Lost in 2008: BFS Journey

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exploringexistence

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Hi,This is not my first visit to the BFS site. I used to post here all the time back in 2008 when the nightmare started. Back then I was as my sn points out Missing Out on Life. It started when I was just 25 in Feb. 2008 with a toe twitch. My toe would twitch and hold. I didn't panic at first but then next thing you know I googled it, and well we have all been there. Finally I noticed twitching everywhere and pretty soon it moved to my tongue. I could write a book on the variety of tongue twitches I had and still have. I've had them stay on the tip of my tongue for days on end. I also had them under the tongue too. I actually have one that pulls up the entire left side of my tongue and holds it there and then I talk really weird when it's happening. So for all you tongue twitchers, fear not. Actually my tongue right now doesn't scare me in the least. I even have a connection between my tongue and wrist, I kid you not. It's bizarre, I turn my wrist and my tongue moves. No explanation for it. I have had 5 EMGs, all clean. However, the last one was in 2009. See I thought the nightmare was over. In July of 2008, I made a conscientious decision to stop going online and researching, to stop visiting this site because people bring stuff over from other sites and next thing you know you are doubting everything. I kept my word but the doubts lingered. I visited my neuro here and there for a check in and saw one in 2011 to see if she could at least prescribe something for the problem. She didn't unfortunately.The reason I'm here is because in April of this year, I started getting throat spasms. I thought it was GERD related but then even when it felt better, I would just have the whole back of my throat get tight. Needless to say I was despondent after googling again what it could mean. However after just 3-4 days, it went away on its own. I did have a barium swallow on May 6 and that showed mild reflux. I put it out of my mind as a fluke, no explanation for it. However, 3 weeks later, it reared its ugly head again. Throat getting so tight, it was unbearable. Not the spasm that hurts either. I honestly would be reassured by that. This was more just a discomfort. I took an extra anxiety med and it simmered a bit but I was still getting jumping and odd pinching sensations in the back of my throat. I went to see my doctor who told me "definitively it wasn't you know what." She said they don't get throat tightness just trouble swallowing. However, now after 2.5 weeks of this going on, I just cant even deal. I've searched the site and find few people with the tightness/practical paralysis of the throat so I feel yet again I'm doomed.Any help would be appreciated.
 
Hi,so all tests tend towards having reflux and related esophagal spasms. Reflux can make you feeling like every object you swallow just stucks in your throat or lower and stays here for hours...If your swallowing is not impaired (no paralysis, no changes of swallowing reflex), then you may try (asking doctor first) things like maalox. No one should overuse it deliberaltely because overdosing pr prolonged use of therapeutic dosage may increase twitching and have other bad concequences on Ca balance, but short term course may relieve your condition. At least it helped me with similar issues (I was also coughing after meals and had extremely uncomfortable feeling in the esophagus).As for ALS bulbar issues: they involve severe disruption of swallowing reflexe because of practically damage in the brain stem where swallowing reflex is hosted. it is the same as people have in encephalitis or in rabies (becasue the same regions are suffering) - they just CAN NOT swallow because their throat shuts doun under the pressure of food instead of opening as usual. This is always seen on swallow test, so if you had only reflux, then you are absolutely OK. Reflux is a result of many factors, particularly it is believed to be relsted to hyperactive vagus nerve, and has NOTHING common with brain stem damage occured during bulbar phase of ALS.
 
Thank-you for replying. Honestly I wish my PCP would have told me that something would have showed on my barium swallow test. Maybe I wouldn't be in full on panic mode by now which is probably making everything worse. Now I can feel the sides of my throat twitching, like probably my soft palate or something so that has me alarmed. Also, yesterday I was trying to sit by the pool and "attempt" to relax and I got a sensation that I was twitching up and down my throat. Needless to say I had to run in the house because I felt I couldn't breathe. That's what alarms me, sometimes the twitches are so powerful, I feel like I have to catch my breath. I actually stuck my finger down my throat to see if I could feel the twitching there but only succeeded in gagging myself. It's awful! I am barely eating now because I twitch in my throat as I eat. I had the same feeling of twitching down my throat twice while eating. I can also cause my throat to twitch if I gulp in a big breath of air which I shouldn't do because it's probably worsening it. Luckily I was able to get an appt at a Boston hospital to see a neuro next Friday. I am pretty ready to hear bad news but still trying to have a sliver of hope that it turns out okay.
 
It all resembles me that I can induce hiccup (wich is involuntary spasm of diapragm) by a good gulp of something cold, hot or gaseous like fresh soda. it just means vagus nerve is ready to become crazy :) and is another proven symptome of esophagal reflux.Your throat is made of same muscles as your leg or arm so you have just a strange hotspot. I hope your visit to neurologist would confirm that you do not have any sinister or life-shortening conditions. People here have hotspots in the eardrum, intimate parts of the body, abdomen and scalp...Hope the visit to Boston would be reassuring for you, a new start, not the end.If they would confirm BFS, please know you got a great chance to change the whole life to better. It worked for me and for many other fellows here. It is a blessing really, not a curse. One just need a good approach - andboom! the world of tirtures turns upside down and becomes a good garden.it is possible.
 
