Severe Symptom: Please help

[JoeJack101]

unknown

[Poohbear]

I see where you wrote that allergies have been eliminated. My understanding is that allergies are different from intolerances.

I too have intolerance to most meds and increasingly to foods. I was recently made aware of the possible connection between mast cell activation syndrome and these intolerances.

I haven't been able to find much research but it was an allergist and immune disease specialist at the Mayo Clinic in Jacksonville, FL that was most helpful in this area.

You can also check out the last newsletter on this site, I believe it was under research where March 2005 Vanderbilt completed a small study showing some type of possible connection between mast cells and dysautonomia.

Sorry can't be of much help but I do empathize with you!

[JoeJack101]

unknown

[Poohbear]

http://www.dinet.org/Spring2005/spring05news3.htm

[JoeJack101]

unknown

[steph37822]

oops

[Poohbear]

I would NOT recommend the Mayo Clinic in Arizona for you since they do not have the ability to do autonomic testing at that facility; the other Mayo locations would be good though if you can get in.

[JoeJack101]

unknown

[Patricia]

If you find an answer let me know. Unfortunately, I do not know there is one. I am very disabled from my POTS/CFS and know if I could tolerate some medications I could have a better quality of life. I have taken CHIPS of pills, drops of liquid form meds, and reacted badly to most everything I have tried. The reactions are different, so psychological has been ruled out. I do have an overactive immune system from my CFS and high histamine, so this is a theory, but there is nothing to do.

I deeply share your frustration and concern. It is very frightening to try a new drug with our reactive systems.

Best of luck,

Patricia

[Guest GayleP]

I have severe med intolerance that is getting worse. I used to be able to take everything and now I'm only able to handle a few meds. And in small amounts

My husband recently attended a seminar at his work about brain injury. What he found out was that apparently people with brain injury are very med sensitive. They have to starrt out taking meds at the smallest dose and even then they can still have problems.

I have mild brain injury from having brain surgery 10 years ago so in my case this really makes sense and might be the reason for my med sensitivity. So far no doctor has been able to tell me why I have it or what I can do about it. I contacted the neurologist who ran the seminar but unfortuantely because I was not her patient she was not interested in talking to me in detail about the brain injury/med sensitivity connection.

Is it possible that you have mild brain injury?

[ramakentesh]

I also suffered from quite bad sensitivity for a while - i used to feel like crap after every thing i ate - everything made me feel worse when my POTS was at its worse. Medications would nearly make me want to jump out a window - so many sideeffects.

There are a few theories regarding these problems - firstly, for POTS patients, some foods/substances tend to trigger symtpoms - i found out eventually that apparently i was suffering drops in blood pressure after eating.

However, seperate from that i still cant handle meds very well - very hypersensitive to 99% of them (betablockers are the only ones i can handle).

I read an article about the controversial diagnosis of of multiple chemical sensitivities and one study suggests there was an increase in poryphrins in the blood of sufferers exposed to certain chemicals - this means that they might be suffering (assuming it is correct) some kind of hyperreactive form of porphyria - whose symptoms include flushing, mental confusion, tachycardia, anxiety, psychosis, etc.

Thirdly, the theory that is used for migraine triggers is that the chemical that protects the brain from substances in teh blood - the blood/brain barrier which is protected by MAO chemicals is some how deficient in migraine sufferers, so that certain chemical can travel through it and into the brain to trigger migraines. Red wind and MSG, etc.

The evidence to support this argument was studies of people taking MAO inhibiting antidepressants who got migraine like headeaches from certain foods - red wine in particular -

SO perhaps one of these posibilities explain your problem.??

[joalmon]

JoeJack,

So sorry that anyone else deals with these things. It is very frightening, and seems to be very difficult to get doctors to understand and BELIEVE until you have a really extreme reaction. Sad commentary. Though I have not found a permanent "fix" to the problem, I'm seeing a nutritionist who works with lots of fibromyalgia patients (since I've got that problem, too.) His name is Dr. Rodger Murphree. His contact number is 205-879-2383. I am still hyper drug sensitive, but there has been at least a little help there.

Patricia...oh, I am so sorry but SOOO understand. I use what I call the "lick and stick" method. I have to open the capsules of the medications. I then lick the end of my finger tip and however many little pieces stick to the finger, that's my dosage for the day.

[JoeJack101]

unknown

[JoeJack101]

unknown