gertie

I'm not familiar with that diet but it only makes sense if you're sensitive to chemicals to avoid them. I have MCS & it seems I'm allergic to everything. I try to avoid all chemicals altho it is impossible when you're out in public to avoid perfume & pesticides because they are everywhere. Schools are the worse place for pesticides & chemicals. My GD has asthma & everytime the teachers insist the children clean their hands with the antibacterial cleaner she has an asthma attack.

From experience, IMHO the best thing you can do for a child is feed them organic foods, don't spray your home with pesticides or use herbicides, use unscented laundry det, no perfumes or scented soaps. Your home is the only place you can control the environment.

There have been studies done that show that ADHD is controlled by getting the child's allergic under control. It's not easy but worth it. Have you read Dr Sherry Rogers books? Dr. William Rea also has books on chemical sensitivity. I'm not sure of the name but I believe it is Doris Rapp has a book about children & allergies. There are others but I can't think of the names at the moment. Good luck!

Have any of you had this for sedation for colonoscopy? Did you have a problem? I think it's an opiate but it sounds better than the long acting sedations. Thanks.

Do you have problems with your arms trembling or the feeling you can't lift them they are so weak? I thought for awhile mine was related to depleted adrenals but now I think it may be connected to Dys. I hate not being able to do things I used to take for granted. Good luck to you!

I went thru basically the same thing with Neurontin. I was taking what is now considered a toxic dose & still had migraines & seizures. The last neuro I went to is also obnoxious. Her answer to everything from migraines, seizures, & passing out is, "don't worry about it". She has even made snide remarks about patients with "migraine personalities". I didn't ask what she mean't because I didn't want to know. I have yet to find a neuro that I didn't think was nuts.

After menopause my migraines were not everyday usually once a week so I didn't feel I needed massive doses of meds. With help of my family dr I gradually came off Neurontin. It took me several weeks. When I have a migraine then I take Neurontin as needed. I was afraid I would have more seizures but I didn't. I have much more energy & my thinking is better. Of course I don't sleep as well not being full of meds but I can live with that. I told my neuro what I was doing & she said it was fine. I'm not suggesting anyone do this but it worked better for me.

I hope you find something that works for you.

Do any of you have Meniere's disease or migraines, or tinnitus? I have the symptoms you mention but relate some of them to those two problems. Meniere's & migraines can also be part of dysautonomia. It's all more than I can figure out or cope with.

I know what you are going through. I've had TMJ so many years that the dentist now tell me I have osteoporosis in my jaws. All this because I was undiagnosed for years because I didn't have a good dr. Has the dentist made you a mouthpiece to wear at night?

How often do you have migraines? I was having them every day so I went on a preventative which helped a lot. It helped me relax & sleep better also. Good luck!

What do you take for colon spasms? I'm finding I react to most medication & don't know what to take anymore. Thanks.

Endure, Isn't Fentanyl an opiate? Aren't opiates on the list of med's not to take if you have POTS or Dys.?

I know how frightened you must be because I have the same problem. If you've already had Fentanyl & didn't have a problem with it, why do they think you would have a problem with it the next time? Altho sometimes I've been ok with something the first time & then the next time had a reaction to it.

I always like to try a low dose of a drug the first time. Being sensitive to drugs I have never been able to take over 1/2 of the dosage prescribed for me. If they gave me the dose of any drug for a "normal" person of my age & wt it would be a disaster for me.

Maybe they need to test you for naloxene first to see how you react to it. They will monitor you closely & will have other things they can use if you have a reaction. The stress you are feeling will probably be the worst part. I have a procedure scheduled where they give Versed, Fentanyl & Valium & one of those alone is enough to kill me. I may cancel.

Is your pain so severe you have to use this strong a drug or does nothing else help the pain? I don't like to take meds because they usually make me feel worse so I suffer a lot.

Good luck!

Anyone have a problem with phenergan or zofran for nausea? I really need something to take for nausea from vertigo. Antivert/Mcclezine is not something I can tolerate. Can't find any of these on the list. Thanks much.

Does anyone know if this is dys/POTS friendly? I couldn't find it on the list. thanks.

morgan, I agree with you about P.O.T.S. & Meniere's. I've had seizures, Dysauto, migraines, MCS, childbirth, IBS etc. but I'll take any of them b/4 Meniere's. The vertigo & sickness is horrendous & the room will spin sometimes for 8 hrs, then it takes a week to get any strength back. I had allergic reaction to dieuretics & Antivert so am afraid of them. I take Ativan & Allegra when needed. Allergies are a big trigger for me.

I've had dysau. for about 30 yrs b/4 being diagnosed with meniere's.

Thanks everyone for your reply.

I have bilateral Meniere's with tinnitus & migraines & must restrict my salt intake. With POTS we need salt. This seems like an impossible situation. Anyone else have this problem?

Thanks everyone, I believe the reason for the Librax is the benzo is to calm the nervous system & the other ing is to relax colon. I have tried everything for constipation the fiber making me worse, & some of the other remedies causing allergic reaction. The GI dr thinks C is related to the Dys.

I haven't tried the Librax because I'm concerned it & my migraine/seizure med will be too sedating. You would think dr's would be a little more careful, especially when you tell them you are sensitive to meds.

When I eat honey I always feel like I am about to pass out. I was told by a bee keeper they do use a pesticide in the hives to kill mites. I am very allergic to pesticides so that may be the link for me. Do you know if you are sensitive to pesticides?

I wish I was there. There are no neurologist in my area worth seeing.

I'm sorry your daughter is having to go thru this. I've had 40 years of dr's not believing anything I told them. When a dr finally looked at my list of symptoms & illness & said "I know what's wrong with you", I almost cried. I was stunned, it took me a minute b/4 I could respond. I know this is a silly question after all you've been thru but, is it possible that she has a minor sinus inf or allergy? If I get the slightest sinus or throat inf or even an allergy I will run a 102? temp for days. If I go to the dr they usually can't find anything. Best of luck!

I was given librax for IBS. I have IBS with constipation & one of the side effects of librax is constipation so I'm hesitant to take it. GI dr thinks it will help the colon cramps & I will be able to eat more foods. Anyone had experience with this med? He seems to be familiar with dysautonomia/P.O.T.S. but so far everything he has prescribed has caused more problems. Thanks.