Can not tolerate PPIs .. LPR + GERD

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aciphexo
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Date Joined Apr 2011
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   Posted 4/19/2011 5:08 AM (GMT -6)   
After going through a slew of PPIs, I've found that I am one of those few lucky ones who can not tolerate the PPIs at all: insomnia, confusion, anxiety, muscle aches and so on.

I've mostly got the LPR/GERD symptoms under control .. however they are not completely gone. I still have reflux at night and sometimes during the day - on 1 40mg PPI and Gaviscon at night.

However, it is getting very hard to stay on the PPI since the side effects are extremely debilitating.

Is there a way to check-in to some rehab somewhere or hospital where they can manage your side effects with other meds / morphine etc. while you go through the PPI and weaning off etc?

mock turtle
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Date Joined Mar 2011
Total Posts : 467
   Posted 4/19/2011 10:22 AM (GMT -6)   
im with you. since taking ppi s i get fuzzy-headed, feel like im loosing my balance (but i never fall down nor stagger so its just a perception thing) and my anxiety level is up.

im not certain i can attribute this to the medication. lets face it,cause and effect is hard to prove. but when i take a break off ppi s and cycle to h2 antihistamines the dizziness etc decreases but does.. not... ever... go... altogether away.

big scream

aciphexo
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Date Joined Apr 2011
Total Posts : 377
   Posted 4/19/2011 10:40 AM (GMT -6)   
No, I am pretty sure it is the PPIs doing it for me.

As soon as I am off them, I feel fine .. except for the muscle aches which take a few days to subside ..

I am quitting the PPIs .. I am not blessed to be able to consume them unfortunately .. and will have to deal with the reflux using natural / other means.

mock turtle
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Date Joined Mar 2011
Total Posts : 467
   Posted 4/19/2011 10:49 AM (GMT -6)   
so how do you handle the h2 antihistamines? i feel better, but not perfect, on ranitidine and famotidine. may i ask if you have a strategy for suppressing acid?

aciphexo
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Date Joined Apr 2011
Total Posts : 377
   Posted 4/19/2011 10:55 AM (GMT -6)   
I am hoping this was an episode that once done will eventually clear itself up .. I'll use the supplements (DGL, Honey, Probiotics, Enzymes, Mastic Gum, Chinese Herbs, Tums, Gavison and H2s, lots of water etc.)

This might take longer .. but I can not afford to have the PPIs ruin my life and make permanent damage to the muscular, nervous system.

mock turtle
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Date Joined Mar 2011
Total Posts : 467
   Posted 4/19/2011 11:20 AM (GMT -6)   
im doing several of the things you mentioned above esp lots of water and antacids an hour or two after eating a SMALL meal (i try to eat 4 or 5 small meals a day instead of 3 and i live on dgl.

loosing weight is a big part of my strategy. im 5 foot 11 inches tall (180 centimeters) and used to weigh 245 lbs (110 kilograms)...ive lost 40 lbs in 6 months and my reflux episodes have decreased in number and severity, but still have significant issues with lpr.

yeah there are work arounds for ppi s, but hey if someone doesnt get bad side effects the ppi s sure do shut down the acid.

best wishes
mock turtle

aciphexo
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Date Joined Apr 2011
Total Posts : 377
   Posted 4/19/2011 11:26 AM (GMT -6)   
Yes, I wish I could tolerate the PPIs ... I had a plan to wean myself off of them .. however, unfortunately looks like I was put in the <1% bucket by the dice thrower.

aciphexo
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Date Joined Apr 2011
Total Posts : 377
   Posted 4/19/2011 6:47 PM (GMT -6)   
I have a theory around this. I think my body's nervous system has been weakened for some reason and therefore these drugs are able to cause enough imbalance to create these side effects. It is also possible that the vagus nerve that controls the opening/closing of LES is closely entangled into this and is the cause of the original problem of the reflux itself.

