[smurfette]

My reflux gets much worse at night and it seems that between that and bouts of nausea I have become quite a night owl. I often do not get to bed until 5 AM and that wreaks havoc with my day. If I then go to work I have to fight falling asleep while driving home and then my cycle begins again. The reflux I feel during the day just gets progressively worse and worse and by nighttime there is no way that I can lie down. I stay awake for hours until things seem to quiet down and then finally I can crawl into bed and sleep on an angle.

Am I the only one to suffer with this upside down schedule?

[jefa]

Yes, I have had to battle with sorting out a topsy-turvy schedule in the course of sorting out my various symptoms. It is a cycle which tends to perpetuate itself if you don't change lifestyle to break it. I am not a doctor, but since you have mentioned reflux in several posts, it seems that this is the place to start. For me, it took a number of changes, including modifying what and when I eat and sleeping with the head of my bed elevated to prevent the actual flow of stomach contents. Also sleeping on your left side takes advantage the anatomical design of the stomach to reduce the possibility of reflux. On our Diet and Scleoroderma page there is a list of foods which can trigger reflux:

For relief of systemic scleroderma symptoms such as Raynaud's and heartburn, you may want to particularly avoid:

• Caffeine (can trigger Raynaud's and Heartburn)
• Chocolate (can trigger Raynaud's and Heartburn)
• Peppermint (can trigger Heartburn)
• Ginger (can trigger Heartburn)

I note from your signature that you are a fan of chocolate. While chocolate does claim some health benefits, it also contains alkaloids which have the dual effect of relaxing the lower esophageal sphincter (LES) and increasing the amount of acid the stomach produces. I have eliminated all sources of caffeine, chocolate and peppermint (I wasn't eating ginger). I also found that excessive alcohol in the evening interferes with sleep and I try not to eat anything in the three hours before bedtime.

The last thing I discovered to have effected my sleep patterns is the time of day I was taking some of my medication. I was taking my SSRI (fluoxetine) in the evening with my dinner. I eventually learned that it was an alertive rather than somnolent antidepressant and should be taken in the morning, allowing you to be alert during waking hours and to rest better at night.

[Peggy]

First of all I can't believe you are still working! Wow I don't know how you do it! You must have such tolerance and endurance, especially being up all night.

I saw a gastro a couple of months ago because my reflux was so bad I was having these attacks at night where I felt like I am being burned alive from the inside out. The gastro doctor prescribed:

1) liquid Karafate - I keep it in the fridge and I take 10ml right before I go to bed. This supposedly coats the esophagus and stops the acid from coming up;

2) Rantitidine (zantac) - that I take at bedtime; I also take one of these in the morning, and

3) Aciphex - that I also take at bedtime. I also take one in the morning too.

He also had me raise the entire head of the bed up 8 inches and no food or beverages after 7pm


I can honestly say that since I have been on this regimen and I don't eat something that I know will cause it I haven't had these attacks. It was to the point where I had to sleep in a chair so as not to have it come up in my throat. I went to the ER so many times screaming in pain until they would give me something to settle the acid down it was terrible.


Maybe try one of these - especially the liquid karafate. I really feel sorry for you as I know what you are going through. I hope you get some relief soon.

Warm hugs,

Peggy

[barefut]

Jefa,

Well, I'll be.....I was told to take my fluoxetine at night as it might cause drowsiness. I used to take 20mgs in the am but now take my 40mgs at night. Haven't been sleeping better, nor have I been more awake during the day. Gonna switch it back and see how all goes...

Thanks!

[bowbec]

Smurfette,
My doctor just put me on Aciphex - that I take at in the morning.
It is really helping. I also have stopped drinking my one cup of morning coffe too. I am sure that has helped as well. Bed is elevated and I take all my meds at or before lunch. Watch out with the chocolate!
Like Peggy, I have eliminated all sources of caffeine.
If we can just figure this mistery or should I say MISERY out- wouldn't life be better B)
God Bless
Becky

[Sam]

Yes lately mine has gotten bad I would be sleeping really good and all of sudden I need to sit up its like I am gasping for air. I even have my bed up and my pilllows on a incline and still it happens I do need to let the gastro know. I take two nexuim and I'm still having it , but I also have a ulcerative colitis and a haital hernia . so maybe a check up is what I need. Let us know what is going on. See the doctor... Sam

[lizzie]

