Finally getting Vyepti 300mg (migraine preventative)?!
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- Опубликовано: 8 фев 2025
- Hello! I'm Kelly and I've had Meniere's disease since 2010. On May 25, 2023, I had a brain surgery for Meniere's disease called a Vestibular Nerve Section and Craniotomy after I exhausted all treatments for Meniere's disease. I kept a private video journal while I recovered from surgery and recently decided to make it public in hopes it would help others go through this surgery recovery. The date this video was recorded is listed below. I'm happy to answer any questions you have or talk more about my experience. Recovering from brain surgery was unlike anything I've every experienced. But I've come so far and I am SO glad I did it. Thanks for going on this journey with me!
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In good time Kelly! I hope this dose of Vyepti gives you relief and soothes the migraine until it no longer torments you.
Have a nice week!
thank you!!
I wish all the best to you, Kelly, you certainly deserve it! You are an amazing lady and I'm so proud of you! Your service dog is awesome too. Please take care and I'm praying for you.
Thank you so so much! I appreciate all you said. You touched my heart. 💜
That's great news. You look amazing. You have been through so much . Your one strong woman. I hope this new infusion helps rid you of these horrific migrianes and vertigo. Your an inspiration for sure❤❤❤..
Thank you! Trying my best one day at a time. Sending love your way! I hope you are doing as well as possible.
Such a beautiful soul ❤
That is kind of you. Thank you
@@IncredibleAnyway thank you , yesterday I started therapy with Betaserc ( betahistin ) 👏, greetings from Croatia ❤️
Oh yay! I hope it is really helpful for you! I'm so glad you said hello
@@IncredibleAnyway Yes , I am much better today, and I'm not afraid 🌞🤗
thank you for sharing
happy to :)
Purple is my favorite color too. I’ve loved it since I was 15 yrs. old. It was my wedding color. You’re looking good. Love how Bene takes advantage of his sleep time when he can. Such a sweet sweet dog. Hope the new infusion works 100 percent for you. You deserve a miracle medicine. You said you didn’t want to cry well I cry for you, tears of joy of course.
The vanilla Mac & Cheese is funny. That’s the only milk I buy too. It was funny with the words ALMOND COW! Continued prayers from your Prayer Warrior, prayers the new infusion works. Take Care🙏🙏🙏🩷🤗🤗
I love that you love purple too! Anything in particular that made you start loving it at 15? How neat it was your wedding color! Thank you for being so emotional with me about the Vyepti! Its such a gift to have access to such a medicine. Thank you for your prayers. Means hte world as always. Love to you Helen.
My love for purple, I believe came from my mother she loved the flowers in our yard they were purple Flag Lilies and told me how pretty she thought they were. Then I realized I love the color too. Continued prayers 🙏🤗🩷
I love that! Thank you for sharing!
The thing is meds affect everyone so differently even for the same issues. Praying for you and your friend ❤
It is so true - especially with Migraine meds. Everyone is so different.
I’m going in for my first vyepti infusion Jan 7… I’m so nervous but excited, hopefully it works well. My migraines are becoming debilitating and nothing else has worked…. 🥺😢🙏
How did it go!!!??? I'm guessing they started you on on 100mg. Remember it takes time to see improvement. Also- I did SO Much better when they switched me to 300mg. SO know that that is an option. CUrrently my neuro has me on Vyepti and Botox for prevention and the combo is doing well for me.
@IncredibleAnyway I can't wait to try these options. I am 37 and have migraines since I was 5. I have tried so many things. My neurologist just took me off my migraine shot because it didn't work. He is seeing if my insurance will approve botox but I am also going to ask him about this. I have on average 15 migraines a month. I want relief so bad.
😂 vanilla mac&cheese. 🎉for Viaptie. I keep my fingers crossed it works for you. 🤞
Bene is soooo smart getting his ball from the garden before tge mower gets to it. ❤
I've noticed that bene sometimes bark when he sees you. Is that out of joy for seeing you? Or does he get starteled sometimes?
Big hug Marloes ❤
Ah Bene is barking because he is happy. The only time he roo's like that is when he gets his ball. He's telling me just how happy he is. Otherwise, he doesn't make a peep. :)
Kelly I wish I COULD sleep all cozy & cute with my blanket but here in Italy we've had extreme temperatures for a while now (& there's no way I can afford a/c) - not complaining tho, I live on a tiny island & I adore swimming🌊Oh yeah thank you for your invitation to supper at ur house but I don't think I'll be crossing the Atlantic to take you up on that - I'll just stick to my Italian-Made pasta🤣
Ah that must be tough without ac! Oh wow that you live on an island! How neat that you swim. THat sounds perfect to me right now. I am very happy for you and your Italian-made pasta - it must be Delicious!
Hey Kelly! I got a balance assist harness form Bold Lead Designs for my service dog that I got from an organization. They said that this harness is very unsafe for my pup and I told them that they test and make sure that the harness is cleared by many professional vets with PDHs. The lady that runs the organization said she doesn’t give a shit what the professionals say. This harness has changed my life in such a short amount of time. I can walk without walking weirdly to the side. And I have so much less back pain when using this. I also feel more sable with the ground. Do you think they can deny me special equipment like that?
