gertie

I don't think I would ever eat if I waited until I got hungry. I have to eat because of hypoglycemia. My appetite was better when I was taking Neurontin.

Is she a diabetic? I'm wondering why she is drinking diet soda? They make my heart arrythmias worse & trigger a migraine but of course everyone doesn't react the same. I wish I knew something that would help her. Hope she gets better soon.

Has anyone had a root canal? When the dentist filled my tooth he drilled into the nerve. What makes it even worse, I didn't have a cavity but was only having an old filling replaced. Now I can't chew on the tooth. It seems every experience I have with dental work has been negative. I've been putting this off for a long time but the only other alternative is to have the tooth pulled. That would be a faster procedure but I still wouldn't have anything to chew on. I have severe reactions (seizures)to glues & other chemicals. I'm told it takes a long time to have a root canal? What was your experience. Thanks.

Thanks everyone. The roommate or housemate is a good idea, something to think about. I think I might feel like I just had another job to do.

I notice that most of us have days/weeks when we feel to ill or weak to get out of our chair. I can't help but wonder how you keep your household running?? I live in rural area where there seems to be an unending list of chores that always need doing. I'm a senior & can't afford outside help nor can I afford to leave my home & go to a retirement home. It seems to be a hopeless situation for us on a fixed income. thanks.

My dentist uses carbocaine or marcaine. Just be sure to tell the dentist "no epinephrine".

I have Hashimoto's but do not take medication for it. The weird thing is when dr test my thyroid it may be low & I have it tested again in a few weeks & it is normal. It's been this way for years.

I don't think POTSY is a word but don't know how else to describe it. I had plans with DH this a.m.,& felt ok when I got up. I was eating breakfast when I started feeling lethargic, my arms felt weak & I couldn't finish breakfast. I stopped eating & started getting dressed & doing a few light chores hoping to work myself out of this feeling. I continued to be weak, not exactly nauseous but just blah & wanted to lay down. I could not bring myself out of this feeling so I finally told DH to go without me. Three hours later I'm still tired. I've done this before but haven't been able to figure out the cause. I ate nothing that I haven't eaten before. Do you know if there are certain foods that cause this more than others? How do you avoid it? I had not eaten but a few bites so I don't think I had overeaten. Thanks for your help. What makes the most angry is I wasted time & energy getting dressed & then didn't get to leave the house.

I know it is frightening to have a child that is ill. I've not had a child with Dys/POTS etc but I do have children that have had health problems. It would be good if you could find a support group in your area. Unfortunately I've been living with Dys/POTS for many years & no one in my area has heard of Dysautonomia not even the dr's. The only time I've ever mention it to a family member they just ignored me, never even asked a question. I know how hopeless she feels but she will learn to cope with time.

When I started having urinary tract problems I was given antibiotics but when dr finally tested my urine I did not have an infection. Mine turned out to be Interstitial cystitis which I believe is one of the symptoms of Dys. My thyroid will test hypo at one testing & a months later it will be normal. It's been up & down like this for years.

You are not alone. We are all here for you. I am also a Christian & that helps me get through the day. I realize that "things happen" to everyone. God does not cause it, He loves His children. The Bible does say He will not give us more than we can bear & He will always give us a way out. Hope you feel better soon.

I do much better with a small group than a crowd. The noise of everyone talking at once is enough to give me a headache. Thanks for your replies.

Is it just me, or are social events tiring & stressful to anyone else? I enjoy seeing & visiting with people but after an hour I feel like I've tried to run a marathon. I always end up with a migraine headache. My brain has to work overtime trying to remember everyone's name & try to carry on a sensible conversation. It seems to take me 2 or 3 days to rest from this. I feel better to never leave my home but I know it isn't good to stay completely isolated from people. Thanks for your response.

I can't think of many foods I eat that don't cause some kind of negative reaction. If I haven't eaten the food before I eat only 1 bite the first day. Gradually increase amount by 1 spoonful a day if no life threatening reaction. I went so long without eating a proper diet I was malnourished & fainting everytime I stood up. I was afraid that every bite of food I ate would surely cause my death. I finally realized if I didn't eat I was going to die, so I eat what causes me the least reaction. I definitely stay away from foods with additives & eat only whole foods.

I'm furious you are having to go through this. When I first started having symptoms 25 years ago that was the first thing I heard from every dr I went to.

I was so humilitated by them I stopped trying to find help until I was to sick to get out of bed. I was just recently diagnosed with Dysautonomia/POTS & the dr couldn't believe I had been suffering this long & not one dr knew what was wrong with me. I had hoped things had changed in the last 25 yrs & that dr's were more caring & attentive.

