joy
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Post by joy on Oct 16, 2023 9:03:01 GMT -6
Ibuprofen does exactly nothing for my headaches so this hasn’t been discussed.
My neuro was - however - very unhappy with me taking Imitrex more than 1-2x week due to rebound headaches.
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sae82
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Post by sae82 on Oct 16, 2023 9:51:47 GMT -6
Ibuprofen does exactly nothing for my headaches so this hasn’t been discussed. My neuro was - however - very unhappy with me taking Imitrex more than 1-2x week due to rebound headaches. i do it often and i dont get rebound headaches-when youre in the much pain, you do what you have to
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joy
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Post by joy on Oct 16, 2023 9:52:57 GMT -6
Ibuprofen does exactly nothing for my headaches so this hasn’t been discussed. My neuro was - however - very unhappy with me taking Imitrex more than 1-2x week due to rebound headaches. i do it often and i dont get rebound headaches-when youre in the much pain, you do what you have to Yes, so do I. Just passing along info.
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sae82
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Post by sae82 on Oct 16, 2023 9:56:35 GMT -6
Eagles and joy , would you mind sharing how often your neurologists said was ok to take acetaminophen/ibuprofen without triggering rebound headaches? My prior neuro (who dx the loss of reflexes at the patella as psych - and it’s absolutely not, it’s SCI- so I have some doubts about competency) said I could only take it once or twice a month without triggering rebounds. Current neuro says once a week (I’m averaging one dose of Advil dual action, a combination of the two, once a week) is fine unless I there’s a pattern of it triggering headaches. There’s no pattern, and I’ve never been prone to rebounds - even when the headaches were still bad and I was on ibuprofen round the clock for two or three weeks with at least one acetaminophen dose every couple days post orthopedic injury to reduce swelling it never changed frequency and I never had rebounds when I went off. But his frequency ok is so different than the prior neuro’s frequency ok that I’m kinda wondering. But he’s good and has no issues managing all my mess, including the headaches, so I’m definitely not looking for a second opinion. But I had three migraines last week, two bad tension headaches, and migraine level pain that isn’t a migraine from looking at a screen all day when the light sensitivity from the concussion is still so bad. Nurtec (my neuro got the prior authorization approved!) is working really well for the migraines, and relaxing my muscle spasms is working really well for the tension headaches. Absolutely nothing touches the concussion headaches once they get bad, and when I say I’ve tried everything I can access, I do mean everything. Haven’t done that piercing or Botox or emgality, but everything else. And I’m used to managing other pain with modalities that can work for headaches but most people don’t use, because the only pain medication I’m on is for nerve pain, and that doesn’t touch bone/muscle/tendon/ligament/etc. pain. For now, we’re primarily differentiating the concussion headaches by what treatments don’t work, but neuro says we’ll revisit that if it doesn’t get better in six months. Even OTC treatments help my migraines - lying down completely still in a completely dark room with ice packs on my head and heat packs on my neck and caffeine and Aleve helps a little. Not much, but it’s something. Relaxing muscle spasms always helps the tension headaches. And I’ve always gotten auras with migraines and the pain is in a different area than what we think are concussion headaches. Can you try a preventative? the injectable cgrps didnt work for me, but i'm on quilipta and IV Vytepti now.
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senneth
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Post by senneth on Oct 16, 2023 10:30:50 GMT -6
sae82 I’m technically on a preventative. It’s an insurance requirement to approve Nurtec as PRN. It doesn’t prevent migraines for me, but I take it daily at the dose they rx for preventing migraines. My next neuro appointment we’re going to revisit using Nurtec as a preventative instead of a rescue med. I’m usually only averaging 1-2 migraines a week. Neuro says when Nurtec works as a rescue, it usually also works for that person as a preventative. Basically, I’m already on more medications than we want me to be on, but we can’t drop any. Kidney and liver numbers are all good, but still - the more meds you’re on the higher the risk. So at one migraine a week, using Nurtec as rescue is a lower routine medication. If I hit three routinely, I might as well be taking it as a preventative. My migraines weren’t a huge problem before this concussion, so there’s a decent chance they might improve and get closer to my pre-concussion frequency as I heal from the concussion.
