Recently I started a new and different medication for my chronic migraines. We've been through the gambit. I've tried a lot of them. Recently started a new medication noted for off label migraine treatment. I was hopeful. I had been asking my neurologist to try it, then my migraine specialist, PCP more than once, my Pdoc….Nobody cared to do this. It's a psyche drug. I wasn't afraid to ask them either. I am never afraid to bring up a medication that I've read about that might be beneficial too.
When I first began reading about it they had been using it for a few years anyway. It causes the brain in someway to be less excitable. Something to do with glutamate. I dunno. But it had promise and was working for some. Maybe it's just a premonition, intuition…something told me that this sounded like it could help. Thus…asking my doctors since it's a different class that I've tried before.
Anyway, cut to 5-6 years later when I mention it again to my PCP as we struggle to find a preventative med to help me. Suddenly she tells me they are using it for migraines and fibromyalgia now. Now she has no problem with a trial of it. Yessssssss.
The first month was very successful. I had about half the number of migraines normally which are chronic…which are most days of the month. So this was awesome.
I slowly titrated the dose as instructed and the migraines seem to resist the medication. They began to increase and I was noticing that the minor headaches I had before were no longer staying little and they were turning into full blown migraines that weren't responding to my acute treatments..ie triptans.
So, as things will have it I started to be lax about taking that morning dose. After the second day I noticed things seemed better with the night dose. Usually my body is resistant to meds and I seem to require higher doses. This time I was surprised that a slight decrease in meds seems to be helping.
Now I'm back to how it was when I was beginning the med and it seems to be working again. I am hopeful. It is the first medication that has brought on noticeable
Now that I’m trying to be more anonymous I’m going to try to tell my story in a different light. Too many personal details out there make me feel exposed. I’m so paranoid, right? You can add that to the list of my damn conditions.
Have you ever tried cannabis edibles? My state now allows medical marijuana. While I do not yet have a card, I plan on getting one eventually. I look forward to going into a dispensary and getting some cookies or treats. I believe MM is a way to help treat an acute migraine or other painful condition.
I made firecrackers once to take with me and friends to a concert. It was a long road trip. We were traveling with another person whom I didn’t want to share with so she was unaware I was eating pot laced peanut butter crackers.
I consumed a few thinking surely they’d be weak or not effective. A few hours later we were behind the building (groupies!) trying for a look at our band. As we waited I began to get the giggles. I couldn’t stop. The friend that didn’t know was looking at me wondering what the hell I was laughing at.
Forty plus years experience dealing with migraine headaches. And migraine doctors.
Yeah, yeah on the common symptoms. I’m good with the odd-ish ones. Smells like smoke? Continual sighing? A blurry eye or two…throw in difficulty speaking
Medication tester. I’ve tried every class of meds and many within the same class.
A good knowledge of those meds as well as general knowledge of psyche meds. Pediatric meds, geriatric meds. Lyme meds.
Got a few ziplocks and some alcohol? Pour about, roughly, approximately 1/4 part rubbing alcohol into 3/4 water. I usually wing this but like I said, I’m an expert. Freeze and whalah you have a mold-able ice pack. You can play with proportions. More alcohol causes it to be more gel like, extra water gives you a snowy texture. Tripple ziplock.
Extra strengh, add wintergreen alcohol instead of plain or essential oil into this mix and inevitably it will seep through and scent your freezer just a little but the mint is so pleasant when you’re nauseous.
Explain your headache to me and I will assess it. Where is it? Symptoms? Tension? Migraine? Hemiplegic? Who needs medical school when you’ve got me.
Are you crunchy? I have experience with homeopathic remedies, .
Also, alternative therapies expert. Aromatherapy, massage, reflexology, acupuncture, TENS.
Please know that this list was in jest and I’m just kidding mostly, except for the true parts. =)
This week wasn’t bad. Things overall are better but I’ve still had some episodes of anxiety. It seems like every other day is a better day. I wonder if it’s some type of decompensation. After I spend a day doing a couple of errands or visiting with a friend I feel as though I need a day to recover. I can’t handle a full on booked up week, not working, not playing.
