SHEs Organized

FF... I have a friend who suffered terribly from Fibromyalgia for many years. It was so bad that she hardly left her house. Then she changed her eating to low carb stuff which really helped her. I'm so happy for her because it was a terrible thing to watch her fuffer with.

I misunderstood about the International coffee. Didn't realize that some times it bothered you when other times it didn't. You must be like me waking up each morning wondering whats gonna strike you...I hold my breath every morning when I wake up. I worry about big day events and whether I will be suffering from my headaches. My biggest worry is that I will have a killer headache on the day my son marries...if he ever does. Mine are so debilitating that I doubt I would be able to attend.

And like you its the pits not knowing what sets either you or me off ...every day is a gamble, or at least thats the way I feel.

I like the way you stay upbeat even though you struggle with how your health effects you....I realize how hard that must be. With me, people say well maybe if you didn't eat this, or drink this your headaches would go away. Truth of the matter is no one, including the experts can tell me WHY I get the darn things...and like you if I can't answer the why part then there's no getting away from having them.

I don't always take the correct meds for my headaches right away...I think I'm smarter then they are so I fudge, cause I don't like taking the "big stuff" And just like you I am afraid of the long term effects of the drugs. I just saw my headache dr on Monday and we had an interesting conversation. She wants me to take preventive drugs which I have tried in the past....side effects are tremendous weight gain and or disorientation. I told her I wasn't going to take them because my headaches ocure in cycles for a week or two at a time and then I'm usually good for a few weeks...thats how clusters differ from migraines.

Anyway after a long discussion we ended up compromising. Usually when I wake up with a twinge of a headache I reach for my vicodine plus extra tylenal. Sometimes that knocks the headache right out and sometimes it doesn't...then I take some more and if that doesn't help I use my Maxolt, which is designed for clusters...why, because my insurance company with only allow me four Maxolt pills a month...sometimes my headaches last a week or more. The insurance company doesn't have any problems refilling my narcotics so go figure...

However my dr thinks she can get an over ride on the Maxalt and that will allow me 9 pills a month. So now she wants me to take a Maxolt at the onset of a headache...her reasoning is she thinks this might knock me out of a headache cycle. I am willing to try, but like you I sometimes hesitate thinking I know better than my dr. So that's my compromise....I'm going to try it her way now.

It sucks when your health rules your life. Its hard to plan for any thing and those around you...loving and understanding as they are...somehow don't always understand. And I don't know about you, but it is humilating when I have to go to bed and Sweetie gets to see me like that. How do you handle yours???

In some ways we're like two peas in a pod...I always look to see how you are doing on any given day and am glad to know when you are feeling well. Keep looking for your answers, and hopefully you will find something that will ease the pain the IBS causes you....

Ramblinrose, I'm so glad the low carb diet helped your friend who has Fibromyalgia! I tried the low carb diet, lost weight, felt such energy, but right now, with the Gastritis, I can't be on it. But boy, oh, boy... when this Gastritis clears up, back I go to it, too. I had a pen pal who has Fibromyalgia, she got so bad that she had to give up pen palling to take care of her. As she put it, "I need to take care of "me" now." I don't take a prescription any longer for it, but just use OTC Acetaminophen for it. If I get a "flare", my body will throb, so I know I've been having stress or anxiety or feelings of "overwhelm." It's then, when I get my neck pillow, a very soft blanket, get into my recliner and do a prayerful meditation. After awhile, the throbbing disappears, like magic. It's wonderful. It's nice to know how music affects us, too. It can be calming and destressing and also, it can make our mood happier and if we get the right music, when we crisis clean or declutter, my oh my! It's like the attack of The White Tornado came through and magically re-did the entire house.

I think what's the worst thing, for me, with IBS is how there are numerous healthy foods, which I cannot eat. The pulp in oranges, skins on tomatoes, pimentos, carrots, the tiny broccoli little dark dot things, celery and onions, cut up into salads, stuffing, eggs often times, cereals, which put in seeds, nuts sometimes, but then sometimes nuts are fine. Sometime I wonder what I'm doing wrong? Holding my upper lip wrong?

Anxiety or stress makes it worst. I can't have milk or soy, or I get sick. Poppy seeds aggravate it. Sometimes bananas help, but then sometimes bananas cause problems. It's so strange. I read up on IBS, too. 1 med they speak of, helps it, which is one I take. It's wonderful at stopping the cramping from it.

Sometimes baby leaf spinach for salads will work great for me, but if I get a slice of quiche with spinach chopped up in it, my goodness... That does not work. I thought it was the quiche itself, but I think it was the spinach. Or it could have been the cream or something they used, as I'm Lactose-intolerant, but can have a strained plain yogurt I get at Costco. I stir optifiber into it, which works beautifully. I tried some protein bars, sometimes they don't work, because of the chocolate in them and nuts, but there are fruited breakfast bars, much like a Fig Newton, in blueberry, etc... flavors and they work so wonderful, especially if there's almond butter on it. The Gastritis Diet said almond butter is good, but peanut butter isn't.

DH said that when I get IBS or Fibromyalgia, he knows he cannot do anything to help it. He never puts me down or anything. He just goes with the flow. He's very good to let me rest, if I need to, too.

DH has a cousin, a woman, who is debilitated by migraines. She's stopped drinking coffee, drinks de-caf, and she uses herbs and acupuncture for it. Her headaches strike when she least expects it, sometimes lasting overnight, and she needs to work the next day. She has trigger foods, which get her going, too. I get a bad headache, if I've had MSG or another preservative I can't have. DH's cousin rests, if she can, and isn't at work, when they strike.

