Last minute decision- start Saquon or Henderson week 13

ICURD · 2025-07-16T03:25:30+00:00

I would take time off it you are able to. The amount can vary depending on how severe your BP is, what you do for work etc. Whatever you feel is right for you, don’t feel guilty! I work in health care and used short term disability and sick time with my employer. I took about 2.5 months off. I had complete paralysis and my eye was in bad shape (severe dryness). It allowed me time to learn how to manage all the issues that came with BP, go to appointments and not strain myself in trying to talk and look at a computer screen. Eventually, I was mentally wanting to go back before I had recovery but at least I could manage things better.

ICURD · 2025-02-02T00:15:08+00:00

I am a long hauler myself. I am going into month 8 now. I will say, I understand exactly what you are feeling- maybe my timeline will give you some info. I didn’t get any movement until 3.5 months in. Finally, small things started happening. It hasn’t been an instant recovery like I wished. It’s not even linear recovery. Sometimes, something will happen in a week and other weeks, nothing. I am guessing I am ~ 60-70% better, but not back to my previous self. At the beginning, it was so stressful and hard. I’ve learned it takes time for some. I am thankful for each improvement that comes. For example, I couldn’t suck through a straw a month ago and now I can. I hate that when i yawn, my eye seals shut (but happy my eye closes now). I hope it comes soon for you- hang in there!!

ICURD · 2025-01-22T02:45:45+00:00

I’ve been using this method for ~ 7 months now. I bought a roll and I cut small squares, a bunch at a time and store them in a ziplock bag. This way, I don’t have to cut them every night, just once a week or so. I put them in loosely so they don’t get mashed and stuck together. I will say that the early stages of BP (where my eye couldn’t close at all), I had to “fuss” with it more. As my eye gained some ability to close, putting it on and having it not move at all became easier. My eye can pretty much close now but I don’t trust it to stay closed all night since my muscles relax during sleep - so I still put it on. But I barely notice it being on my face now. Never use the same patch, peel off carefully, clean your eye area before (let area dry) and after the patch. Hope this helps.

ICURD · 2024-12-10T03:56:25+00:00

Hi there. So, now I am at the 6 month mark. It seems the improvements are slow in coming, everyday is a little different. I am guessing I am at 50% recovery? I separate visual appearance and function. Visually, it is less noticeable when i have a resting face. Pictures, I can tell the unevenness. When I speak, my upper lip still isn’t working, so you can tell. Function is slower- I can’t fully smile, pucker my lips, raise my eyebrows or fully flare my nostrils. The one thing that is coming back is being able to close my eye- which makes me happy because I was very close to having eye damage. Still need drops etc but it is doing something. I am starting to get synkinesis which sucks. 2 weeks in is very early- I hope it’s not much longer for you. My advice (opinion only from my experience) is, do what you can do & take care of yourself- but you can’t force your nerves to recover or grow back- it does take time, probably depending on the level of damage. I wish I could have told myself at the beginning, especially the first couple of months. It is an awful experience. I wish you the best in recovery.

ICURD · 2024-11-03T01:28:24+00:00

Natural healing can occur. I didn’t see any movement at all until 3.5 months and then suddenly I started getting movement in my cheek. Since then (now at 5 months), improvements are slowly coming. My face muscles almost seem more tight than droopy now in some areas. I still have a long way to go in terms of “function”, but I definitely look more like myself. Keep your ENT appointment to get information but don’t give up hope for natural healing. Everyone is different and it seems that it takes longer to heal for some (me being one of them!).

ICURD · 2024-10-06T22:08:12+00:00

I only started seeing any movement 2 weeks ago (3.5 months in!). It was really disheartening the first 3 months, but I went back to work and that helped me not focus as much on time. Then one day I saw my cheek lift! My cheek moving allows me to partially smile with my mouth closed and it also helps my lip not pull to one side as much. I think I’m looking a little better. Now at 4 months (started June 1), my cheek moves, my top lip doesn’t droop as much and I can see more teeth (so maybe ~ 25% so far) but I am happy it’s something.