I was able to go out twice this week and be in public. I did some errands, went to my little craft group and made a dreaded phone call. I’m trying to get outside in my garden every few hours anyway. There is always something to do. It makes me feel a little helpful.
Yesterday I had a feeling of dread all day. I just couldn’t help but feel like something bad was going to happen but I just wasn’t sure of what it was. As the day went on I was feeling nauseous. I used to feel that way so much more severely. I used to think depression was more my issue but it’s really anxiety. Worried about……everything.
By the time my husband got home I told him I thought I was having a panic attack and he gave me the biggest hugs. He told me nothing was wrong and everything was going to be ok. He’s always been able to hug me and make everything else melt away. I don’t deserve him.
Migraines this week were not good. I’m running through my triptans too quickly. My second line fiorcette isn’t as effective and I have only a limited amount of that too. I’ve had to take some excederin a few times and even after a week I feel gastritis which feels quite like an ulcer with heart palpitations to boot.
Glad the weekend is here. I don’t have any plans in stone. Next weekend we have a milestone we’re celebrating so next week will be stressful for me. Emotional and stressful. Maybe I’ll share more about this later.
Aw, damn I thought my migraines were doing a little better. I’ve been trying to track them lately just to document the frequency. I had started a new medication (bipolar) and at a lower dose it was helping. As we upped the dose it’s not any more. Maybe I’ll talk to my pdoc about lowering the dose. My appetite was much better on the lower dose anyway but the headache benefit might be a good reason to lower it. I don’t see her going for it though.
Occasionally I track my migraines when they seem more or less frequent. I always forget to add the migraines which I’ve taken something at the very beginning of or at the aura stage. It’s easy to remember the ones which I had to go hide in my room and lay in the dark.
The last time I had been really tracking them my neuro handed them back to me and told me I could hang on to them. He was not interested. I couldn’t believe it because I’ve seen so many doctors over the years as a nurse and patient who have requested headache logs. I dislike physicians who think they know it all.
From my logs I learned that light is one of my worst triggers. Strong smells, splenda and NutraSweet are also triggers. Those are concretes. I WILL get a migraine. Also liquor. I had three apple ciders tonight. I never drink so this is an anomaly. They are so good though and my husband and I were home alone doing yard work. They didn’t disappoint though and I’m working on a decent headache now.
Please go away. I know that’s it’s physically impossible since I’ve lived with you for 44 years. I know you’ll never just disappear.
Instead I am ever thankful that you usually respond to my migraine meds. Thank God for my prescription meds and my doctor to prescribe them for me. I’d be dead without them. I couldn’t cope. Please don’t ever stop working!!!!!!
I went to Target this morning without my sunglasses and spent money. Both things are big triggers for me. I took a nap after I got home to try and chill but my normal headache took a turn and my eye is blurring and uuuuugh. We meet again.
I took my meds but they haven’t yet kicked in yet. And I’m getting low on my medication. I should have refilled this week but I put it off. Because I’m the worlds biggest procrastinator.
My two main docs are my pdoc and my GP who treats my myriad of other afflictions I have. I stopped seeing my neurologist because nothing was helping. He was helpful for ruling out MS as a diagnosis, got my MRI’s all authroized quickly. My GP says the specialists always are that way. (I don’t think that’s always the case).
I like my GP because she asks for my opinion and input. I’ve felt comfortable asking her about personal questions, anxiety meds, increasing a dose, can we tests for _______. I’ve convinced her to try a couple of non-conventional treatments for my migraines after I had read about them. She’s not a total pushover though. She wasn’t totally for applying for disability. She told me I wouldn’t have anything to do after, like a place to go to every day and I might end up feeling worse.
Pdoc seems to know her stuff. She was more in favor of applying for disability. A couple of times I’ve mentioned a different treatment and she hasn’t been open to it. I don’t push it either because I know she knows a hell of a lot more than my doctor google degree. She doesn’t like to do big changes with meds…one change at a time kind of rule.
