hi hey hello!!! It's been a LONG time!! I haven't written a post in like 8 months haha and a lot has happened!
so in February, I had my first port placed that had to be replaced in march (the surgeon placed it through the vein so it was unusable) and healed SO slowly omg. headaches, migraine, and POTS was all super under control until the end of April. I did my dose of ajovy on the 12th and it only worked for about a week then I struggled to make it to may’s dose. but that one didn’t work either and we only had one more med to try before needing to be admitted. the semester thankfully ended just a few days before this and I tried and horribly failed Nurtec. my neurologist put in the order for me to be admitted but 2 days into waiting, I went to the er because the pain was so bad.
I started ketamine in the er and waited to go upstairs for about 22 hours. once we got admitted, we titrated the ketamine to the max dose and then stopped it because I was super super dizzy and I had no relief. we then started DHE, every 8 hours, for 20 doses. after a few awfulll doses with side effects, I had so much relief! we started weaning the dose and then the frequency so it took 10 days to be discharged. I missed my first CNA shift and a conference with my friends:( it was a rough admission but I think it was the best one yet! while I had 6ish hours of relief, I could go downstairs to the Seacrest studio, meet the special guests (Andy Grammar this time!!), and spend time with my friends! my nurses were the absolute best!!! I felt really good for about a week before my baseline crept back up.
I followed up with my neurologist 2 weeks after being discharged to come up with any sort of plan. we were going to switch to aimovig but it isn’t covered by insurance so we switched that to emgality. we also added in DHE nasal spray since DHE helped so much in the hospital! we planned to do labs to check my iron again but the lab was already closed:/ there are still quite a few things that we don’t have answers for which is frustrating. we have a lot of things left on the table if we need them which is reassuring! also went to visit my nurses, child life specialists, and friends in the Seacrest studio after my appt! so good to see them and say hi!
I tried the DHE nasal spray shortly after that appt and had horrible side effects for over a week and minimal relief so we switched to the DHE injection. I tried it on July 4th and it helped so much! I did get super nauseous and reacted to the injection but it worked! I did the first emgality dose on July 12th and its worked so perfectly!!
we were able to travel to Florida in June then Wisconsin in July! it was tough but I'm so glad we were able to get away since the last few months, I've been bedbound. I also started my job in July!!! I worked 6 shifts before putting it on hold when my pain got really bad.
the next migraine I had at the end of July, unfortunately, triggered my occipital neuralgia. I administered 2 doses of DHE but was left with severe nerve pain in the back of my head. we tried increasing one of my nerve pain medications, 6 other meds, 3 sets of nerve blocks, and outpatient DHE and iv meds with no relief so I was admitted, again. this time for a continuous lidocaine infusion. when I was getting outpatient DHE, the pain dr (who I despised), after talking to my neuro about where I was and that he wanted me to consider surgery, said he would never suggest decompression surgery unless I was much older and had suffered for longer. I absolutely agreed (mainly because I’m terrified of having surgery again and having more complications).
I reached out to my neurologist trying to find out where I could go since I aged out of the children's hospital (even though he is still pediatric) and the adult hospitals don’t do it, but he hacked the system and directly admitted me anyways. I was admitted on a Monday night and had a small plan for that night then started lidocaine the next morning when the pain team was there. we started it then did labs to check the plasma level 24 hours later. I was getting iv Toradol around the clock which gave me 3 hours of relief so I was able to walk some to see my friends! since they were sent to cook childrens, it took a bit to get results. the first level came back super low so they increased the lidocaine and retested it. that one also came back low so they increased it again since I still didn’t have any relief. the third time they tested the level, it was finally in the therapeutic range, but since I didn't have any relief, they discontinued it and discharged me. I was absolutely heartbroken that our last resort treatment didn’t work at all. at this point, the occipital neuralgia was labeled as "refractory".
while I was admitted, my neurologist and dumb pain dr (who said he would never suggest surgery) brought up decompression surgery over and over. I was so sick of hearing about it and them suggesting it and never ever wanted to hear about it again. my neurologist said that he understood and would never talk about it again unless I brought it up. shortly after I was discharged, he and his fellow did a ton of research and found a brand new procedure called Hydrodissection. he set it up with the DREADED pain dr (they're like bffs) because he said he would give it a shot. keep in mind, I don’t trust this dr and he’s never ever done this procedure (it's been done once ever). I backed out at the last minute because it was happening too fast and I didn’t have time to consider it. I had a few more nerve blocks and tried a few more meds that made me super sick and didn't make much progress.
