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Author Topic: Bells Palsy: Second time around @ 3 month milestone  (Read 9602 times)
jmrees
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« Reply #30 on: 08 December, 2009, 09:25:41 pm »

Ben,  I've spoken to three gps and a specialist now, and they all say that the most likely cause of bp is the herpes virus which you get in your body when you get chicken pox as a child, and which stays there in a dormant state in various parts of your body.  It gets active in things like cold sores and the theory is that it is the active infection that attacks the nerves that control the face.  The nerves pass through a small hole in the skull and when they become inflamed the blood supply is cut off and they stop functioning.   If your gp is saying it's got nothing to do with a virus, what do they think it could be due to then?  In my case I have a strong suspicion that I have had Lyme Disease, as I was bitten about 6 times by ticks, exactly 8 days before the symptoms began.
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BenRichardson
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« Reply #31 on: 10 December, 2009, 06:21:57 pm »

Day 29-34: New kind of motion

The title is a bad pun, because the new kind of motion is that which one experiences whilst cycling. Which I did today. For the first  time in 34 days. I ventured out wearing a skullcap, scraff (bit like a scarf), helmet and cycling glasses. I don't often go for long periods without cycling, but when I do, the sensation of being on a bike is at first a little unnerving. It seems like I am too far away from the ground, and floating rather than in control. However, this odd sensation never lasts long, and within a day or two stops occurring at all. Its really good to be cycling again, not to mention getting a little exercise. I'm in terrible shape relatively speaking, and just the thought of a regular workout is challenging right now.

Back to the main event - I have considerable movement in all facial muscles now. Some lag behind others, and the order has not changed much. Cheek, smile and eyebrows regained movement first and are strongest now. Lips and the area around the nose are lagging behind. I cannot close my right eyelid without also closing the left.

The phenomenon of my symmetry being entirely reliant upon my purposeful formation of facial expressions is sustained. I have no recollection of this from my first bout of Bells Palsy. Has anyone else experienced the same during recovery? Also, I'm beginning to wonder, how will I know when it is safe for me to stop taping my eyelid shut overnight? I suppose I will wait until I am capable of winking on the BP side.
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BenRichardson
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« Reply #32 on: 10 December, 2009, 06:30:20 pm »

Ben,  I've spoken to three gps and a specialist now, and they all say that the most likely cause of bp is the herpes virus which you get in your body when you get chicken pox as a child, and which stays there in a dormant state in various parts of your body.  It gets active in things like cold sores and the theory is that it is the active infection that attacks the nerves that control the face.  The nerves pass through a small hole in the skull and when they become inflamed the blood supply is cut off and they stop functioning.   If your gp is saying it's got nothing to do with a virus, what do they think it could be due to then?  In my case I have a strong suspicion that I have had Lyme Disease, as I was bitten about 6 times by ticks, exactly 8 days before the symptoms began.

Well indeed, he didn't offer any alternative explanation. However, both GPs I saw consulted a neurologist, perhaps the same one, perhaps different, I'm not sure. Both neurologists referred to a big study conducted or reported on in 2007 which apparantly returned results which suggested, unlike a previous big study in around 1995 I think, that there was not a viral explanation for most episodes of BP. Accordingly, neither GP I saw prescribed an anti-viral for me, explaining that it was no longer the practice and was unnecessary.

A little googling finds that this information about the BP study that my GPs were referring to. I must warn you of course that I have absolutely no medical expertise, and have no real knowledge. I'm purely relaying things I am told. Also, I suppose that the finding that anti-virals have no benefit does not necessarily mean there is not a viral cause. It could also mean that anti-virals, or the anti-virals prescribed, are ineffective. I've no idea.

http://www.dundee.ac.uk/bells/

RESULTS PUBLISHED

On Thursday 18th October 2007 the results of the Scottish Bell?s Palsy Study were published in the New England Journal of Medicine with the title

?Early Treatment with Prednisolone or Acyclovir in Bell?s Palsy?

(N Engl J Med 2007;357:1598-607).
                                                         
CONCLUSIONS

In patients with Bell?s palsy, early treatment with prednisolone significantly improves the chances of complete recovery at three and nine months.
There is no evidence of a benefit from acyclovir given alone or of any additional benefit from acyclovir given in combination with prednisolone.

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BenRichardson
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« Reply #33 on: 13 December, 2009, 01:09:25 pm »

Days 35-37: 5 weeks

So, the 5 week mark is reached, and the extent and rate of my recovery is something I did not dare hope for.

As of yesterday, I can manage a new feat. I can keep my right/BP side eye closed whilst the left is open. Yes, this:  Wink

Now, let me not misrepresent this, I cannot actually wink. If I try to do so both eyes close. Also, there is nothing elegant about the operation required to achieve this feat, which would not look out of place if it were carried out by Gollum whist in sight of the Ring, but the fact is that this represents a phenomenal benchmark of facial control for me.

