We have started the mast cell treatment yesterday – Zyrtec and Zantac. On our own, of course, since I have yet to find a doctor who will even let me ask to try it. So, I figured my best option was to present them with a done deal – it is easier to ask forgiveness, than to get permission! And, since this is over-the-counter, I feel perfectly safe to try it without medical supervision. If it helps, that will be the ‘proof’ we need to stay on it and it, theoretically, should help bolster our request for Diamox -since they are each part of the theory and treatment. If it doesn’t help then, obviously, she shouldn’t stay on it.
Yesterday, she took both medications when she got up. By 3 o’clock, she said she wasn’t itchy at all and she thought the weird rashy/hivey spots that she gets regularly were gone. Her dizzyness was less and her headache even seemed better. Her stomach was hurting much less and the nausea was less as well. She actually asked for a meal – turkey, mashed potatoes & gravy, macaroni and cheese. Oh, and brussel sprouts. Before all of the neurological symptoms, she was an excellent eater and loved things like broccoli and brussel sprouts. (Yes, she is strange!)
Anyway, she ate and ate some more. Not only was this the first time in months that she requested an actual meal, but it was the first time in a very long time that she had seconds – usually, she pushes her plate away before her food is half gone – everything she eats hurts her stomach. So, we felt that the mast cell treatment was going swimmingly. Unfortunately, her stomach wasn’t quite ready for all of that food and she felt awful after eating so well. Two steps forward and one step back.
I am still very encouraged by what small improvements we have seen after even one day and fully expect that after a couple weeks, there will be substantial improvement. I had printed off a list of her symptoms – both mast cell and neurological – and asked her to note any changes each day. 19 symptoms had reduced from her normal daily level and 16 had stayed the same, after one treatment. I am very optimistic.
On the amitriptyline front… Since the evil neurologist told us to gradually increase it to 62.5 mgs and we ended up having to fill that prescription, we have decided to use this opportunity to increase her dose beyond what the pain clinic has prescribed. If we get to a ‘good’ dose, we can halt there and talk to the pain clinic about it on the 14th. Honestly, we are kind of stuck since the new 25 mg prescription makes the old 10 mg prescription obsolete. It is better to use what we have to gradually increase the dose than to be stuck suddenly taking an increased dose when the old script runs out. We have increased it to 35 from 30 and may bump up to 45 next week. Better that than 30 mgs to 50 mgs, over night.
I am feeling that we are approaching a good dosage, but that is muddled by the fact that she is taking benedryl at night and that definitely helps her sleep. Once we really get going with the mast cell treatment, I hope she can not take the benedryl a few nights to allow us to determine which med is actually helping her sleep.
Her sleep schedule has definitely improved over the last couple weeks but I don’t know if that is due to the ami or the benedryl or a complete coincidence. She is falling asleep around midnight, sleeping through the night and waking up on her own around noon – and sometimes even earlier. This is a huge improvement. Of course, last night, she was awake until 4 am but hopefully that was an anomaly and not an end of a good run. It could be the Zyrtec or it could be just one of those nights. Will have to keep an eye on her. Hopefully, she tolerates the Zyrtec well and it doesn’t create more side effects!