Saturday, September 15, 2012

Talking about Migraine Disease-A tiny bit of progress to report.

 I thank God that my practitioner has found a formula that is finally helping me to gradually get in a little more sleep night after night. After the past several months of suffering major sleep depravation I call it a miracle. She prescribed me Vicoden, which I was leery of at 1st, but at this point I was desperate to try anything. So I have a 5mg dose at which in the am I take a 1/2 pill then at bedtime I take a full pill. This is the start of my 2nd month on this regimine. Also as of the end of August my neurologist prescribed me Amitriptyline I take at bedtime at a dose of 100mg, so I've been on that going on 2 weeks now. That is to help with sleep and also works as a migraine preventive as well as antidepressant. So I do beleive those are finally helping with the sleep issue.

I am not noticing much effect on the pain from the migraines though. I guess it might take longer for the Amitriptyline to work on that plus the other medications I'm on. I'm still on the 200mg Topomax for migraine prevention as I have been for the past several months and wonder if that should be adjusted? How high can that go I wonder? Is anyone out there on Topomax as a migraine preventive and how high is your dose? I tried Depakote and I got the side effects of rapid weight gain and hair falling out so my pior neuro took me off it, but I was on it for about 2-3 months and noticed no effects anyway.

I avoid taking pain meds when I get migraines at all costs because I get them daily and I hate to get caught up in those rebound migraines. The Diamond Clinic I went to in 2006 accused me of over-using pain medication so I guess that is why I started cutting way back on my abortives-that and because the insurance company will not refill your medications but once each month. So I would take my abortives for 3 days on then I would go for 3 days without and on those 3 days without any pain medication it would be pure torture. I would lie in the bathroom floor crying and wanting to bash my head into the wall to see if it would aleviate that pain or make it go away. I'd use ice packs upon ice packs and seclude myself in total darkness and quiet. I didn't want to be touched, talked to. Did not want to eat, drink, smell or see anything let alone hear anything. That would go on for 1, 2 or 3 days. Abusing pain medication-I would show them. Ha, I only hurt myself more. They would never believe me. I stopped going there after a year.

But I kept that regimine to this day. It's probably the wrong thing to do but I'll be darned if anyone will ever accuse my daily migraines be a result of medication over use! Stubborn, yep, I'm stubborn. And when my current neuro gave me an RX for a pain med to break a real bad cycle that contained Oxy in it this past March, well I reluctantly filled it. It had 90 pills. I took it back to him the end of August it still had 30 pills in it and told him to destroy them for me. I was too scared to use them and when I did I cut them in 1/2 and I didn't want them around anymore. I do not abuse pain medication. Heck, I'm not happy about taking preventives but I have no choice-I can't do without them.

Then I have friends and family that tell me that these medications are doing no good, that I need to get rid of them all and just go medication free! Well, you know, that would be nice in a perfect world where migraine disease, depression and anxiety didn't exist. But we don't live in a perfect world and these conditions do exist and I have no choice but to take medications wether they like it or not. I do my alternative therapies: meditation, relaxation, ice packs, prayer, journaling, vitamins and supplements. But there comes a point in life where that is not enough and medication has to come into the picture and be a part of the program. I'm doing all I can the best I can. I'm still avoiding my triggers to the best of my ability, if only my friends and family can stop adding stress to my life and give me the emotional support that I so desperately need and want.

When you suffer from Migraine Disease you have to resign your life to this fact: you are an experiment. I am resigned to that. I have nicknamed myself a professional lab rat. Resigned to that title as there is no cure for this disease and I have accepted this fate and everyone else around better accept it as well and learn to live with it as I have. It's not fun. It's downright miserable. But they don't have to suffer the effects like I have to so they should in part be thankful for that. And while the majority of the time I go around dizzier than a bat from one of the many side effects of a migraine attack they could cut me some slack and try to help out a little like picking up after themselves. Would that be too much to ask for? Sure, I know they work full time and I'm home all day, but I'm not sitting on my butt watching soaps and having fun. Hey, I'm on SSD-Disability-that does NOT mean "paid vacation" that means DISABILITY, and that is SO VERY HARD TO GET FOR MIGRAINES. Even my therapist told my spouse this. He said it was luck. My therapist and myself told him it was VALIDATION for the hell I have been through and am still going through. Men-skulls usually thick as concrete walls. 

Anyway,  I'm usually in bed with an ice pack trying to have quiet so I can keep my pain from getting out of hand. And they can show some courtesy by not turning on the TV and hiking the volumne up full blast and rattling the windows when they know full well I cannot tolerate noise. Is that really too much to ask? In the morning when Megan is still in bed, my husband will turn on the TV, but not the volumne-he will turn on the closed caption and READ the news as NOT to wake HER up! He can be considerate for her, but not for ME!!?? That blows!

I can try to tinker in the kitchen and make them supper so they don't have to cook, heaven forbid, but they can't do anything for me in return, knowing full well it's a struggle for me as smells can really set me off, and 3/4 of the time I will just eat cheerios or oatmeal because I cannot stomach what I cooked-not that it's bad, it's just because the smell turns my stomach or else my migraine has made my stomach too sensative and I cannot tolerate the spices. Some days it's pretty bad. And he wonders why I go through so many boxes of cheerios. HELLO, anyone there?

Why do people not listen? I bet if I talked Bears football, Cubs baseball or hotrods he'd listen, but the moment I talk about not feeling well he rolls his eyes and says "again". Like I can help it. Well, sorry, they stopped passing out those magic wands a few years back and I was too far back at the end of the line and missed my chance. Bummer.

    Well, like I said, we don't live in a perfect world, and mine is far from perfect. And I just know I will be nagged into mowing the yard this weekend-pain, vertigo, visual aura, nausea and all..

Until next time, as I continue to spin in circles chasing my tail and seeing double (sometimes more) but to all of you out there-be happy, healthy and stay safe.

Galatians 6:9
And let us not grow weary of doing good,
for in due season we will reap, if we do not give

I Just found a solution to the burning caused by Sprix I wanted to pass on right away. Acutally, the Pharmicist at CVS recommended for the Oxygen therapy for the dry nasal passages this water/aloe based nasal spray or gel called AYR. I just tried it today after I did my post. It worked pretty good-did not burn as bad. Nothing really can stop the bad taste in the back of the throat other than drinking ice tea (water doesn't cut it for me) and then I was able to follow with my oxyten therapy right away like the neuro recommended. It seemed to make the Sprix work faster using the O2 right away. Now to see if I have to repeat the Srix dose sooner, or later. But for anyone using the Sprix and/or Oxygen therapy the AYR works pretty good for keeping the nasal passages moist.


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