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senneth
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Post by senneth on Oct 16, 2023 10:34:06 GMT -6
Ibuprofen does exactly nothing for my headaches so this hasn’t been discussed. My neuro was - however - very unhappy with me taking Imitrex more than 1-2x week due to rebound headaches. Thank you! I take ibuprofen for joint pain, and it helps a little with that. Especially if I take it at the same time as acetaminophen. I didn’t get the Nurtec pre auth approved until recently, so depending on how frequently I need it we may change it from rescue med to preventative at my next appt.
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sae82
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Post by sae82 on Oct 16, 2023 11:16:36 GMT -6
sae82 I’m technically on a preventative. It’s an insurance requirement to approve Nurtec as PRN. It doesn’t prevent migraines for me, but I take it daily at the dose they rx for preventing migraines. My next neuro appointment we’re going to revisit using Nurtec as a preventative instead of a rescue med. I’m usually only averaging 1-2 migraines a week. Neuro says when Nurtec works as a rescue, it usually also works for that person as a preventative. Basically, I’m already on more medications than we want me to be on, but we can’t drop any. Kidney and liver numbers are all good, but still - the more meds you’re on the higher the risk. So at one migraine a week, using Nurtec as rescue is a lower routine medication. If I hit three routinely, I might as well be taking it as a preventative. My migraines weren’t a huge problem before this concussion, so there’s a decent chance they might improve and get closer to my pre-concussion frequency as I heal from the concussion. Yea I had tried that but it didn’t work for me but I’m a special snowflake
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AmyG
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Post by AmyG on Oct 16, 2023 12:40:02 GMT -6
I don't get migraines But was on a lot of ibuprofen and Tylenol for osteoarthritis in my knee. And I'm get rebound headaches the next morning if I was taking it daily. Not as often headaches if taking it every other day or lower dose, but I needed it daily. So started to try other meds meloxicam, diclofenac and celebrex. They work for pain and no more headaches too.
To say 1. How often you can take ibuprofen tylenol without rebound headaches is gonna vary. And 2. Maybe another med for joint etc pain would also take care of concussion headaches?
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Eagles
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Post by Eagles on Oct 16, 2023 14:34:16 GMT -6
Ibuprofen does exactly nothing for my headaches so this hasn’t been discussed. My neuro was - however - very unhappy with me taking Imitrex more than 1-2x week due to rebound headaches. i do it often and i dont get rebound headaches-when youre in the much pain, you do what you have to When you're medicating that frequently you can't tell what is migraine and what is rebound. That's why most neurologists want patients to dial back when possible. I was trapped in a headache cycle for 3 months but eating meds like candy because I had to function, but long term I was basically self sabotaging. Triptans can also cause heart issues.
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Eagles
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Post by Eagles on Oct 16, 2023 14:45:21 GMT -6
sae82 I’m technically on a preventative. It’s an insurance requirement to approve Nurtec as PRN. It doesn’t prevent migraines for me, but I take it daily at the dose they rx for preventing migraines. My next neuro appointment we’re going to revisit using Nurtec as a preventative instead of a rescue med. I’m usually only averaging 1-2 migraines a week. Neuro says when Nurtec works as a rescue, it usually also works for that person as a preventative. Basically, I’m already on more medications than we want me to be on, but we can’t drop any. Kidney and liver numbers are all good, but still - the more meds you’re on the higher the risk. So at one migraine a week, using Nurtec as rescue is a lower routine medication. If I hit three routinely, I might as well be taking it as a preventative. My migraines weren’t a huge problem before this concussion, so there’s a decent chance they might improve and get closer to my pre-concussion frequency as I heal from the concussion. I'm so glad you got the approval and that it's working for you!
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senneth
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Post by senneth on Oct 16, 2023 15:02:59 GMT -6
sae82 I’m technically on a preventative. It’s an insurance requirement to approve Nurtec as PRN. It doesn’t prevent migraines for me, but I take it daily at the dose they rx for preventing migraines. My next neuro appointment we’re going to revisit using Nurtec as a preventative instead of a rescue med. I’m usually only averaging 1-2 migraines a week. Neuro says when Nurtec works as a rescue, it usually also works for that person as a preventative. Basically, I’m already on more medications than we want me to be on, but we can’t drop any. Kidney and liver numbers are all good, but still - the more meds you’re on the higher the risk. So at one migraine a week, using Nurtec as rescue is a lower routine medication. If I hit three routinely, I might as well be taking it as a preventative. My migraines weren’t a huge problem before this concussion, so there’s a decent chance they might improve and get closer to my pre-concussion frequency as I heal from the concussion. I'm so glad you got the approval and that it's working for you! Thank you! I have no words for how happy I was once it was approved. And they did the preauth for the number of pills required to use it as a preventative, so if we switch to using it as a preventive the approval doesn’t have to be redone.