Hi! I'm stumped why your service dog program would be so against the Bold Lead Designs harness. MIne refers to it as the best of all the harnesses out there. I'm with you - it changed my life and I LOVE that it has changed yours. I'm frankly shocked that anyone would be so against it. As you said BLD has participated in so many studies at the local university to make sure the harnesses do NOT harm the dogs. I would NEVER put it on my dog if I thought it was unsafe for him or hurting him. We both know how expensive BLD harnesses are - and for good reason. I actually called and spoke to BLD when I was getting my harness and they talked to me about all the things they do to make sure the harnesses are safe. Maybe it would help if the lady at your program did spoke to BLD? Or maybe to another SD org that uses BLD? The one I went to - ECAD - is approved by Assistance DOgs International and that is a high standard to meet, so they wouldn't recommend a BLD harness if it was bad.
What do they recommend for a harness then if not BLD?
Do you legally own your service dog? I mean - have they transferred ownership to you? Unfortunately they may be able to take away your dog if you continue to use a BLD harness and they still own the dog and don't want you to use it. If you have ownership, they can't deny you using the harness with your own dog. It all depends on the paperwork you signed when you got your dog.
I'm sorry this is happening to you. I'm shocked.
@@IncredibleAnyway The dogs just wear a really light weight cape. They did transfer ownership to me. But I’m still scared that they can say that I’m “abusing the dog” In the contract it says “ No heavy packs or oxygen tanks” but some other person that has a dog from them had/ has their dog carry an oxygen tank. And they were okay with that. So I don’t understand what’s wrong with the BLD.
Oxygen Tanks are about 5/10 pounds. They said that the BLD is really heavy for the dog. But it’s not even heavy compared to an oxygen tank.
Also my apologies for replying so late! I was in the hospital.
I'm sorry you were in the hospital. No worries on reply time. I struggle with it myself. I can understand your concern. But since you have ownership now, they can't deny you using a BLD harness in my opinion. Your dog, your choice. I don't know how they could prove you are abusing the dog if you are using a harness that is commonly used in the service dog community and by other programs that are certified by ADI. I mean, they'd have to get lawyers involved to take your dog away nad there is NO way they could prove you're abusing the dog by using this harness. A BLD harness does not qualify as a heavy pack at all- totally different language. If they allowed another dog to carry an O2 tank, then you should be fine with your harness. I haven't actually weighed my harness, but I remember reading somehwere on BLD site that it is 2.5 lbs which is NOT heavy. Heavier than a cape, yes, but not a heavy pack or an 02 tank.
Do you ever do protein shakes or smoothies when you can’t cook but need to eat
I have on occasion, but I do not like them. They are difficult to get down.
My mom accidentally put her vanilla almond milk in grits once, that was terrible too lol
Yeah that sounds yucky! I would not enjoy that either lol
Any oain in the body from migraine mines all neck shoulders now daily ime hypermobile to
It can be true that neck pain can be related to migraine, but it is not true for all people. Not all pain is related to migraine. Often people who are hypermobile also have EDS which is incredibly painful.
I am 27 years old and have concerns that I may be suffering from Meniere's disease. I have undergone the following tests:
Brain MRI: Normal
Inner Ear MRI with Contrast (CISS Sequence): Normal
Hearing Tests: Two normal tests; one showed mild hearing loss
VNG Test: Normal
On May 25th, after working on my computer for 10-11 hours straight at home, I went out to buy ice cream. When I returned and lay down in bed, I felt slight dizziness and numbness on the right backside of my head. When I tried to walk, my right leg stumbled a little. I didn't understand what was happening, so I lay down and tried to sleep. The next morning, I experienced acute vertigo that lasted for almost 12-14 hours, from morning to late evening.
Currently, I am experiencing the following symptoms:
Tinnitus, occurring once or twice a day for 4-5 seconds
Slight ear pressure
Slight ear pain
Sensitivity to loud sounds
Slightly shaky and bouncy vision at night
Bouncy vision for 3-4 seconds whenever I close my eyes and then open them
These symptoms are persistent, and I stuck in my house, afraid to go outside.
Doctor diagnosed me with vestibular migraine !!
I am confused is it really migrane or meniere's
Hi. I will try to help you out as much as possible from a patient perspective. Meniere's and Vestibular Migraine both have vertigo as a symptom. The symptom that you did not list that is necessary for a Meniere's diagnosis is hearing loss. You did mention the mild loss on one test. Meniere's has a specific type of hearing loss where it occurs in the low frequencies first. Sometimes doctors will not diagnose Meniere's until the hearing loss is more significant than a mild loss. And if the hearing loss you showed is not in the low frequencies, they won't diagnose it either.
What type of doctor did you see that gave you the vestibular Migraine diagnosis? If you haven't seen an ENT (Ear nose and throat dr), I would. Sometimes doctors themselves aren't sure if it is one thing or another.
I'm so sorry that you have this going on. The symptoms you listed are really challenging adn I can see why this is so frustrating. You're not alone. SO many patients have this frustration of not knowing exactly why they are having vertigo. It can have so many causes. The good news is that your MRI was normal. But I know that doesn't help when you wnat to know what it is.
Did your doctor prescribe anything for the migraine and or the vertigo?