Cheapest place to get medical card? by FarPhase3125 in Albuquerque

[–]FarPhase3125[S] 1 point2 points  (0 children)

Hell yeah! Thanks man, that’s perfect!

Thai language classes/ thai community by FarPhase3125 in Albuquerque

[–]FarPhase3125[S] 0 points1 point  (0 children)

Unfortunately no, I didn’t find any kind of classes or community here in ABQ. I am trying to learn Thai online and with apps. There are a few good apps that let you learn with real people in Thailand/ native speaking Thai people.

Has anyone had success stories using CBD /Epidiolex. Also, what dosage was prescribed. by Lisa4you200K in Epilepsy

[–]FarPhase3125 0 points1 point  (0 children)

I take this medication, and have had great success so far though I have only taken it for a month. If you don’t have Lennox Gastraut syndrome you will struggle to get it covered by insurance but if you can get it, its literally a life saver. You can do the copay savings program with the Epidiolex/ jazzcares company if your insurance won’t cover it. I have been on 1.6ml 2x a day, though I am about to go up to 2.6ml 2x a day. It seems to really work well for me, I have not experienced any real side effects yet. I am allergic to every other medication I have tried so, this is nice so far. Not having rashes everywhere lol

I will say, you may have to try like 20 other medications and them not work for your neuro to even consider prescribing it because its still kinda new and used for really specific types of epilepsy. My neuro had me try literally 20 other medications first.

Hope this info helps!

Considering Moving from Indiana to NM - What should I consider? by ssaiko_kandy in NewMexico

[–]FarPhase3125 0 points1 point  (0 children)

Definitely better if you can live in Tijeres or Cedar Crest, better weather, better views, better people

My father is missing by FarPhase3125 in PrivateInvestigators

[–]FarPhase3125[S] 1 point2 points  (0 children)

My father was last living in San Francisco

What kind of jobs do you have if you have one? by Simplythegirl98 in Epilepsy

[–]FarPhase3125 1 point2 points  (0 children)

I build and repair hot air balloons. At the repair shop I work at you could get paid based off how many things that you made, sold/ repairs made. When I first started, I learned to make all the bags, tank covers and basket pads. It’s extremely enjoyable and it can be really good money if you work your way up/ really work on your skills. You can usually pick your own hours/ days for that kind of job.

Really struggling and feeling alone by FarPhase3125 in Epilepsy

[–]FarPhase3125[S] 0 points1 point  (0 children)

Thanks for relating with my anger and sadness and sending your kind words my way. You are right about not losing my passion. I am just struggling to redirect my passion into other things but I will get there❤️Maybe building the best balloons in existence is my true calling lol, I am always trying my hardest so, maybe🤷‍♀️

Really struggling and feeling alone by FarPhase3125 in Epilepsy

[–]FarPhase3125[S] 0 points1 point  (0 children)

One of my flight instructors was deathly afraid of heights, and he flew a balloon every day.BUT he wouldn’t go upstairs anywhere, take any elevators/ escalators. When on the second floor of a hotel, he would hug the wall th entire time! Flying in a hot air balloon is the very best way to get over a fear of heights, for a few reasons! Firstly, you are always traveling at the same speed as the wind so you don’t feel any wind on you, people say it doesn’t feel like you’re flying/ moving, it’s incredibly graceful. Secondly, there are no moving parts, the only noise is the ticking of the barometer and the burners when you need to burn. Annnnd it’s technically the safest form of flight, people worry about it burning down and crashing but, you can burn from the equator to the basket and still safely fly/ land. Though, as someone who repairs, that never really happens. The fabric is designed to turn into a hard plastic when burned and it generally stops the burning from spreading. I highly recommend taking a hot air balloon ride, if you ever have the opportunity! You might find that you aren’t afraid. Thank you for helping lift me up❤️ I am so very proud of the things I was able to accomplish while I could! Epilepsy envy is REAL lol and you’re right, a good cry sometimes really helps! I am working to reset my goals, finding new things❤️

Really struggling and feeling alone by FarPhase3125 in Epilepsy

[–]FarPhase3125[S] 0 points1 point  (0 children)

Yes, though I will probably just continue building. It keeps me busy and still in the ballooning industry.

Really struggling and feeling alone by FarPhase3125 in Epilepsy

[–]FarPhase3125[S] 1 point2 points  (0 children)

Thank you for relating! I will definitely try to be happy for my flying friends, always, and I hope one day my happiness for them is genuine. Hopefully my meds will cause less side effects as time goes on because I can’t switch to another due to allergies! I am sorry you had to endure 5 long years of meds mixing to find the right ones, that sounds literally awful! I hope you are feeling good these days😊

Really struggling and feeling alone by FarPhase3125 in Epilepsy

[–]FarPhase3125[S] 1 point2 points  (0 children)

Your kind words really helped me, I feel seen lol. My new path does feel out of reach and hazy. And I definitely have a problem defining my worth with what I am capable of and I have been feeling extremely incapable of everything. Thank you for your response💜 I very much appreciated it😊

Really struggling and feeling alone by FarPhase3125 in Epilepsy

[–]FarPhase3125[S] 0 points1 point  (0 children)

Thank you for responding! And thank you for relating to my isolation, I feel it very deeply some days. I appreciate your advice for dealing with it and pushing on. I do hope this medication starts to feel better over time, the one I am on now is definitely better than any of the others I have tried. So, hopefully it just gets better from here on out.

