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-   -   Symptom Confusion and the Need for a Timely Fix (https://www.neurotalk.org/myasthenia-gravis/113928-symptom-confusion-timely-fix.html)

DeliaDee 02-06-2010 08:46 AM

[QUOTE=DesertFlower;618468]
Quote:

Originally Posted by AnnieB3 (Post 618365)
I know that panic attacks are personal but I'm wondering if you can point to an event or a drug that may have initiated them. Some drugs can bring them on or make them worse. Did you know that anger and panic can't exist in your body at the same time? Seriously, my psychologist let me in on that one. So if you can try to leave the environment you are in while you are having one, think of something that makes you angry and then, once it's gone, think of something peaceful/something you love that makes you feel safe. Try that.
QUOTE]

Annie, you are right about this. I found by experimentation that the only way to make my panic go away is to get angry first. When the fear was really bad I listened to heavy metal music that felt full of anger with lyrics I could relate to (I am laughing about this now but it worked for me and I was desperate for something to help me). Once I was able to get angry, then the fear went away and then I had a chance to think positive thoughts so I could start healing.


DeliaDee, Mestinon makes me nervous if I take too much at one time. I had to adjust my dose to take smaller amounts more times throughout the day. To avoid the nervousness (and other side effects) I only take 30 mg at a time.

I hope this helps

I love that idea of forcing oneself to get angry. Thinking about it, it makes absolute sense. The problem with anxiety is that it causes your emotions to go everywhere. Everything turns into a potential cause of trouble be it medical, financial, etc. Anger would enable one to focus. I always like to get my anger out whenever I feel it or talk about something that scares me because when you keep it inside, it tends to get bigger and take over. When you let it out, you control it rather than letting it control you. With the panic attacks, I've pretty much been depending on the fact that I know they're panic attacks, and will, therefore, not hurt me, to try to calm myself down but clearly it doesn't always work. I like your method of using music to get myself angry. I'll definitely try that.

In the meantime, I think I'm going to take my dose of Mestonin down to 15mg every couple of hours see how that goes for me. I've always been sensitive to medications. It's not really bothered me since I always refuse drugs unless it's absolutely positively necessary - as in this case. Even the horror in my neck is dealt with using salsalate which is easier on the stomach than aspirin and with not so many potential problems as ibuprofen. I won't take anything stronger. So I might need a slower, more careful dosage upgrade.

----------------------------------------------------

I really can't thank everyone enough for responding to my problem and offering advice and a caring ear. You all are amazing and wonderful and I'm so grateful and thrilled that I found this forum.

DeliaDee 02-06-2010 08:55 AM

Quote:

Originally Posted by alice md (Post 618521)
Thanks Annie,

could I join what you said about Jana?

this psychological explanation is very interesting. I wonder if the anger the neurologists caused me so many times, is what made it easier for me to tolerate my respiratory symptoms? so in fact they actually did me a lot of good then?

also, my concern is that those "panic attacks" may be in fact respiratory muscle weakness that has been overlooked by the neurologist. as we all (unfortantely know) this is not a "rare" occurence.



alice

I really don't think that's the case. As I said, my pulmonary tests came out very well - especially for someone who smoked off and on (mostly on) for 23 years (I quit in October). Is it possible to have respiratory problems but have good results on the pfts? After ekg, echo, pfts, and stress test, no one (neuro, rheumy, cardio), the only trouble anyone's found is a small atrial defect that was too small to be corrected and just has to be watched every few months to make sure it doesn't grow. Could there be respiratory problems without any of those tests showing it?

DeliaDee 02-06-2010 09:57 AM

Okay. It's been an hour since I took the 15 mg. Within a half hour the severe diarrhea started, I was shakey and sweaty and drooling. The usual. Then I looked in the mirror because my mouth felt funny and my lips are puffy. Could it be that I am just not meant to take this drug? It seems to me that 15mg is too small a dose to cause this much trouble. Are there any others that can help or would I have even worse problems with the others? I took DesertFlower's excellent advice and made myself get angry and that negated the panic I felt coming on so I know that's not the problem. I also know that my vision is worse now and I think I'm weaker than I was before I took the pill though that could just be the shakiness making me think so.

AnnieB3 02-06-2010 10:03 AM

If you have puffy lips, you could be allergic to something in the Mestinon. Please consult with your doctor (today).

On that small of a dose, it shouldn't make you weaker if you have MG. I started out that small nine years ago and it made me feel much stronger.

If you can handle Benadryl, at smaller doses, it will counteract the Mestinon and take care of any allergic reaction (or possibly not take care of it if it's a bad one). Mestinon and Benadryl do the opposite thing to acetylcholine; Mestinon increases it and Benadryl can decrease it.

While I would be more than willing to give Susan (Desert Flower) credit for the anger/panic attack thing, it was actually me who brought it up.

