Sick again
 

Hey all. Hope your feeling well.

I have yet another sinus infection, and it's making my mg worse, by the end of the day it's hard to breathe and get up the stairs, or even brush my teeth.

I think I'm close to an exacerterbation (sp) the sulfa I am taking for my sinus infection isn't working yet and I can't sleep w the raging headaches I've been getting all day. And chest pains.

I'm getting weaker as I type so I need to make it short.

But when I breathe in, I cough like it's very dry. Due to the sinus infection?


Hope your well.

Tyson, Are you absolutely sure you don't have allergies? You're having an awful lot of sinus infections.

A dry cough can have a lot of causes. Post-nasal drip or allergic response.

If you don't feel better, go in.

Is no one taking these headaches seriously yet?

Watch for any signs of an allergic response to sulfa, since a lot of people are allergic to it. Any signs like hives and you have to dial 911. Okay?!!!

Annie

Whether this is politically correct or not, I'm sad that you have had only one reply to your post. You are obviously really frustrated with your level of care and need some support. I hope your internist will take your headaches and other symptoms seriously. Soon.

Hang in there. I hope you are more careful while out in the heat or when doing any activity. You know you can go downhill fast. It's easy to be tricked into thinking you are "ok" when you aren't.

Annie

Annie, you are right and I am feeling guilty :o. I have been busy lately, but that is no excuse!


Tyson, I worry about you! It does sound like you may have allergies. I have allergies and have to keep a close watch on the status of my nose and skin (I get itchy with allergies, not just sinus problems) . I don't get sinus infections now because I have learned to prevent them.

This may sound like a repetition of previous discussions, but the sinus problems could be from being overmedicated. My allergies flare up with antibiotics and all sorts of medication, so I try to avoid drugs as much as possible. At one time I was stuck in a cycle of infection leading to antibiotics leading to getting better then getting an even worse infection and on and on.

These are just some of my thoughts that may help....(some of these were recommended by my previous wonderful doctor whom I miss greatly. I sure wish I could find a decent doctor who actually cares. It seems like all the doctors I meet where I live now believe in drugs alone and not the use of food/vitamins to stay healthy. This is my current frustration.) Anyway, here are some thoughts that may help.

-Dry coughs are the worst. You can try some of the nasal spray, the kind without drugs, the kind that is basically salt water, this really helps me.

-I am allergic to Sulfa drugs, please do be careful and watch for signs of allergy. I think having an autoimmune disorder makes it more likely for us to get allergies...

-Vitamin C and Vitamin E really help with allergies and sinus problems. I take these 2-3 times every day if I suspect my allergies are starting. I notice that if I take them consistantly every time I start to get a runny nose or itchy skin then I rarely get a true allergic reaction. These vitamins are good for MG as well.

-Vitamin B-12 does wonders for allergies as well as for energy and seems to help with MG for many people.

-Drink plenty water.

I do think you are overmedicated and this is making your MG worse. Of course this is my opinion and I am not a doctor. Your headaches and other pains are a sign that something is wrong. I hope that by now you are feeling better.

How are you?

Please take care of yourself and get lots of rest.:hug:

Hi, Tyson, are you starting to feel better?

Abby

Hey all- Thanks for caring and wanting to know how I am doing. It really helps.

Annie- None of my doctors have suggested i have allergies or to take an allergy medicine..I would assume they would If they thought that. Or on the other hand, they may not have. No one is doing anything about the headaches, so ive had to move onto high doses of ibuprofen which is probably killing my liver, but i cant stand them.

I tried playing soccer the other day..just standing there it was 10 minutes then i could barely breathe. I stopped.

Desertflower- I can understand why you think i would be over medicated...yet I dont think i am. Im only on 12 pills a day, not including vitamins, which i dont take but should. Thanks for thinking of me, and ill take your thoughts into consideration.


Im not feeling any better with the sinus infection, and im getting very tired quickly again, probably do to the infection. Yet this morning when i got up, i coughed up so much blood. Not sure where that came from..yet it was there. In the mucas, it wasnt yellow, it was all red. and my nose is still so stuffy i cant breathe well out of it, and im just weak.

Ill be fine, but im just sick of all the opp. infections that come along with a weak immune system..

How are you all doing?

Hi, Tyson - so, just to state the obvious, coughing up blood is very bad and should be checked out.

As for the sinus infections, I get them all the time. Something you might try that's been a big help for me is saline nasal spray. You can get a cheap spray from Wal-Mart or Target, and it helps to keep the sinus passages from getting dried out (which it sounds like your sinuses are dried out) and also helps to clean out the sinuses and prevent full-blown sinus infections.

I don't know all the back-story on your situation, but it does sound like you need something different, and that what your doctors are (or aren't) doing isn't very helpful for you.