Since then I’ve been on disability for two years? I’ve had a few periods of “meh” and a couple of “ok’s”. I had no idea it would take so long to treat bipolar disorder and I know I’m still not fixed yet.
I saw this idea on someone else’s blog and stole it.
I’ve had Lyme Disease. It took a long time to diagnose. Now I’m left with pain and other issues. But is it fibromyalgia? Or Chronic Lyme. Who the hell knows.
I thought I had MS for a long time. I felt ignored by my previous doctor. I know it’s nothing new. I was tripping and falling, numbness plus other MS like symptoms.
I used to follow a few bands live. That was when I was up/happy. I like the hippie genre mostly. Folk, bluegrass, Americana and classic.
Sometimes music makes me sad and I don’t listen. Often it’s connected to a bad memory of me being manic and overly excitable. Instead I avoid it and listen to music without the bad feelings.
I have a mail phobia. I’m afraid to open my mail for fear of hospital bill collectors, random other things that give me anxiety. So I avoid it. It has caused problems over the years. I need to work on that. Taxes…
It doesn’t help that I am not the most organized person with some things. Like bills and everything else 😉
Steering in the opposite direction of my parents, I have always been a little messy.
I have always thought creative people were messy. I care more about the art than the clean up. I’d rather create something than cook or clean.
Lately I’ve been really trying to overcome this. I have several strategies.
I make my bed every morning now. It’s practically a habit.
Messy bed, messy head.
My husband is a work-a-holic. He works 7 days a week and loves what he does.
I’m happy he loves what he does but so much could be done at home with him here. So many home improvement projects and quality time together.
He’s an amazing provider though, a husband and father. He has supported me through good and bad times.
I am incredibly overwhelmed all the time. It makes me want to hide.
I have isolated myself in the past and still away from friends and family.
Retreating to my room is my “thing”. I try much more to not do this.
Most days I pass the day puttering around, looking at the internet on occasion, doing some laundry. I try to interest myself in TV to pass time too. I don’t find much I like to watch.
I wish I had the stamina and drive my sister has. She tackles home improvement projects like a pro. She works full time plus, takes care of everything at home. She’s basically happy like that even her husband doesn’t contribute. I want energy like she has.
I have only 2 very close friends plus my sister. I’d rather have a few close friends rather than a group.
I get so anxious if it’s a group type thing I usually avoid it.
I always think people are staring at me. Maybe it’s paranoia?
When I go to my primary care doctors it’s not unusual for me to cry. She is wonderful and kind but we are not in control of my illness(es). I cry while saying I wasn’t depressed. I didn’t know what was wrong.
I feel so vulnerable when I go to my doctors. Always. I’ve explained the whole thing, gave you all my symptoms, we’ve established the diagnosis. Please help me, please fix this. I can’t imagine what someone with a terminal illness or illness far more serious than me feels like. 😦
I wish I could control my migraines. Whatever I’m doing isn’t working. We try this, we try that. I look into something else. As silly as it sounds, it feels like a failure when we try something and it doesn’t work. I feel like another failure when I have to ask for a new refill (again) of my scripts. I can’t control them.
Bipolar is becoming a beast to control. So far I’ve failed a bunch of meds and none have worked on my depression. We increased my prozac a tiny bit and I think it might be helping a smidgen. Much less anxiety, anyway.
I feel like the best thing to take control of my illnesses is research, seeing my doctors regularly and keeping track of my symptoms. It helps me feel like I’m at least doing something to help myself.
My sense of smell has never been right. For a long time it was barely there. I can remember driving past a dead skunk one night and it didn’t bother me the least. I could hardly smell it I told my husb.
For the past couple of years different scents have either triggered a migraine or made it much worse. Fresh cut grass, frying fish and perfumes to name a few. My sense of smell becomes really heightened.
When I do have a migraine I love lavender and peppermint essential oils. They really help. Rub some on your forehead, temples, nape of neck. They start working immediately while waiting for your medication to kick in. Give it a try!