Just like the Lamictal, here I go again. I’ve started dosing down on my Namenda. I’ve known for quite a bit now that it hasn’t done anything. I mean I don’t think it has. Maybe there was a small benefit at first? Maybe there was no benefit at all? And it was just some sort of placebo.
Whatever the case, I’m dosing myself down to be completely off of it. I’m only doing my morning dose for 1 week, and then it will be none at all. That’ll leave me with only like 2 medications I take everyday?
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 am suddenly stopping Cymbalta, and it is not by choice. I went to the pharmacy to pick up my refill last night, but I left empty handed because my insurance won’t pay for it until the 12th. Somehow I don’t understand. She was telling me the instructions on the bottle stated I should be taking one pill a day. But I’ve always been taking 2/day since I last saw my neurologist. How did I not run out of pills in August then?
I have no idea. But from last night (Sept 6th) until the 12th I will have no Cymbalta to take. I have read all about this withdraw, including a lovely thing called Cymbalta Discontinuation Syndrome. I made it through an extremely difficult Effexor withdraw, but that was with tapering down. In this case, I’m going from the highest dose of Cymbalta, to zero within one day.
I am very conflicted. I like the idea of having to take a medication everyday to control my symptoms and prevent pain. But I have a fear of relying on medication every day as well. It comes from the days when my endometriosis was poorly controlled and I was taking birth control pills like candy. I would double up on pills (based on my doctors recommendation) for a short amount of time to try and prevent all the pain and blood. I would double up so much, that when it came time to get a refill from the pharmacy, it was too soon, and the insurance wouldn’t cover it. And I would cry when they denied me because I didn’t know what I was going to do. Letting the period come meant extreme pain, not eating, not sleeping, and hospital trips where I wasn’t even given anything for the pain. Those pills were the only thing stopping all that from happening, and I wasn’t able to get them when I needed them. And that sounds all too familiar right now. At least with birth control pills, there is no withdrawal symptoms. I am wishing future me luck with the next 6 days.
When I finally do get my Cymbalta back, I think I am going to half my dose anyway. Having no neurologist at the moment makes me free to make shitty decisions.
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.
I did the math, it takes about two weeks for the Botox to kick in and some sort of small relief for me. March 24th 2016 was my first round of Botox for migraine. A little over 2 weeks later, on April 9th, we went on a trip and it was the first time in forever when I can recall laughing without pain. So I think that was thanks to the botox? At least I’m hoping so!
My most recent Botox injections was June 23rd. About 2 weeks before that is when I remember being in more pain than the previous months. I suspect it was the botox wearing off. I should expect some relief between July 7-9th. I HOPE. This is all a little frustrating to calculate because there are so many unknowns.
In the meantime… I am trying not to take ibuprofen or anything else OTC. I remembered a prescription I had for Reglan (metoclopramide). After doing some research, I learned this is one of the drugs I was given during that awful infusion process at the end of last year. And one of the side effects is anxiety/feeling panicked.
I don’t feel so good about this decision, but I’m risking it. I’ve got nowhere else to be tonight so if I get hit with side effects, I’ll just wait it out in the bathtub, since that usually calms me down. With a little bit of google research, I took the Reglan with some Benadryl (or the generic equivalent). Desperate times call for desperate measures. Wish me luck!!
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 have had this idea in my head a long time, to make a image that represented (as close as I could) the hand tingling that I got when I was on topamax. It’s like that feeling when a limb falls asleep, it sort of tingles but at the same time is stings. It’s like having TV static in your hands but you can feel the electricity.
Thankfully I’m no longer on this drug but I remember the side effects like it was yesterday!
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.