[tysondouglass]

Whenever i walk, or even sit up from laying down, i get a HORRIBLE headache and get out of breath, and im just wondering if any of you have this, or if it is from pred? Or what you possibly think it is.


Im quite weak aswell.

[AnnieB3]

Are you drinking enough water?

You know darn well this is not normal. Are you looking for someone to say it's okay or for someone to say go the heck in to the ER? Okay . . . "Go the heck to the ER."

You have a BP cuff, right? Can you take your BP after lying down for a couple minutes. Then stand up slowly. After about 30 - 40 seconds, take it again. Does the systolic go up or down or stay about the same? If it goes up 20 or more, you may be overhydrated. If it goes down 20 or more, you may be dehydrated. I say "may be" because it's not a perfect test of hydration. Serum and urine osmolality give a far better idea of what is going on.

This is sort of gross but here goes anyway. If your urine is highly concentrated, chances are you are dehydrated. If your urine is on the light end of yellow, then you may be overhydrated.

Have you ever had a chest CT with contrast (iodine)? I still worry about a pulmonary issue, a clot or an artery problem. None of what you are describing is normal. And you HAVE TO go in while it is going on. Otherwise doctors can't "see" what is going on. Do you understand that? I hate when you wait. Seriously do.

You know how I feel. I can't say strongly enough that I worry about your health picture in it's entirety. Is Accutane worth having a stroke or heart attack, especially when there are so many alternatives on the market? If these symptoms are from a drug or drugs or side effects or combo of drugs, then doctors need to reassess the efficacy of the drug. And the common sense of using it.

I know how hard it is to be 17 and have no one to turn to really. But in a situation like this, you need to turn to the ER or your doctors. I'm frustrated because I can't do a damn thing to help you. Get help.


Annie

[tysondouglass]

I am drinking alot of water, i made sure of it. So i dont think it is that.

Annie- I would much rather be in the ER right now. Yet, my aunt and uncle think its just a headache, and i cant go alone because im only 17. I dont know what to do. They think its all in my head sometimes, and that kinda hurts. But im so weak right now, i dont know whats going on, both eyes droopy, right arm horribly weak, neck and head is bad, and coming up the stairs, pulse sky rockets yet again and its hard to breathe when getting up the stairs...my neuro said to wait and see him on monday.

I dont have a bp cuff. I really do need to get one, yet again my aunt and uncle dont think its nessecary, and i dont want to buy it..


I understand they cant tell whats going on for the most part if its not happening when i go in, but i dont have a system where i can just go in. My aunt has four kids, and a husband whos not here alot, and so its hard for me to just be like, I NEED to go to the ER. They always ask why, etc. But by now, I KNOW MY OWN BODY! So i know i should go in, but right now i dont have the resources, and i guess it takes me going into a crisis for them to realize that.
.

I know u dont like the accutane, but its supposdely, 'not hurting me' says the dermatologist. I guess i trust him.

I just want to know why my MG is so bad right now. I JUST had plex.

But, my breathing is shallow, and i have school in the morning, so i guess i should try to rest so that I may be able to go to school tomorrow.

Sorry i frustrated you. I dont mean to do that, i know my health is important, i just need an advocate, and i wish i had a mom to be that, but right now ive got myself, and wish i could be in the er.
But im going to sleep instead.


How are you?

[AnnieB3]

There's a little something called minor emancipation. If there was ever a need for it, you're it.

http://www.ncga.state.nc.us/EnactedL...rticle_35.html

No offense meant to your aunt and uncle but their attitude is basically threatening your life. There's nothing they can do if you dial 911. NOTHING. Because the police show up too. If you honestly believe this is a situation where your life "feels" threatened, then you need to get medical help.

It's possible your MG is being overmedicated but I doubt it. You get worse the more you do. Has anyone checked your thyroid lately?!!!!

This may be personal but when do you turn 18?

I think your aunt and uncle are being selfish. Again, the ER doctors have ALWAYS told me that it's far better to go in and have it be nothing than to be hurt or dead.