Jana, I have every symptom you mentioned & mine are related to Meniere's disease. Have you been checked by an ENT? The drop attacks, feeling like you're having a seizure for a few seconds, & the fatigue that accompanies Meniere's is like nothing else I've experience. Meniere's is a very debilitating illness.

Zinc Oxide might help or Hydrocortizone cream. Hope you find something that helps.

I can't tolerate oatmeal either. I'm not allergic to oatmeal & I don't think carbs has any part in my symptoms. I have the same problem with soy. I'm very sensitive to mold & I tend to think that might be my problem with them.

Have you read " Eat Right for Your type" by Peter J D'Adamo? Altho, I can't eat a lot of the foods that are recommended for my blood type the books are interesting.

I was diagnosed with Meniere's by an ENT. I was having vertigo, nausea, fullness in ears, tinnitus 24/7, couldn't ride in a car. It's the worst thing I've experienced including Dys. I hope you don't have it. It's debilitating to say the least.

Thanks everyone. I was told 25 years ago MCS was toxic overload but since then I've gone to organically grown foods, no chemicals in home, etc & my sensitivity to odors are worse now than ever. I've tried everything, even having perfume in the house thinking I might get used to it & that was a big mistake. I had a dr tell me that I could think of it as a curse or a blessing. Actually we should not expose ourselves to chemicals even if they didn't make us sick.

I go through the same thing with my family. I ask they not wear any scented products & they reek of detergent & hairspray with every visit. I've even bought unscented products for grandchildren so I could baby sit without getting sick & that didn't work either. I I was shocked when a friend of mine who has cancer & MCS told me that cancer was a piece of cake compared to MCS. She also contributes getting cancer to her toxic exposures.

IMHO there's no way to win in this situation. I prefer to be alone but I can't tell my family not to visit so I suffer in silence.

I normally do not like to have visitors come in my home but rather meet friends somewhere because everyone either wears perfume or their clothes smell of detergent. I was always a very social person until Dysautonomia now almost a recluse. I had unexpected guest yesterday & altho they didn't wear perfume, where they sat smells of detergent. I covered the seat with a quilt & run air cleaner but seems my whole house reeks of that odor. I know that makes me sound like a horrible person but unless you're sensitive to odors you can't understand how stressful this is for me. I have been very weak, nauseous, & dizzy all day from this exposure. I'm lucky I haven't had a migraine yet. Does anyone else have this problem? I have found nothing that lessens this sensitivity. Thanks.

I have similar symptoms from Meniere's. When I am having a Meniere's attack I am so weak & lethargic I can hardly move. I have had what is called drop attacks when you fall to the floor. I guess the worst part is the vertigo, nausea, can't walk. When I close my eyes while standing I fall. I have to be careful of eating too much salt & food allergies can also trigger an attack. Have you been check by an ENT for Meniere's? Some people say Valium is a life saver for them during an attack. I can't take Valium but Ativan seems to help some. Hope you find answers.

Thanks for your replies. Unfortunately I can't tolerate antibiotics either. At this point I've tried many antibiotics & have had life threatening reactions to all of them.

I have had good results before with an Osteopath, thanks for reminder.

I'm going through a miserable time. I have sinus inf with temp. I need decongestant but can't tolerate them, also need pain killer but can't tolerate them either. The only antihistamine I can take at all is Allegra & if I take more than a childs dose I have a seizure. I can't win. I'm using heating pad & using nasal rinse but that isn't helping either. Any suggestions. Thanks.

I can't tolerate reg milk because of IBS but I can use Lactose free milk for my cereal without a problem. Yogurt doesn't seem to bother me.

Thanks for reply. Are both your systolic & diastolic high? I'm wondering how you lower systolic without the diastolic getting low. Hope that makes sense.

Anyone have this type blood pressure? How do you treat it? I've had this for years but now it's getting worse. My BP avg is 180/70. Dr is afraid if he gives me BP med to lower it will make my POTS symptoms worse. Thanks.

I went through the same thing when I started having symptoms of Dysautonomia. The only things that didn't trigger a migraine, fainting or some other symptom was white potatoes, sweet potatoes & green beans. My dr's didn't know what was wrong with me but suggested I stop eating anything that could have been sprayed with pesticides. I started gradually adding organically grown foods a few bites at a time. There's still a lot more foods I can't eat than I can eat but going organic did help some. I still have a bad reaction to all medicines (except a couple) & supplements. If dr gives me an IV of supplements I loose consciousness.

The dr put me on Neurontin to try & help calm my autonomic nervous system & it also helped some. I haven't found anything that has helped me a lot. Sorry I could be more help.