Hi Jared,
So happy about your good news! Ramona's exactly right that stability and feeling better are now the goals. In addition, you will want to have a plan for keeping down your symptoms. That will include appropriate daily meds, lifestyle adjustments, and a detailed plan in case you have acute symptoms.
If possible, keep your appointment with Dr. Afrin. It is important to have a doctor who understands mast cell disorders and who is available to you by phone or email if you have a flare or some unusual symptom that you think might be caused by mast cells. You now have more information, and your appointment will be more productive because your test results are in. He'll be able to put it all together and give you more information about your condition. He'll also help you devise medicine protocols for daily use and for flaring symptoms. He should work with you on your meds until you are stable a lot of the time. Write down all of your questions in advance of your appointment and be sure to find out how to ask more questions if they arise after you're home.
There are a number of things to try in order to reduce your symptoms. Apologies if some of those below are repeats. All are intended to help figure out what triggers your mast cells so you can avoid the triggers.
Below is a list of things I have done myself to identify triggers, to reduce symptoms, and to feel better. This is a process that happens over a period of time, not all in one week.
Be sure to run anything new by your doctor to avoid exacerbating any other medical condition.1.
Lower anxiety as much as possible. Anxiety is often a major trigger, especially when first being diagnosed and frightened of the possibilities, not feeling well, and not knowing when the next symptom might hit.
Do some deep relaxation every day for at least 1/2 hour. That can be prayer, meditation, a nap, lying down with your feet up, etc.
Plan days off, if possible. Having at least a day off per week to just rest and relax might be really helpful.
2.
Make sure your body's basic needs are being met. --Eat only a variety of foods and drinks permitted on the low histamine diet for at least a month:
www.urticaria.thunderworksinc.com/pages/lowhistamine.htmOnce you're stable, you may be able to add back other foods.
--Low levels of nutrients can cause stress in your body, which can trigger symptoms. That includes even slightly low blood sugar, mild dehydration, electrolyte imbalance, and vitamin/mineral deficiencies. Electrolyte solutions can be helpful, like pedialyte. There's a ratio of how much fluid per pound of body weight a person should have daily. I set out a 1/2 gallon bottle of water in the morning and tried to get through it. If I drank something else, I'd remove that amount from the bottle.
--Get checked for vitamin D and B12 deficiencies. Vitamin C and calcium help to stabilize mast cells. If B12 is low, use a sublingual type, as it's better absorbed than the swallowed kind. Calcium citrate w/ zinc and magnesium are a good choice and don't cause constipation like calcium carbonate. Ester C is easier on the tummy.
--Get sufficient rest. If you have trouble sleeping at night, ask your doctor for something to take. There are mildly sedating meds that are usually well-tolerated by masto patients. Use the resources at
www.tmsforacure.org to find out which medicines are and are not recommended for mast cell disorder patients.
3.
Do some sort of exercise every day. You may need to start out with just walking across the house or from the front door to the curb, but you'll be surprised how quickly you can progress. Yoga is great, but you want to begin with gentle, restorative yoga, and not hot yoga or power yoga. Avoid extreme backbends at first, as they can over-stimulate the adrenals.
4.
Take steps to limit your exposure to allergens. Encase your mattress, box springs, and pillows. Have someone else dust and vacuum your house weekly, including upholstered furniture. There are many places online to get all the info on avoiding dust mites.
Look up information on how to check your house for hidden mold, e.g., at the bottom of the shower curtain, at the bottom of the track for shower doors, in the refrigerator. Have your basement and/or crawlspace checked for signs of mold and have them treated with a non-toxic, unscented product. Cover any dirt in a crawlspace with black plastic. Make sure all gutters are kept clean.
Remove mold from your diet. There are several mold-free diets online that you can Google. The only exception I have with them is that I personally have no problem with eggs, as long as they're fresh (cartons are dated). Apparently, some people do.
If you haven't been allergy-tested, that might be helpful. Watch the mold counts outdoors and stay in if high. (Desentization/ immunotherapy isn't recommended for mast cell patients.)
5.
Start a symptom diary. Note in it what you did or ate an hour or two before your symptoms and what the symptoms were. See if you can figure out a progression of symptoms that normally occurs, so you can know what the "early warning signs" are and can take more medicine if necessary to curtail symptoms. Remember that triggers can be food, allergens, temperature changes, weather fronts moving through, various stressors, medicines, infections, etc.
6.
Don't let yourself get overwhelmed with #1-5! This is a process, and it will take time, but you WILL feel better and have a much more normal life. Many of us are living relatively normal lives with masto issues. You can, too!
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My results! Can't believe it!! (Read 3074 times)
