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Zantac making me very drowsy, any different alternatives?

Discussion in 'Mast Cell Disorders/Mastocytosis' started by Ocean, Dec 1, 2012.

  1. Ocean

    Ocean Senior Member

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    I've been taking Zantac as an H2 blocker to address what I think are mast cell issues. I hope to be seen by a specialist eventually but right now I just take Allegra at night and was taking Zantac twice a day but I can't tolerate it well. Are there other H2 blockers that might not have this effect? I saw there's Pepcid etc but it also has fatigue as a potential side effect.

    I could take Zantac before bed but since a lot of my symptoms flare with eating I think it's most effective taking it before lunch and dinner but I can't tolerate being that drowsy throughout the day and evening.
     
  2. RustyJ

    RustyJ Contaminated Cell Line 'RustyJ'

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    You could take the 300 mg dosage when you go to bed, instead of the 150 x 2. This should last all day. Another point, are you taking the Zantac to redress mast cell disorder, because it doesn't. Zantac is an H2 receptor antagonist, but to my knowledge is not a mast cell stabilizer.

    I was on rani (Zantac) for some years, but found my reflux steadily worsening. Only when I began taking Nexium did my symptoms greatly ease.

    You need to take, in conjunction with the Zantac, a mast cell stabilizer such as Nexium. Both must be taken to prevent feedback loops.
     
  3. Ocean

    Ocean Senior Member

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    Thanks. Would Omeprazole work rather than Nexium? I have some of that. I'm taking the Zantac to help my flares involving flushing and other symptoms. They occur usually after eating but other times as well. There are certain food triggers I know of, others I don't. It seems to help since when I went without it a few weeks I became much worse. I'm going to try it at bedtime and see if it is effective enough once a day to prevent the flares I get after dinner. I read some patients with mast cell activation disorder saying they were instructed by doctors to take it twice a day at 300 each time.
     
  4. RustyJ

    RustyJ Contaminated Cell Line 'RustyJ'

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    I think so. I just did a quick google. It is the same order of drug as nexium. The important thing is to take the max dose of the Zantac (300/day) and use the mast cell stabilizer at the same time. I am using the 40mg/day dose of Nexium. I presume there is an equivalent for the Omerprazole. It does seem important that you maintain the high dosage of Zantac and reduce the Omerprazole to suit over time.

    Note these only regulate H2. You probably need to also treat H1 with Zyrtec/Clarintine plus Ketotiferon which is the H1 mast cell stabilizer.

    Also, as a protocol, you need to take the medications for some time, not just when you get reflux etc.

    The theory seems to be that long-term antihistamine treatment will lead to mast cell increase as the body tries to counter. So you need to treat both. Mind you, like many of the theories about cfs, it doesn't explain why histamine is a problem in the first place.

    I am pretty new to this protocol, but as I have needed to take antihistamines since before I became ill, 20 years ago, I think there is some merit in giving it a go, even if it is just treating symptoms. I have only just begun using Ketotiferon and Nexium in conjunction with the antihistamines in the last week and have noticed some positive changes with my mental and physical energy, that seem different to previous improvements. Eg I am doing more without the jittery feeling I usually get when I have an energy burst.

    You will get more in-depth info on mast cell disorder treatments forums. I haven't got references at my fingertips and haven't taken in much beyond the basics. But I definitely intend to when my head clears a bit.
     
    camas likes this.
  5. Ocean

    Ocean Senior Member

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    My issue isn't with reflux, it's with flushing episodes and some other symptoms. I have been taking Zantac and Allegra daily except for a brief break for a few weeks when I had some other medical issues come up and couldn't take Zantac.

    I take Allegra for allergies which I think is similar to Zyrtec. I don't have a script for Ketotiferon, or is it over the counter? If it's anything like Benadryl I won't be able to tolerate it, I can't tolerate that type of antihistamine but I do fine with Allegra if taken at bedtime not during the day.

    Thanks for all the info. I'd love to see how you continue to do on the protocol, hopefully well. What are your main symptoms, they are mostly stomach? Mine is flushing and severe nasal congestion usually after eating and overall feeling of being ill, out of it, unwell that accompanies the flushing. I'm running out of foods I can eat that don't trigger it. Fish and vinegar are particularly bad for this problem for me.
     
  6. RustyJ

    RustyJ Contaminated Cell Line 'RustyJ'

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    I have bloating and reflux after eating gluten, amines, salicylates, sulphites, pretty much everything. However for the first couple of years I had severe hayfever with fatigue. This was before the full onset of cfs. Oddly enough, my hayfever symptoms have abated, although I have itchy and gritty eyes, but no sinus

    I stick pretty much to what is called a fail-safe diet which is mostly free of the above: http://www.google.com.au/url?sa=t&rct=j&q=&esrc=s&source=web&cd=1&cad=rja&ved=0CDEQFjAA&url=http://fedup.com.au/&ei=6FK7UMC8G4iziQe3moG4BA&usg=AFQjCNHLD-wFD4daxDOkS0twyDB5obRL3w

    I am not sure of the mechanisms involved, or why they seem to wax and wane, but I suspect it has something to do with mast cell issues. Eg your symptoms, although they seem like h1 response, may be h2, hence I guess, why you are taking Zantac as a h2 receptor antagonist. Or they may be due more to mast cell activation, which is why unless you take specific mast cell stabilizers, you may not be able to control your symptoms.

