"Suffering the Slings and Arrows of Outrageous Fortune"

Dosages, Tips, Etc…

I get lots of questions about where to start with dosages of Diamox and Zyrtec and Zantac, so I thought it would be helpful to have a page with some info for readers to refer to. The Driscoll Theory is soon going to be updated and re-released, so I expect there will be many people seeking information and that the conversation about this amazing theory will be re-energized!

Disclaimer: Obviously, I am not a doctor and have no medical training, so I am just sharing my daughter’s dosage for informational purposes. You will have to make your own decisions using your best judgement and your doctor’s guidance. Consider this page a starting point that will enable you to have a conversation with your doctor and make your own decisions about your health.

Diamox Info

If you are wanting information that you can pass along to a doctor that might help convince him to let you trial Diamox, go to this post: Diamox Pointers.

My daughter started out on 125 mgs of Diamox at night – although I know some people have found relief with half of that dose. Others are able to just take it as needed, when symptoms occur. It is really a matter of trial and error to find what works best in any unique situation.

Probably, though, if a reasonable dose doesn’t help the first night or two, it isn’t going to. This is definitely not a med you should stay on for a length of time, if you don’t see some improvement in your symptoms pretty quickly. It may take time for symptoms to really improve and, some symptoms, if they are not caused by increased pressure, might not resolve at all. Your headache should at least improve quickly though and if it doesn’t, your issue probably isn’t increased pressure.

You do NOT want the Diamox Sequels, though. They are extended release and will not do what you need them to do. And they are way more expensive. Regular old Diamox is what you need.

My daughter now is on 125 mgs morning and afternoon and 250 mgs at night. It is important to take your largest dose at night, as that is when CSF production is highest. Dr. Diana is reporting that some are able to wean off the Diamox after a time, perhaps not needing it at all or just taking it as needed.

Get baking soda tablets from a pharmacy or online and start taking them [soon] if you are prescribed Diamox. The CO2 level has to stay above 22 for the Diamox to be effective and the baking soda will help regulate that! How much baking soda to take is a trial and error thing; my daughter takes tablets that are 650 mgs and has gradually increased how many she needs. Right now she is taking 7 tablets spread out over the day – she takes them when she takes her doses of Diamox.

It also is a good idea to get blood work done before or shortly after starting Diamox to have a baseline CO2 level so you know where it started out if it starts to drop. It takes time (weeks to months) for the level to change and for the Diamox then to be less effective, but we waited until it happened before starting the baking soda tablets. I do not recommend that! Em eventually had to have bloodwork done every two weeks for a couple months, increasing the baking soda dose, until the level was above 22 and the Diamox starting working properly again. Now she just knows when she needs to increase her baking soda tablets by how she feels and it is a non-issue. I would recommend getting a baseline then retesting every 6 months or so while on Diamox, just to avoid the situation we found ourselves in. If you monitor it loosely, you will be able to see when you need to increase the baking soda dose, if at all.

BTW, you can make your own baking soda capsules at home, if you want. Click here to go a site that sells the ‘machine’ to easily fill them and the empty gelatin capsules as well. We started out making our own , but it is SO much easier to just buy them in tablet form and we found Em was having trouble digesting the capsules, so the tablets were much more effective for her. Cost is about the same, as far as I recall, although, if you add up the cost of the time you spend making the capsules, tablets are a steal, in my opinion! (For us,  it is about $8 for 200 tablets, which last a month.)

Zyrtec and Zantac Info

My daughter started out on 10 mgs Zyrtec and 75 mgs Zantac. It helped immediately, although we were told to give it several weeks to work. Eventually, she ended up on 10 mgs Zyrtec and 150 mgs Zantac, twice a day. The allergist bumped her dose up, but you can play with it  at home – we bumped her up to 150 mgs Zantac before we ever saw an allergist.

Also, keep in mind that it doesn’t have to be the Z/Z combo – it just has to be an H1 and an H2 combination. So, whatever specific combination that works best is ok; you can play with different ones and different brands (beware of dyes and fillers, many people with mast cell issues are very sensitive and do better on one brand as opposed to another) and find the combination that is best for you. It could take time to find the right combination (or identify which brands have fillers/ dyes you are sensitive to and may trigger symptoms) and let it work to tamp down mast cell activity.

Treating mast cell activation is tricky all around: the anti-histamines are an important tool (you have to have both H1 and H2 blockers to do the job), that can make a huge difference in your quality of life. However, you will still need to figure out and avoid your triggers. When you know a food is going to cause a reaction, avoid it. (I know, easier said than done. Especially when you can eat a food one day then have a major issue with the same food the next day.) If you know various environmental triggers cause you problems, make an effort to avoid them. You can and will still be triggered on Zyrtec and Zantac, they will just aid in tamping down the everyday reactions so you can live somewhat normally.

 

I hope this page helps anyone who has questions about these meds. If you have any questions (or have suggestions or your own helpful tips), feel free to comment below. I make a serious effort to reply to everyone who comments, so that is a good way to get a response. (You can email me via the ‘Contact Me’ form in the side bar, but, I have struggled to keep up with my correspondence, so you are more likely to get a response quickly by simply commenting.) The other benefit of commenting is that others may land on this page with a similar question and your comment may help them get an answer. When we are able to share information publicly, it helps everyone!

 

Comments on: "Dosages, Tips, Etc…" (2)

  1. Barbie said:

    Read this all way back when – and now after 2.5 yrs of suffering with a chronic headache and about 2 yrs of “hypermobility” dx and 1 yr with a POTS dx, a neurosurgeon yesterday said he believes it could be a high pressure headache and he recommended a trial of Diamox. So – my daughter is 22- has had negative reactions to many meds. He wrote RX for Diamox (acetazolamide) 250mg 3x a day….. My first huge question is how does a POTSy take a diuretic?…. She needs about 2 liters of Pedialyte a day to function…… Won’t this dehydrate her? ……also- thank you for mentioning CCI. That’s how this got started. I sent all her imaging to a Chiari specialist – he said “no Chiari”- (whew); but some CCI.
    He wanted a lumbar puncture and and traction for further diagnostics. So I took her to Dr Wouter Schievink, who is a CSF leak specialist, and sees plenty of EDSers from all over the world who have experienced CSF leaks after LPs. He said, point blank, that looking at her,
    he would NOT allow her to have an LP-
    that she looks like someone very likely to get a CSF leak. And that he did believe her symptoms could be evident of a high pressure HA and he recommended Diamox as a better/safer test of high pressure.

    • Barbie,
      I know we have been messaging back and forth about this, but I am going to go ahead and put your comment up – if only because I get such a kick out of seeing in writing about a good doctor not allowing an LP and that Diamox is a better/safer test of high pressure. 🙂

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