25 years testing MS ... diagnosis... now need help

By tamkit

2 min read

For over 25 years I have had problems with very bad migraines, and aura that have been much like M.S. There has been some brief remission times. Its been more frequent again in the last few year. I have lost my vision in my left eye 3 times and both eyes once completely. I get neropathy in my lower legs and hands but esp left lower leg which makes me limp during the aura period of time. My hands and feet are freezing cold and just won't warm up.I am dizzy and imbalanced during during the aura. The floor feels like it tilts. Sometimes I have nausea.I am very confused. I have trouble speaking and trouble understanding. The pain of the migraine itself is very bad and is on the left lower back side of my neck but one time ...just one ... was on the lower right back side of neck.. it lasts about 30 to 45 mins and is unbearable. I do not have it each time I have aura. I often have aura and stop the migraine with an injection I do myself with 60mg of toradol because the most recient migraine episode was so severe my husband found me on the floor slurring ,not able to move , not comprehending anything,eyes rolled back , and I slept and don't remember anything for 2 days....so I need to avoid more spells like that. Then, I TRIED botox for the migraines which made me have very sore and swollen neck and not be able to swallow food and eye lid drop and more frequent migraines ...I decided I better go back to the only thing that ever worked before because that dose of toradol is so hard on your liver and kidney.So I am taking Topamax 100mg a day. I am very very depressed with the side effects. I don't feel like myself at all. I forgot to tell you all that after 23years of searching I was diagnosed with BASILAR migraines. Has anyone tried pure oxygen??? I have low blood pressure, severe osteoporosis and other health issues but those are the 2 that I think would affect medication. Anyone relate to this?? I keep trying but don't seem to be getting anywhere. Thanks! Tamkit

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Katie M. Golden Moderator
Tamara, So sorry you're going through this. Your symptoms are pretty severe and debilitating. How often does this happen? I'm assuming that you've gone through a ton of tests to rule out any other causes. Have you ever seen a Headache Specialist? This is a type of neurologist that has special training in the over 300 headache disorders and is the best equipped to deal with the symptoms you have. Here's more on Headache Specialists: <a href='https://migraine.com/blog/how-are-migraine-specialists-different' target='_blank'>http://migraine.com/blog/how-are-migraine-specialists-different/</a> How long ago did you try Botox? It is very common to have flu-like symptoms after your first injections. I tell people that you really need to do it 3 times before deciding if it's helping or not. It can take your body a little while to get used to it, but then often it just starts working. Here's some info on the Basics of Botox: <a href='https://migraine.com/blog/botox-basics' target='_blank'>http://migraine.com/blog/botox-basics/</a> With Topamax, did you start at 100mg or did you start at a lower dose and work up to 100mg? Sometimes a lower dose can be tolerated better. Again, I use a general rule of thumb that you should try a new medication for at least 3 months to allow your body to adjust. But Topamax isn't for everyone and there can be some unpleasant side effects. Talk to your doctor about changing the dose or just trying some other medication. There are a lot of preventatives to try and it takes a lot of trial and error to find the right one. I hope this helps! -Katie <a href='https://migraine.com' target='_blank'>Migraine.com</a> Moderator
1. tamkit Member
 thank you for your reply.. yes I finally got my diagnosis from a migraine specialist.. I did start Topamax at 25mg and went up one a week to 4 ..then migraines stopped but side effects so severe I could not live with them.. I have a bladder disease called interstitial cystitis and along with other severe side effects it made me have uti type symptoms.. I.C. already gives me constant pain and I have had that also about 25 years . It has also progressed to be worse over time. The botox I only used once as I know it works for some people but it was in so much pain from it . He gave me a very small dose because I am very small framed 5FT8 and 115 lbs.Because of steroids for a previous infection and then Topamax I lost 5 lb and that was with force feeding myself. I felt like I had lost my emotions except depression and knew I would not survive {literaly} a 3 month trial. I am only have one to cut down now and ill be off it but then ill be back for now relying on toradol again. I sometimes have basilar aura and if not stopped in time migraines up to 3 times a week. I have to really limit everything I do ,eat, etc until I find a better way to treat my migraines.Some of my triggers are getting to hot, some typical foods , stress, barometric pressure, decending on an airplane etc....So I will see a D.O. on Monday and see if any help for my health issues. Katie, have you heard of pure oxygen treatments when aura starts?? Do you have any info for me on that?? Thanks for your time... Tamara
2. Katie M. Golden Moderator
 Tamara, Sorry you're going through this. Having another medical condition on top of bad Migraines can make treatment options much more difficult to determine. Yes, I have heard of using pure oxygen as a treatment. It is typically associated with Cluster Migraines. I don't get clusters, but when I go to the ER to break a bad Migraine cycle, I also ask for oxygen. Here's some more info: <a href='https://migraine.com/blog/cluster-headaches-explained' target='_blank'>http://migraine.com/blog/cluster-headaches-explained/</a>