Struggling in the Bowels of Hell

[exploringexistence]

So unfortunately I am still in the bowels of hell. I told myself this is it. I'm done with this board. I am going to accept this is benign and move on with my life, stop focusing on it just like I did for basically 3 years out of the 5 years and 4 months this has been happening. However here I am. I'm still struggling with throat issues, big time and they never were really a problem before which scares me. I've searched the boards and didn't find anything related to the painful twitching I get deep inside my throat. Sometimes it's the tightness. Then some days, it's twitching, feels like one side of my palate, then the other, or even both. Sometimes it's only mild. I manage it with Clonazapam 2x a day. I take it in the afternoon to avoid being tired at work and at night to sleep. However, when it keeps up constantly (like now) with the painful jumping/cramping feeling in my throat, I just go into panic mode.I saw the neuro on June 7 and she was very nice. She did the usual exam, checked strength, reflexes, looked in my throat for a bit. Then she tells me I can be rest assured that it is not you know what. That presents with weakness and wasting, not twitching, not in a 31 year old. She didn't recommend any further testing or a follow up appointment. I heaved a big sigh of relief and walked out of there. Then of course I think, so what? How can her just checking me mean anything? I guess I need validation from testing like EMGs sadly. Ironically after seeing her, I started to feel the twitching was less in my throat, a few pops here and there. The only thing that worried me was that she said I could have something wrong with my vocal cords and maybe should see an ENT. So then I panicked because I read a story a long time ago about a man who thought he had dysphonia but it was determined to be you know what. Again though, I rationalized. My voice doesn't have too many anomalies. It does feel slightly strained when my throat gets tight.However, now my BFS is full blown again, along with the fear, not that my tongue wasn't always twitching, but it's worse again. Twitching all the time and of course twitching from head to toe as we speak. Also, I am having exercise intolerance and as someone who is very into figure skating and swimming, it's new for me. I didn't really have that worry before, maybe perceived weakness but not the shaky legs. I tell myself the meds are causing me to cramp and have side effects. The other day I felt like I had a seizure, arched off the bed and everything went tense. Today is just a bad day and I'm rambling and venting, sorry. I started obsessing and testing too, things I said I would never do again. I think my legs are heavy or that my arms are weak. Then I think I can't swallow or my voice is hoarse. I'm just at the crossroads. I ended up calling my old neuro and he said he'll see me July 11, 3 weeks away. He usually does an EMG, but do I really want that? What if it does more harm than good? I tell myself just be calm, pray, go on and do what you love. However, this is really getting to me. I should be here posting a 5 year success story instead of being terrified.

 

[SecretAgent007]

I understand your frustration. I think people feel unfullfilled by the reassurance they get from a neurologist or general practitioner because a ruling out of something nasty still leaves you where you are with no answers. You're still stuck with the same symptoms that brought you there in the first place. So you've been in this boat for 5 years, and you've tried ignoring the symptoms and moving on with your life. You've gone to neurologists and gotten prescription drugs to try to mask the symptoms. Have you considered trying something different like a gluten free diet? Have you maybe considered seeing an acupuncturist? Have you considered trying breathing exercises, yoga, or meditation to better manage your emotional turmoil that you are experiencing because of this? I truly hope you feel better soon, but in order to get different results you'll have to start trying different things. Best of luck to you and hang in there.

 

[exploringexistence]