I now plan to restart light gym-work in addition to cycling. Fortunately, I'm coming up to a period where I'll be on leave so I can exercise and also get a lot of rest, rather than try and transition directly back into my regular exercise and work routine.

About cycling. Cycling in cold weather without wearing glasses is, even without Bells Palsy, something which can quickly irritate and dry out the eyeballs. The cycling glasses I'm now wearing do not prevent cold-air flow, but they do prevent it from directly buttressing my eye, which is exactly what I need and is sufficient that I can ride.
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BenRichardson
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« Reply #34 on: 17 December, 2009, 06:48:24 pm »

Days 38-41: Pareto's Law

Does Pareto's law (possibly better known as 80/20) apply to Bells Palsy recovery? Have I experienced 80% of my recovery in 20% of the total time my recovery will take, and will I experience the remaining 20% in a period of time lasting 4 times as long or more as the recovery so far?

Here is my current BP status:

1. I have no blink reflex
2. I can blink but cannot wink my right eye independent of the left
3. Whilst talking, my right eye area will remain relatively inert, as if stuck
4. If a scrunch my nose up as much as possible, the effect is noticeably weaker on the right than on the left
5. If cold or tired, the right side of my face feels stiff and it seems more difficult to form expressions on the right side of my face (for all I know, the expression itself works okay)

I'm still taping my eye shut at night. It is possible I don't need to but . . . . I cannot tell. Yes, I can close my right eye when I will it, but it appears to require a conscious act of will, and I'm not sure that it would remain closed during sleep.

I've been to the gym twice now, lifting weights. When I say weights, well, lets just say that I'm currently about as strong as a small doormouse:


I aspire to become as strong as a newly born kitten with a few weeks, and then begin the long hard slog towards becoming as strong as a baby fawn. From there who knows. At least I've succeeded in my aim of not becoming a lard-bucket due to inactivity, which I pretty much did during my first Bells Palsy. In fact I've dropped about 3 kilos over the last 6 weeks. If this sounds good, its not. I haven't actually lost much if any fat. I've lost muscle from my shoulders, chest, arms back, legs etc.
« Last Edit: 18 December, 2009, 07:56:23 pm by BenRichardson » Logged
BenRichardson
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« Reply #35 on: 19 December, 2009, 04:16:41 pm »

Days 42-43: 6 Week Mark + Additional outstanding status item

Well dash, my recovery is not as complete as I had imagined.

Today, I discovered that I cannot in fact move my bottom lip on the BP side. I haven't regressed, I just had not fully realised that this was the case. I noticed earlier in the week, when trying to eat a sandwich roll, that it was still rather awkward, and I bit into my lower lip a few times. However, this was at the end of a long day where I had been out in the cold for a while, and I didn't think about the implication.

For several days, as I've been applying lip-salve I had been noticing in an absent minded way that pressing the lips together was not easy, but again just thought that this was because I had not regained full control.

Whatever prompted it, I spent a few minutes in front of a mirror this morning and indeed, noticed that I really cannot do anything with the lower lip, whilst the upper lip is pretty much 100%. There is no visible sagging, but I finally hit on a movement that clearly highlighted the absence of control over the BP side. A description will not do it justice, but I found I could jut out my left-lower lip, which also contracts a muscle somewhere in my neck, and could not make any similar movement on the BP side.

So, have to add a #6 to my BP status list:

6. Right lower lip not functioning

If any of the items 1-6 have changed in the last week, I've not been able to tell. This is far from damning, because I've found it difficult to detect any daily progress other than during the first few days where movement was regained. However, it is planting the idea that perhaps I'll have these 6 residuals for a lot longer than I'd like, maybe even permanently.

To add a bit of good news, today I submerged my head whilst in the bath, and was able to hold my BP side eyelid shut against the water.
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jmrees
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« Reply #36 on: 19 December, 2009, 04:42:56 pm »

Ben, I recently saw an ENT specialist who told me that improvement will go on for 18 months from onset, that's an average occurence with BP, so no need to say "permanently" for a long time yet. 

I have been seeing a physio since 3 months who has advised me that any exercise or pulling my face around I do must be symmetrical.  In other words, do as big a smile as you can, but don't let the strong muscles on the good side pull the weak muscles on the other side out of shape, do it in front of a mirror and always keep the two sides symmetrical.  Failure to do this can result in the nerves relearning to function incorrectly, called synkinesis, which can be very difficult to correct later on, if not impossible.  She warned me off random exercises like scrunching up the eyes, puilling the lips around  and so on for that reason.  Also regular exercises aren't recommended until 3 months.
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BenRichardson
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« Reply #37 on: 21 December, 2009, 02:58:40 pm »

Ben, I recently saw an ENT specialist who told me that improvement will go on for 18 months from onset, that's an average occurence with BP, so no need to say "permanently" for a long time yet. 

