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!