Do any of you suffer from chronic chest pain due to your Achalasia? If so, how are you and/or your doctor treating/dealing with the pain?
Oh yeah - the dreaded spasms. I was misdiagnosed with them for YEARS. There are a multitude of treatments, you have to play a real trial and error game with them.
These are things I’ve used.
Chugging water - hot, cold, lukewarm - usually works best at the very first sign of a spasm. I carry a water bottle around with me ALL the time for this very reason.
Vanilla yogurt - I’m partial to yoplait - the custard kind.
dry, crunchy crackers or cereal. Bite size shredded wheats work really well.
There are some prescriptions you can take. Nitro tabs or nifedipine work well but can have really nasty side effects. Be careful, they both dramatically lower you blood pressure (I went into shock 2x but I have low BP naturally).
There is also Levsin and Levbid. my personal experience is that they were OK at best.
I gave up on all prescriptions and just try to keep my spasms at bay. You may find certain foods or conditions (being tired or stressed) makes them much worse.
If I"m home, I just try to relax in a quiet room. My hubby gives me foot rubs to relax me and that helps TREMENDOUSLY. I usually doze off and when I wake up I’m fine again. If I’m not home, the guzzle water and cracker thing seems to work best.
I also started taking Amitryptaline about 6-8 months ago. It helps increase the seratonin levels in your body. The theory is that people with GI disorders have too little seratonin, as a result of or because of their condition - I don’t know. So far it works well. I still have some spasms but they seem to be farther between and go away easier. the Amitryptaline helps me sleep so that’s an added bonus.
hope that helps. I don’t know if your doctor has diagnosed you with spasms or not, there’s a lot of GI’s out there who don’t seem to know that spasms are part of our package. Don’t be surprised if he/she looks at you funny or thinks you don’t know what you’re talking about. If they do the latest research, about 85% of people with A have spasms. Come check out the A group on Yahoo. It’s a very large group with a ton of reference info.
Good luck!
Happy Swallowing!
-Michelle in NC
I’m an “oldie”, just over 3 years after the myotomy. I don’t come to this group or the yahoo group often, but I greatly support the need for information. Seems like there is kind of a void of successful patients so I will try, when I have time, to give input down the road, from the viewpoint of a success story.
Chest Pains, or spasms. Mine were almost non-existent prior to a dialation, then gradually became almost every hour prior to the myotomy. I could successfully get rid of them w/ a few big gulps of water and eating bread or crackers. They seemed to be brought on by talking, not eating w/i the last few hours, and stress. I regurgitated all this a minute or two later, but it was like I filled my esophagus, stabilized it, then got rid of it again.
My spasms felt like a charlie horse right at my sternum.
After surgery, there were some REALLY strong spasms, then they tapered off for the first year, usually just one or two a month. The past year, they increased, although I still eat well, no deterioration in swallowing since the myotomy. Sometimes once a day, once a week, and sometimes several an hour. Again, brought on by stress, and if I haven’t eaten for a while, and other times, who knows why.
These spasms do not respond as easily to water or bread as they did before the myotomy. But if I can I shove in something like a bagel, that doesn’t go down easily, then follow it up with lots of water, I can calm the spasm.
I developed arthritis in my thumb, and seems like if I have taken an Aleve, I don’t get them.
I may have vigorous achalasia, which some think is like DES and achalasia, because my esophagus is constantly moving in the barium swallows, so of course your spasms may be different.
I’ve read some people post their surgeons say the spasms go away after surgery… from my experience and what I’ve read through postings the past 5 years, many get better, but many continue to have spasms.
So that is my story after 3 years. The spasms still seem to have a life of their own. Heavy bread and water helped, but then if you haven’t had a myotomy, then you have to regurgitate it.
Sandy in Long Beach, CA
Hi, I suffer from Achalasia and can cope well in not getting heartburn or spasms, if I take great care in what I eat. I eat a fairly low fat diet which is non acidic and non-spicy - I don’t eat anything that can trigger an attack and get on quite well with this. However I have noticed that my menstrual period seems to adversely effect my spasms. I am more likely to get a horrendous spasm episode if I am menstruating (regardless of what I have eaten). This seems to suggest that it is linked to my hormone levels. Have any other females noticed this?
T in Norfolk, UK.
Hi Topcat,
In response to hormones making a difference in symptoms, Yes!!! definately. Even before my diagnosis of achalasia, gerd,esophogeal ulcer, etc., I have been telling my md’s for years that my symptoms seem to get worse during ovulation and during menstruation. They would look at me like I was nuts or tell me that was normal then blow it off. Frustrating. Now i’m with a homeopath who has done priliminary testing of female hormones and found my estradiol to be low. She put me on an herbal suppliment (Meta 13 C)to help correct this. It has only been three weeks so I can’t give you a report on if it works. Also my local health food store told me that they are starting to look into the fact that menopause makes heartburn worse, which affects the achalasia. keep telling the md’s, hopefully someone will listen.
Good Luck
teril in NY
Hi Teril, Many thanks for your reply which I was very interested in. Its great to know I am not the only person who is noticing the link between worsening symptoms and hormones! Good luck with the meta 13 c supplements (which I hadn’t heard of) and it would be great to know how you get on with these once you have taking them a while. I am seeing an acupuncturist at the moment and she has suggested I read Women’s bodies, women’s widsom by Christiane Northrup. She has also suggested I read any of David Hoffman’s books on herbalism. It is definitely a learning curve having something like Achalasia. There is so much info out there, its just a case of working through it yourself and seeing what works for you. Sometimes it can be quite lonely suffering like this (as the disease is so rare) but its great to hear of other peoples successes through forums like this.
Good luck,
Regards, T in Norfolk, UK.
I didn’t start to get spasms till a few years after 5 dilitations. They were quite frequent when they started and since my doctor told me there wasn’t anything else she could do because any more dilitations would cause a tear. So I suffered severely for several years. Honestly at those times the pain was so severe I really wondered if I could continue to survive, or even if I wanted to when I was going through the long hours. During that time I experiemented with everything. Then just had the feeling to drink milk with lots of ice. This doesn’t take them away, but does give me a few minutes of relief. But I was having 3-4 a week with some lasting as long as 6 hours. So in despiration went back to my doctor. She put me on high does of bentyl. It has made a big difference in the spasms. I do still have some but not nearly as frequently. I also had a lot of fatigue the first year. Still do but not as much. But the trade off is well worth it for me.
I’m interested in this thread relating A symptoms to hormones. I wish more was known about this connection (and recognized) by the medical community. I am menopausal and my spasms and hot flashes go hand and hand - I’m never sure which comes first but they inevitably come together, and are dreadful, painful and of course sleep depriving at night. I’d be interested to hear from anyone who has treated A symptoms from a hormonal perspective and also to hear from anyone who has seen an acupunturist and whether there has been any relief from it.