I am sorry to hear your daughter’s story, as she has experienced a lot of the same symptoms that I have these past 4 years. I am new to the site as well. Last week I came across an interview w/ Dr. Driscoll and was shocked to see her proposing the very same ideas I had considered myself: idiopathic intracranial hypertension (IIH), mast cell activation, vagus nerve dysfunction, and insufficient parasympathetic response. I had even considered acetazolamide, as she recommended. I think I gave up on the theory a couple years ago based on a number of negative opinions from doctors leading to the belief that mild intracranial hypertension was not possible w/out papilledema. To give you some background, I was going back to school for my Ph.D. in pharmacology and cell biophysics. Two months before I started, I suffered what appears to have been a cerebral vasospasm (CV) followed 3 weeks later by a septic elbow where my immune system failed to properly respond. As Dr. Driscoll mentions, POTS patients seem to have some type of genetic predisposition w/ trauma or infection serving as the trigger. Despite issues, I tried to start the program anyway. The result was I quickly fell apart and had to take medical leave and eventually drop out. It has been 4 rough years, but I am doing much better now. It is the result of my own search for answers, refusal to quit in the face of animosity, and being lucky enough to have a cardiologist and psychiatrist willing to think outside the box and prescribe different meds based on sound arguments.
The reason I mention all this is your ability as a good researcher and your understanding of medical terminology will be extremely important in getting your daughter better. The first thing you need to do from reading your post is find a doctor willing to prescribe Acetazolamide. It does not have to be a neurologist or someone from Mayo Clinic. Dr. Driscoll’s book reminded me of my own past thoughts concerning the possibility of IIH. A week ago, I presented a strong argument to my cardiologist as to why this made sense and he agreed to try it and see if it would help. After suffering from migraines, mainly atypical, for the past couple years; I have gone a whole week without any type of migraine or headache. I had a lot of side effects w/ the first dosage, but almost all of them quickly resolved.
I have been going to Cleveland Clinic Neurology since 2014, which is one of the nation’s top 5 neuro institutes. Every case is different, as are the specialists themselves, so keep an open and positive mind towards your trip to Mayo. At the same time, prepare yourself for the possibility that you won’t get all the answers and help you are probably expecting. I say this because Mayo is the top rated neuro institute and thus your expectations are probably very high. My experience w/ some of the nation’s best neurologists, as well as neurologists in general, is that there thinking can be too black and white. The numerous and diffuse symptoms don’t fit neatly into any diagnosis. I have had an unbelievable amount of different blood tests run and MRIs, which basically all came back normal.
I am curious about the teeth grinding and hand tremors off and on which I also experienced. I had a NM Brain Tremor SPECT w/ I-123 done. The only thing which can be diagnosed from it is Parkinson’s Disease, which was negative. Yet, the results were not normal. Tracer uptake in the caudate head and anterior striatum were asymmetric. The right side was normal, but the left showed Grade 1 loss of Dopaminergic Neuronal Terminal Density. I am not worried that I have Parkinson’s or will later develop it, but this abnormality can’t be discarded just because we don’t know what it means. Dr. Fernandez, the Head of Neurology at Cleveland Clinic, is a nice man and world’s expert on Parkinson’s Disease. We have not always seen eye to eye, but he has been willing to listen and reconsider and even alter his impression.
I plan on messaging him tomorrow about Acetazolamide and the clinical significance of the results so far. A strong case can be made based off prior med changes as well, that IIH was the culprit. My psychiatrist agreed to prescribe Mirapex prior to my first visit to Clev. Clinic for my hand tremors. The initial results were amazing in relation to my other issues, which I later figured out were the result of its vasodilation properties. My cardiologist pulled me off Altace for blood pressure a few months later and cerebral blood flow and arterial pressure must have increased resulting in further improvement. The Head of Neurology, Medical Director, and one other world class neurologist all diagnosed me w/ atypical migraines but based on my meds could offer no thoughts on how to treat it.
I will try to add some more thoughts tomorrow. It seems like a number of the issues you mention are resulting from episodic cerebral hypoperfusion and resulting oxygen deficiency. Acetazolamide might not fix everything, but it should prove to be very benefical in significantly improving or ameliorating many of the symptoms. Best of Luck. Take care. Matt