Esophageal Spasms anyone??

[BelleMaria]

So for the past three years (i am 27) I had dealt with what I had believed was GERD. I tried multiple medication to no avail and have been on a strict diet this entire time (no spicy,fried,acidic,caffeine,or alcohol). In october I finally went to Stanford and had tests done to see if it was something else. The doctor came back and said that the pain I had been feeling was Esophageal Spasms.

Long story short has anyone else dealt with this? I've only tried one medication (cardizem) so far which worked for a month and then pooped out. The pain is so bad and lasts all day for days on end.Have any meds that helped you? I am so depressed Being in pain everyday sucks.

 

[mommasita]

I'm sorry you are experiencing this at such a young age. I have no experience on this, and hoping someone can shed some help for you..

I can't agree enough on the being in pain everyday issue. I wish there was more relief for you. Have you tried a second opinion?

 

[BelleMaria]

Hi, thanks for the kind words. Unfortunately long story is my doctor ( one of the best in the area) just up and left all her patients with no forwarding information and seeing a specialist is so hard. My next appointment isn't till Feb 25th with a new Dr., but luckily they are test me on one last medication in the mean time . This has been such a painful and very expensive sickness. Thousands of dollars have been spent on testing and meds and it just get's so depressing You start to wonder why me. Thank goodness for these boards, and thank God for Disney. Seems like the only things that make me happy these days.
Because of these past bills we can't afford to go to Disneyland while I am in LA visiting my family. But luckily my husband said he will to take me to Downtown Disney to get my fix

 

[superme80]

Holy cow! You are thie first person I have heard of who has had the EXACT same thing I have had. It started about 10 years ago. I thankfully do not have them often, so I never took any medication for them. I have had a doctor brush them off, but they are scary. What helps me if I feel them coming on is try to relax my body and gently massage that area. I haven't had a full blown spasm in about 2 years. When I was in my early 20s I had several, but because the doctor brushed it off I did too. To this day I have no idea what causes them. I wish I could be more help, but I want you to know you are not alone. My doctor tried to make me feel like I was crazy.

 

[disney212]

You can count me as part of this awful group. I have had then about 3 years (took 2 years to get a diagnosis). What seems to help me is liquid Lidocane. It is in a suspension formula so it is thick like a milkshake. It really helps! Good luck!

 

[BelleMaria]

You can count me as part of this awful group. I have had then about 3 years (took 2 years to get a diagnosis). What seems to help me is liquid Lidocane. It is in a suspension formula so it is thick like a milkshake. It really helps! Good luck!

Do you get them often? Mine have been daily though unless I am on a liquid diet. Lately I've been stuck with yogurts,grits,and soups. Booo I just need to get my weight up and energy up so I can return to the real world.

 

[disney212]

Do you get them often? Mine have been daily though unless I am on a liquid diet. Lately I've been stuck with yogurts,grits,and soups. Booo I just need to get my weight up and energy up so I can return to the real world.

I used to be in the ER at least once a month and the doctor's office almost weekly. Here is the full cast of things that keep my down to once or twice a month. I take 2 Dexilant a day to help control acid, Carafate 3 times a day to coat and help heal, if I eat red meat I take a Zantac 150 before eating, if I feel even a twinge I take 2 tablespoons of gavison or Mylanta or if I am out I start taking 4 tums per hour until I can get to the Mylanta. I only take the lidocane when none of that works. Thankfully 80-90% of the time it works. I also had several lymph nodes in my chest removed by a chest surgeon as they were pressing on my esophagus. I suffered for a long time and the combo of things is what finally worked. Keep the faith, praying you find what works for you!

 

[BelleMaria]

I used to be in the ER at least once a month and the doctor's office almost weekly. Here is the full cast of things that keep my down to once or twice a month. I take 2 Dexilant a day to help control acid, Carafate 3 times a day to coat and help heal, if I eat red meat I take a Zantac 150 before eating, if I feel even a twinge I take 2 tablespoons of gavison or Mylanta or if I am out I start taking 4 tums per hour until I can get to the Mylanta. I only take the lidocane when none of that works. Thankfully 80-90% of the time it works. I also had several lymph nodes in my chest removed by a chest surgeon as they were pressing on my esophagus. I suffered for a long time and the combo of things is what finally worked. Keep the faith, praying you find what works for you!

Wow! So that is similar to what did before I was diagnosed.... 80 mg prilosec , carafate 4x a day and mylanta as needed which was working-ish. But after getting diagnosed they put me back to 40mg prilosec ( isn't doing crap!) and the high blood pressure med which worked for a month and then pooped out on me and now I feel worse than before! Plus I've been having pounding heartbeat , a problem I NEVER had before. If the doctor can't offer me anything better than I'm considering going back to the high dose PPI therapy because even though I'm so young (27) and long term PPI use is risky I'd rather have a broken wrist one day from brittle bones than this dang liquid diet I've been on! I hope you stay as well as possible, ill be praying for you P

 

[disney212]

Wow! So that is similar to what did before I was diagnosed.... 80 mg prilosec , carafate 4x a day and mylanta as needed which was working-ish. But after getting diagnosed they put me back to 40mg prilosec ( isn't doing crap!) and the high blood pressure med which worked for a month and then pooped out on me and now I feel worse than before! Plus I've been having pounding heartbeat , a problem I NEVER had before. If the doctor can't offer me anything better than I'm considering going back to the high dose PPI therapy because even though I'm so young (27) and long term PPI use is risky I'd rather have a broken wrist one day from brittle bones than this dang liquid diet I've been on! I hope you stay as well as possible, ill be praying for you P

The Prilosec didn't work for me, neither did nexium, my gastro told me that Dexilant is a unique formula (it is very expensive over $4000 a year but my insurance covers it). I also have the pounding heart issue that is why they took my lymph nodes out. When I had a spasm the esophagus pushes on the lymph nodes which in turn press on an artery in the chest and that causes the racing hear and a lot of chest pain. The lymph node removal didn't completely end the issue but it made it 70% better (and you know any improvement is appreciated). I too am taking a chance with the brittle bones but I do get a scan once per year to check since I am also on another medication that also causes brittle bones, so far so good.

I was noticing your diet and wanted to share something. For a long time I was doing liquids, yogurt, bananas and "gentle" food. Turns out that I had developed an allergy to latex which I was informed can also cause a reaction to uncooked bananas (something happens to change what is causing the allergy when you cook a banana so I can eat banana bread I am told but I don't chance it), same thing with the yogurt which I had also been eating for years. For years I was eating a yogurt and a banana for breakfast with no issue. Once I switched to a bagel thin a LOT of my issues stopped. I am very lucky to have such a good gastro doctor. She told me it would be trial and error with food and that even though most doctors said diet had nothing to do with it, she believes that there is no one answer to suit everyone. She had me eliminate dairy, uncooked fruit and uncooked veggies. It took about two weeks but it did start helping, that is how I figured out the yogurt thing. She also had me stop all caffeine (I saw you drink tea), now I only drink decaf and I feel much better! I will keep praying you feel better. Each day is day closer to a cure (that saying got me through almost 3 years!).