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Hey Dr. Diana,
I am getting more and more hopeful thanks to your theory. I got my daughter’s measurements from the doctor(I emailed them to you, hopefully you got them!) and I got a growth chart and plotted them. It looks to me like she lines up perfectly with your theory. We go to the headache clinic next week and I am praying they will agree to try Diamox. I will be taking all the info I can to help guide them – a list of symptoms, your theory, the growth chart and measurements, and her MRI.By the way, I have been writing about your theory on my blog and I have had several hits by people searching for the Driscoll Theory. I am doing my best to get word of this to anybody who will listen!
Thanks!
Hi Beth, first, thank you so much for digging up those numbers! I didn’t see them in my in-box, though. I’ll send you a PM and see if we can figure that out. Secondly — HOPE! That sounds and feels wonderful. Thank you for spreading the word, too. So many people have gotten improvement, and your daughter will know overnight if Diamox is helping her — it’s an immediate effect. The mast cell treatment takes a bit longer, but even in a few days if she has MCAD, she’ll feel the difference (2 weeks for significant improvement). PLEASE keep us all posted, OK? Big hug to you… 🙂
Well, we had a horrible appointment today – truly a ‘when you hear hoofbeats, look for a horse and not a zebra’ experience. The neurologist was not at all receptive to the theory. Pretty hostile, in fact.
She says Em has migraines, plain and simple (she is the only one who believes this so far, no one else we have seen does). She thinks the pain medication is making it worse so she wants to take her off the only pain meds she is on, which is Tylenol and Aleve. The headache was present long before she ever took medication and it is constant so I just don’t see it is a rebound headache. I just don’t see how she can claim it is caused by the meds. She is upping the amitriptyline to 62 mgs even though the pain clinic said they only wanted to go up to 40 mgs. Increasing dairy intake when my daughter is lactose intolerant. No caffeine. Get up and exercise even though the tachycardia makes her faint. And so on. Very little of it made sense at all, honestly. Seemed like a ‘one size fits all’ protocol.
She ignored everything we said and, frankly, made up things to fit her preconceived notion of what the problem is. I feel like she was going to see migraines no matter what I said. She was very dismissive of this “theory” [you have to say it in a condescending tone] because she has such a successful migraine protocol, tried and true, to offer us. I am sure it is successful for kids with migraines but she dismissed the concept of an EDS patient needing customized care entirely.
At one point the doctor made the statement that all she could do was give us her treatment recommendations but it was up to us to follow it. I think she figured out that there is little chance we were going to be compliant. As far as she is concerned, it will take a good 6 months to figure out Emily’s headaches. It will be rough, but we have to do it. Sigh. She won’t come out of her box long enough to see the zebra standing in front of her. All she sees is a horse.
I will contact Dr. Tinkle’s office tomorrow and see if he will let us try the Diamox and mast cell treatment. We will not do any of the neurologist’s recommendations until we hear from Dr. Tinkle. He orginally said not to allow anyone change Em’s medications so we will see what he has to say.
Needless to say I am extremely frustrated. Any suggestions?
I will contact Dr. Tinkle’s office tomorrow and see if he will let us try the Diamox and mast cell treatment. We will not do any of the neurologist’s recommendations until we hear from Dr. Tinkle. He originally said not to allow anyone change Em’s medications so we will see what he has to say.
Needless to say I am extremely frustrated. Any suggestions?Hi Beth, I know you and I have emailed, but for the folks on the forum, I wanted to respond with a little something. As we said, when you walk into a doctor’s office with objective measurements of a drastically increased head circumference for the first 15 months of a child’s life and the doctor STILL won’t look or listen, I see some doctor shopping in your future (who’s been there? ha). It is just not worth the stress and aggravation, in my mind. As patients, it is important to keep an open mind also, but no doctor should think a cookie-cutter recipe should work for all patients — period. If you need a second opinion, Dr. Clair Francomano understands the pressure theory, and is usually open to discussing a Diamox trial. I believe she’s gotten some great feedback from that. Ditto with mast cell treatment (which is related to hydrocephalus, I believe — watch for Part 2 of the theory). So, if you need help with dysautonomia, Dr. Clair may be the doc to go to… Just a trend that I’ve noticed… Has anyone else noticed this? Thanks, Beth!
