Facial Tightness and BFS...wondering what's going on

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Facial Tightness and BFS...wondering what's going on

Postby Nova on April 3rd, 2003, 7:33 pm

Hi Everyone,

Don't know if this is the website to be posting this question, but BFS is the only condition that is close to what I've been experencing. I have twitching and a sensation of facial tightness (though I am able to freely move my muscles). Wanted to know if anyone else has experienced the tightness.

First off, my mom has MS, as does her bro. I'm one of those in the family line that has bipolar disorder.....not that MS and bipolar are related, but my bipolar has come into play since the onset of my symptoms, simply because we've considered that the meds I take may have been causing my symptoms.

Years ago, before the docs recognized me as bipolar, they were throwing antidepressants at me, and that's when I first started having facial twitching. Mainly under the eye and on the nose. I believe I was on Zoloft at the time. It's interesting, because I've read that often BFSers are given Paxil or other anti's to relieve the twitching.

Well, eventually, with much research and evidence, I was put on meds appropriate for bipolar (yeah!). Lithium really saved me, but caused headaches....so the pdoc (psychiatrist) switched me to Trileptal (another anti-epileptic). I was also on Geodon (an antipsyh) in low doses as an adjunct to the Trileptal. I was on these meds for several months, feeling better than I ever have, just great in fact, and then I started having numbness in my face that moved around, plus facial twitching. My pdoc told me to take Vit. E for the numbness (1000 IU/day) and Vit B6 (100mg/day) for the twitching. The problems went away in a couple of weeks.

But then, after a few more weeks/months, I started having a strange feeling of tightness, like a clay mask had dried over my skin, on my face, and sometimes the top of my head and on my chest...but mainly in the face. Eventually, I had numbness as well, in my throat, on my tongue, on my lips and chin. That really scared me. I can't remember if the twitching had started up again by this time...but the tightness has often been a precursor or has happened along with the twitching. I also had (still do) a strange sensation of cramping or tightness in my right index finger.

So I've had an MRI, which was clean. Once the neurologist ruled out MS, he sent me on my way. I wish I had known more about EMGs and other tests so I could have insisted on taking them....but from what I'm reading about BFS, they often don't show much.

Anyway, thinking that my problems were medicine-related (which they may still be...perhaps the meds are causing a vit. deficiency, despite the vites I continue to take), I've changed the meds several times. The numbness went away after stopping the Geodon (antipsych), which I, happily, do not seem to require anyway. The pdoc switched me to mood stabilizers such as Topomax (which caused severe pins and needles feelings in my hands, feet and face, among other things), then to Neurontin, which caused MAJOR twitching in my face (oddly, since that seems to be a med for BFS), and we also tried combining different meds. I went through a period where I was so affected by the bipolar disorder from all the meds changes, that I just went back to Trileptal (which had done wonders for me). At some point, I was symptom-free. But recently the facial tightness and finger cramping has returned.

My pdoc put me back on lithium, and we supplemented with another anticonvulsant, Keppra. Face just got worse. I'm at the point now...after trying all these meds that have completely different molecular structures and deal with different neurotransmitters and receptor sites in the brain... that I'm thinking that this isn't meds-related, at least not strictly. Like I said, perhaps a vit. deficiency brought on by the drugs. Why else would my pdoc have me take Vit B6 and E if deficiencies couldn't occur?

Anway...if you've managed to read through all of this, thanks a bunch. Just really wondering if this sounds like BFS? Is facial tightness a symptom? I have had a cold for the past two days and the tightness is worse, and I can feel twitching in my nose (although it isn't yet visible). I hear stress and illness can worsen the condition. Also seems worse when I'm overheated. My mom's MS is really beginning to disable her, and my grandmother has been diagnosed with breast cancer...so things are a bit stressful for the family. I know this stress could be worsening the condition, plus my insecurity about what's really going on.

Thanks again for reading, and if you know or have had this "tightness" sensation, please let me know. Also, if you've noticed that symptoms seem to appear with the use of psychiatric meds, that would be good to hear about too. Oh, and if anyone has also had severe muscle spasms in other areas of the body....I've seen chiropractors and acupuncturists and physical therapists for spasms in my neck and shoulders. These painful knots are there for months on end, and then I wake up one day, and I'm okay...no neck/shoulder pain. It's very strange, and I'm not sure if it's connected to the other stuff or not.

Good luck to all of you!

Take it easy,
Nova
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Postby kim on April 4th, 2003, 7:47 pm

Nova,

Welcome to our forum!

I am not sure if facial tightness is a symptom of BFS, but maybe one of our more astute members can help you out. I just didn't want you to think you were being ignored. There are so many symptoms and variations of symptoms associated with BFS. The cause is yet unknown too, but many theories are floating around here. Anxiety is a big one!

Your medications could very well be the cause, or it may have something to do with your disorder. Neuropathies are very common, and I am sure it will be something you can deal with. In any case, you have support here!

Kim
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Postby Nova on April 5th, 2003, 6:58 pm

Kim,

Thanks for your reply. Even though you haven't heard of facial tightness with BFS, it is nice to recieve a response and know that there is support out there for symptoms like these. I have an appt. to see another neurologist soon, and I hope that will bring some answers my way or at least rule out some of the more major disorders. If the docs do decide that my symptoms are of the BFS variety, I'll be sure to pass along that information too, in case it could be of any help to someone experiencing facial tightness, etc. I'm sure it may take a while to get a diagnosis, at any rate. Thanks again for posting.