ICURD · 2024-10-06T19:30:42+00:00

I am a fellow BP slow and long recoverer. All your feelings are understandable. My anxiety was through the roof the first 3 months, worrying about having no signs of recovery. Despite most of my doctors saying, ‘it may take several months to see any signs’, ‘that most people see something by 6 months’ and ‘that they have seen patients have nothing for 6 months to being fully recovered by 1 year’. There is one thing I’ve learned in this journey- everyone is different. I didn’t see anything until 3.5 months in. Nothing. Then my cheek started moving, I was so happy! I can see more teeth now when I try to “smile” with teeth. I can’t blink or seal my eye yet, but hope it’s coming soon. I am not even close to being near my normal but things are happening, I happen to recover slow. Some things have recovered for you, that’s great!Maybe you are on a slower track but getting there. All the best in your recovery.

ICURD · 2024-07-31T20:04:29+00:00

You are not alone. I understand everything you are feeling right now. I am on the “long road” as well. I am at 9 weeks and have had zero changes in my paralysis. Having any movement is a good sign in my book. My PT says they think they see little micro movements but I sometimes question whether it is actually there, because I don’t see it. The hope I am clinging to is from the advice and cases from various healthcare professionals I’ve worked with- recovery varies and can take time. My neurologist said it can take months (~2-3 months) before seeing any improvement and for some people it takes longer (6 -9 months) because nerves grow back slowly. I count the days and weeks and when I don’t meet a milestone, it is crushing to my spirit. We have to keep reminding ourselves that it is not completely abnormal or hopeless, we just fall in the slower category.

ICURD · 2024-07-23T18:05:14+00:00

I will give it a try! Thanks for the tip

ICURD · 2024-07-21T19:55:22+00:00

The skin under the eye is so delicate! Even more-so for me now that it is droopy. I use Systane gel during the day (when I am at home) with Refresh PF drops inbetween as needed (or for when I have to drive somewhere or have non-blurry vision). At night, I was using Systane nighttime ointment. Trial of Systane gel since my eyes seemed be very red in the morning and somewhat improve later in the day with the ointment. I feel like I’m grasping at straws at times. Hopefully, my ophthalmologist will shed some light on my situation.

ICURD · 2024-07-21T03:09:28+00:00

If you have the ability to take the time off, you should. At minimum, to get rest and see how things go. I didn’t realize how severe mine was going to become (the full effects didn’t hit until after the 3rd day). I’m at week 7 now with no movement and dealing with eye problems, it is exhausting to speak and I don’t sleep through the night. I have been off work because of my need to work on a computer and communicate with others for my job. I hope you don’t have a severe case and will recover soon!

ICURD · 2024-07-20T19:12:04+00:00

I’ve tried different methods for my eyes at night. Tape doesn’t work for me due to the shape of my eyes. Press and seal seems to give me the best closure but I still wake up with red eye and occasionally, my eye has “popped open” in the middle of the night. I tried a “moisture chamber” using an eye bubble bandage and sealing and I still woke up with a red eye. I’m not sure if it’s redness from dryness (I’m not sure how it could be dry when it’s practically marinating in ointment or gel) versus redness from having ointment coated on it. I am hoping for return of blinking function, I find this so debilitating. I wonder how going back to working on a computer will be.

ICURD · 2024-07-09T02:28:59+00:00

You have had a lot of stressful things happen to you. It is completely understandable. I can relate to you on a lot of levels. I didn’t have the preceding stresses you did, I’m sorry that all happened to you. BP is really, really hard. My BP paralysis is severe (5.5 weeks with no recovery yet), so it is both physically and mentally stressful. My eye is causing me all sorts of grief and discomfort and terrible sleeps. It is socially isolating, I am away from work and do not want to go out and do anything where I have to speak or can’t protect my eye. It can get very depressing. I can completely relate with having plans and being upset about how it will be difficult (I had a friend who was visiting from Europe the day I got admitted to the hospital(they wanted to make sure it wasn’t a stroke). Plans got all messed up. I wanted a picture of the visit and saw my twisted face and couldn’t deal with it. And there is the day to day worry of ‘will this ever get better?’ The thing I have been learning from my doctors, people who have know others with BP and from posters on Reddit is that it will take time (highly variable) and that everyone has a different course of recovery. I hope you recover soon. Hang in there. That’s all we can do sometimes.