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Eagles
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Post by Eagles on Oct 16, 2023 16:28:56 GMT -6
I'm so glad you got the approval and that it's working for you! Thank you! I have no words for how happy I was once it was approved. And they did the preauth for the number of pills required to use it as a preventative, so if we switch to using it as a preventive the approval doesn’t have to be redone. I save all my prior auth letters because they're a badge of victory 😂
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senneth
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Post by senneth on Oct 16, 2023 16:35:20 GMT -6
I really thought one of the triptans worked for me because if I took it soon enough I could usually see well enough to read if I had to while the migraine lasted (unmedicated, my vision doubles, especially if there’s a significant amount of light) and it usually cut the migraine to 24-48 hours instead of 72. But it didn’t do much else. I took Zofran for the nausea/vomiting. And the other triptans I tried did nothing.
Then the neuro asked about my migraines at one of my follow ups after the first concussion, and it was news to me that that wasn’t considered an effective treatment.
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AmyG
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Post by AmyG on Oct 16, 2023 16:36:03 GMT -6
Pain sucks and jumping hoops for insurance sucks. We can agree right?
I'm surprised my pharmacist was able to get my Lyrica for $14 instead of $50 copay not using insurance. So thats good
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senneth
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Post by senneth on Oct 16, 2023 16:41:29 GMT -6
AmyG I’m glad the pharmacist was able to get it down! I check GoodRx prices when my rx copay is high - their price is lower about half the time. I haven’t tried lyrica. I take gabapentin at night for nerve pain, and it works, so my dr recommended against trialing lyrica. But I can’t take gabapentin during the day because I can’t think when I take it.
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senneth
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Post by senneth on Oct 16, 2023 16:50:16 GMT -6
I don’t know how good my neuro is with headaches specifically - he’s new.
As in I saw him in his first couple days practicing at his first job after passing boards new.
But he has strong ties to the research hospital clinic I’d need to get into in an emergency (I’ve been a patient there, but they stabilize then discharge - they don’t keep patients long term unless they can’t stabilize them). So I really, really don’t want to switch. That connection can make a huge difference in speed of accessing care.
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AmyG
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Post by AmyG on Oct 16, 2023 17:05:11 GMT -6
AmyG I’m glad the pharmacist was able to get it down! I check GoodRx prices when my rx copay is high - their price is lower about half the time. I haven’t tried lyrica. I take gabapentin at night for nerve pain, and it works, so my dr recommended against trialing lyrica. But I can’t take gabapentin during the day because I can’t think when I take it. I was taking Gabapentin until I got to 300mg a day and then I was so incredibly dizzy and I'm a fall risk already. It made such bad vertigo. Good RX prices I was looking and cheapest was 14.97 for 50mg 3x day dose of generic lyrica at a pharmacy I don't use. So when my Fry's (kroger) pharmacist said 14.70 using her singlecare discount code I was like great I can use a pharmacy I'm used to that has a drive thru and save more than good rx says it could save me. I was trying to get all my meds moved to cvs because there I can get 90 day subscriptions of maintenance drugs and can coordinate them so I pick up 2 or 3 things at once instead of going to the pharmacy every week. but I guess that's not in the books.
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Eagles
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Post by Eagles on Oct 16, 2023 18:05:23 GMT -6
I really thought one of the triptans worked for me because if I took it soon enough I could usually see well enough to read if I had to while the migraine lasted (unmedicated, my vision doubles, especially if there’s a significant amount of light) and it usually cut the migraine to 24-48 hours instead of 72. But it didn’t do much else. I took Zofran for the nausea/vomiting. And the other triptans I tried did nothing. Then the neuro asked about my migraines at one of my follow ups after the first concussion, and it was news to me that that wasn’t considered an effective treatment. The CGRP meds have completely changed the game for a lot of migraine people! Now triptans are considered old school. For me personally, I take Relpax for certain migraine attacks and Ubrelvy for others. It depends on the trigger and location.
