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Hi everyone!!!


Sue
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Hi everyone!!

I am trying my best to recover from my last spell, a little difficulty dealing with the high dose of meds but am trying very hard. Dr. Grubb now has me on 40 mg of Celexa, .01 Florinef twice daily and we are trying a new drug Focal 2.5 mg three times a day. I have gotten pass feeling lightheaded/dizzy ALL THE TIME. but am having difficulties, big time if I lower my head down, or bend down to pick something up. It totally triggers that out of balance feeling. I have found a doctor close to home my first visit is Tuesday, Dr. Grubb was rather excited to have found a new doc. Supposedly this guy has been studying NCS for ten years now. His name is Dr. Pirez, he is in Roseville, Michigan.. So I will discuss that with him.

Dr. Grubb is willing to mentor and form a relationship with this guy, that way if I am not feeling well I can get to this guy and he can contact Grubb if he needs to.

But I must tell you I am on a mission. My family, friends as well as myself, are totally disgusted with the medical field. So what I am trying to do is to type up some kind of medical emergency what to do list "FOR DUMMIES" to carry around with me, keep in my car, give to my family, etc. anywhere I will be I will take with me. So when I end up in the E.R. this can be handed to them so I don't end up in their dumb system, doing all kinds of unneccesary tests, as well as getting the psychotic patient treatment from medical staff who don't know or understand this disease and decide to treat it as it doesn't exist.

So I am wondering do any of you carry something like this on yourself and what kind of information do you have on it.

Basically I was going to give a brief explanation of NCS (don't want to over stimulate their brains by going into to much detail) My medications and what they do. So I don't get harrassed by physicians telling my husband I take depression meds for attention!!! Dr. Grubbs phonenumber, hopefully new doctors phonenumber. The immediate need to be hydrated.

So if you think I should include any other information please let me know. When I have this finish I will have my daughter put it on her web site so anyone can copy, laminate and keep with them.

Thanks for all your help

Sue

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Sue,

Sorry to hear you've been feeling yucky, but hopefully with time the side effects will diminish. I know for me, Florinef causes that dizzy lightheaded feeling, and the higher dose I take the more severe it becomes.

In regards to the emergency list, you might consider a Medic Alert bracelet. I have one that I wear 24/7, and a fully informative emergency card that I carry in my wallet, which it makes me feel much better when I'm out alone or in case of emergency. Medic Alert keeps on file all of your meds, doctor's and emergency contact numbers, as well as a brief overview of your condition. I have POTS and they give out only the information that you give them- such as the need for sodium and fluids, as well as NEVER to give me epinephrine or anything that would speed up the heart rate OR drop blood pressure.

You are right about the medical field being in a state of disgust, but it's good that Dr. Grubb is working with you and willing to communicate with another doc for you :D

Hope you feel better soon!!

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I wear my medic alert bracelet at all times when I'm outside my house...or if I'm home alone. The bracelet has engraved "Drug allergies, asthma and dysautonomia. Call Medic Alert (patient # here)" Medic alert has all my doctor's names, numbers, and a full list of meds and allergies.

It's been kind of like a "murphy's law" thing--ever since i got the bracelet, I've not needed to use it!

Nina :) go figure! :D

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Sue,

I commend you for helping yourself and wanting to help others with this.

Nina and Jessica,

The medic alert bracelet sounds like a good idea. I keep saying I am going to get one. I live out in the boonies and I hate to think what these small town hospitals would do to me if I ended up unconscious in the emergency room. Did you get your bracelets through medic alert?

Michelle

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Yep, I got mine through the Medic Alert company. That way, they retain my files for a small fee, and I can update things online as needed when things change, like meds, or the occasional doctor change.

http://www.medicalert.org

I have the classic emblem, which I ordered without a bracelet (emblem only) and I make my own bracelets because they're prettier than anything Medic Alert has! I've made bracelets for a few friends too--I don't mind doing it, it's really easy--I just had them pay the cost of the beads and materials as well as postage. If you're not that brave, you can use Lauren's Hope, who will make you bracelets. http://www.laurenshope.com/ Initially, I bought one of their bracelets (that I still wear often), figured out how it was made and then went to town making my own.

Nina :D

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I also got my bracelet through Medic Alert, same as Nina (in fact, thanks to a post from long ago, I went ahead and ordered one!). I haven't had to use it either, but it gives me a sense of security when I'm alone, especially with the baby. I just have the standard silver one that they give you, but it's been fine- although I love Nina's idea of making it a little more attractive. I would highly recommend one for anyone who has chronic medical issues and/or food and drug allergies- the fee is minimal ($35 for the first year, I think) and it's well worth it.

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I got the 3 year membership, which was a pretty good deal. Also, they only charged me 10 or 15 bucks for the engraved emblem since I didn't want the bracelet part--I'd been a member for a few years prior.

I can't say enough about the reps who handle the orders and who update files over the phone. So far, it's been a very positive experience. I now manage my account info issues online, but for a while there I was on different meds every couple of weeks (I think we've all been THERE at times) and was calling in with new allergies and new meds at least once a month.

BTW Sue, I'm so glad you're able to be at home...and hopefully getting more stable by the day!

nina

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Hi Sue,

I'm glad you are starting to feel better. I was having a lot of trouble a couple months ago and wrote out all of the info you are thinking of using. It was very useful when I was taken to the ER because I couldn't talk. Those episodes were mostly due to medication. When I stopped the Paxil, they stopped. So now I carry a much smaller note in my wallet with my meds, and a brief medical history. I've told all of my friends and family members that I carry my medical info in my wallet, just in case I can't talk and have to go to the hospital. Plus, even when I was consious, my brain can be so fuzzy that I can't remember anything.

Good luck with your quest. Deb

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I'm not sure what you mean dizzy...? "focal" in what context?

Nina

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Thanks Merrill! Apparently I need some of that to assist me with my focus! :D I tried looking up the drug but can't seem to find any info. The closest thing I could find were drugs to treat focal seizures like Topomax.

Nina

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Hi

Yes Focal is a brand new drug, it is being used right now in children and adults with either ADHD or ADD. It definately is a focus drug and is helping me tremendously!!! I also have to visit my primary care physician everytime I see Dr. Grubb. He is not covered on my insurance carrier. so all my prescriptions and tests are rewrote by my physician here. She also is having great success with this new drug!!! (Comes in 2.5mg or 5mg, I am taking 2.5 three times daily)

Hope this helps

Sue

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Okay, that helped. The drug is actually called "Focalin" and is a central nervous system stimulant. It was approved by the FDA for the treatment of ADHD in 2002. Here's what I got on a drug website

http://www.centerwatch.com/patient/drugs/dru734.html

Also, you can go to the fda.gov website if you want to download the entire drug insert that was approved.

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