I was diagnosed with PPMS in 2009. By early 2010 I felt I had breathing issues and I went to my neurologist & he told me that I I couldn't have breathing issues. So after a few more months of feeling strained and having difficulty even reading my son a book at night, I made an appointment with a pulmonologist. After taking several breathing test I was able 2 factually say I have a breathing problem as my lung capacity has been diminished. However it wasn't severe enough to be given any treatment. I was told by the pulmonologist at the time it was probably due to the MS hug. I was told not to worry about it and that the MS hug is pretty harmless. So I didn't. I thought it was just another symptom that would be bothersome but it could be tolerable. Another year went by and my breathing became more strained and another year went by where I felt I almost made my husband take me to the hospital. I went to see the pulmonologist again and this time My compacity went from 85% down to 65% and I was diagnosed with restrictive lung disease. But because my oxygen level was so good he said that there was no treatment available and I would just have to deal with it. I thought, but my breathing is getting worse where I feel like I'm gasping for breath. But the doctor had no response. Then I started to wake up during the night gasping for air and I had to start sitting up while I slept so I could breathe. The neurologist at the Mayo had me take part in a sleep Clinic and they found out that my breathing was affected during the night and I was bad enough to get a BiPAP machine. my lung capacity was found out to be 46% now . I had just gotten the BiPAP machine and hadn't even taking it out of the package when the breathing problem that I supposedly didn't have and that Ms hug that was supposed to be so harmless almost suffocated me. I woke up during the night and I was gasping for air literally. I could not feel my lungs inflate or deflate. My husband immediately got the BiPAP machine on me and if it wasn't for this machine I believe I would have suffocated because I could not get any air in or out of my lungs. We called the ambulance and I went to the hospital. After running tests, the neurologists concluded that it was the muscles in between my rib cage - the MS hug. That I had such a strong muscle spasm that it encased my lungs so that they could not inflate or deflate. This particular spasm lasted for 24 hours and lessened as the days went on. By the end of my Hospital stay we were able to adjust my BiPAP machine and the spasm relaxed enough that I could go home. I now sleep with my BiPAP machine on every night. I have had a few episodes during the night that I still have to sleep sitting up because the muscle spasm is so strong that even though I have the BiPAP on I still can't get enough air. I have not had to wear the BiPAP machine during the day, however I still get minor spasms that my speech is affected or my breathing is more shallow. But nothing like that night. I was told in the hospital that the MS hug is really not a big deal and that I probably would have just passed out but would have regained consciousness once the spasm released. However I don't find that very comforting or very scientifically factually based. When I asked if he had medical proof of this his response was that it was a theory. I was told they don't know how to treat Ms hugs but they believe a couple drugs like Baclofen might help. Honestly, I felt they were too relaxed about this Ms hug. Unfortunately I have a sensitive reaction to Baclofen and can only take a very small dose one time a day. Right now I am managing with my BiPAP machine at night. But I really do feel that the MS hug is misrepresented in doctors offices and on websites. And that it is not given the attention that it deserves. I should have been watched by my doctor when I increasingly told them my breathing problems were getting worse. I was wondering if anyone else had Ms hugs as severe as I have had?
Did they give you a full face mask? And did they tell you about the cloths that you can put over the plastic so your face isnt irritated? Baclofen is good to take at night, like a knock out drop, I when necessary take 20mg to get a better nights sleep.
Are you breathing from the diaphram?
I noticed that when I didnt get afraid of what was happening it was less of a problem. I would stare at my chest 'with my mind;s eye' until it passed. Sorta like hypnotising my muscles to relax.