I have been seeing a physio since 3 months who has advised me that any exercise or pulling my face around I do must be symmetrical.  In other words, do as big a smile as you can, but don't let the strong muscles on the good side pull the weak muscles on the other side out of shape, do it in front of a mirror and always keep the two sides symmetrical.  Failure to do this can result in the nerves relearning to function incorrectly, called synkinesis, which can be very difficult to correct later on, if not impossible.  She warned me off random exercises like scrunching up the eyes, puilling the lips around  and so on for that reason.  Also regular exercises aren't recommended until 3 months.

Cheers JM. I don't do any exercises at all really. Once a day, maximum twice, I'll see what I can do in the mirror, but I don't engage in repetition of the movements. I know I've got a lot of potential recovery to come and am not at all dismayed. In fact, it is the relative speed of the rest of my recovery that gives me some reason to wonder if the lower lip may be long-term or permanently (darn, that word) paralysed.

How is the cycling going? Been back on a bike yet? Hope this happens soon for you (although, it is not cycling weather in the UK right now)
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BenRichardson
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« Reply #38 on: 21 December, 2009, 03:02:31 pm »

Days 44-45: Unintended experiment

I flew from mainland Europe to the UK for the Winter Holidays over the weekend. Unfortuately, my hold baggage has been lost and not found over 24 hours later. The hold baggage had my surgical tape inside, which I use to secure my eyelid shut overnight.

I forgot to buy some more before shops closed on Sunday, so went to sleep Sunday night worried about my eye safety, particularly because during the day I can close my eye but when doing so the eyelid flickers somewhat.

Thankfully, no problem. I woke up Monday morning without any sign of eye-irritation or dryness. I'm racking this up as "progress" Smiley
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BenRichardson
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« Reply #39 on: 01 January, 2010, 07:32:42 pm »

Week 8

I was about to record that there had been no changes in the 6 remaining BP effects, but in fact #2 has changed as I can now wink my right eye. Oddly, or perhaps not oddly at all, doing so also forces an uplift/half smile on my BP side. This is in fact exactly the same as the movement which occurs if I wink on my left side, where I had BP 12 years ago.

1. Blink Reflex: No change
2. BP side blink/wink: Can wink with difficulty
3. BP side eye inert whilst talking: Remains inert
4. Nose scrunch asymmetry: Remains asymmetrical
5. BP side lower lip paralysed: Remains fully paralysed
6. Cold/Fatigue leads to stiffness: Yes, still does

I've started training regularly again now, weights and cardio. However, I'm not kidding about being as weak as a doormouse. Although I am purposefully holding myself back, I'm finding it difficult to lift at 50% of my previous levels following my 7 week period of inactivity.

I've also restarted cycling. The current freezing temperatures, normally something I don't much mind at all, are most unwelcome. When parts of my face get cold, they become stiff and the loss of sensation makes me wonder whether I still have movement. There is no way to protect my entire face from cold and wind, as even when I wear a balaclava under my helmet, which I frequently do, my nose is fully exposed. I'm not making any connection between my nose being outstanding item #4 and this cold exposure however, since the nose scrunch asymmetry preceded my return to cycling by 1-2 weeks.

Another thing to report, none of my family noticed, or noticed but did not comment, upon my BP during my Xmas break. I chose not to tell, because I live in a different country from them and such a thing would only serve to make them worry about me.
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BenRichardson
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« Reply #40 on: 09 January, 2010, 12:10:39 pm »

Week 9

Status as follows:

1. Blink Reflex: Incomplete/weak reflex
2. BP side blink/wink: Can wink
3. BP side eye inert whilst talking: Remains inert
4. Nose scrunch asymmetry: Remains asymmetrical
5. BP side lower lip paralysed: Remains fully paralysed
6. Cold/Fatigue leads to stiffness: Yes, still does

To be honest I find it very difficult to gauge progress on the blink reflex, and don't much like poking myself in the eye (or nearly doing so) in order to test it. I can touch my left eye without provoking a blink, so long as I do it carefully, so how can I tell whether or not the right, BP side eyelid is blinking without my express command to do so? Seriously, if anyone has ideas here, please tell me.

However, there appears to be at least some form of movement occurring without my conscious direction over there, so on the balance of probabilities rather than beyond all reasonable doubt, I'm writing it up.

I've been very surprised that other than during a brief period around my 3rd-4th week of BP, I've not really experienced much in the way of involuntary facial tingling/pulsing/contracting/twitching. During my recovery from my previous and first round of BP, I remember this happening vigorously and frequently, and also see other BP sufferers reporting the same.