Jennifer

Coughing up blood, like Jenn said, is not normal. You absolutely have to go in, Tyson. Enough is enough. We can't help you, only doctors can.

And, again, neurologists aren't allergists (or vice versa) and neither are internists. Nope, I'm not one either but I do have allergies and have one of the best allergists around. It's not unlike when dogs have recurrent ear infections - chances are high that they have an allergy.

Blood is not supposed to be coming out of any orifice. It is one of those fluids that is supposed to be contained - unless you are a woman!!! ;) So go to the ER, bring the "evidence" if you have it and get some help.

Annie

Yeah, I was alarmed, too, when you said you were coughing up blood. That's not normal, even for a raging sinus infection.

I used to have what I thought were terrible sinus headaches--turned out they were migraines. I think sinus infections trigger migraines, for me, at least. And migraines alone can make your sinuses hurt. I mention this only because the new triptan drugs for migraines are terrific. Though of course I don't know how they interact with mg...

One more thing, Tyson. You can have a bleed from too much Ibuprofen while on Pred. And toxicity. Drugs are not benign, not even the over-the-counter ones. I hope you aren't drinking any alcohol with that drug either.

And I hope you have made your way to the ER by now.

Annie- the only hospital they will take me to is DUKE. and they wont do anything for me there. You know this. My aunt and uncle both saw the blood, i showed them, they were just like, you shouldnt be on accutane or whatever. And that was the end. Then i continued to cough.

I would love to know whats going on, but i just dont know how at the age of 17 as ive complained about before.

I have not gone to the ER, theres nothing for me to do, ive tried. Ive gone to the ER. They made me do a psyc consult because they think im lying about so many things. Theres honestly nothing I myself, can do.

I know you guys cant do anything but support me. Ive gone in, when youve told me to go in, theyve continually found nothing, so i cant do anything.
Im sorry if im making you mad, or dissapointing you, but honestly, what more can I do?

I texted my doctor, and all she said was to make an appointment with her and we will figure out what to do next.


Hope your feeling well.

Do you have a camera? Does it take videos? Then take a video of you coughing up blood. Take a video of anything else as "proof."

You aren't upsetting me, your family and doctors are. Maybe you need to ask them if they want to watch as damage is done to your body. Or ask if they think it's okay for you to die (not that you would!). It is their responsibility to take care of you. Legal, moral and ethical responsibility. Or ask them what they think their (Duke's) risk managers will say when they ignored someone with severe headaches who was coughing up blood.

Or ask them on what planet any of this is normal.

And you don't know for sure if Duke will say coughing up blood is normal. If they do, they should be fired. Call their ER and ask them what you should do. Have them speak to your aunt and uncle if they say you should go in. Ask to whom you are speaking with so you can tell the ER doctor who told you to go in. Document, track and make them accountable.

My brain can't handle any more of this . . . I can't imagine how you feel. I personally think you are having drug interaction #@!!. It's simply not funny.

Annie

Tyson,

ONLY twelve pills a day? How many different drugs? And no vitamins? Please talk to your doctor about vitamins, I do think some vitamins are necessary when you are taking Pred.

Coughing up blood is NOT normal! I know someone who coughed up blood for a few weeks and didn't get it taken care of...ended up in the hospital with pnemonia and lost one lung, almost died in the process. Coughing up blood needs to be looked at by a doctor and the cause needs to be determined. And with your severe headaches and chest pains on top of it, this is severe, something is wrong. If necessary, you should go to a new doctor, or at least make some phone calls to get other opinions. Is there any other doctors you can call for opinions? Or, like Annie said, call the ER to get their opinion. Make sure you list for them all the drugs you are taking. I wish I were more help, but I am not a doctor.

I am worried about you and wish you had someone else to help take care of you. Please take care of yourself.:hug:

Annie- Yes the next time it happens I will video tape it. Yet its only happened 1 time in the last week, so i dont feel as though it is a huge threat but I am not a doctor so i have no idea. I told my doctor, shes going to try to see me this week. Ive not had any bloody noses, yet am very weak.

I am doing an internship at Duke hospital this week and next, its wearing me out on the first day...but atleast ill be there if anything happens to me:)

I know you are frustrated with my doctors and guardians, as am I. I never want to complain to them because they think im lying. or making it up..

I never thought of calling the ER, good idea. Ill do that next time.

dont stroke out on me:)


Desertflower- Yes twelve. 4 different drugs for the time being, and ive recently added vitamin C,D, E, and calcium to my pill intake hoping itll help.

But thanks for all your sugguestions, its a help:)

Ive got raging headaches when i walk and get up off the couch, and ive taken 2200mgs of ibuprofen most every night because thats when they are the worse, i doubt thats helping me any...and chest pains are still there just not as often.