I understand what you're saying when we need to try to remain calm and that stress can exacerbate the muscle spasm or even create the muscle spasm - the MS hug. I know when this happens and this of course would happen during the day when a person is awake that stress or when a spasm comes on you get nervous about it. And during these times during the day, I do meditate and I do focus on relaxing to help me through it. I don't get nervous about it - I don't like it but I have been having these spasms since 2010 on a daily basis and have really gotten used to it as just my normal breathing pattern. However, when you are waking up at 2 a.m. or 4 a.m. gasping for air, you are not stressed out when you're sleeping and you're doing nothing to cause it externally. So what I'm talking about is specifically a muscle spasm so bad that meditation or relaxation or reducing the amount of stress in your life is irrelevant. The muscle spasms in my chest have gotten so intense that it causes me to wake up gasping for air. And I have taken breathing tests that have factually shown the amount of air that I can take in and breathe out has significantly been reduced that I have been diagnosed with restrictive lung disease and have been approved for a BiPAP machine. So the MS hug I am talking about is one that is so severe that it made it so my lungs could not inflate or deflate to the point that I was suffocating. And that night when this specific one happened, I did try to focus on making my chest relax and I did try to meditate it away but there was nothing I could do. The only way I could breathe once you have the BiPAP machine Force air into my lungs. And this machine basically exercises my lungs at night open the chest muscles and relaxes spasticity in those muscles so that they are not able to tighten up as much. So I have not had an extreme episode since then. But I have had 3 episodes where I had still woken up needing more air and needed to sit up even though I did have the BiPAP machine on. And this would be irrelevant to outside stressors or needing to meditate because I was sleeping. Think of a charlie horse in calf or a back spasm - do those come on due to stress? Can you meditate those into relaxation? Sometimes with MS symptoms exercise, meditation, good food, and a positive attitude can help alleviate a symptom. But a lot of the time those things are irrelevant and the symptom - the MS it's going to control what happens. I would love to know if anyone else had an MS hug so severe that it prevented their lungs from inflating or deflating or--if they now use a BiPAP machine because of it.
I was diagnosed with PPMS in October 2013, so I haven't been dealing with it as long as you have, but like many, I do experience the MS hug off and on especially after my diagnosis. Something interesting I noticed however in the last few months of 2015. The MS hug hadn't been affecting me as much in 2015, until my mom, who suffered from Alzheimer's, was having some serious health issues and eventually put in hospice care in November 2015. Having someone in your family with Alzheimer's is needless to say difficult and stressful at times, especially when they start to forget who you are etc. As we learned, she was in her last stages, and I noticed that the MS hug started to reappear. It was mild at first, but by the time my mom passed away on Thanksgiving Day, my midsection was very very tight and of course uncomfortable. Losing my mother was very difficult as we've been very close all my life. I decided to start a journal to help me get and stay in touch with my feelings and I cried a river of course, and have good days and bad days. i was able to release a lot of pent-up feelings and slowly but surely my MS hug started to lesson and then disappear. So in my case, I learned that when I'm going through stressful times, the tightness or hug can appear. And so I learned why it's important that I find various ways to relax meditate. Regarding breathing issues, my doctors and physical and occupational therapists have explained that since our lungs are a muscle that it's important ( as much as possible) to maintain an exercise program to strengthen them. Because of the fatigue issues, I don't always feel like doing my exercises, but I do them to the best of my ability. And when I go to bed at night I keep a set of handweights nearby ...about 5 lbs. each and with knees bent, lift my arms up and then down, and am now up to about 180 lifts. I originally started with 2 pound weights each and only did about 60 lifts. Doesn't sound like a lot but I was just out of surgery and very weak. I also do leg lifts and knee bends, along with a multitude of other exercises.
One last thing, have you read up on Dr. Wahls and her protocol? If you have, you know that she was diagnosed with intermittent relapsing MS and after a few years on medication it eventually moved to secondary progressive MS. She was determined to find a way to improve her condition and to get herself out of her zero gravity chair and so she started doing a lot of research on this and other autoimmune diseases. Eventually, she wrote her book Minding My Mitochondria, as well as her book explaining her protocol or recommendations for improving her MS condition, which are both very encouraging. I'm just starting to eat / juice the recommended 13 cups of vegetables although for petite women she says you can do 6 cups (she recommends including the pulp!) and using organic vegetables and fruits as much as possible. I went online on YouTube and did find testimonials from others who are following her protocol and they also are encouraging. I think everyone is different and in some cases there may not be the same improvement that she experienced...but I still think it's worth a try. Why not try to get as many live nutrients in your body? I even found a local organic business in my area that's been around for 20 years who will home deliver anything I need. I don't have to do this because I have someone at home with me but it's kind of a convenient option. I also see a therapist on a regular basis to help me deal with the stresses that I deal with having MS and she recently gave me the name of her housekeeper, who is willing to come and do regular housekeeping for me at about $13 an hour. I'm very used to being independent and doing everything on my own... But after my diagnosis in time i had to learn to reach out and do things differently. I have a picture on my wall with one word on it and it ..."Change" and I remember when we found this picture at Walmart one day. Depending on where you're standing when you're looking at the picture...the tree changes from fall to winter to spring or summer! It's a good reminder for me that we can all count on one thing in life and that is change regardless of what's going on in your life. Most importantly, my faith keeps me centered and is the most important thing in my life. I hope you are feeling better! Best wishes to you.
Hi, you have given me confirmation about my change of what I eat. I have the book by Dr.Wahls. Finally I am putting it into pratice. I am greater than the circumstance of MS. I have decided to put faith and action together.