Hello everyone,
I have not been on here in a very long time. The reason being that I've been trying to keep up with school (decided to do online for junior year since I could not deal with my symptoms) and just trying to be my old self. Last time I was on here, I had been taking several different medicines, still trying to figure out my diagnoses, and many other things. My neurologist, Dr. Coleman(Very kind man), informed me that I had "Cerebellar tonsil ectopia," which he didn't consider to be Chiari Malformation. I have read a few things to confirm that it could be considered Chiari Malformation. This small difference in my tonsils have caused me some extreme symptoms: Difficulty swallowing, excruciating migraines, pressure, ringing in ears, constantly seeing a black dot and squiggly line, numbness, tingling, nausea, etc. Some days, some symptoms are more extreme than others. The past few months, they seem to get really really bad starting at 6pm. My condition is getting way worse.
I stopped taking all medicine because I gave up hope that any will work. I've taken 6 different medicines and none have worked. Excedrin Migraine worked for a few months, but as of now absolutely nothing is working. Over the counter or prescribed. I've tried ice packs, heating pads, different pillows, etc. I'm not quite sure what else to do.
Any advice on anything to help ease the pain, what to ask next time I go to the doctor, and anything else I might need to know? Thank you!
I know how you feel, TayyTayy. My imaging studies have shown 4-5mm of tonsillar ectopia, which the radiologist that read my MRI states is not "convincing" of a Chiari Malformation. I have a lot of the symptoms you're experiencing, except my only visual symptom I've had so far is blurred vision in my right eye when my head starts hurting pretty badly. I still take several medications right now, but I've been on some of them longer than my Chiari issues started, and one or two are for "migraine prophylaxis," even though I still get my regular migraines on top of my current headaches. I haven't had a chance to try a lot of different pillows yet, and I'm trying Tylenol PM tonight to see if it will help me sleep. I'm running out of ideas myself on what to do. Hope you find something that helps you soon.
I have no idea the size of the herniation. I don't go back to the neurologist until July, but I think I might need to schedule an appointment for a sooner date. Thank you for your response (:
Hi Mandy,
I have not had a sleep apnea test. My neurologist suggested it,but at the time my parents did not have health insurance. I'm sure I will have one done within the next few weeks or months. Your response was very helpful. Thank you so much!
Mandy said:
Hi TayyTayy,
I'm sorry to hear this, it sucks to be in pain :(
There are a few things you can try. First, have you had a sleep study? Sleep apnea is very common with this group. When I don't wear my sleep mask, I usually have much higher levels of pain the next day.
Magnesium, fish oil, and vitamin D. I like magnesium oil or magnesium flakes in the bath best, but magnesium supplements can be helpful too. If you have problems with constipation, use magnesium citrate. Stay away from magnesium oxide. Magnesium threonate and magnesium malate are good if you need to avoid having to use the bathroom more. Magnesium deficiency is common, and there is a whole list of things associated like muscle cramps, fatigue, depression, pain, etc. As for the fish oil, I use Carlson's lemon cod liver oil, it really doesn't taste bad. My doctor suggested I use 3x the dose for 3 days, and she said it might help with inflammation, which causes pain. I ended up doing it for a week, and it reduced my pain significantly. Last, I was vitamin d deficient, so supplementing with vitamin d was very helpful for my overall pain as well.
Have you tried Diamox yet? Pressure and vision changes can be associated with high intracranial pressure, which for some can be relieved by diamox, which is a prescription.
Another thing that helped me was raising the head of my bed. I also make sure to drink plenty of fluid during the day.
I'm not taking medications other than the occasional ibuprofen. I have good and bad days, but my pain is mostly managed. I'm very careful not to overdo it though too, because that gives me a headache most days.
Hi Liaspyre31,
I use 5mg of melatonin to sleep at night, but these past few nights it has not been making me sleep. I think because my pain is so bad, I can't even close my eyes or lay down (that makes it worse). Let me know how Tylenol PM works for you because I will have to try it. Thank you for your response! (:
liaspyre31 said:
I know how you feel, TayyTayy. My imaging studies have shown 4-5mm of tonsillar ectopia, which the radiologist that read my MRI states is not "convincing" of a Chiari Malformation. I have a lot of the symptoms you're experiencing, except my only visual symptom I've had so far is blurred vision in my right eye when my head starts hurting pretty badly. I still take several medications right now, but I've been on some of them longer than my Chiari issues started, and one or two are for "migraine prophylaxis," even though I still get my regular migraines on top of my current headaches. I haven't had a chance to try a lot of different pillows yet, and I'm trying Tylenol PM tonight to see if it will help me sleep. I'm running out of ideas myself on what to do. Hope you find something that helps you soon.
Hey TayyTayy,
Didn't have much luck with the Tylenol PM the other night, but it did help reduce some of my pain. If you usually use Melatonin, you ought to try this sleep supplement called MidNite. It has Melatonin, Lemon Balm, Chamomile, and Lavender, and it works great for me. I've tried several other different things for sleep off-and-on the last several years, and the MidNite works best for me. I first found it at the Base Exchange while I was stationed in Georgia, but you should be able to find it at Walmart and most drug stores. Hope this helps you some!