I've never heard of Maxolt. It's sad that you're only allowed 4 of them a month. And yes, it does such when health rules your life. It's embarrassing, too. I was having a terrible flare of Fibromyalgia and IBS for several days, and DH's best friend was turning 60, they had a dinner party BBQ for him, and we couldn't stay. We just came, mingled and said hello, said our best wishes to DH's friend and his wife, and snuck back home. I felt badly because the wife had gone to so much trouble and detail and care with this array of wonderful foods, but I couldn't dare have any. DH explained I'd been ill all week, after the party. Alcohol was served, too, and we don't drink because of medications we're on and we don't like the hangover feeling. We spent a lovely evening at home.

I sometimes feel "guilty" whereas this is concerned. My Ddil wanted to bake me 2 quiche pies at Christmas, it was real important to her, because she'd done it before, when it agreed with me. I had to turn her down. I felt badly, but explained why.

Yes, I see we're in a way, like 2 peas in a pod. But when there are good healthy days, we celebrate and can get so much more done and catch up with friends, family, etc.., too. I'm feeling so much better this afternoon. I feel absolutely wonderful, too. It's so nice when that happens, after a bad morning. I feel like so many people take good health for granted. Yes, it's something to cherish. I'm truly blessed with a very compassionate Dr., too. DD has IBS, too, and 1 DGS, too. Our DGS is so very strict with his diet, still has problems, but I admire his dedication.

I apologize for being "snippy" and saying, "I'm not a garbage mouth either." I didn't mean to sound mean. I was frustrated and embarrassed and at the end of my rope by then. I forgot to eat lunch, didn't know what to eat, and then found some deli baked potato salad. I wasn't hungry, but I ate it and it agreed with me.

DH got a newsletter from his ear Dr., I forget what their title is called, but in the newsletter it said something about people with weight problems sometimes have hearing problems. I didn't know that, but I do know that being overweight causes less circulation into the eyes, of blood, because of more fatty tissues being there. Of course, smoking affects the eyes, too, because of the circulation of oxygen to the eyes being affected, too. DD has been smoke-free for 2 months and 4 days, is doing wonderful and feels more energy and healthier.

Was glad to remember the doc said. "Do not to freak out if my bs is #250 after a meal every ones does that". So I had a normal reading yet. Did some outside stuff so it is good to think about something else.

Harriet.... High carbs of all kinds set me off. I love potatoes of any kind but they do the same as bread...course sweets do too..sugar and flour a deadly combination. I can eat a baked apple with no problems but put it in a pie and I'm toast... My favorite breakfast meal besides doughnuts and pancakes??? Apple pie

Carbs to me is like alcohol to a drunk...so I try my best to stay away from them. It's pure torture though. I could eat bread/saltine crackers and butter till the cows come home. Bread is also a comfort food for me as well. Same with other chips or crackers. I can handle sweets like candy or ice cream much easier than bread. The other day the grocery store had a sample tray set out.. Thinking the sample might be something other than crackers I popped several pieces in my mouth... Too late it was some type of homemade cracker covered with cinnamon ... Another one of my favorites...mixed with sugar. I had to march myself through the store without looking back.

FF.... Unlike regular migraines, clusters have no triggers. The causes is unknown though some experts believe the chemicals within your body that regulates your histamines have some influence. Clusters are timed headaches meaning the intensity of the headache ebbs and flows during the episode. My dexh experienced them as well. He would start in the morning with one. It would last an hour and you could time the intensity with your watch...it peeked in 30 minutes and would be done within the hour... Then two hours later he would get another one....sometimes he had 4 a day for 3 days. They usually occurred in Spring and Fall.

I didn't belie I had clusters cause mine don't behave that way... Mine start in the middle of the night and ebb and flow all day without ever having much relief... Mine usually last 5-7 days, though during that time I may have a bit of down time. I also cycle in the spring and fall with a few sprinkled in at other times. My dexh's began when he was 18... Which is typical for males. Few women are prone to them and mine didn't begin until my mid-40's. The nickname for cluster's is suicide headaches because people have been known to kill themselves rather than live with and endure the intense pain.

Music sometimes helps me. But I have found listening to audio books work better. I don't always remember what I listen to but it's my belief that the sounds and patterns of the readers voice somehow calms whatever is going on in my head.

I meant to add... I have an app on my phone called "brain waves". Hard to explain but it addresses many things like sleep, axiaty, headaches and weight loss. The sounds are just that ... Sounds...if I listen to it when I have a headache it does help... Also helps to calm you down or quiets your mind so you can go to sleep. Kind of a new age thing but I am getting g great results from it. Don't know if there is a link, but if I can find it I will post it.

If you have a smart phone you can find and read about it in the app store...just enter brainwaves

Just arrived on here and see a very interesting conversation going on. I will go back and thoroughly read all the posts.

Went to my GI today. Breath test showed normal - no parasites and no lactose problems. This past month I have been on the low fructose diet he suggested and I was able to report by feeling of being very bloated was way better. He has me purchasing some probiotic capsules and I have a lab order for a fecal test and something else I am not sure that it is all about. Will find out when I go over to the lab. We discussed my digestion problems and I told him when I don't eat after 4 pm I have a chance to digest what I have eaten earlier in the day and don't wake up in the middle of the night vomiting and with explosive diarrhea. When he gets my labs back we will discuss further. I do know, have always known that I am the CARB QUEEN. I know I will have to be making a lot of changes.

He is a wonderful GI with many years experience and he assures me we will get this figured out.

Oh Harriet I love rice, white rice that is and once started could eat a potful.... Especially with butter.... Add soon bread and I'm in heaven see what I mean....