Concerned that (relatively) intense exercise may deprive my body of resources needed for continuing the BP recovery, I'm still deferring a full reintegration into my regular exercise regime. I have in mind however a threshold of 3 months, after which unless I receive convincing advice to the contrary, I will effectively restart living as I would as if I did not have BP, in terms of work, play and exercise.
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BenRichardson
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« Reply #41 on: 31 January, 2010, 11:46:52 am »

3 Month Update

I've not updated in a while as there has been little to report.  My blink reflex may have improved, but I find it very difficult to gauge whether this is so and am unwilling to repeatedly poke myself in the eye in the interests of thorough testing.

I've still experienced almost no twitching at all. In fact, what little twitching I have had has been on the non-BP side of my face, although yesterday I did feel what I think was a little twitching which felt like it was concentrated on the inside of my nose on the BP side. I regret that although I remember the onset, duration and initial sign of recovery from my first episode of BP 10 years ago, and I also remember frequent twitching, I do not remember much else about the recovery in terms of the rate or structure of progress.

Most of the time, I am not thinking about and not concerned or irritated by my ongoing BP symptoms. The most unsettling aspect of my current status though occurs when I am fatigued or have been out in the cold. At such times, although my range of facial movement is probably unimpaired compared to my current norm, it feels much more difficult and even makes me anxious about regression. Less of an issue is that I'm conscious of the fact that when I smile, which I do a lot, the eye on the BP side almost looks like a glass eye, since the eyelid and facial muscles around it do not contract as they do on the non-BP side. I suppose this is the kind of residual that exercises may eventually be able to help address, so in another few months I may go to see my GP for a referral.

Over the last two weeks, I more or less restarted my pre-BP work and exercise routine, which is fairly demanding. Yesterday I was as weak and fatigued as I can remember feeling in a long time, barely wanting to do anything more than watch TV in a reclined position. Now, such fatigue does hit me now and then, especially after lifting heavy, but I've noticed that by BP-side face has a mild but just noticeable degree of touch soreness i.e. if I press my hand against it, there is soreness (which does not occur on the non-BP side). I've not had any intense facial soreness like some other BP sufferers report, but I think I must err on the side of caution and interpret this as a sign of ongoing recovery. As such, I'll dial-down my exercise regimen yet again for a few more weeks.
« Last Edit: 31 January, 2010, 11:49:51 am by BenRichardson » Logged
BenRichardson
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« Reply #42 on: 02 February, 2010, 05:28:42 pm »

3 Months + 1

Following up regarding the last paragraph of my last post - the BP side of my face definitely has a mild degree of persistent soreness. It is unnoticeable until and unless I lightly press against the skin, but if I press both the BP and non-BP sides simultaneously there is a distinct difference and the soreness covers the entire BP side - cheek, forehead, chin etc.

Also, I am more tired than "normal", normal meaning pre-BP and also between the 2-3 month mark. Today I found myself needing to go to lie down around 1730 after a day that most certainly was not uncommonly demanding.

I think the best way for me to interpret these two signals is indeed that I'm going through a phase of recovery of some description. This is also prompting me to make an appointment to visit my GP again to see if he will suggest any tests at this stage, or a consult with a neurologist, or anything else. I expect not, but prefer to rely upon his medical expertise rather than my lack of it  Cheesy
« Last Edit: 08 February, 2010, 05:52:24 pm by BenRichardson » Logged
BenRichardson
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« Reply #43 on: 08 February, 2010, 05:57:45 pm »

3 Months + 2

So, I dialled back my training, basically taking a full week off whilst doing only cardio exercise. At the end of the week, my energy levels have recovered.

My facial soreness remains, and I wonder how I ever "missed" it. I find it is most noticeable if I gently compress the base of my nose. The BP side hurts and the non-BP side doesn't. This applies to the rest of my face too, but the contrast is easiest to feel this way.
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Rachilou
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« Reply #44 on: 10 February, 2010, 02:42:21 pm »

Hi Ben
I've followed your journey through this closely especially as my timescales are nearly exactly the same albeit with my recovery happening in a slightly different order.  The facial soreness is my most significant remaining symptom and one I've been aware of throughout.  However, I think the main time I am acutely aware of it is when rubbing moisturiser or make up onto my face.  (Perhaps you blokes less likely to experience this sensation!).  Also when I visit the chiropracter and am lying face down and resting my face on a head rest it is extremely uncomfortable.  I also find the cold a continual challenge and my eye is sore from time to time (perhaps a sign that my blink reflex isn't quite what it should be yet?).  Anyway, hope this reassures you a bit.  I was also wondering about seeing the GP so interested to hear how you go..... Rachilou 
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