A friend recently reccomended to me hemp oil for pain. Her suggestion was Charolette’s Web (https://www.cwhemp.com/) which I would LOVE to try. But my bank account disagrees until I know for sure it will work.
I feel as though I haven’t been updating this as much as I should, probably because I am TIRED. Sleepy girl for life.
This past Monday (1 week ago now) Jan 23rd, I saw my neuro-opthamologist for a follow up. Something about a test result with my retina being slightly abnormal, but I have a follow up with a retina specialist as soon as I email him and find out who he wants me to see. But the most exciting thing is, I finally got a prescription for Lamictal! This mysterious drug that I have been hearing about every time that I have went to see him for about a year now.
It’s an anti-seizure medication but it has shown to help with migraine and visual snow. It’s one where you will slowly have to increase your dose up to the correct amount to see any relief. I’ve only been taking it a week so far, and I am just EXHAUSTED. Never been so sleepy for so long in my life. I decided to caffeinate myself today, which was probably a bad idea, but I have things to do!
I am also very very paranoid of one of the rare side effects, Steven Johnsons syndrome (SJS) for no reason other than it makes your skin fall off and I really don’t want to deal with that.
I have a problem. It’s with all these bullshit blog posts and articles out there offering the “cure” for migraines and other conditions, all you have to do is buy their ebook! For example, this one that was sent to me by a friend:
And I sighed, said to myself “not again” and started to read the article. I don’t even know why I wasted my time because I knew how this was going to end. I got into an argument with the friend who sent me this, and now I feel really bad. I feel guilty for expressing exactly how I felt. And maybe I was a little harsh and a bit too sarcastic, but I am tired.
I’m so tired of hearing all about diet & exercise & fucking yoga. I promise you, I’ve heard it all and I’ve tried it all. Tell me what a diet is going to do for my neurological disease? I KNOW there’s some science to it. I get it and I understand. And I get that they were just trying to help, I really do! But WHEN did I ask for help??
Damn near every single person who finds out about my disease tells me about how they think they know the cure. And how I need to try this one thing because their coworker’s brother’s son tried it and it worked for him. I know my body and I know my disease. And I promise you, some dipshit on the internet selling a “cure” for my incurable disease isn’t going to help me.
The last time I was at Johns Hopkins, I got a prescription for Depakote. My neurologist had mentioned it to me before, but the side effects sort of made me not want to take it. So I have had this drug, just sitting in the bottle on my dresser. I look at it everyday when I take my other medications.
So far my other medications haven’t made a significant change in my pain level. But I am terrified to take the Depakote. The side effects he mostly pitched to me were weight gain, hair loss, and acne. Now I already have acne, and it seems to be mostly under control for the moment. Earlier this year I had a really bad bout of cystic acne which sort of faded away into this more manageable version which can be covered by makeup as long as I don’t mess with my face. I don’t want to gain weight or lose my hair either!
But then there’s the possibility of being migraine free. Of course I can always stop the drug once I notice a bad side effect. But what if I don’t notice until it’s too late? I don’t keep track of my weight all the time, and I know it sort of fluctuates. But I don’t want to get to the point where my pants aren’t fitting anymore! And I love my hair, I don’t know what I would do it more of it falls out than what already does. And the acne, I don’t know if I can go down that road.
For now, the Depakote will sit on the dresser, taunting me every morning and every night.
For the first time in a long time, I am feeling somewhat hopeful. Although I am also afraid this was some sort of fluke.
Thursday June 23rd 2016, something changed. I was scheduled for my 2nd consecutive round of Botox injections, as well as trying an occipital nerve block for the first time. I was nervous. I sat in the waiting room, worried about passing out or something horrible happening. My last session went fine, no dizziness or anything, so there was no real reason to worry this time.
As I laid face down on the table, counting fours as I breathed in and out, a few things happened. (1) I realized that having a needle poked into an already sore nerve in the back of your head HURTS and (2) Maybe it wasn’t so unreasonable for me to be concerned about dizziness earlier. A total of 35 needles later, and I’m sat upright on the edge of the table when the nurse practitioner asks me to rate my pain on a scale of 0 to 10. And I can’t do it.
I cannot locate any pain.
Of course, I’m dizzy and I feel numb and tingly and like there is a bunch of pressure in my head and I cannot think straight, but I cannot locate my pain. I walk out of the building, thinking that I really should have brought someone with me because I cannot walk in a straight line to save my life because of how dizzy I am. I get to the parking lot when it finally hits me.
They did it!!!
All the YEARS of pain, doctors appointments, hospital visits, and crying in the ER and Urgent Care and I am finally here. They have found the problem. I didn’t think I was capable of it, but I began to cry tears of joy. And they won’t stop! I cry the whole drive home.
It lasts for about 4 hours before another migraine hits me. Throbbing, intense pain in the front of my forehead and behind my eyes. But I am still happy. Something happened. I am not sure what yet. And now I have a bunch of new questions for my appointment next month.
Are these nerves really the problem? Is it a combination of things? Do I need to still be on this medication? What does this mean for the future of my treatment?
I don’t want to get my hopes up too high. But I haven’t had hope in a very very long time. And I don’t know what to do with myself.
Wow things have been rough these past weeks! I had what started out as a cold, then turned into the flu and became a sinus infection. Just finished up my antibiotics the other day so I’m almost 100% recovered from that.
