sufferers who are a great value to me. Blessings to you for a pain free and wonderful day. Julie

  15. I simply wanted to thank you quite significantly all over once again. I’m not positive the issues I might have accomplished devoid of these aspects shown by you on such issue. It had been a genuine distressing situation in my view, nevertheless taking note of a specialized way you resolved the problem forced me to jump with happiness. I’m just delighted for this assistance and also hope you definitely know what a potent job that you just are carrying out instructing most people thru a blog. I’m certain you’ve got in no way come across all of us.

    • Thank you so much for your very positive feedback and for visiting my site. I like to share what I’ve learned in the past 25+ years of suffering from this disease so that some of the tips may help others. That is it in a nutshell-to help others and to share. Plus the Blogging is very therapeutic for me. I hope I can continue to post more information in the future that will be helpful to you and to others. Blessings to you for a pain free and beautiful day. Julie

    • Thank your for visiting my site and for your positive feedback. I am so sorry you have to deal with these issues as well. I hope that with time, patience and intervention from a higher source we get some relief soon. Sending you Blessings for a pain free day. Julie

    • Thank you for visiting my site and for your positive feedback. I am so sorry to hear your are suffering as well. I hate that others have to suffer and I wish I could wipe away everyones pain. Blessings to you for a pain free day. Julie

  16. I really love your website.. Pleasant colors & theme. Did you create this amazing site yourself? Please reply back as I’m attempting to create my own personal site and want to learn where you got this from or just what the theme is named. Cheers!

    • Hello. Thank you for visiting my site. I used WordPress free version and just customized the page with images I had on my PC. It’s pretty easy to customize what you want as in the way of Widgets. They guide you along as you set up your account. I’ve been happy with it so far and this is all new to me as I’ve only been blogging since late fall of 2012. Best of luck to you and Blessings for a pain free day. Julie

    • Hello. Thank you for visiting my page and for your positive feedback. I used WordPress free layout design and uploaded my own photos. It’s pretty easy to do for a beginner like me 🙂 Blessings to you for a pain free day. I am using the Dusk to Dawn theme. I honestly cannot remember where I got the pics of the angel and the white horses. I’m sure it was off a Google search as I utilize that almost daily. Cheers. Julie

  17. I’m more than happy to uncover this great site. I need to to thank you for ones time for this wonderful read!! I definitely savored every little bit of it and i also have you saved as a favorite to see new information in your web site.

    • Thank you so very much for visiting my page and your wonderful feedback. I’m glad you enjoyed it. Blessings to you for a pain free and happy day 🙂 Julie

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