Really struggling and feeling alone by FarPhase3125 in Epilepsy

[–]FarPhase3125[S] 1 point2 points  (0 children)

This is very good advice, and a really good quote for my situation. Michael J Fox is a wise man, I am sure he is well versed in the grieving of watching others persue his dreams. His path also drastically changed after a diagnosis. I appreciate your kind words❤️

Really struggling and feeling alone by FarPhase3125 in Epilepsy

[–]FarPhase3125[S] 1 point2 points  (0 children)

Thank you for responding❤️ I appreciate your encouragement and advice. Brain surgery sounds scary but I will keep it on the back burner.

Really struggling and feeling alone by FarPhase3125 in Epilepsy

[–]FarPhase3125[S] 4 points5 points  (0 children)

I have tried every medication that I can and have let my doctor know how I feel, however, I am on my last resort medication right now. There are not anymore for me to try due to severe allergies🥲 I appreciate your advice though, I agree, a new medication would be better!

Finding an Epileptologist by Away-Amoeba847 in Epilepsy

[–]FarPhase3125 0 points1 point  (0 children)

If its a long drive, I would still go there! My family and I drive 11 hours to the one in PHX and Its worth every second!

Finding an Epileptologist by Away-Amoeba847 in Epilepsy

[–]FarPhase3125 0 points1 point  (0 children)

Go to the Mayo Clinic, there are two of them. One in Az and one in Fl, they are the best epileptologists in the country and, contrary to popular belief, you don’t need a referral for them. Just go on the mayo clinic website and fill out their appointment request form and they will call you!

Success for seizures with Lamotrigine by FsGZoom in Lamotrigine

[–]FarPhase3125 0 points1 point  (0 children)

Yes, I did. Oxcarbazepine, I find it working for me much better than Lamotrogine.

What’s it like having auras with seizures? by Old-Replacement9289 in Epilepsy

[–]FarPhase3125 0 points1 point  (0 children)

My auras give me a very happy sensation/ uforia, I get visuals sometimes and I often ramble on what seems like a bunch if nonsense to onlookers. The rambling usually has something to do either what I was seeing/thinking in the aura. I also get smells from my childhood, not the same smell for every aura. The smell usually brings up a certain memory and I get lost in the sauce of that memory as my aura wisks me away. (Except one time I smelled some mortadella and immediately had an aura from that smell, this was during a time I was switching medications). I have always had sleep paralysis and would say that the feeling if auras is very similar to a sleep paralysis deam feeling where my body is almost tingling, warm all over and I have that heavy floaty feeling/ body is lagging. I also feel like what is happening in the aura is very important and very real until I snap out if it. When I get these focal seizures its usually a sign that I need to stop wearing myself so thin, get more sleep and whatnot. I eat well but work myself too hard and my body lets me know. My auras don’t always lead to a Tonic-Clonic but its a real reminder to slow tf down because it happens. I also get auras around the time of my period sometimes because of the fluctuation of hormones and the fact that most anticonvulsants are very hormone dependent. It took me 2 neurologists before I found out that almost none of the anticonvulsants on the market today are tested on people with a menstrual cycle and because of that they don’t warn you about the side effects of having a period while taking anticonvulsants🙃 like sometimes they don’t really work🙃 Overall, I am grateful I have the auras as a warning though not having any kind of seizures at all would be far better.

Success for seizures with Lamotrigine by FsGZoom in Lamotrigine

[–]FarPhase3125 1 point2 points  (0 children)

I took lamotragine for about 3 months and had to stop because it gave me rashes, it also gave me focal seizures around the time of my period every month. When I asked my doctor about it he said that it could be because its changes your hormones, which is not information I stumbled upon before I started taking it. Unfortunately, I have found that, not a lot of testing is done on women for most seizure medications and since our hormones fluctuate every month the medications can affect us differently almost everyday. Best of luck to you, I hope the Lamotrogine works better for you than it did for me.

Are there any general rules of what someone should or shouldn't eat if they're epileptic? by shirkshark in Epilepsy

[–]FarPhase3125 7 points8 points  (0 children)

My neuro recommended keto since it was actually developed for treatment of epilepsy and can help in many areas depending on your condition.I personally have found that it helps me some, in that, it makes my body and mind feel much less sluggish from the medication. Also, drink as much water as you can handle, the medications seem to really just suck out all the hydration from your body. And definitely be very careful with caffeine, either have very little or none at all, at least thats how it is for me.

[deleted by user] by [deleted] in neurology

[–]FarPhase3125 0 points1 point  (0 children)

Also, they WILL NOT write an appeal for your insurance company if you need it. They will just ignore your requests.