Before all that happened, I started taking Namenda (a medication for alzheimer’s patients, but for migraine preventative for me) and Cymbalta (for my depression/anxiety and nerve pain). And since I started both of these at the same time, I feel like I have been underwater. It’s a weird feeling to try and put into words.
I have been on so many medications that affect my brain & how I work. My brain fog has been worse on these medications, maybe because I am still dosing up on them. I have almost been on them for a month. Maybe soon I will even out.
I am too scared right now to say that they may be working for my pain. I have had lots of migraines since I started them, but somehow I am more ok functioning every day? I am very spacey and haven’t been able to do any work, but something is different. I’ve been very content to just sit on the couch or lay down all day and watch netflix/be online all day.
I think I will wait a few days for my brain to even out or something.
This past Thursday (March 24th) I had my second round of Botox treatment for migraine!! All 31 shots this time, about 9 months after my “trial” round. It’s too early to feel any benefit.
What I’m dealing with right now is a whole bunch of side effects from the injection sites.
The injections themselves wasn’t too bad, at least this time I didn’t feel like I was going to pass out! But let me tell you, those spots on the side of the head, above the ear, and the very top of the neck, HURT. Now I’m feeling some tenderness in my scalp at the sites. Brushing my hair pulls on them and it hurts! Which is unusual for me because I have never been “tender headed” as my hairdresser puts it. My forehead just feels weird and I hate it.
It’s an unusual process because you can actually hear the needle when it penetrates the skin and feel the cold medicine be pushed in.
Maybe in 2 weeks I will have an update for any relief I am getting. Temporarily I have decided to keep a headache journal again. I am already scheduled for more injections in 3 months, but if I want any after that, I have to beg my insurance and prove that it helps significantly.
I had an echocardiogram some weeks ago. The day after Christmas actually! And two weeks ago I got a call from their office, telling me it was normal.
This past week, on Tuesday I got a call from my primary care physician’s office, where they get sent copies of everything I have done, and they also gave me a call. But they told me something different. I have mild tricuspid valve regurgitation. And suddenly I became so mad. Even if it was completely harmless, isn’t this something you would want to tell me??
That’s not even the worst part. When I was in his office, before Christmas, he said to me that I was too young to have heart problems and I would have to “prove” to him that there really was something wrong with me. So I didn’t like him from day one. And he said I was basically fine while I was leaving his office. Meanwhile, I couldn’t go up or down the stairs IN MY OWN HOUSE without feeling like I ran a marathon. My heart was beating so fast I thought I was going to pass out. But no worries, I’m “fine”.
I am now diagnosed with tachycardia and tricuspid valve regurgitation, which aren’t the end of the world and may just have to be monitored. Most of my past heart problems were probably from the Effexor. I was an absolute wreck while on that medication. 2 days ago I have also stopped taking my Atacand. So I am now medicine free and I don’t feel like I’m going to pass out while going up the stairs now!
BC Powder is my go to OTC drug of choice. It is something I have been taking everyday, on and off for about 4 years now? And I hate it.
I get addicted to this stuff, because of the caffeine content in it. I will take it everyday until it starts to hurt my stomach. It will make me feel nauseous, have stomach pains, and make my stomach feel cold (probably from all the acid). So I’ll stop, and end up on the couch for 3 days because of a withdrawal headache. And I’ll be good for about a week. Or two. Until I have to wake up early for work one day and have a bad migraine because of that. So I’ll take a BC powder at work. And the cycle repeats.
If it’s not BC Powder, then it’s ibuprofen and usually anywhere from 800mg to 1600mg worth.
And the worst part is, it doesn’t even help all THAT much. It just makes my day tolerable. I don’t have good days anymore, and haven’t in about 3 years.
I’m worried for my liver + kidneys + whatever else damage a large amount of otc pain killer can do to a body. I feel like I don’t have much of a choice until I can find a treatment that will successfully manage my pain.
As of today, I think that I am fully detoxed from Effexor.
I was put on it in October as a migraine preventative, making it my second anti-depressant prescribed for this reason. And the second one that didn’t work.
Almost immediatly I got hit with the side effects. It started with nausea and a loss of appetite. I lost 19 pounds while on this medication. Other side effects I experienced are:
Easy bruising, nausea, fast heart rate, sweating, changes in appetite and weight, dry mouth, yawning, dizziness, anxiety, feeling nervous, sleep problems (insomnia), strange dreams, and tired feeling.
The whole time I took this medication, I just felt unwell. I felt weak and tired, and sicker than I already was. I’m sure the not eating thing contributed to that a large amount. I couldn’t do anything without my heart rate jumping out of control.
While I was withdrawing was the worst. I would get this feeling like I was somewhere in between being awake and being asleep and nothing felt real. The best way I can describe it is that moment when you are in class or somewhere and you are starting to fall asleep, and you are aware of it, but there it nothing you can do to stop it. It was exactly like being awake through that moment. You can feel that you are no longer present, but you cant wake yourself up. It’s the weirdest feeling I’ve ever felt.
Now that I no longer take it, I feel my appetite has come back! And I’m sure I have gained some of the weight back as well. But I don’t get as dizzy every time I get up, and my heart rate doesn’t keep me up at night anymore.
The only thing I will kind of miss about this medicine is the dreams it made me have. I have such vivid and complicated dreams! And I would remember them; not just when I woke up, but days later. There were complex plots and different characters and people’s faces! It was great until the dreams turned into nightmares. And most recently, an episode of sleep paralysis, which I had never experienced before.
Bottom line:Effexor (venlafaxine) was not an effective treatment for migraine for me.