Hi,
Just wanted to give a little update. Unfortunately, Dr. T won’t prescribe the Diamox and neither will our pediatrician. The pediatrician’s reason is that he can’t go against the neurologist. At least he answered my phone query honestly and didn’t make me pay the $25 co-op just to tell me no. We have 2 more doctors we can ask, 3 if you count the pain management doc who we see on the 14th. But I seriously doubt that the pain management doc can help since I doubt he will go against the other specialists at Cinci. If the 2 local docs both say no, I guess I will have to start making cold calls to any local doc I hear anything good about. We don’t have money to travel cross country to do this, we already are looking at paying completely out of pocket to find someone willing to help us and with all of the medical bills we already have, that is a hardship by itself.If I can just get the head circumference data into a doctor’s hands for 2 minutes, I believe I can convince him. But no one will even look at it. Frustrating is an understatement.
I definitely agree with Dr. Diana that if a doctor won’t listen, they can be fired. We will not go back to that neurologist. Ever. (Unless it is to gloat how Diamox helped, but probably not even then.) I am even considering finding a new pediatrician after this, although we have been satisfied with him for years. He is definitely on thin ice right now. The only thing saving him right now is that I know he is just covering his own butt as opposed to being truly hateful and nasty like the neurologist was.
I will also say that, although I strongly disagree with him on this matter, I think Dr. Tinkle is truly trying to protect his desperate, vulnerable patients from buying ‘snake oil’. So many of us are desperate and looking for a miracle. There are so few answers and even fewer miracles. I appreciate that he truly believes he is right, but, as humans, sometimes we can do the wrong thing for very right, good reasons. That there is a ‘good’ reason is no consolation when you are being harmed by that wrong action. And I think EDS patients could be harmed in droves if this theory isn’t even considered. I think we are going to have to prove him wrong, case by case, patient by patient. My dream is to take my daughter back to our next appointment with him and present him with a changed child, post Diamox. A child out of her wheelchair, able to do and benefit from therapy, headache free and enjoying life again. Sometimes, miracles really happen but we have to be open to them when they come our way.
Perhaps we should try to get the Diamox success stories written up as case studies by the supervising physicians? We have to get this info into the medical literature, somehow!
I probably won’t know if we have a chance with the last couple doctors on our list until next week. Will update when I know something.
Thanks for the support!
Hi all,
I had a thought re: Diamox. I almost feel like we are talking about 2 different medications – one group implies that it is pure poison and another says it is perfectly safe. Anyway, I did a bit of looking about online trying to understand this difference of opinion and found that it seems like a lot of people, who are on Diamox for a variety of conditions, are on large doses – 500, 1,000 or even 3,000 mgs.For these symptoms and this particular manifestation of high intracranial pressure, we are asking for a low dose – 125 mgs or even 75 mgs. I wonder if the doctors who have refused to let us try Diamox are assuming we want a giant dose? I am planning on trying to get my daughter in to our local neurologist for a ‘second opinion’ (I have posted in detail about our ‘adventures’ in previous posts) and plan on emphasizing the low dose concept if he actually gives me a chance to speak. I really think if I can get a doctor to just look at the info for 2 minutes, he will be on board. But emphasizing the low dose cannot hurt!
Just a thought that may help others in their quest to get answers and help regarding these horrible, debilitating symptoms.