I am going to an acupuncturist to see if they can attack this problem in any way.

mock turtle
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Date Joined Mar 2011
Total Posts : 467
   Posted 4/19/2011 7:38 PM (GMT -6)   
your intention to see a good acupuncturist makes a lot of sense. ive read that some researchers see some parallels between the mis firing of neurons in epilepsy and the and the malfunction of the vegus nerve during transient lower esophageal relaxations.

i looked for a medication that calms the vegus nerve down and ran into baclofen, a controlled substance that evidently doctors are reluctant to prescribe. but then i found n analogue to baclofen, called phenibut (beta-Phenyl-gamma-aminobutyric acid) a relative of gaba. its available in some health food stores and supplement stores, but i was afraid to try it cause of warning on the internet that there is a risk of addiction, and i couldnt find much research on its use as it was invented by the russians for use in their space program.

so maybe acupuncture to calm the vegus nerve down is what i might try too.

mudmagnetmum
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Date Joined Apr 2011
Total Posts : 1604
   Posted 4/20/2011 2:44 PM (GMT -6)   
I have had to come off ppis because of side effects. Now I've been off them for 3 weeks and I can now tell they were causing a lot of my stomach symptoms (nausea, constant hunger) as well as the side effects of eczema and dizziness. The dizziness was due to low blood pressure in my case, but it's gone now. I went on to Zantac 300 mg at night, then i changed to 150 mg twice a day. I'm now on just 150 mg at night with occasional 75 mg during the day, but not daily now. I had big acid rebound but after 10 days or so Zantac gave me sufficient relief. I also used gastrocote chewy tablets.

I am also taking DGL and have started on d-limonene, but no miracles thus far.

Between the acid rebound and the side effects I think the ppis gave me more problems than I had to start with, but I'm still very concerned about getting good control of the reflux. I cannot go back on them because I have food allergies and having no stomach acid can lead to new allergies. I am hoping to get off Zantac too; I can't do what's best for my allergies and what's best for the reflux at the same time unfortunately!

I would see your primary care doc and try stepping down with Zantac. Good luck!

aciphexo
Regular Member


Date Joined Apr 2011
Total Posts : 377
   Posted 4/20/2011 3:32 PM (GMT -6)   
What kind of side effects did you have?

Yes, I am using Zantac to go step off as well.. however, surprisingly I also get dizziness with Zantac as well! May be it is because my system is still over my threshold with the PPIs. However, the one with 75mg Zantac does not last long .. so I am willing to take it.

I was on PPIs for about 5 weeks (though had to constantly stop and start to see if different ones would give me better results with the side effects) - and then stepped down to 1 a day for 3 days and now its been 2 days off of them. I have't experienced a big rebound yet - but may be it is early right now. How long before your rebound start - and long were you on the PPIs before?

I am also going to add:
- Homeopathy (My homeopath is very confident about a cure for me)
- Acupuncture
- Ayurvedic supplements
(Have already taken probiotics etc as part of naturopath regimen)

mudmagnetmum
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Date Joined Apr 2011
Total Posts : 1604
   Posted 4/20/2011 4:45 PM (GMT -6)   
I was on them for about 8 months. Side effects I got were severe eczema, dizziness, cold hands and feet (poor circulation) and depression. I probably also had a worsening of my allergies but that side of it is a bit "chicken and egg" i.e. hard to say what happened first. Having read up on ppis now, I think they shouldn't be given to anyone with proven food allergies except for very short term use. I tried 3 different ppis and had same side effects with them all. Acid rebound peaked at 10 days for me and I then tried the 3rd ppi but stopped that after a week. The 2nd rebound wasn't as bad but I can't remember when it happened, I got through it with Zantac and gastracote stuff.

aciphexo
Regular Member


Date Joined Apr 2011
Total Posts : 377
   Posted 5/4/2011 2:47 PM (GMT -6)   
I've been off of PPI/H2 for about 10 days now .. I didn't get any rebound (I was on the PPIs for only 5 weeks or so though). Plus, I had been taking a lot of probiotic supplements so they may have helped ward off the rebound.

Other treatments: acupuncture and homeopathy are also on .. one/both of them are possibly helping.. but no miracles yet.

Now, I am trying to figure out how to stay sane when the reflux occurs. I can deal with the throat irritation but its the nausea that is the most bothersome. I've been chewing gum and using baking soda + water to keep this nausea at bay. Any other ideas?

dany1982
Regular Member


Date Joined Jan 2012
Total Posts : 158
   Posted 2/21/2012 3:57 PM (GMT -6)   
Hi
How are you doing? I'm going through the same thing. Any advice on what I can take/eat? What worked for you?

aciphexo
Regular Member


Date Joined Apr 2011
Total Posts : 377
   Posted 2/21/2012 5:55 PM (GMT -6)   
Hi Dany,

This is certainly a very old thread. A lot has happened since then.

My symptoms have changed .. no more nausea and the throat is much better as well ... however, I continue to get heartburn. Tried a lot of natural things - several of them helped but nothing has fully remedied the situation.

