I need EVERYONE's help / input on this PLEASE!!!
I am trying to compile a list of 'precautions' (things to do and things to avoid) for us AVMers to avoid strokes, seizures, etc. and I need EVERYONE's input of their own knowledge and experience(s). A list of foods, medications, OTC items, time of day (for example: when tired, when stressed, etc.) to do and to avoid is what I am looking for.
(The slightest thing may not seem to the patient / person as having 'value or importance' in contribution but it does, so PLEASE share your experience / knowledge.) I have searched for the knowledge online on the 'professional's official' websites; however, that has proven NOT to yield any results. (I must admit that even though 'little' is known in the medical profession about AVMs, I am unpleasently surprised to not find adequate pertainable information. (My neurosurgeon has not told me any 'restrictions' nor do I have seizures - or at least I am not aware of having any; however, I know we have to be our own 'advocates' in this. I believe it's better to be 'safe than sorry'.) Although sometimes I get scared or unnerved when reading some of the experiences on here, I am so grateful for this site and the helpfulness of everyone! (Thank you Ben for the site... Thank you everyone for sharing & helping!!!) TOGETHER we CAN help each other through this!!! (Knowledge is power! We may not be able to prevent the AVM but we can empower ourselves with the knowledge to prevent additional 'side effects' occurring from it.)
Currently, this is what I know:
I am aware of the following:
Don'ts:
No consuming: aspirin, Advil, Motrin, Aleve, Ibuprofen, antihistamines, decongestants. (Tylenol can be taken. Excedrine Migraine 'Aspirin Free' is fine.) (Note: The 'regular' type of Excedrine Migraine contains aspirin - & caffiene -; therefore, it isn't good for us.)
No heavy lifting nor strenuous exercising. (No lifting over 20 lbs.)
Not a lot of sugar, salt, cheese, nor fried / fatty foods.
No overexerting one's self. (Rest when tired / fatigued. The body heals / repairs itself during rest / sleep and at night.)
No getting too: upset, happy, sad, mad / angry, excited.
Not getting stressed.
Avoid estrogen & Hormone Replacement therapy (HRT).
Dos:
Consume fish (not fried - & no 'fish sandwhiches'). (Salmon, Cod, & tuna are preferred.)
Eat lots of fruits and vegetables. (Blueberries, blackberries, bananas, dark green leafy vegetables are preferred.)
(Note: Some of the most healthiest foods are natural blood thinners - such as vinegar, ginger, Omega-3 fatty foods, blueberries, raisins, cinnamon - and must be countered with foods rich in vitamin K - such as broccoli, Romaine lettuce, mustard greens, collard greens, spinach, parsley, kale, Green Leaf lettuce, Endive lettuce, Iceburg lettuce, Swiss chard, turnip greens, seaweed, beet greens, brussell sprouts, cauliflower, aspargus, liver, & green tea.)
Green tea
White tea ('Black tea' has good benefits as well; however, green tea & white tea are the most beneficial.)
Walnuts
Almonds
Limit alcohol and caffiene intake (including the 'hidden' amounts in products).
What about usage of decongestant & other OTC medicines? Are there any other food(s), OTC meds., or supplements that would help or hurt recovery efforts? (I know 4 cups of coffee is good to help prevent strokes & 5 cups help lower the risk of dementia; however, I was informed that 2 cups/day is the reccomended intake for an AVMer.
Thank you all for your help! I will post a finalized list for everyone (as I know that being proactive in preventing any more 'complications' is better than having to experience it... "better safe than sorry"). Specific product information and the reason why or why not would be extremely helpful.
Itās beyond frustrating that we the patients have to so diligently stay current on what we can and cannot take all the while coping with our intense health challenges. I applaud your efforts for putting together this list. Yay Cindy!!