    Ketotiferon is not like Benadryl afaik. All the research says it is best stabilizer and extremely side-effect free. However, it can make you drowsy. I take it prior to going to sleep. It is also said to increase appetite.

    It is quite cheap: http://mymexicandrugstore.org/

    Despite the name, lol, they are efficient and the source, although not provided on the site, is legit. It only took 2 weeks to get to Aust. There are also US specific sources, though you would need a script - google it.

    You can also get zyrtec generics for a fraction of the price anywhere on the net. Zyrtec is very expensive here. I urge you to do more research on mast cell activation and visit specific sites, rather than get a half-assed story from me. There are also a couple of threads on this forum on mast cell activation disorders.

    I am pretty sure that mast cells are involved to some extent in my case. As I said previously, although the rani worked pretty well for years, my reflux gradually worsened. The nexium had an immediate effect, so I can now tolerate the food issues to a greater extent. I am unsure if this means I should still avoid them though.
     
  7. Ocean

    Ocean Senior Member

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    Don't worry I'll do more research. For now I'll be trying Zantac before bed and see how I do with that. I hope to be able to see a specialist and get or rule out a MCAS diagnosis. I know flushing is a symptom of it but of course it could be something else causing it. I have reflux but I've had it for years and I think it's unrelated to all this. I do have stomach issues too. If I make it to a specialist I'll try to update here on what I found. Thank you!
     
  8. camas

    camas Senior Member

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    I've also had problems finding an H2 blocker I can tolerate. If taking Zantac at night doesn't work for you, another option might be Holy Basil which is a natural mast cell stabilizer and H2 blocker.

    If you can find a MCAS specialist, please do fill us in!
     
    triffid113 likes this.
  9. Ocean

    Ocean Senior Member

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    I just saw that same post about holy basil too last night after doing some research. Have you tried it for this problem? I will definitely update if I get in with a doctor. This problem is driving me crazy. Not to mention it's totally screwing up my weight loss diet, since the things I can eat are so limited.
     
  10. camas

    camas Senior Member

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    Yep, I tried a holy basil tincture for one day. I felt fine on it until the next day when it appeared to have a rather dramatic antifungal effect (cleaned me out pretty good). So I've been waiting to try it again until I feel up to dealing with what I assume was yeast die-off.

    Right now I'm taking around 20mg of Zyrtec and no H2 blockers, but I am using NeuroProtek which is a mast cell stabilizer and am trying to avoid high histamine foods. I did attempt an orange today and had almost immediate flushing/burning and stomach pain. Oddly enough, the thing that's helped my stomach the most has been giving up my morning cup of black tea. I've switched to peppermint tea which, according to this paper, helps stabilize mast cell membranes.

    I empathize with you on the diet front. I've had to drop below 1,200 calories a day to lose anything, and I know that's not recommended. But it's tough when you have a limited number of foods you can tolerate and can't exercise!
     
  11. Ocean

    Ocean Senior Member

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    Yeah I was doing a high protein diet which was working wonderfully for weight loss but I don't eat meat other than fish and I react so much to fish it's just not an option right now. Hard to do high protein/low carb when you don't really eat eggs, dairy, or soy (all those because of other health issues I have) or meat or fish!

    Do you get any side effects from the NeuroProtek at all? I don't know much about it. Do you get flushing in your face or elsewhere?
     
  12. camas

    camas Senior Member

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    I get the most noticeable flushing on my cheeks and over the bridge of my nose and, of course, my ears, but I feel the burning/flushing all over. I didn't realize it was histamine related until the dermatologist showed me that I had dermatographism.

    If you google or do a search for NeuroProtek here, you can find out quite a bit about it. The only side effect I'm getting from it is pain in my shins and left thigh bone. Since I'm not reacting in any other way, I'm assuming that stabilizing the mast cells in my bone marrow must be doing something positive. I'm only taking a pill or two a day. I haven't come across any masto patients taking more than a few pills a day despite the weight recommendations listed on the bottles. They say you need a trial of several months to really test it, but some have noticed benefits right away.
     
  13. Ocean

    Ocean Senior Member

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    I get that same flushing! Nose and cheeks. Hot and bright red/pink. I will look into the Neuroprotek thank you.
     
    camas likes this.
  14. charlie1

    charlie1

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    The theory seems to be that long-term antihistamine treatment will lead to mast cell increase as the body tries to counter. So you need to treat both. Mind you, like many of the theories about cfs, it doesn't explain why histamine is a problem in the first place.

    Rusty - I've never heard that before. On top of my diagnosed POTS, I have suspected that I have MCAS as well as Ehlers-Danlos sincre reading up on it on PR and prettyill.com. Doctor Diana of pretty.ill suggests trying H1 and H2 blockers for a trial period to see if symptoms decrease. (brain fog, dizziness, weakness, flushing, intracranial pressure are currently my worst symptoms). Gluten free diet has helped as well as staying out of the heat. Big help also is the Mestinon for my POTS.