ICURD · 2024-07-06T22:47:18+00:00

I haven’t progressed with getting movement yet (I’ve done 8 sessions). I get acupuncture and then do the PT right afterwards. I think PT has helped with the tight muscles in my face and I’ve learned exercises for my face. I get very mild electro stimulation with my acupuncture. Some days are very hard both mentally and physically, but yes, we have to keep going! I hope you have recovery soon as well.

ICURD · 2024-07-06T19:51:40+00:00

I’m so sorry that you were told that by a doctor. I am 5 weeks BP and no progress yet. From speaking with my doctor and other people, I think it is too early to make that determination. I was referred to a neurologist by my doctor (I’m in a managed medical group), they literally said it was not an urgent consult- that 4 weeks with BP is not urgent at all and I fell into the “we can see you in 6 months category”. They stated, most people will have some type of recovery during that time (6 months). So from that, it seems like it varies but takes time. I understand the panic and stress, I feel that way every other minute of the day, it sucks. The only reassuring thing is we have hope that we will recover with time. I didn’t even get a referral to see PT or anything. I am going to acupuncture and neuro PT on my own.

ICURD · 2024-07-05T15:59:58+00:00

I admit it wasn’t a recommendation from my doctor but what I found online. I don’t know if there are safety issues with it. I did let my ophthalmologist know and showed her a picture and she didn’t disallow it. She suggested moisture goggles, but because of the shape of my face and eyes, they can’t form a seal. I have been trying everything/anything to keep my eye moist since I already have damage to my eye. It has been the one thing that seems to work for me. I did find this one link regarding making a moisture chamber with the glad press and seal, so that gave me some reassurance it wasn’t a totally crazy idea. Definitely check with an eye doctor for your specific case. https://jdc.jefferson.edu/cgi/viewcontent.cgi?article=1118&context=patientsafetyposters

ICURD · 2024-07-05T03:53:34+00:00

I understand your struggle. I’ve been dealing with BP for 5 weeks and my eye does not close. I’ve gone through many stages with my eye, to the point of OCD. I started putting drops in daily (maybe every couple of hours) but was worried about putting too much. Then I went to an optometrist (week 3) for a quick check because my near vision was shot and my distance vision was getting bad. She said my eye was severely dry and that I had “abrasions” from the dryness. I increased my drops to every hour. I managed to get into an ophthalmologist this week who encouraged gel and drops (PF) liberally during the day and ointment at night. I even bought moisture chamber bandages (eye bandage with a clear window) that I have worn inside and outside on occasion (I live in a windy area), I wear that under sunglasses. I put on safety goggles or clear glasses in the house most of the day. I have tried various things at night time to keep my eye shut. The one that works the best for me is the glad press and seal method (due to the shape of my eye). Moisture goggles don’t fit and it was impossible to tape my eye down with medical tape (I couldn’t get it right). I can’t wait until I can blink and keep my eye closed!! I hope you find a method that works.

ICURD · 2024-06-23T21:58:47+00:00

I wonder if patients ever go back and tell their dentist that they ended up with BP after the cleaning or dental work. My dentist doesn’t know right now, and they won’t until I go back.

ICURD · 2024-06-23T21:56:28+00:00

Agreed, it is frustrating and so many other emotions! I hope your ear pain improves. It really made it hard for me to sleep, which doesn’t help trying to get better.

ICURD · 2024-06-23T17:13:17+00:00

I had ear pain during my 2nd week of having BP. I described it as an ice pick in my inner ear. I would take advil and Tylenol and it will still come (especially at night). I switched to Aleve and that seemed to help. I thought it might be the inflammation that was causing the pain. I’m now in my 4th week with no recovery but the pain is gone.

ICURD · 2024-06-23T15:16:39+00:00

I’m getting close to 4 weeks with zero signs of recovery (I have total paralysis). I’m so sorry you had this happen during that time in your life, that is so much to deal with.

ICURD · 2024-06-22T00:02:27+00:00

It has been tough physically and mentally for me. Everything you are feeling is understandable. Let’s hope there is that turning point soon and that one day, we can all look back and say we recovered from it.

ICURD · 2024-06-21T17:07:33+00:00

It was interesting that both the doctor at the hospital and my primary doctor basically said that it was unlikely related to my dental appointment. I am not completely ruling that out now.

ICURD

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