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senneth
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Post by senneth on Oct 16, 2023 19:12:23 GMT -6
I really thought one of the triptans worked for me because if I took it soon enough I could usually see well enough to read if I had to while the migraine lasted (unmedicated, my vision doubles, especially if there’s a significant amount of light) and it usually cut the migraine to 24-48 hours instead of 72. But it didn’t do much else. I took Zofran for the nausea/vomiting. And the other triptans I tried did nothing. Then the neuro asked about my migraines at one of my follow ups after the first concussion, and it was news to me that that wasn’t considered an effective treatment. The CGRP meds have completely changed the game for a lot of migraine people! Now triptans are considered old school. For me personally, I take Relpax for certain migraine attacks and Ubrelvy for others. It depends on the trigger and location. I knew there were new medications, but the only specialty I hate more than neuro is ortho, and for more than a decade the migraines weren’t frequent enough to deal with finding a neuro when I had a dr who would continue the triptan rx. Great neurologists exist, just like great orthopedists. I like my current neuro and have a couple orthopedists I think are great. But my previous experiences with them were pretty damn bad across the board for neuro and really damn bad for ortho. Ortho carries more of the blame than neuro, but if neuro had caught what they should have I’d be able to walk without crutches.
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Eagles
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Post by Eagles on Oct 16, 2023 19:25:38 GMT -6
The CGRP meds have completely changed the game for a lot of migraine people! Now triptans are considered old school. For me personally, I take Relpax for certain migraine attacks and Ubrelvy for others. It depends on the trigger and location. I knew there were new medications, but the only specialty I hate more than neuro is ortho, and for more than a decade the migraines weren’t frequent enough to deal with finding a neuro when I had a dr who would continue the triptan rx. Great neurologists exist, just like great orthopedists. I like my current neuro and have a couple orthopedists I think are great. But my previous experiences with them were pretty damn bad across the board for neuro and really damn bad for ortho. Ortho carries more of the blame than neuro, but if neuro had caught what they should have I’d be able to walk without crutches. I cannot tell you how much I love my neuro. Like, I hit the jackpot with him. He's been practicing for 40+ years and I'm basically begging him not to retire on me. Most empathetic, caring, and knowledgeable doc I have.
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sae82
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Post by sae82 on Oct 16, 2023 19:45:49 GMT -6
I knew there were new medications, but the only specialty I hate more than neuro is ortho, and for more than a decade the migraines weren’t frequent enough to deal with finding a neuro when I had a dr who would continue the triptan rx. Great neurologists exist, just like great orthopedists. I like my current neuro and have a couple orthopedists I think are great. But my previous experiences with them were pretty damn bad across the board for neuro and really damn bad for ortho. Ortho carries more of the blame than neuro, but if neuro had caught what they should have I’d be able to walk without crutches. I cannot tell you how much I love my neuro. Like, I hit the jackpot with him. He's been practicing for 40+ years and I'm basically begging him not to retire on me. Most empathetic, caring, and knowledgeable doc I have. My headache dr retired and I legit cried and asked what I was supposed to do without him. I see someone now that he personally trained but I still miss him and his knowledge and compassion. I think it’s really important when suffering from headaches to see someone who specializes in them and not general neuro if you can find one
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senneth
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Post by senneth on Oct 16, 2023 19:48:19 GMT -6
Eagles that’s awesome. I remember you talking about him. I hope he doesn’t retire any time soon. I had a specialist I felt that way about (like you with your neuro, I had their cell number) and when they moved, they hand picked their replacement and got me in with someone who didn’t even have a wait list because they were too full. It isn’t the same, but the new dr is very, very good. I hope that if your dr does retire, they’re able to do something similar.
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senneth
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Post by senneth on Oct 16, 2023 20:01:41 GMT -6
I cannot tell you how much I love my neuro. Like, I hit the jackpot with him. He's been practicing for 40+ years and I'm basically begging him not to retire on me. Most empathetic, caring, and knowledgeable doc I have. My headache dr retired and I legit cried and asked what I was supposed to do without him. I see someone now that he personally trained but I still miss him and his knowledge and compassion. I think it’s really important when suffering from headaches to see someone who specializes in them and not general neuro if you can find one I haven’t had a phenomenal dr retire on me yet (it’s probably coming in the next five years, though) but I’ve had a few move. And I did a lot of crying every time. I have really really good replacements for a couple of them, but it’s not the same. There was no local alternative option for one of them, so now I drive a few hours to see someone else who isn’t nearly as good.