we made an appt with the national headache institute in Houston, at the beginning of September, and they ordered a ton of tests. I had a cervical MRI and Xrays the next day then scheduled the rest of the testing in their office for the end of September. this pain is extremely difficult to treat so we’re at a loss. I had another set of nerve blocks to get even an hour of relief but we tried a different numbing agent (to see if it would last longer) that didn’t work at all:/ in between those appts, I started searching for decompression surgeons. I was finally coming around to the idea of surgery. it’s definitely an uncommon surgery so it’s been difficult to find Drs. after finding two, one said my case was too complicated for him and he didn’t feel comfortable trying to treat it, and the other was decent. he’s in Ohio (dr g) and got some helpful info but ultimately didn’t feel comfortable with him doing the surgery. he was definitely rushed and got straight to the point. he thinks this is all from my car accident & whiplash last summer (even though I've had ON since 2020 and it was in remission until this summer). so he is confident surgery is the answer.
we then traveled to the National Headache Institute in Houston and completed an EEG, VNG, ANS, stress test, and allergy testing. my follow-up was rescheduled and I got the ultrasounds (echo, carotid, and transcranial) done here as well. while we were in Houston, I got to meet a good friend, Elise!! my EEG was normal but all of the other testing came back positive for some sort of condition. we havent made any progress on this so far.
a few days later I met with a local surgeon who is amazing (dr a)! he is very knowledgeable about migraines and ON and even pioneered the surgery with dr g! he listened to my whole story and tried to make connections about how my conditions are related. basically, my nervous system is whack and is super sensitive (hence ON, migraine, POTS, and fibromyalgia). he really thinks I have a connective tissue disorder, such as Ehlers-Danlos syndrome or lupus. he let me decide what I want the next steps to be and I decided to do another nerve block (which was amazing!) and schedule surgery once insurance approves it. I can try ART botox (targeted in certain spots near the nerves) in the coming weeks with either him or my neurologist. there is a tiny chance my surgery could be this year but it's looking like January. we would start with the back and free up the greater and lesser occipital nerves and remove the 3rds then if needed, do the front a few weeks later to decompress and remove those nerves. all in all, I feel very comfortable with him and trust his opinions!! #plasticsposse 😌
then this week, I had the nerve block with my surgeon and got some more referrals, a testing follow-up with the headache institute, and the pain management appt. the testing follow-up was dumb. I still didn't get to follow up with the dr so they went over the results and it was mostly okay. I have flat neck syndrome and some more neck issues so they suggested their stem cell treatment that was quite sketchy. I later found out my VNG is very abnormal as well as my stress test.
then after a month of contemplating the hydrodissection, I decided to give it a try since it could help some. I was very anxious about trusting that pain dr again with a risky procedure, but I reluctantly agreed. I had no interest in it but if this second case report can help someone else, then I’ll try it. it took them about 40 minutes to explain, find the nerves, then prep the area since it is a sterile procedure. after they were sterile, they found the nerves again and got started. thankfully the dreaded pain dr was just guiding a resident through it but omg it was rough.
they use a blunt super long needle with a tube attached that they inject through. when she was going through the super thick layers of the fascia, it kept popping and causing severe pain. when she finally got it in the right spot, she injected 9ml of saline to free the nerve, a small dose of ropivacaine to numb it, as well as a steroid. they did this on both sides. throughout the procedure and afterward, I had severe electric shock-type pain. it’s every few seconds and hurts so so bad. the dr walked us out and i was sobbing and clinching all of my muscles because the pain is just so bad. this wasn’t really a known risk since there is literally no other data on the procedure.
we're also worried that the metal in my back has something to do with this since the occipital nerve is close to it and even the slightest compression would cause these symptoms, so I'm also seeing my orthopedic surgeon for x-rays to check on all of it in November.
emgality and DHE are still working wonders for my migraines!!!
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