I can't believe how long it's been. I know over the years I've had some of you contact me for updates as well as comments looking for updates and I must confess - I turned my attention towards living instead of dwelling on symptoms. However, due to a recent increase in migraines and visual symptoms I felt I should come on here and update those who are seeking help.
My story is a long one and I suggest reading past posts to get caught up. The condenced version of my story is that I've had some variant of migraine my whole life. It's suspected that it was due to a head injury when I was a child. I had a condition for as long as I've known - Allodynia. Any time my parents would pat me on my head it would send searing pain throughout it. They never questioned it.... never sent me to a doctor for it. I just lived with it and every once in a while they'd forget about it and it would happen again. I also dealt with mysterious stomach pains - which I later found out to be a form of juvenile migraine.
Fast foward to the year 2008 - I had just gotten a new apartment and my, then, BF was moving from MI to FL to live with me. It seemed within the first couple of days I started having palinopsia. I also had issues with light sensitivity, halos, after images, etc. I ended up getting pregnant and the shit hit the fan after our son was born. The migraines were daily and soon after came the visual snow - static in my whole field of vision. Next came something called akinetopsia - everything in my peripheral vision looked choppy during movement. I was living in hell and this was 24/7. My only relief was sitting in my home watching tv. I didn't have the ability to stay home and so I worked for quite a few years with this condition. I began experiencing daily dizziness on top of the visual symptoms - as well as depersonalization. I felt as if I were on drugs and I hadn't done any drugs - let alone drank.
I was placed on Verapamil which immediately helped with the migraines. This in turn decreased the afterimages and trailing vision for me. It wasn't completely gone, but it was manageable. I still dealt with static and the choppy peripheral vision - as well as some dizziness.
I decided it was time to be proactive about my health. At this point it was 2016... I spent 8 years with these symptoms. I had seen every doctor under the sun. I had been poked and proded too many times to count and I was done. I decided to accept the diagnosis of migraine and had been hearing about a migraine diet book. Heal Your Headache by Dr. David Buchholz. I figured I had done everything else and while I was skeptical I honestly had nothing to lose. I followed the diet with very few slip ups. I first started noticing the my dizziness was abating. I would only have minor issues right before my period started, but nothing daily like it had been for months. My migraines were becoming less frequent. I started noticing that the static wasn't as bad and the afterimages were almost gone. I was still dealing with the choppy vision, trails and depersonaliztion.
I started doing a lot of research about the choppy vision because this seemed to be a very rare symptom amongst those who get Visual Snow. I had found some research articles on it that mentioned a doctor in the UK. I decided to email him and ask him about the rare symptom and if he had any opinions on it. He immediately told me I needed to get a MEG scan done. He said it's a more precise scan and penetrates deeper than an EEG. I had already had EEG's done and they never found anything. So, I went to my neurologist with my new found information and he ordered the scan to be done. During this time of waiting for the appointment I was also learning about a medicine called LDN (Low Dose Naltrexone). It's said to help with inflammation in the body. My neuro and I suspected neuro inflammation as it's the culprit to a lot of health conditions in the body. There isn't a lot of research or funding behind this medicine and it's really cheap to obtain. I read lots of articles, joined a facebook group and heard A LOT of positive stories about it. So my neuro wrote me a script and I got some from a compounding pharmacy. I immediately started using the medicine. I didn't really notice muchat first with the medicine..... and then I did - within a few months I started feeling REAL. Happiness... HOPE. I hadn't felt like that for a very long time. I decided to leave my husband during this time as the relationship wasn't fruitful for either of us. This was one of the best decisions I've ever made ( aside from having my son and starting medication).
I was even able to drive 2 hours away for my MEG scan. That was my AH HA moment. I hadn't been able to do that in a very long time. I even went out by myself to an ARCADE that had tons of flashing lights. I was so proud of myself. Something was changing.
I had the scan done and within a few days my doctor called me in for the results. I had a rare form of Right Temporal Lobe Epilepsy. He suggested I start Lamotrigine (Which I had already researched for the depersonalization). It sounded like the best medicine for me all around. I started very low on the medicine - 1/2 of a 25mg a day. I did this for the longest time. That little dose along with my verapamil and LDN gave me my life back. Soon the visual stuff started going away. I didn't really notice anything anymore - not that I went looking for it - either way they just weren't there. I was able to travel to Savannah and Tennessee more than once. I could drive at night with zero issue. I was back. I was 100% from January 2017 to December 2021.
This month, December 2021, I had a horrible migraine right before my period started. This migraine lasted days and brought back all of my symptoms. It left me racing for answers as to why. The panic set in and I immediately started getting the depersonalization and panic attacks. The anxiety was continuous, as well as the migraine. I feared the worst. I have a promising career, a wonderful boyfriend, home being built, son is in great health. I have the life I've always wanted and now these symptoms and the mysterious illness I left behind in 2016 is back.
I went in to see my neuro and we discussed a plan. I realized I hadn't been consistent with my LDN for months. I kept running out and not refilling in time so I'd take less of the dose to make it last longer. I also had still been on a baby dose of lamotrigine. I have my LDN refilled and I am going to keep on it. I have already started the migraine diet again and I have increased the lamotrigine. I am just a few days into the increase and the anxiety is gone as well as the depersonalization. Everything else is still there, but not as bad. I think the main thing to note is back in 2016 my goal wasn't to get rid of the symptoms. I knew that wasn't possible. My goal was to find a way to live and enjoy life while having the symptoms. The symptoms going away was unexpected and quite a miracle. That is my only bit of hope. They had gone away for me once before so there is a HUGE chance that they will go away again... or decrease a bit. Either way I am holding on to my faith and trust that I will once again be able to enjoy life fully with or without these symptoms. I have such a wonderful supporting boyfriend - he is a God send.
I will not be updating this blog anymore. My hope is to beat this again and one day write a book - I have way more to talk about than this illness.
My advice to anyone reading this who is panicking and searching all over the internet for the worst outcomes is to STOP. Get off the message boards and Facebook groups. Do not identify as RARE and Untreatable. YOU are an individual and different from everyone else. Visual Snow is a cluster of symptoms. Just as headpain is a symptom of migraine or a headache. I know that taking my medicine and following a migraine diet will help with my migraine pain.... so can treating the other things that may be causing you Visual Snow that you aren't aware of. For me it's inflammation and epilepsy. I say this with 100% confidence. I decided to treat myself for inflammation and epilepsy. Remember though - I was starting to get better even before I started taking the lamotrigine. I was treating myself for inflammation first. I believe this brought down my trigger threshold. My brain was on fire. And the one thing I felt this past week was like my brain was on fire.
Pray, hold on to faith - even if you don't believe, trust. I wouldn't be where I am today without faith and trust that anything is possible. Don't give up. When you feel the anxiety coming on tell yourself that you're going to fight - but you're also going to learn how to accept. Let go of the control. Let go of the what if's. Fake it until you make it and I promise you, you'll get there.
If you're reading this, I'm praying for you. You will get through this! Please take care of yourself. <3
