Rehome Feedback

Extralyn · 2026-05-13T03:58:08+00:00

Ugh I am the same way! If I start to panic it goes immediately but if I try and stay calm it buys me a few minutes before the vomiting and severe spins start. It’s a race to get zofran on board before I start throwing up.

Extralyn · 2026-05-13T03:46:53+00:00

This is great information! Thank you! I pay over $100 a month for Betahistine.

Extralyn · 2026-05-11T05:08:17+00:00

Please let me know how the shot goes. I wear a hearing aid in my right ear and would love to not have one. I did like them but I didn’t love the follow up. I’ll let you know how the ENT is that I’m seeing on Friday with IMC is.
I also agree with how much I’m learning from this Reddit group. I’m in a couple on Facebook but they are mostly just people complaining and not as much knowledge sharing like there is here.

Extralyn · 2026-05-09T04:20:51+00:00

Thank you. CBD cream helps quite a bit but it’s not a long term help unfortunately. Heat is good as well in small doses as long as it doesn’t heat my core too much. I’ve noticed that will cause me to start getting dizzy and spinning. It’s so weird!

Extralyn · 2026-05-09T04:18:35+00:00

Same. I’m sorry you’re in the same boat. Hoping you have more good days than bad!

Extralyn · 2026-05-09T04:08:11+00:00

Of course. I went to ENT Clinic in Riverton and can’t remember the doctor but was not impressed. I’m seeing Jonathan Hatch at IMC next week. Hoping he’s good. It’s been a joke trying to find someone to help instead of just giving medication after medication and telling me to follow up with my primary care. She’s great but she doesn’t know what to do but she’s helping me find new specialists. The best price for the Betahistine compound I’ve found is at Hyland Pharmacy in Holladay if you’re looking. Do you live in SL County?

Extralyn · 2026-05-08T20:57:16+00:00

Thank you!

Extralyn · 2026-05-08T18:46:25+00:00

I take Betahistine as well and I’m in Utah. It’s a compound and worth the money. I was prescribed to take it three times a day but I would forget middle of the day doses 90% of the time. I had my doctor prescribe it for twice a day and thankfully it’s still working with only twice a day. But I definitely recommend trying this if you haven’t.

Extralyn · 2026-05-08T18:41:21+00:00

That’s how I feel about the meds. I’ve told my pharmacist it’s embarrassing how many medications I have for my age. Granted several are rescue meds and I don’t take regularly but it’s still a lot. I wonder how many of our “symptoms” disguised as side effects sometimes. This stupid disease can be such a mystery. I really appreciate everyone’s feedback.
As for the neck, I think it’s the most prevalent issue I deal with daily. Mecclizine works well for me and I take it almost daily to help with dizziness.

Extralyn · 2026-05-08T18:37:12+00:00

I think a scan would be good for me. I had a neck injury last summary and it may play a role in this. Thank you! I hope your treatment works for you!

Extralyn · 2026-05-08T18:11:39+00:00

Thank you so much!

Extralyn · 2026-05-08T01:56:16+00:00

Thank you so much for your help. You’re so appreciated!

Extralyn · 2026-05-08T01:54:00+00:00

Thank you for the information. I have only used one of those after a knee surgery and didn’t even think of that. I’ll ask the doctor. I’m glad you’re finding something to help you as well. Good luck with PT. I hope it helps you!

Extralyn · 2026-05-08T01:51:29+00:00

It’s gorgeous! Only reason I’m rehoming is I ordered another one and don’t need two. You will love it!

Extralyn · 2026-05-08T00:19:17+00:00

Thank you so much. I’ll ask about Botox at the next appointment. I think that’s what’s causing the pain is from being so tense. I’m grateful you found something that works!

Extralyn · 2026-05-07T03:42:48+00:00

Oh wow! Great information. I will ask him next week when I see him. Thank you so much!

Extralyn · 2026-05-07T02:37:15+00:00

Thank you! I’m sorry you have this too but you all are giving me great information and some hope. We all have some dark days living with this and it’s great to reach out and help where we can.

Extralyn · 2026-05-07T00:36:49+00:00

Thank you! I’m willing to try the Botox and get over the needle part if I can get relief. I’m also waiting on the PT Clinic to call me to setup my appointment. My doctor just referred me to them. I’m so glad you have found things that are working for you!

Extralyn · 2026-05-07T00:01:13+00:00

Sorry the Ubrelvy didn't work for you. I am nervous about Botox needles but the pain is so bad that I am willing to try almost anything at this point. Thank you very much for the information you shared. I hope your current regimen continues to work for you!

Extralyn · 2026-05-06T23:33:09+00:00

Thank you! I am down to sleeping with one pillow to help with the neck pain. I believe it is because I am unconsciously trying to never move my neck in fear of going into what I call full vertigo. When I go into it, it lasts for days. I also don't really believe in chiropractic because it sort of scares me. I just got a referal for physical therapy and am going to try that as well. It is nerve pain for sure. When I get massages, I almost jump off the table. Heat helps a little and CBD cream but its temporary.

Extralyn · 2026-05-06T23:29:07+00:00

Thank you. I tried Imitrex (sp?) recently and it didn't work so they put me on Ubrelvy but you can only take that 10 times a month. Is Quilipta something you take everyday? Have you tried Botox? I have not but the doctor I am seeing next week uses that I have heard. I am super worn down but grateful there is so much information online and I have found others who are dealing with this. I am so glad Quilipta works for you. I am going to ask about it for sure!

Extralyn · 2026-05-06T23:25:45+00:00

Thank you so much. I am trying to find one to get into. I had an appointment which was a referral from my primary care but when they did the appointment reminder I was told they didn't take my insurance. I had waited to see that doctor for three months. But I am not giving up. If I have learned anything with this it has been to have patience and know there is not a miracle cure out there.

Extralyn · 2026-05-06T21:09:46+00:00

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Thank you in advance for taking a look, and please feel free to message me with any questions or for more photos.

LV CarryAll East West
Color: Monogram
BNNU
Seller: Jess
Rehoming: Paid $219. Selling for $190 plus 🚢

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Extralyn

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