FOG HEAD-Help!
Ok, who here can help me with what I call "Fog Head"? It is a not a screaming head ache- it is more of a throbbing, confused, oh my God I need to lay down before I fall down type of thing. I have UP and take 10mg zyrtec at night and 150mg of zantac 2x day-my orginal meds from when I was diagnosed last year. I also have atarax that I take as needed but it tends to knock me out so I havent taken it in about a year. My GI pain/nausea is horrible so I had an endoscopy which was normal except for increased mast cells- big surprise. I specifically requested that the check thank goodness. I never even went back to the GI guy for a followup because he thinks it is just IBS and prescribed me Librax 4x a day - just what I need a tranqulizer 4x a day when I can barely keep my eyes open as it is! I am scheduled for a bone marrow biopsy next month. My hematologist said to try Singulaire 10 mg/day and increase the zantac to 300 mg/day. I tried that for awhile but felt so dizzy and lousy that I have "backed" everything down to the orginal meds to see if it is side effects or just "masto" symptoms. I have been in limbo since August....feeling like a am barely getting through each day. I used to work out 4 times to week-now I am lucky to feel up to 1x a week. I have 4 kids, a husband and a job(thank God I can make my own hours and work when I feel best) Dr Castells gave me a phone number to call to get the protocol for the bone marrow biopsy-testing wise so that was good but in the mean time I am going crazy! Does anyone have any helpful hints? Dr. Castells has answered some questions for me via email in the past but seems to have dropped off the radar and I hate to bug her. My dermatologist suggested the Atarax at night and changing the Zyrtec to the morning but I am afraid to try. Ideas anyone?
Do you know what your most crucial med is? I've worked out mine is zyrtec, it's the lynch-pin... if I decrease it, wham and a hospital visit normally ensues. If you do know which med is the crux for you I would base the changes around that via the other meds. Keep the most crucial one the same dose at the same time of day/night, move, change the other ones. This is just my personal experience, I've no idea whether it pertains to you but I wanted to throw it out there as fodder for thought. I also want to say I wouldn't go changing meds unless it's REALLY necessary.
Maybe if you do take the Librax ( I know nothing about that drug) perhaps take less than what the GI guy has prescribed.. maybe one a day could be what helps and then you're not so knocked out?
Can you tolerate vitamin C taken with food? I find this helps at regular dosing throughout the day/night.
Hope your health improves soon, take care.
Talk to your doctor about taking Gastocrom. It's the only thing that has put a dent into my brain fog. I took librax once. It was horrible. I can't imagine taking that 4x a day.
Thanks for the ideas guys. I love having a place to ask questions. I usually feel like I am speaking in another language with everyone else. My GI guy said that he can not treat me for anything masto related-he could only do the endoscopy to check for any other problems I might have and then refer me out since he has never treated anyone for this kind of thing
Sandy
Hey Jan,
It sounds to me like you need a new gastro! For him to say he can't treat you for anything masto related when you've already got your hematologist and dermatologist doing so, sounds like a cop out to me! I've seen that attitude! Ask your hematologist or dermatologist to find somebody for you for they are apparently believing in you. Sometimes Jan, this is the only way to find a decent doctor and decent treatment, in that it's got to be a personal referral situation coming from one doctor to another. If you explain the predicament to the doctor who is most supporting you, and ask them to personally hand pick a gastro of their acquaintance, often that phone call they make to their colleague opens the door to decent treatment. I had to do this because my gastro was out on the sidelines after she had a heart attack and when my dermatologist said she wanted a colonoscope done, I had to ask my angiologist and hematologist to open doors for me for my dermatologist is in another city and we needed someone who was going to take this challenge seriously and with great care and so I knew that there was NO WAY I was going to be able to manage this on my own. Sure enough my doctors opened the right doors and things went smoothly. It saves a GREAT DEAL of stress!!! It's worth a try anyway!