Hi Smurfette, sounds like you are having a really bad time. Although I was taking a PPI (pantoprazole) I had problems with reflux at night that would wake me up and would get up , take liquid anatcid and then couldn't get back to sleep so would go downsatirs and watch TV. Consequently was frequently functioning pretty poorly in the daytime. I saw the gastro Dr and she told me I should take the PPI at bedtime rather in the morning - that did make a big difference for me (since then the Dr has also doubled the dose of PPI so now take one morning and night now). Now rarely have problems unless I have been particulary reckless with the food/drink.
Lizzie

[smurfette]

Thank you all for the suggestions! You have confirmed that although I may be crazy, I am not doing anything wrong with my treatment of my upper gastric issues. It is not a question of meds or behavior it is probably just a question of the disease kicking me when I am down right now. I am on so many meds already

I take nexium both in the morning and evening.
I take a zantac 300 mg if I am really uncomfortable at night
I take procardia and levsin every morning and evening to prevent esophageal spasms which sent the reflux into overdrive,
I use the fast acting levsin when needed for break though and kytril for nausea. The kytril and fast acting levsin are for emergencies.
I chew on antacid tablets like candy — they have new ones for break through that I take less often. - I notice that I am using this less and the breakthrough levsin more lately

I do try to avoid eating late, however my gastro paresis leaves me feeling empty and starved and then when the food I ate hours ago is finally processed I sometimes do eat late to fill this hole that seems to appear in my gut. I often sleep sitting up or just take little naps if I am having one of those nights. As I said I am not a big caffeine drinker,not a big drinker at all, have some chocolate (it is my only real vice — besides shoes)! and avoid spicy foods, onions, garlic, tomato products, citrus products and generally behave myself.

I am not a candidate for the surgeries on my esophagus. I will be getting botox on my stomach sphincter. I do have a hiatus hernia. I do graze but I also sometimes have a real meal. It just seems that at the end of the day everything piles up and decides to push back up and hurt. It does not appear that I am missing anything important in what I am doing. I seem to be hitting all the right bases. They are just not working right now. To quote a wise member of this forum - Truman - It is what it is......

I thank all of the forum members for their suggestions and kind words. Your support and willingness to help is very appreciated. I love knowing that you are a out there full of hope, knowledge and ideas ready and willing to come forth to assist someone in distress or with a question at any time.

I thank all the forum members for their suggestions and kind

[Purr]

Hi again Smurf!

I was just wondering when you had your last endoscopy and colonoscopy? Even taking nexium (40 MG a day at that time) I had a gastric ulcer that was causing reflux and nausea. The doctor said he thought the ulcer was caused by the medication I was taking for arthritis pain.

Anyway, it was just a thought. B) Reflux, nausea, and sleeplessness make for a very miserable time.

Take care,
Christy

[smurfette]

Christy,

Thanks for asking. My last endoscopy was May and colonoscopy was less than 8 months ago. I get tested every year. I am ulcer free. I am on one aspirin a day but it is coated and I always take it after food or skip it if I am having a fluxy day. It was a great idea though. Thanks for caring though.

I appreciate your caring enough to ask.

[lizzie]

Hi again Smurfette, justa nother thought. I see from your list of meds that you are taking Procardia. Proacrdia can make reflux worse (lowers esophageal sphincter pressure). when I was taking a high dose ( 120mg a day ) I suffered badly from the reflux even in the daytime. The Dr cut it by half and it improved- no problems in the daytime.
Just wondered if it one reason for your reflux?
Lizzie

[Nina]

I hope my reflux has subsided since my operation ~ I use to think I was going to die, doesn't it just take your breath away? Reflux is about the worst of the worst as far as I am concerned.
Isn't this just a wonderful forum????? Where else can you talk to tons of people who all understand and many can offer valuable suggestions. Just wanted to say how happy I am to be part of this forum!
Hope you find some help with your reflux ~ the mix of medication sounds like something to think about.
Much love,
Nina (DE)

[smurfette]

Lizzie,
Never thought that Procardia could make the reflux worse. The Procardia is supposed to keep the esophageal spasms from occuring. It does seem to help. Those things make the reflux seem like a walk in the park. My sphincters at either end of my esophagus are shot. I take Levsin (actually Levbid) to work with the Procardia to keep everything calm along that pipeline because it gets triggered so easily. I will have to ask the rheumatologist about it actually making the reflux worse while keeping the spasms at bay. What a balancing act that is going to be!

Thanks for the info. It is amazing what you can learn from all of you by asking a few simple questions!