gertie

If I exert myself very much I feel weak & my arms feel shakey. I do have adrenal exhaustion also but am wondering if this is also a part of Dysautonomia? I also have Hashimotos's thyroiditis. With so much going on I don't know what to blame it on. I am on no meds only because everything dr's give me cause horrible side effects. I have had blood test done & no anemia or B-12 def. Thanks.

I was told I have a brain injury. I'm not sure exactly how I got it but MRI shows temporal lobe injury. So far, I only have partial seizures. Sometimes they are triggered by meds, chemicals etc. usually things I would not think would cause a seizure.

Is being sleepy a part of Dys? I've never napped through the day but for the last month every time I sit down I fall asleep. I feel so sluggish. I'm usually opposite & can't sleep. My blood test showed my TSH to be on the high side & my T3 is borderline low. How can both hyper & hypo thyroid be treated at the same time? What a mess to be in. thanks.

I have done this & it has always been at night. Maybe I just don't notice it in the daytime. I also have the odor hallucination. I've thought the house was on fire because I smelled smoke. I do have migraines & seizures but also thought it might be allergy. I can't tell you whether to be worried or not. I have had so many weird things happen that I've told my dr about & he usually looks at me as if I was an alien. It wouldn't hurt to be checked by your physician.

I have Meniere's which has all the symptoms you mentioned. Does he tinnitus/ringing in ears or nausea with these episodes?

When I read your post I thought for a moment I had written it. After my hysterectomy, (kept ovaries), everything went downhill from there. Like you I can't take hormones because of migraines, seizures, & vertigo. I really believe that's when my Dys/pots started, altho I can't prove it.

Thanks everyone. lieze, I know what you mean about not having any stamina.

Just when I think I will never have another bout of passing out it happens again. I can't take medication because my BP goes from high to low. If I take meds it will fall too low. Anyone ever win over this demon? thanks.

Do you have Meniere's? Ativan seems to help some. Others who have it say valium or antihistamines also help. Another bad thing about vertigo is I live in fear of another attack.

If BP is high then low, does medication not make it drop to low? My BP is always high at the dr's office but normally my top # is high & bottom # is low. I have vasovagal syncope where my BP drops very low at times. I'm concerned if I'm on BP med it will drop too low. Thanks.

Thanks looneymom, My DH says honey works for him also. He eats it almost every day. I hate sounding negative all the time, but I have had bad reactions to honey. After researching as to why, it seems most bee keepers use chemicals to keep things clean & kill mites & the bees are also exposed to pesticides & that would get in the honey. I'm not sure they could guarantee a honey to be organic since they don't know for sure where the bees go.

Thanks everyone for your help. I have an IQ air cleaner now & have had a number of different air cleaners in the past & those don't or didn't help. Things such as coconut oil triggers migraines. I can't figure that one out since I use organic. I must be allergic to the world. Everything that would help the most is something I react to the worst.

I've always been sensitive to odors such as perfumes & chemicals, etc. but it's gotten so bad I can't tolerate my home or anyone in it. I can actually smell my sofa & chairs which have been outgassed for a long time. I have my furn covered but I can still smell it. My DH showers & changes clothes when he comes into the house after being outside. He gets very irritated with me & I understand why. No one can understand how miserable this is unless they experience it. I sweat profusely. It seems the more I try to eat healthy, no wheat, sugar, the worse I feel. I've been trying greek yogurt because it supposed to be so good for us but it is making my throat & mouth burn. Yogurt is the only thing that has helped my IBS constipation but I feel it may be the problem with my sweating. At times my throat, nose, tongue & legs burn so bad I take Neurontin at night to try & get some sleep but the sweating continues. Anyone else experience this & have any suggestions that might give me some relief. I'm stopping yogurt but I don't have many different foods I can eat so can't afford to give up much. Dr is no help. Thanks.

Hope, I use 1 qt of organic lactose free 2% milk (you can use 1%) & 1/4 cup organic greek yogurt as a starter. Sometimes I add vanilla. I don't have a yogurt maker so I ferment mine in the oven with light on for 8-12 hrs. For details on how to begin,Google homemade yogurt. It's very easy to make. I have tried making almond milk yogurt but it will not thicken without additives which I do not want to use.

Thanks Hope. The only yogurt I tolerate is homemade using organic lactose free milk.

Has anyone tried probiotics for colon problems? I've been told that is the best treatment for leaky gut & constipation. I ate a small amount of organic greek yogurt a few times & it seemed to help C. I have been lethargic & shakey the last few days & not sure if it could be a reaction from the probiotics since org milk is not a problem for me. I did read if you have an autoimmune problem or mold allergy not to take them & I have both. With Dys/pots I never know what is going on with my body. Just wondering if anyone had tried them & what your reaction was. Thanks.

Ginger Ale, weak peppermint or ginger tea.

When Dysautonomia started so did allergies. Over the years I have become allergic to everything. I still have a few foods that I can tolerate altho I do have some negative reactions to them but not life threatening so far. I have 2 meds I can take for seizures & migraines. I have reaction to all supplements. I have MCS & feel I am allergic to the world. Trying to avoid things has become a way of life.

I can't tolerate anti fungals. I have had seizures from them. I have also heard garlic & oregano oil are natural remedies. If you can tolerate oregano oil (it's very strong) start with drinking 1 drop in a glass of water. I suggest organic also.

I do it all the time & feel horrible after I calm down. My outbursts are usually directed toward my DH who is the only help I have. After it's over I always swear I will never do it again.

I get the feeling that I might pass out sometimes from partial seizures. I have a hyper sensitive vegas (sp?) nerve that also causes me to faint & have heart arrythmias, sometimes skipped beats, sometimes extra beats. I've also felt that way from meniere's (inner ear). I have also heard of those symptoms from taking SSRI's such as Celexa, Zoloft etc. Have you ever been tested to see if you have seizures? You might want to do some research on the vegas nerve. Best of luck!

I read that it is a vasovagal response so I guess that means it is from the autonomic nervous system. What other weird surprises does this illness have? thanks everyone.

I know this is a silly question but, do any of you ever have what I call excessive yawning? I have a day occ when I feel fine, sleep ok, but can't seem to stop yawning & every time I sit down I get sleepy. This is very annoying. Thanks.

An iron, blanket or electric heater is also bad for me. A symptom I forgot to mention was flushing. Sometimes when near EMF's I start sweating & flushing. I will try the magnet. thanks.

It means that for some of us EMF's bring on symptoms such as seizures, migraine, rashes, burning sensation on skin etc. My worst symptoms are burning/tingling sensation up my neck & arm when on computer or under lights, or seizure from being near fans or on cell phone too long. It may be different for everyone.