I am scheduled for TIF surgery in early March.

dany1982
Regular Member


Date Joined Jan 2012
Total Posts : 158
   Posted 2/21/2012 8:13 PM (GMT -6)   
Hi,
Thank you for responding. I was wondering what yo were taking since I'm having bad side effects from PPIs and H2 blockers and they all seem to affect my nervous system. Do you have constant heartburn or just triggered by certain foods. I irritated my stomach and esophagus after taking too much ibuprofen and that was two months ago. I guess it will take a longer time to heal since I can not tolerate medicine. I wish you lots of health and hope you'll feel better soon.

aciphexo
Regular Member


Date Joined Apr 2011
Total Posts : 377
   Posted 2/21/2012 9:21 PM (GMT -6)   
My heartburn seems to happen pretty much randomly (foods don't seem to trigger it). If you think ibuprofen has started your symptoms, I would definitely recommend trying probiotics and other things that coat the stomach linings: orange peel extract (d-limonene) etc.

I've tried several of these over the last year since I get side effects on PPIs/H2s.

Natural things:
DGL, Aloevera, Probiotics, Mastic Gum, Acidgone, Ginger, Fennel seeds, Manuka-honey+turmeric, glutamine, l-theanine, orange peel extract, apple cider vinegar pepsin-gi etc.

Yoga, breathing exercises (art-of-living sudarshan kriya yoga) - this helped me the most.

Homeopathy - didn't help.

Acupuncture - helped a bit but only for some time.

Anti-depressants/anti-anxiety meds: (I get side effects on these as well - wellbutrin and klonopin helped the most).

Antacids:
Gaviscon, Tums, Maalox (can't take these too many times either .. as they begin to cause constipation and other digestive issues).

Hope all this helps.

Kewpie1957
New Member


Date Joined Feb 2012
Total Posts : 14
   Posted 2/22/2012 12:28 PM (GMT -6)   
I've gone thru the entire family of PPI's only to discover I'm severely allergic to every single one -- I get muscle aches and a bloody/blistery rash. I've been dealing with GERD for most of the past five years now and have finally made the decision to have surgery. I've had endoscopy and manometry. I get debilitating stomach aches, severe chest pains and burning reflux at least five days out of the week. My quality of life is in the toilet and I frankly cannot wait to have surgery. I have read a ton of material and have studied the post-surgery diet. The only thing I have not made a decision on yet is TIFF or Nissen. I intend to ask the doctor, based on my individual case, which one would likely give me the best outcome.
 
I am totally ready, unafraid, informed and very thankful for this forum. I will definitely report back when surgery is happens.

PH Fan
Regular Member


Date Joined Dec 2009
Total Posts : 88
   Posted 2/22/2012 12:48 PM (GMT -6)   
Mock Turtle,you descibed exactly what i've been going through for many,many months,add to mine numbness around the forehead and on top of the head,last summer I had a mri done it was bothering me so bad,and the drs. just look at like i'm crazy,5 yrs of this crap is long enough,i'm going to switch over to h2 blockers and see if it's strong enough,I have an appointment with a surgeon next month for the tif.

Post Edited (PH Fan) : 2/22/2012 12:24:53 PM (GMT-7)


Feisty1
Regular Member


Date Joined Nov 2011
Total Posts : 27
   Posted 2/28/2012 1:33 PM (GMT -6)   
PPI-LESS
 
Did you ever have the TIF? I am doing great just burping a lot.
Bette

aciphexo
Regular Member


Date Joined Apr 2011
Total Posts : 377
   Posted 2/29/2012 6:17 AM (GMT -6)   
Bette,

My TIF was scheduled for this Friday (March 2nd). However, I am running into more hurdles with the hospital and the insurance. So, this has been moved out indefinitely at this point.

More communication is required with the insurance on this.

Feisty1
Regular Member


Date Joined Nov 2011
Total Posts : 27
   Posted 2/29/2012 7:49 PM (GMT -6)   
I am so sorry to hear this. I will keep you in my prayers that the insurance company will let you have it. If, you come to Hawaii it is only abpit $5500.00 to get it done. My insurance covered the hospital and the anesthesiologist. My Dr's visit was not covered and I need to submit another lab bill. Other than that everything was covered. Take care.
 
 
 
Bette

Kewpie1957
New Member


Date Joined Feb 2012
Total Posts : 14
   Posted 2/29/2012 10:46 PM (GMT -6)   
PPI-Less if you're still having insurance troubles, you might research TIF clinical trials. When I first heard of TIF it was at a seminar in Houston. At that meeting, the doctor mentioned that some medical groups, university hospitals, etc. do TIF surgery trials at no cost to the patient.
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