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 )
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