If you have questions regarding the Driscoll Theory, Diamox, Mast Cell Treatment (Zyrtec/Zantac, etc), externally communicating hydrocephalus, this is a good place to ask. Also, you can check out the tags for ‘The Driscoll Theory’, ‘Mast Cell Disease’,’ Zyrtec and Zantac’ or use the search function and archives to read posts about these topics.
"Suffering the Slings and Arrows of Outrageous Fortune"
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Our Life with Ehlers Danlos Syndrome 
Comments on: "The Driscoll Theory Questions" (10)
Did the Diamox work for you guys? Did it help with the neck pain?
In a word, yes! The Diamox has been amazing for my daughter. In all honesty, it helped more with her headache, dizziness and positional blurred vision than it did her neck pain. But, I just checked with her to be sure, and it DID help moderately with her neck pain. She said it relieved a lot of the pressure she was feeling.
Diamox does seem like a reasonable thing to try before something so drastic as a fusion. I wrote a post about how to convince your doctor to let you try Diamox – it is called Diamox Pointers (Diamox Pointers) it may be helpful to check out. I hope you and your doctors can work to find something to relieve your neck pain! Best of luck!
Beth
Do you have to be off your pots meds to try this?
I answered on your other comment, but I will paste my answer here in case you didn’t see it…
Well, Em wasn’t on POTS meds when she started Diamox, but, since she has since been put on Midodrine and Propranolol in addition to Diamox, I guess the answer is no. I don’t know if there are any that would need to be stopped, but, in general, they should be ok. Incidentally, when Em started the Diamox and Zyrtec/ Zantac combo, her POTS symptoms improved significantly. Of course, they were still bad which is why she is now on meds for it, but the Diamox helped a lot.
Hope that answers your question!
Does it have to be Diamox, or can it be the generic for Diamox?
Definitely can be the generic – my daughter technically takes acetazolimide. Diamox is just so much easier to type and better known!
I have EDS 3, recently POTS has been confirmed. I also have other neurological issues such as sleep disorder RBD, testosterone imbalance and the likes. I’ve been dizzy for years but never realized it was causing me so much fatigue.
I figured (and so does my doctor) that it is caused by pooling of blood in the legs and stretchy veins and arteries not holding the pressure. They gave me Midodrine and it does in fact help. I do not get headaches.
Do you think maybe the Driscoll theory maybe doesn’t apply in my case? Are there any ways to test?
Sorry it took me so long to reply! I do appreciate the comment and will try to answer your question…
Keep in mind that this is just my opinion and I am not a doctor… BUT, if you do not have headaches, I would think the Driscoll Theory wouldn’t help. Sounds like you have a pretty straight forward case of POTS. So, if Midodrine helps I would say just stick with it.
However, if you do develop pressure headaches (particularly at the base of the brain) and blurred vision and tinnitus and so on, you might look into the possibility of Diamox at that point. And if you have or develop food intolerances and other mast cell symptoms, definitely consider a trial of Zyrtec and Zantac. That potentially can help with POTS symptoms.
Again, I apologize for taking so long to get back to you – let me know if you have other questions.
Hi Beth! My son and I were prescribed Diamox (hurray) However the doctor didnt know much about its use in our cases. He prescribed 125 mg once a day. Does that seem right? Or should he be taking it more frequently..he has severe migraines like your daughter did that keep him out of school, basically out of life. He sleeps constantly or escapes to his room due to pain. So i am thrilled he prescribed it at my suggestion but am not sure about the dosage. I know you arent able to prescribe, etc. but i was just wondering how often your daughter takes it. Also I am concerned that he did not order any follow up blood work to check for alkalinity. We are states away so that complicates things. But im concerned about this. Also Dr Diana talks about seeing a Nephrologist to watch for kidney stones and since I have a propensity for them Im wondering if that is something to worry about also. Does your daughter get monitored for her alkalinity or any other thing such as potassium levels? Being a nurse I am concerned to just start giving him this drug if it could lead to other problems because of not getting proper monitoring, but I am DESPERATE to get my son relief…we are so worried about him. Thanks i really really need some advice!!!
I think 125 mgs is a good place to start. You should certainly see improvement if it is going to help on that dose. You may need to add more later, if once a day doesn’t control the headaches/ symptoms. My daughter now takes it three times a day, but started out with once a day.
We don’t really monitor Em closely now, but she did go through a time when we had to do blood work once a week until we got her co2 level back up with baking soda. It will probably take time for that to get out of wack, so no huge rush, but you will probably want to try and get a panel done fairly soon so you have a baseline. A pediatrician can order it or maybe the prescribing doc could? It doesn’t surprise me that he didn’t order it to start with. I have had to ask for it every time and if Dr D hadn’t told me about baking soda, I would have never heard of it!
If you have other questions let me know! Good luck…hoping for relief for your son! Let me know how it goes!