Hope your doing well.

Me stroke out? I'm not the one with daily headaches!

Sick Again
 

Tyson,
I hope you are feeling better and am very concerned about you coughing up blood like the others. I have to agree with what Annie and Dessert said....I truly think they have you overmedicated. I too was overmedicated and had the raging headaches you talk of, memory loss, depression, constant shaking in my hands and the Mestinon did little for my symptoms. I think my problems came from a combination of the high doses of prednisone and the cellcept. I KNOW the cellcept caused the headaches and shaking and my neuro is certain the pred was causing the depression and severe memory loss. I have been off of the cellcept for a good month and my pred is down to 15mg every other day and I can't tell you what a difference it has made Tyson. I feel more like myself than I have since I was started on the pred on Oct. 1. Like Dessert I am a firm believer in a combination of medication plus vitamins and a healthy diet. I see you have added Vit E, that is great. I am taking 2,000mg daily. There may be people who disagree with the high dose but it has been shown that high doses of Vit E naturally suppress the immune system. I can tell you that by the 4th day of doing this my eye stopped drooping. It occassionally happens now if I have not had enough sleep but that is rare.
As for your sinus infections, I used to get at least one a year that would take 2 or 3 rounds of antibiotics to clear up. My chirpractor recommended Neil Meds sinus rinse. It is a little bottle that you put purified water in and a saline packet that comes with it. I warm the water slightly and it feels so good. Not to be gross but when your sinuses are plugged you will be amazed at the stuff that comes out. I use it anytime I clean, work outside or feel like I am getting stopped up. Alot of people use them daily as a preventative. I would really recommend you give this a try. You can find it at any drug store.
I know you said you don't feel like you are overmedicated and maybe you're not but try to think back to the last time you felt clear headed and overall stable. If that was before a new med was added that may be a key. Then you can point out to the Dr that these symptoms started after the new med was added. When I was overmedicated I felt like I was living inside a bubble and the world was going on around. I was sooo out of it, it was scary. I was talking to my Hematologist yesterday and we were talking about how I was on the verge of prednisone phycosis ( I know that isn't spelled right) It was extremely scary!!! These medications can do alot to help with MG but they can also cause alot of problems and cause horrifying side effects. Please keep us posted on your progress.
Kendra

Kendra, I just didn't want Tyson reading your post and thinking he could do vitamin E. Sorry if this offends you. But Vit. E can make bleeding worse.

http://emedicine.medscape.com/article/126268-overview

http://www.mayoclinic.com/health/vit...SECTION=safety

The sinus stuff does really work well, Tyson. I still suspect you have either hidden allergies or drugs making things worse. I don't suppose they would let you consult with an allergist even.

Sick Again
 

Annie,
No offense taken. That is why I said some people may not agree. In my case it has worked wonders but may not work for everyone or may not be appropriate for everyone. I just wanted to let him know the results I've had in case they decide to change things around with his medications. I read that he is already taking Vit E just wasn't sure how much.

Tyson, I just read in my drug dictionnary that the intake of Ibuprofen has to be limited to 1200 mg/day and that one of the side effects could be bleeding...?
Maurice.

My niece has moved in with us while attending nursing school. I am reading one of her books -- a chapter on wound care. I just read a "blurb" that says that Vitamin A can counteract the effects of steroids (Prednisone). Accutane is a derivative of Vitamin A.

http://www.aocd.org/skin/dermatologi.../accutane.html

So, is it "possible" that in effect, since Tyson is taking BOTH Prednisone and Accutane -- his body isn't getting the benefits OF the Prednisone -- and THAT is why he is still having full blown MG symptoms??

BTW, I think he is having the bleeding problems because Accutane dries out the skin, nasal, sinus, and throat passages -- but, I am NOT a doctor and IF I am wrong, I would NEVER forgive myself.

Headaches are normal with Accutane -- I had a number of students who took it -- they all complained of headaches. Again, I am NOT a doc -- if I am wrong, I would NEVER forgive myself -- so, take my advice with a grain of salt.

This is the reason I am ALWAYS hesitant to post in Tyson's threads. I do NOT want to say or do anything that might make him risk his life. I do NOT have Annie's expertise or vast knowledge.

Thanks everyone for your ideas. I'll write more later as I'm in between surgies at the hospital (internship) I also have very bloodshot eyes, they look like I'm on Mary Jane if you catch my drift.
They are especially bad in the morning. Right now my nose is conpletly stuffy and I'm done taking the sulfa it is not working.


My skin is all red, everywhere I'm very flushed. I'm heading home after one more thing to sleep the day away:)