    I'm quite sure my doctor will not prescribe any mast cell inhibitors ( Ketotiferon) to take with the over-the-counter once/day Reactin and 2x day/ 75mg zantac that I presently am taking (without her knowledge). I do happen to occasionally take my prescribed Omeprazole for acid reflux but I stopped it since I thought the suggested zantac had similar action regarding mast cell inhibition. But after reading the theory that you mentioned, I see that I should probably take the omeprazole each morning with my Reactin. Question: is Nexium/Omeprazole a mast cell inhibitor??

    I am new to the MCAS but have been reading lots to understand it more. When i next see my neurologist for another tilt table test in June, I will see what he thinks about the possibility of my having MCAS. It appears that not all doctors agree it even exists.

    So, is my thinking correct? Do you suggest I take the omeprazole (similar to Nexium) with the Reactin (H1 blocker) and also that I increase the zantac from 150 split twice/day to 300 split twice/day?
    Thanks!
     
  15. RustyJ

    RustyJ Contaminated Cell Line 'RustyJ'

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    Hi charlie I'm no expert. I suggest you look at a dedicated mast cell forum. There may be a reference to one earlier in this thread or in the mast cell forums on this site. Cheers Rusty
     
  16. camas

    camas Senior Member

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    Hi charlie1

    Omeprazole and Nexium are not mast cell stabilizers. I believe they are used in treating the reflux that so many people with MCAS seem to have. So it sounds like your approach in taking omeprazole as needed makes sense? Of course mast cells release a great deal more than histamine, so in addition to an H1 and H2 blocker it is good if you can find a mast cell stabilizer that you can tolerate.

    If you don't think your doctor would prescribe ketotifen or cromolyn, you could try supplements or herbs. A lot of people seem to benefit from Dr. Theo's Neuroprotek. Thorne's Quercetone was also found in one study to be more a more potent mast cell stabilizer than cromolyn. Both of these turned out to be a little too potent for me, but I'm having some luck with the herb feverfew which has some mast cell stabilizing properties.

    In my signature is a link to Dr. Afrin's latest paper which is a great primer on MCAS. If you'd like a printable copy of that pdf for yourself or your doctor just PM me with your e-mail address and I'll send it along.
     
  17. Ocean

    Ocean Senior Member

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    Camas, by "a little too potent," what do you mean? Did you get side effects?
     
  18. camas

    camas Senior Member

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    Hi Ocean,

    The Neuroprotek was causing bone pain. I don't know why, and asked Dr. Theo through his facebook page, and he didn't know either. I initially felt quite a bit better on the Quercetone, then I started developing strong anxiety and irritability from it -- like I'd had a whole pot of coffee or something. I tried lowering the dose, but even the tiniest amount brought this on. My doctor suggested I try a less potent form of quercetin. That's when I read about feverfew having both quercetin and luteolin like Neuroprotek. I'm feeling some better and tolerating it just fine -- maybe because it's not so concentrated? I can also adjust the dosage easily and have been taking between 2-4 pills a day depending on how I feel.
     
  19. charlie1

    charlie1

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    Hi Camas, I will PM you my email address. I've read most of the Afrin paper and would love a printable copy to take to my specialist app'ts in June. Thanks for the offer!
    Yesterday I went to my optometrist who said that my eyes are so dry she wouldn't be surprised if I had Sjogrens. I questioned mast cell activation and she gave me a prescription for Pataday if I don't like the otc Opticrom which I've only just tried tonight.
    I've been on otc Nasalcrom for 5 weeks now and within the first week I noticed a HUGE difference in my 20 yr. on-going nasal congestion! The problem was never mucous back-up, just swollen passages that didn't allow me to breathe easily which often leads to headache. From reading on this site, I tried the nasal sodium chromate and voila ! Thank you PR and the faithful members.
    I doubt the nasalcrom nor the opti crom will help me systemically (if i do indeed have mcas) so I will look on-line for the Neuroprotek or Thorne's Quercetone (thanks for the tip) and hopefully I can tolerate it. I have occasional mild - moderate GI issues lately but they were much worse years ago before I cut out gluten and milk from my diet.
    My problems are very neurological - brain fog and body weakness when a 'spell' comes on. From what I've read, that doesn't necessarily mean a POTS episode but could instead be a mast cell activation. Wish I knew the trigger :(
    My doctor has said she doesn't want to send me for skin testing (allergy) until my symptoms are gone. I don't feel they'll ever be gone if I don't get an allergist involved!
     
  20. camas

    camas Senior Member

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    charlie1

    I'm sorry your doctor isn't being more helpful. I've never heard a doctor say they'd send you for testing after all your symptoms are gone. Makes no sense! I hope you can find some doctor willing to help you rule MCAS in or out. Maybe the Mastocytosis Society Canada would have some recommendations? I have a couple of support groups listed in my signature that might be of help, too. I really like the facebook group. I've learned a lot from all of the smart women there.
     

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