Take it easy,
Nova
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psychiatric meds

Postby Renae on April 23rd, 2003, 8:14 am

Hi Nova-

I haven't experienced the tightness in my face, but I have experienced the numbness in my face and sometimes in the back of my head. It had seemed to come and go and I haven't noticed it as much lately. I've been told that can be from anxiety, which wouldn't surprise me. I'm a very anxious person in general and all of this has made me even more anxious. I often wonder myself about the inteference of psychiatric medications in all of this. I was on Prozac for about a year and a half when my symptoms first started. I really have no idea and no way of knowing if its at all related, but I do wonder. I stopped taking Prozac back in December to rule that out as causing the muscle twitching. The twitching is much less than it was, but its still there. I guess its all a big mystery since there seems to be no other medical explanation for my twitching. Some of the other symptoms I was having did subside after I stopped taking Prozac as well. And of course, who knows if it was just coincidence??? I realize this is probably not helpful to you other than just sympathizing with the frustrations of not knowing what is causing what. I hope you're able to get some answers from the neurologist.

Also, I've had those knots or muscle spasms that you've mentioned. Do the knots you get actually stay for months? Because I have this huge knot in my calf muscle which my PCP thinks is a muscle spasm, but its been there for like 2 months now and its driving me crazy!! I keep thinking its something horrible, but I don't know what??? Just curious if yours are the same.

Well, take care of yourself and good luck with your neurologist appointment.

Renae :D
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Postby Nova on April 25th, 2003, 12:45 am

Hi Renae,

Thanks for posting a reply. Sorry you are dealing with this type of thing as well. I did go see the neurologist yesterday. He believes that I have BFS, but is doing an EMG (nerve-conduction) test and checking my Vit B12 levels and doing a brain/spinal MRI as well, to be thorough. He said that the EMG will help to rule out things like ALS (which is HIGHLY unlikely to be a concern for me, considering my symptoms). The check on B12 levels will determine if a vit deficiency is causing the twitching. He said if I am deficient, then I may require Vit B12 shots, because my body may not be metabolizing the vit from my diet. The MRI is being done to make sure I'm showing no signs of MS, especially since my mom and uncle have it. But he said we cannot rule it out if the MRI is clean. There is no test that can rule it out completely; but, he said, it is highly unlikely that I have it. I think it was less about the twitching and more about the facial tightness that made him want to get MRI results. He called the facial tightness a parathesia (sp?), and symptoms that fall under that category can occur in MS.

As for the meds, he didn't feel that they were the cause, although they might affect the nervous system and make the BFS more active, perhaps (I take anti-epileptics - mood stabilizers). I did tell him that I had bad twitching with Zoloft, and he said that in the case of antidepressants that affect seretonin levels in the brain, twitching can occur. Maybe this is why you had twitching with Prozac. I know that I had numbness specifically with Geodon (and antipsych); the numbness persisted until I stopped that drug...could be conincidence, but these meds can do some strange things to us! I've come to the determination that my mental health is more important than being twitchless and having normal feeling in my face...but it is difficult to live with that, still. I just go a few days without proper meds, and my world is upside down. And, usually, the twitching and tightness are still there, so go figure.

Anyway, I wish you the best of luck. I completely understand what it's like. There are several kinds of anti-D's out there, so don't give up. I hear Paxil is good for anxiety. Also, they give BFSers that to calm twitching, from what I've read. Oh, and the knots/spasms in my neck were there for months on end. Then one day, gone. Now I've got major cramps in my calves. It's like I worked out way too hard yesterday..but I've done nothing. Really strange. There is something called Benign Fasciculation and Cramp Syndrome...maybe that's what these are about. And, of course, since my neck was better at the time I saw the doc, I forgot to even mention it. I'll ask him about the cramping, specifically, when I see him next time. I'll be sure to post anything that might be helpful.

The neurologist wanted to assure me that these fasciculations are not from a disease, but more from an overactive nervous system. So I'm trying to get rest, cut the caffeine, and destress (meds!)...plus some light yoga. I hope it will help with the symptoms, or at least with coping with them. One good thing is that BFS IS benign, and can spontaneously go away for extended periods of time. Just knowing that I have good days, where symptoms aren't so bad, helps me deal. Hope you get some relief soon! Keep us posted!

Thanks again,
Nova
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neuro appt.

Postby Renae on April 30th, 2003, 1:09 pm

Hi Nova-

I'm glad your Neurologist seems to think its just BFS...that must have been a relief. It's always good, though, to have the tests like the MRI and EMG to help rule other things out. Sounds like a very thorough Neurologist. I haven't been overly impressed with mine and he never said anything about BFS and I actually haven't seen him in a few months (since I've found this site) so I'll have to ask him about it. I guess I'm just grasping at straws here because I have no idea what my problem is at this point. It's all very frustrating, as you know! But, it sounds like you have a good handle on things....destressing, no caffeine and some light yoga sound like a great idea to me!!

Take care of yourself and keep us posted! :)
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facial tightness

Postby martin on October 9th, 2003, 10:09 am

I too have had facial tightness, i have noticed that it is worse after alcohol, usually lasts a couple of days then goes. hope this helps.
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Facial tightness

Postby sstine on October 9th, 2003, 7:14 pm

Facial tightness and muscle twitching is what sent me to the doc in the beginning. Fourteen months later I still have both, but more importantly NO WEAKNESS!!! I'm actually much stronger physically and spiritually and committed to my health. The best advice I got was not to worry and trust GOD and it worked. I truly was a basket case.
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Facial tightness

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