Bond007, I think you hit the nail on the head. It's the fact that the symptoms persist that causes such anxiety. I feel like at times "I can't live like this." I mean I did get very accustomed to the widespread twitching everywhere else, including my tongue (which I never thought I'd get used to) but somehow the throat just really causes me so much stress. I mean at times it is tolerable but when it starts jumping or tightening or cramping when I'm talking or eating, I think, well how can this be benign? It feels like it's hindering my day to day life so I think it has to be sinister. I mean I thought similar things with my tongue twitching, even coming to terms with slightly slurred speech when my tongue is having a bad day, but I don't know. I guess because it feels kind of new? If it was something I had five years ago, I think I might be able to say, "well this isn't new territory." My doctor told me it doesn't matter if it's a new twitch in a new place, it's all the same benign stuff but I just can't make peace with it. I did see my first neuro in 2008 and had an EMG in April 2008 and then another in June 2008 because the twitching in my tongue was so bad. Then I saw another neuro in 2008 and had another EMG in October 2008. I had another in February 2009 again because my tongue was so bad again, twitching 24/7 no interruptions, and then another complete EMG in September 2009. They were all clean. I saw my neuro for the last time in 2010 after we'd exhausted different meds (none agreed with me) and he believed it was BFS, called it that exactly. It was then that I knew I had to just try to move on. I stayed on one clonazapam a day, at night. Although now I am on a slightly higher dose due to the throat symptoms. As I said, I did move on before though. There were days, the dreaded disease didn't cross my mind. I'm not saying I didn't have moments of fear here and there but I dealt with it. I found a passion I truly enjoyed which is figure skating and kept myself busy. I reconnected with friends that had been lost due to my obsessions and I was able to say, "yeah the twitching never stopped but I'm not going to let it scare me." Now though, I'm scared again. I'm still going to work everyday (even though now I'm on break being a teacher and all) and still trying to do what I love. However, it's much harder. Last night, my throat jumped continuously until I finally fell into a fitful sleep.It has been suggested to me to try different therapies. I've seen therapists which have helped to a degree, tried the meditation (not for me). I pray though. I have made some changes to diet, avoiding foods that upset my stomach just in case GERD is playing any kind of a role in this. I'm not really into yoga. I guess figure skating is my yoga when I'm truly free gliding across the ice. My doctor did tell me to see the acupuncturist. Did you find it worked for you? I guess I'm scared to try it, so afraid it won't work and I'll be out of options.Sorry for the long post and thank-you for the response.

 

[SecretAgent007]

I totally understand your situation and was there myself at one point, just not for as long of a period as you. Regarding acupuncture, if you are anywhere near St Louis, MO or Dayton, OH I have doctors that I can personally recommend. Otherwise it will have to be a trial and error process, just like with any doctor. Doctors are people and no two are the same. Sometimes you get a good one that you personally are able to connect with and they know their stuff enough to help you with your problem. Sometimes you strike out. There is an art and a science to acupuncture and BFS is complicated. I was incredibly luck to find a doctor who was knowledgible enough about the body to be able to utilize his acupuncture, chiropractic, and dietary knowledge to help address the imbalances causing my immune system and nervous system to act the way they were. Everything is really about balance. The reason you are experiencing the symptoms you are is because something went out of balance, which caused a reaction and something else went out of balance, and so on. Eventually physical symptoms began to manifest. You have to address the imbalances in order to allow your body to heal and return to good normal health. The trick is finding someone with the knowledge and the skill set to not only find the imbalances, but also to address them. So don't be afraid to find an acupuncturist. If you see one that you don't connect with or don't feel like you are getting results, then don't give up on acupuncture, just try to find a different doc based on what you learned from the doc you are leaving. Getting a doc who is experienced and familiar with digestive health is important because of the strong link between the digestive system and the immune system. This is why I recommended a gluten free diet. Gluten intollerance and auto immune tend to go hand in hand. Going gluten free isn't the cure, but it greatly reduces a source of inflamation to the body which in turn usually gives releif for some symptoms to varying degrees. The gluten intollerance itself is usually a symptom in the chain of imbalances that need to be addressed.Finally I wanted to make a comment on meditation. There are many, many different methods of meditation. You mentioned that you pray. Meditation can be very similar to prayer with the only difference being that you quiet the mind and focus on your breathing, rather than using your internal monolouge to send out positive thoughts or ask for help or healing. A friend of mine once told me the difference between prayer and meditation is that prayer is when you ask and meditation is when you listen. You don't need to sit in the lotus position or do any funky hand positions. You can sit comfortably or lie down just like you do to pray. Just focus on listening and relaxing. Its a great way to handle stress and has many positive health benefits. I hope this helps.