Hi Beth, How frustrating! Diamox is an old drug (about 30 years old), one that we are comfortable with, and we understand its side effects and contraindications very well. And it’s cheap, to boot! No one makes money by using Diamox! When I thought my son needed it and I wanted his doctor in on it with me because it can lower potassium, do you know what he did? He LAUGHED at me! He thought I was WAY over-concerned about any side-effects. The worst part, he said, was that it can stop working if you become too acidic. So we take baking soda capsules. My daughter’s lifetime headaches were also gone with a “baby dose” — 63mg at night. We’ve since moved her up to 125 mg. Now that we’ve added mast cell therapy, my son is in school for the first time in 3 years. It’s a great point about the dose. Also, you could ask for just a few days worth — not a month. You or your child will know if it is working likely the very first night (give it at night time). Dr. Francomano had hydrocephalus in her list of EDS conditions that we are now aware of (at her opening speech) — it’s not just me! If you ask a primary care doctor for Diamox because you are going into the mountains (it is used for altitude sickness), it is no big deal. We DO need to do a Diamox trial, but doctors prescribe “off-label” literally every day, so I’d hate to see anyone not have a chance to benefit from it before clinical trials are completed. Anecdotal stories won’t help much, I don’t think, unless we write them up in case studies and publish them (which is an option). I think Dr. Francomano is aware because I had her patients TELL her if it was working. She kept hearing the same song and dance, and the reasoning behind it. A Diamox trial would be great. Meanwhile, we must keep pushing forward! This use of Diamox will be accepted someday soon, I believe (we’re looking at it for some M.S. also and I’m setting up a multi-site study for that. I hate for EDSers to get left out of these things!). As my husband said, just ask the docs about their POTS treatments, “So, how’s it working for ya’?” Onward, my friends…
Hi! I finally have some good news to report. We had our appointment with the local neurologist this morning – actually he is a physicians asst. He was awesome – he listened, understood, asked questions and prescribed Diamox with no qualms. In fact, he couldn’t understand why no one else would prescribe it. He was perfectly willing to be guided by the results of the clinical trial and follow what had worked for others. He even praised me for being an advocate for my kid! He is my new hero.
So, we have a month of Diamox to try and we will see how it goes! Will let you know how it goes!
Back with good news! My daughter took 62.5 mgs of diamox last night and 2 hours later she told me not to get too excited, but her headache was easing and the dizziness was less too. When she got up today, the headache wasn’t completely gone but much reduced. A ‘2’ instead of the normal ‘8’ on the pain scale. That in itself is a huge improvement and I think it is just the beginning.
Interestingly, her positional blurred vision (when she turned her head to the left, her right eye blurred and vice versa) is essentially gone this morning and she no longer feels dizzy when she turns her head. She says it still feels ‘weird’ to turn her head, like it is too tight, but I suspect when we get the dose just right, that weird feeling will ease as well.
No problems tolerating the diamox thus far, but we will certainly keep an eye on her! We will bump the dose up to 125 mgs tonight and see if we can get rid of the headache completely.
At any rate, I feel like we have been granted a miracle. Dr. D, there are not words to express how grateful I am to you for putting this info out to help people like us. You have given my daughter a chance at living a full life by sharing your knowledge. All I can say is thank you – and I will continue to share the Driscoll Theory with anyone who will listen!
Hi! I finally have some good news to report. We had our appointment with the local neurologist this morning – actually he is a physicians asst. He was awesome – he listened, understood, asked questions and prescribed Diamox with no qualms. In fact, he couldn’t understand why no one else would prescribe it. He was perfectly willing to be guided by the results of the clinical trial and follow what had worked for others. He even praised me for being an advocate for my kid! He is my new hero.
So, we have a month of Diamox to try and we will see how it goes! Will let you know how it goes!
Beth! That is wonderful! I wish everyone’s doctor could hear why he couldn’t understand why no one else would prescribe it! 🙂 That made my day, Sweetie! 🙂
Back with good news! My daughter took 62.5 mgs of diamox last night and 2 hours later she told me not to get too excited, but her headache was easing and the dizziness was less too. When she got up today, the headache wasn’t completely gone but much reduced. A ‘2’ instead of the normal ‘8’ on the pain scale. That in itself is a huge improvement and I think it is just the beginning.
Interestingly, her positional blurred vision (when she turned her head to the left, her right eye blurred and vice versa) is essentially gone this morning and she no longer feels dizzy when she turns her head. She says it still feels ‘weird’ to turn her head, like it is too tight, but I suspect when we get the dose just right, that weird feeling will ease as well.