Have your doctors thought about polymyositis? That's a possibility. I really hope you can figure out what is causing your symptoms - definitively that is.

Annie

Joanmarie63 02-06-2010 11:11 AM

Annie is right about the Benadryl, I have to take it with everything, even the mestinon.

I am like you in that I am super sensitive to all medications. But you do need to talk to your Dr. asap about just how bad a reaction you are having to the mestinon. I know I used to react that way but I guess after taking it awhile my body became adjusted to it and I don't react like that anymore, plus I do take the benadryl and I really think that helps.

jana 02-06-2010 12:05 PM

DeliaDee, have you recently been exposed to any pesticides? Has your house been treated for termites or other bugs? Do you have pets inside your house that you treat regularly for fleas, ticks, etc.? Have you been exposed to some OTHER chemicals (or OVER-exposed) within the past year or two?

DeliaDee 02-06-2010 12:12 PM

Quote:

Originally Posted by Joanmarie63 (Post 618616)
Annie is right about the Benadryl, I have to take it with everything, even the mestinon.

I am like you in that I am super sensitive to all medications. But you do need to talk to your Dr. asap about just how bad a reaction you are having to the mestinon. I know I used to react that way but I guess after taking it awhile my body became adjusted to it and I don't react like that anymore, plus I do take the benadryl and I really think that helps.

I don't have any benedryl in the house (I always go for natural treatments when something minor comes up and never so never have the basics like benedryl on hand - probably foolish on my part) and getting some in this snowstorm is impossible. It's been 3 hrs. since I took the mestonin and, with the exception of some continuing puffiness of lips and tongue, I feel much better. I will talk to the doctor about benedryl. Until I can, I think I'll postpone the medication again. Thanks Annie and JoanMarie. Hopefully, that will work.

DeliaDee 02-06-2010 12:20 PM

Quote:

Originally Posted by jana (Post 618640)
DeliaDee, have you recently been exposed to any pesticides? Has your house been treated for termites or other bugs? Do you have pets inside your house that you treat regularly for fleas, ticks, etc.? Have you been exposed to some OTHER chemicals (or OVER-exposed) within the past year or two?

No. I tend not to get exposed to too many chemicals if I can help it. Even my shampoo and shower gel is organic. In fact, all of the cleansing agents I use are organic. Heck, the bug spray I use is organic. What can I say? I'm just a tree-hugging, organic, vegetarian hippie-girl. :) When I have a cold, I use essential oils; when my knee bothers me, I use acupuncture and massage - that sort of thing. I work out of my home so that's not a problem either. It would be easier if I could point at a drug or a chemical in my house and say "Ah ha!" but alas no.

jana 02-06-2010 01:13 PM

Quote:

Originally Posted by DeliaDee (Post 618646)
No. I tend not to get exposed to too many chemicals if I can help it. Even my shampoo and shower gel is organic. In fact, all of the cleansing agents I use are organic. Heck, the bug spray I use is organic. What can I say? I'm just a tree-hugging, organic, vegetarian hippie-girl. :) When I have a cold, I use essential oils; when my knee bothers me, I use acupuncture and massage - that sort of thing. I work out of my home so that's not a problem either. It would be easier if I could point at a drug or a chemical in my house and say "Ah ha!" but alas no.

That is GOOD -- being careful about chemicals -- what you put into your body -- and around your house!! You NEED to live this way -- I do, TOO -- for the sake of MG, allergies, and chemical sensitivities.

Mestinon is "like" a pesticide -- I was sort of hoping that you were in "overload" -- that you were already getting "some" from another source. I overdosed one time when I petted a goat at a zoo that had been treated with one of those "pour it down the back" things to keep flys away (no one had POSTED this bit of info!!!). I had to leave in a wheelchair.

DeliaDee 02-06-2010 01:33 PM

Quote:

Originally Posted by jana (Post 618662)
That is GOOD -- being careful about chemicals -- what you put into your body -- and around your house!! You NEED to live this way -- I do, TOO -- for the sake of MG, allergies, and chemical sensitivities.

Mestinon is "like" a pesticide -- I was sort of hoping that you were in "overload" -- that you were already getting "some" from another source. I overdosed one time when I petted a goat at a zoo that had been treated with one of those "pour it down the back" things to keep flys away (no one had POSTED this bit of info!!!). I had to leave in a wheelchair.

Wow, that's horrific! It's so scary when you think about how every little thing affects every other little thing. Ever since this mess started with me, it's become ever clearer that our chemical-laden, over-medicated, fake-food way of life is probably the reason the rate of autoimmune is at an all-time high. I've been organic for years simply because I feel that, if you care for the earth at all, it's the only way to do live. But there's so much going on in the air and water and land that you can't protect yourself from everything no matter how green you try to live. You proved that by petting that goat!


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