I try to tell myself over and over that the throat is a muscle and can twitch the same as anything else so why should I be scared? My tongue does the wackiest things and I am still alive and honestly over the fear of it twitching. I feel it twitching now and I just say "whatever." However, it was that feeling of catching my breath and doing it when I was in the middle of eating, that scared me to death.I meant to mention before I am on a PPI (Protonix) to treat my GERD so I am trying to manage it. I have been on it for actually around 10 years, maybe. Also, I know what it's like to have this and get your life back. I did. I'm not saying I didn't have that tiny doubt in my mind at times but I pushed on. I stopped going to the doctor constantly, got a teaching job, and enjoyed the sports I love. Funny, I actually took up gardening too. However, now unfortunately I'm back in the thick of it. Hopefully if it all goes well, I'll try to stop worrying and return to "normal" as well.
 
This happens to me all the time. At least once a week where it feels so tight that sometimes I am worried I won't be able to breathe. It feels like someone is trying to strangle me. I believe it's a Cricopharyngeal spasm and I believe it's caused by either GERD or stress.At least I'm almost positive this is what is happening with me. The fact that it comes and goes like it does, and that if I take a xanax it goes away. And, the cause is "Anxiety or Stress".Mitra
 
Thanks for replying too. My friend is a nurse and I actually called her practically in tears a couple weeks ago over this and she said that I have that exact same thing you linked to and told me not to worry. Mine goes away if I take Clonazapam usually. I seemed to be on a good regiment of it again 2x a day, once in the afternoon and at night and it was tolerable. However, I decided to lower it and it's like it really set it off big time. I have since gotten back on it twice a day but it doesn't seem to be having the same effect for some reason. Now I am getting off and on tightening several times a day. Sometimes it stops for a couple hours and then returns. Then I get what feels like twitching, near to my palate or roof of the mouth area or what feels like a twitch cascading down my throat. I got this one and it gave me that "couldn't breathe" feeling like I was getting paralyzed. Scares me to death honestly.
 
I am deep in panic mode here over this still. This has been going on for nearly 3 and a half weeks and I have convinced myself life is over. Why won't it stop? I am starting to think my swallowing, breathing, and voice have all been affected. Now I am getting the tightness a bit lower in my throat than before and it's very frequent, like Mon-today have been nearly nonstop. I saw my PCP last Friday and again she told me it's not anything serious, just anxiety. She looked up my records (past EMGs) and said she even wanted to forget about the neuro referral because she was confident that it was "next to impossible" for me to have the disease. She asked me why I was even afraid that it was that. She also said that throat muscles are like any muscle so it's no different if I get a twitch or spasm there than in any other place. However, this seems so different. I don't know why. I am seeing a neuro still Friday and I don't even want to go because I am convinced she will give me the diagnosis and I don't even want to know :(Also, every time I read about the GERD related spasms, I think this has no relation since those are usually attributed to pain or a lump in the throat. I don't have that. This is internal, like a tight bubble forming in my throat and staying there until it finally fades out.I did search the site again the other day and found one poster who seemed to have the exact sensation I was feeling, like a spasm without any pain that lasted, then dissipated. I think they posted about it last year and I wish I could hear from them or find the post again but I can't. Plus I found another post on this site that said bulbar patients get cramping in their throat so I am convinced this is what is happening to me. Very afraid.
 
I'm going to go out on a limb and say that this might be related to your Clonazapam use. Benzos are addictive and when you try to reduce them or stop them, you'll have withdrawal symptoms. It sounds like you have started to build a little bit of tolerance. When you start having withdrawals, additional anxiety tends to happen. Which is causing your throat spasm. Many people who withdraw from benzos also have muscle twitching.I don't think you need to see a neurologist, but instead an ENT if you're concerned about this.I have learned to live with mine. I don't know if mine is GERD related or neurologically related (and triggered by anxiety) but it happens to me frequently. But, I have noticed a stress connection. When I'm less stressed, this happens to me much more infrequently.
 
My doctor has said as such that a tolerance can happen but she thinks that Clonazapam is one of the more effective drugs for twitching and spasms. I try to only take it at most 2x a day and that's only 1 mg a day. I took one around 9:15 this morning and the spasm is less intense now, thankfully. Can I just ask what your spasm feels like? Is it painful? Tightness? I'm just desperate to find anyone with the same thing. I have had the full range of twitches everywhere but this one is new, even though I did apparently have some throat "jumping" things before (looked up old posts) but this just seems different.
 
It's tightness in my throat. Almost the description of the link I posted. It feels like it's right around where my Adam's apple would be if I were male. Sometimes I feel like my throat is filled with mucous.It really could be GERD in my case, but I have dealt with this for two years on and off, and it seems to be correlated with anxiety.
 
Mine happens there near the base of my throat or sort of further up my throat closer to the palate. However, this is internal. Is yours tight on the inside or is it more your neck(external)? Honestly if it was my neck, I would not be freaking like this. This is my throat, inside my throat. I know those spasms you linked to are internal but they don't sound like me since it isn't really a lump which sounds more like globus hystericus.
 
Saw the neuro and she said she could reassure me it wasn't you know what. However, still struggling with sometimes painful jumping/twitching/cramping in my throat. Ever get that too?
 
Could you possibly point it out and link to it? I would be so appreciative. Today I was doing okay but then I started to laugh and I felt some pain and cramping again. It's so strange.
 

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