No problems tolerating the diamox thus far, but we will certainly keep an eye on her! We will bump the dose up to 125 mgs tonight and see if we can get rid of the headache completely.
At any rate, I feel like we have been granted a miracle. Dr. D, there are not words to express how grateful I am to you for putting this info out to help people like us. You have given my daughter a chance at living a full life by sharing your knowledge. All I can say is thank you – and I will continue to share the Driscoll Theory with anyone who will listen!
Well, Beth, I got a little teary on this post… 🙂 This is great news, and I agree with you that she likely needs a bit higher dose (disclaimer alert). As doctors we know that if there are chances of any side effects with a medication, it is almost sinful to expose the patient to the side effects, without giving them a therapeutic dose (something strong enough to do the job!). I have no doubt that you’ll figure out the dose. And it will likely get tweaked a bit along the way. You may want to make her some baking soda tablets to stay alkaline (CO2 above 22 or so), as the effect diminishes as acidity rises. You’ll notice some decrease in effect in a few days. That’s normal. After about a month, I was able to turn my head without feeling like I was passing out! I’m so glad she notices a difference already. Without that extra pressure, it may be just enough to lift the brainstem up a bit, and take off some fluid pressure around her brain stem. Yea! Next step? Mast cell treatment! 🙂 Thank you so much for your kind words, Beth. I feel like we’ve been down a dark road together and the joy of seeing some light at the end of your incredibly frustrating journey does indeed seem miraculous. Let’s keep spreading the hope! Big, big hug 🙂
Just tried to submit a long (grateful) update but it got rejected. Maybe I will email you so I can share the good news, until you can tweak the spam filter some more…
Just tried to submit a long (grateful) update but it got rejected. Maybe I will email you so I can share the good news, until you can tweak the spam filter some more…
Oh, Beth, I’m so sorry that happened! Someone noticed the character counter was going BACKWARDS, so maybe that is why it’s acting goofy. The webmaster is working on it as we speak. By all means, I’m happy to post it for you. I know many people are watching your journey (and they will ALL want to know your doctor’s (or PA’s) name! 🙂 Thanks so much, and many hugs to you both. 🙂
Just tried to submit a long (grateful) update but it got rejected. Maybe I will email you so I can share the good news, until you can tweak the spam filter some more…
Hello, friends, here is Beth’s email to me. She asked that I post it to share her news. It gave me goosebumps!
Actually, my news is even better today… Emily has had no headache at all today. For the first time in 2 years, she is headache free. Seems like a dream, to be honest. And I know it is a miracle!
We did bump up to 125 mgs (which is the dose that actually was prescribed, so no problems there) after the first night and that seems to be doing the trick. Yesterday, her headache was only a 1 on the pain scale – her neck hurt and she couldn’t say for sure she didn’t have a bit of a headache. Then today, no headache at all. Amazing – and for all of $4.28, which is how much we paid for the diamox.
And, not only is the diamox taking away the debilitating symptoms but it is diagnostic as well. The headache is not a migraine, not a rebound headache, most likely not even cervical instability. Diamox would not help any of those and it is no coincidence that after 2 years of a single, constant, horrible headache, she takes diamox and suddenly is better the next morning. We are documenting her symptoms or, more accurately now, the lack of symptoms. We had already started her on the mast cell treatment a few weeks ago (which had amazingly positive results as well, also within hours) and were already documenting that progress.
I feel like the pieces of the puzzle are falling into place and she now has a chance to get better – to strengthen her joints and muscles, to do her PT. She has a chance at life now and I don’t even have words to express how grateful I am. This theory and research came into our lives at exactly the right moment to prevent us from having a cervical fusion. I feel so blessed. But I am saddened for those who aren’t as lucky.
I will continue to share the hope of this theory/treatment with everyone I can, on my blog and everywhere I can. And I will do my very best to help our doctors understand and accept that this is real hope to people who need it, so others can benefit!
Again, all I can say is thank you and God bless you, Dr. D!
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