"Suffering the Slings and Arrows of Outrageous Fortune"

Diamox Pointers

I have been asked to share some tips or pointers on how to advocate for yourself when requesting a trial of Diamox. I came up with these when I was in the middle of a desperate battle to find someone, anyone who would let my daughter try Diamox. We were told no by 4 different doctors and my list was getting shorter and shorter and so was my hope. When we actually got to the one who said ‘yes’, I didn’t need any of these tips, but I had them ready to go.

Ultimately, I think it may be more about just finding that one open minded doctor who is willing to listen, but, many people are stuck with the doctor they have and perhaps these pointers will help in that situation…

  • Emphasize that you need a small dose to start out with – perhaps 125 mgs at night, maybe even only 62.5 mgs. Adjusting the dose to fully manage the symptoms can come later. Starting out small may ameliorate the worry that a doctor may have about prescribing this. Diamox is often prescribed at high doses and a doctor may be thinking this is what you are asking for – emphatically let them know you are not!
  • Emphasize that you will need only a couple nights to see if it works, if it doesn’t help from the beginning, you don’t need to be on it. Ask for a short trial, again, this will alleviate a doctor’s concerns. That is the great thing about this med – you will know quickly if it is going to work. No trying it for a month or two to see results!
  • State that you are willing to make the decision to continue Diamox on a day by day basis, depending on how you tolerate it. That you are willing to call in everyday to keep them up-to-date on your symptoms and get their input. This is overkill but it will let them know you are willing to work with them.
  • If POTS symptoms are the obstacle, offer to develop an emergency plan in case of dehydration or worsening POTS symptoms. Again, this is overkill, but it will help them understand that you know the risks and know how to manage any problems that may arise.
  • Explain that this theory is counter intuitive when treating POTS, but, if effective, would be treating the root cause of your symptoms instead of just ineffectively treating the symptoms themselves. Offer anecdotal evidence that many EDSers have improved with this treatment.
  • Before your appointment, create a list or spread sheet of your symptoms and offer it as evidence that your symptoms could be helped by trying Diamox. The more data and evidence you can offer, the better. As hard as it is to stay calm when you are desperate, try to be as clinical as the doctor is.
  • If you have your infant head circumference data, use it to spark a conversation about externally communicated hydrocephalus. If the doctor ignores the data, ask for an explanation of the results. (I strongly felt that if I could get one doctor to look at the data, they would be convinced but no one would even look. When we finally were told ‘yes’, the data wasn’t even needed to convince the doctor. But, doctors should be willing to look at the data, at least.)
  • If all of the above fail, try the ‘Why not’ approach. When they say no, politely as “Why not, why is trying this a bad idea?’ If they offer an objection, politely offer your own fact that refutes it and ask again, ‘so, why not?’. Just keep asking ‘why not’ until you get them to come around – or until you reach your comfort level of pushing back. This is sort of an adaptation of the “Assertive Method” of dealing with doctors, in which you just keep repeating the question and redirecting him back to the issue you need dealt with. (I remember seeing it referred to on the Inspire forum, but can’t find it to give a link.)

Take this as a starting point to help you approach  your doctor to begin a conversation about trying Diamox. Obviously, feel free to customize this as you need. Some points may not fit you – add or subtract as needed.

Hopefully, this will be of helpful to someone!

 

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Comments on: "Diamox Pointers" (11)

  1. Diana Driscoll said:

    GREAT ideas!! I would add that if you don’t yet have a doctor, those that treat autism are usually comfortable with Diamox. If you have records of your childs’ head circumferences from birth, indicating rapid growth (above and beyond the childs’ length and weight), this can help (keep in mind that some of us develop hydrocephalus later in life, however). But if it applies to your child, ABSOLUTELY use it!! More good news, after 2 years of treatment, I didn’t need Diamox any more — until I was in an accident, became “inflamed”, and needed it again for a while. My kids also needed it for about 2 years. Now they know when they need it (they are in their mid-teens). Trust me, once you’ve had that pressure reduced, you KNOW when it is back — even if you are a child. Thanks so much for writing this!!! Big hug, Diana

  2. Hi Diana, I am very excited to hear about your new meds for discontinuing Diamox and improving daily bowel movements. What are they, When will this be released? This is quite a teaser I keep seeing online!!

    Best regards,
    Tom

    • Tom,
      I am with you! When I read the comment where Dr. D talked about not needing Diamox forever and knowing the cause of gastroparesis and a fix for it, I started getting pretty excited. Can’t wait to hear what she comes up with next! As soon as I hear, I will share it on here!

      Beth

  3. Where the boys were concerned one of the major points was that we would start by only administering it when they had symptoms. So far that is the only time they need it – when they have symptoms. I on the other hand need it every day.

  4. Hi Guys, I don’t mean to tease you, trust me. I’m just not sure what the exact time line will be. It’s at the IP attorneys now to try to patent it. It took me quite a while to get the “recipe” just right. Simultaneously, we are talking to drug manufacturers. I don’t think they’ll slow us down. The medication for the IBS/constipation will be one of the medications we’ll need for that HORRIFIC fatigue. There will be different medications needed to help decrease our need for Diamox. Working on that right now. About the only advantage I see to being a VERY affected patient, is being able to tell what medication is working, and how to prove it (otherwise it basically sucks!). And as you all know, moms of affected children will work ENDLESSLY to get the help their kids need. Right, Beth? Big hug, Diana

    • Dr. D, I don’t think of it as a tease… No, what you are doing is giving us Hope, with a capitol H, as always. Just knowing there is even more hope than you have already provided is pretty darn amazing. So, do what you need to do on whatever timeline you need. And know that your efforts are making a huge difference in people’s lives. We appreciate your hard work and sacrifices deeply.

    • Jessica said:

      Can you stay on Florinef while taking diamox?

      • I will answer as well as I can, but you will want to seek out more info: I think you can be on Florinef with Diamox BUT many people who have pressure headaches do poorly on Florinef. So, if it works well for you now, you may be able to continue with it.

        Dr. Diana comments here frequently but may not have seen your question. I would suggest that you pop over to http://www.prettyill.com and ask this same question on the forum. You should get a better, more knowledgeable answer there.

  5. Jeshyr said:

    So the bad news is that my doc did not like the idea to the extent he would not even listen to or read my arguments 😦 I unfortunately got upset and cried over him, which I usually try very hard not to do, but I just feel so beaten-down by this bloody disease!! He recommended a counsellor and would not even agree to try Diamox at a low dose for a single night 😦 I feel very grumpy and unhappy right now!

    • Been there, done that! He has no idea what you are living with and is clueless.

      I know it can be hard, but, if humanly possible, go around him to get what you need. Find another doctor to help you. If you have looked at it rationally and believe the Diamox will help, then push for someone who will listen. We had gone through 4 doctors saying no, before the 5th said ‘why not’. It is worth it to keep pushing. Take a break and regroup, then try again.

      If there truly is no one else you can approach about trying Diamox, then bug this doctor every single time you see him – present your case, give evidence, explain why you think it will help, be a huge pest about it – if you are annoying enough, he might give in to shut you up!

      So sorry that it has to be so hard – don’t blame you a bit for being grumpy and unhappy. Thinking of you!

      • Jeshyr said:

        *hugs* thanks. I do sort-of agree with his reasoning – I am currently on lots of drugs, and he does not want to “be a cowboy” (his words) and add another one. The problem is that I can’t come OFF my current drugs until my symptoms are less because if my functioning level gets any lower I will have trouble coping with living here with the level of help that’s available… so I need my symptoms to be a bit better before I can safely reduce the other meds … catch-22!!

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