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gingy
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Post by gingy on Oct 16, 2023 20:32:40 GMT -6
My headache dr retired and I legit cried and asked what I was supposed to do without him. I see someone now that he personally trained but I still miss him and his knowledge and compassion. I think it’s really important when suffering from headaches to see someone who specializes in them and not general neuro if you can find one I haven’t had a phenomenal dr retire on me yet (it’s probably coming in the next five years, though) but I’ve had a few move. And I did a lot of crying every time. I have really really good replacements for a couple of them, but it’s not the same. There was no local alternative option for one of them, so now I drive a few hours to see someone else who isn’t nearly as good. I am terrified my rheum will move. He’s the only one under 60 near me, and he’s phenomenal. My current job offers paid travel time if we have to drive to STL for treatment, but I’d really rather not.
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gingy
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Post by gingy on Oct 16, 2023 20:35:01 GMT -6
One of my lovely symptoms is mouth ulcers. I’ve got a giant one inside my cheek and I’m so over it. It takes forever to eat anything. And even talking hurts. I’ve got pred and peroxide mouthwash, but I’m too impatient. 🙃
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AmyG
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Post by AmyG on Oct 17, 2023 14:51:41 GMT -6
One of my lovely symptoms is mouth ulcers. I’ve got a giant one inside my cheek and I’m so over it. It takes forever to eat anything. And even talking hurts. I’ve got pred and peroxide mouthwash, but I’m too impatient. 🙃 Have you tried magic mouthwash? would that help?
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Eagles
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Post by Eagles on Oct 17, 2023 16:11:44 GMT -6
One of my lovely symptoms is mouth ulcers. I’ve got a giant one inside my cheek and I’m so over it. It takes forever to eat anything. And even talking hurts. I’ve got pred and peroxide mouthwash, but I’m too impatient. 🙃 Have you tried magic mouthwash? would that help? My pharmacist made up some for me when I had strep with the last of his liquid lidocaine. I don't know if there's still a shortage of the latter. But that stuff was a godsend.
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Post by Lord Disick on Oct 17, 2023 16:31:03 GMT -6
So, I go here now? I was diagnosed with osteoarthritis in my cervical spine. Okay. GREAT. But, I finally saw a spine specialist due to this and my scoliosis. Apparently the ever-increasingly awful migraines I’m getting may actually be cervicogenic headaches instead. If I address the arthritis, the headaches could lessen or go away. I’m getting an MRI of my cervical spine in case it’s decided that I need injections. I am starting PT (AGAIN, third time I’m trying) but with therapists who understand my arthritic and scoliotic spine. I also started acupuncture because enough doctors have asked me to and I’m desperate from neck pain, back pain and monster headaches. I may …be a believer after years of skepticism. Time will tell. OMG I get cervicogenic headaches on occasion and they are pure hell. I hope you get some relief.
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AmyG
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Post by AmyG on Oct 17, 2023 17:07:51 GMT -6
Have you tried magic mouthwash? would that help? My pharmacist made up some for me when I had strep with the last of his liquid lidocaine. I don't know if there's still a shortage of the latter. But that stuff was a godsend. I don't know if there'd still a shortage. I know my sister needed magic mouthwash for mouth sores last week from radiation. She'd never heard of magic mouthwash.
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Eagles
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Post by Eagles on Oct 17, 2023 18:00:51 GMT -6
My pharmacist made up some for me when I had strep with the last of his liquid lidocaine. I don't know if there's still a shortage of the latter. But that stuff was a godsend. I don't know if there'd still a shortage. I know my sister needed magic mouthwash for mouth sores last week from radiation. She'd never heard of magic mouthwash. I hadn't either! H went to fill the lidocaine script and my pharm was like hold on, I'm going to mix it in with liquid benadryl and maalox and text Eagles the instructions, just trust me. It was a huge relief while I waited for the abx to work!
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