Only you can make that figurative and literal "call."

Don't worry about me - I'm fine. I've had this disease a lot longer and can at least cope with it. I seriously think there is something going on that could harm you. It doesn't really matter if it's the drugs or what, you are having moderate to severe symptoms.

Can you call the ER and get an opinion? Maybe put them on SPEAKER, if you have that option, and let your aunt and uncle listen in.

Do you have a nurse at school? There has to be a way to get around this adult supervision nonsense when you know your own body and need help.

Let us know how you're doing.

Annie

PS - I'd like to shove a few studies onto the desk of your dermatologist. Maybe Accutane by itself in a person without a disease and not on any other drugs is "ok" but not in your situation, and especially not with "thick blood."

[Nicknerd]

Tyson,

I just looked up the side-effects of Accutane, and a message board or two about it...It seems that a lot of the problems you've been having are listed as side-effects of this medication...

I even came across a person who mentioned having 'trouble speaking' during class since he started taking it....

Turns out this causes muscle weakness...Not sure if you're aware of that or not because I wasn't...

It apparently can cause direct damage to the muscles, and CK levels will start to increase (this shows damage to muscles)....It also causes nose bleeds, rectal bleeding, and mentions slurred speech (i guess this is part of the muscle weakness of the tongue maybe?)...

I know that prednisone is used for severe acne...The minimum dosage is 30mgs...You started the accutane before prednisone, right?

I'm not sure how this medication works...Do you have to taper off of it, or can yuo just go right off?

I know taht looks are important..Believe me, a big part of the reason why I'm getting off pred. is vanity, so I understand....But this medication seems really toxic..Is there really any point in taking it, especially when prednisone might accomplish the job itself? Also, if it's causing a lot of sx for you as side-effects, maybe it's better to get off it? Sorry, I've never had severe acne...I had a bit before and was troubled by it, so I don't know exactly how you feel...It just doesn't seem worth it to me....There are the really necessary meds., and the ones taht are too toxic to be worth it- they do more harm than good...

Nicky

[Twinkletoes]

Hi Tyson!

I'm not a Dr. but I do watch a lot of those Mystery Diagnosis-type programs.

One of them had a lady with headache sx like yours. She also had a taste of metal in her mouth. Turns out she had a leak of her spinal fluid.

Whatever it is, I hope its easily fix-able. Best wishes to you!

[DesertFlower]

Tyson,

I am worried about you.

I think Nicky has a good point about the Accutane, I think you should stop taking it. At least look up the side effects and talk to your doctor about it. This drug has some serious side effects.

Take care of yourself and don't be afraid to go to the ER or call 911 if you need to.

[AnnieB3]

We cited a bunch of stuff before about Accutane, Mrs. D too. Good find, Nicky. It's like it doesn't sink in or something. Accutane can't be stopped abruptly without a doc's ok though. I was on it decades ago, so I personally know about the crap.

No drug is benign.

http://www.ncbi.nlm.nih.gov/pubmed/9747221

http://www.ncbi.nlm.nih.gov/pubmed/18377609

Have they checked your CPK levels?

[AnnieB3]

Tyson, I hope you are doing okay.

I think I know why you are in such pain. It IS the Accutane/Isotretinoin, I would bet on it.

This first article states very clearly that people with neuromuscular disease should NOT take it.

http://www.ncbi.nlm.nih.gov/pubmed/20000864

And while I hate to cite anything from wikipedia, here it talks about what Accutane does to your telomeres. They are so important and Accutane does affect them.

http://en.wikipedia.org/wiki/Isotretinoin

If I were you, I would send that first article to your neurologist, dermatologist and internist. I would get the heck off of that drug and find an alternative to acne. There are reports to the FDA that there has been irreversible muscle damage done due to this drug.

Has anyone even tested your serum Vitamin A levels to see if you have a toxicity of it?

And they SHOULD be testing your CPK, as Nicky so thoughtfully pointed out.

And what if your headaches are intracranial hypertension?!!! I think you should NOT exercise until you have this figured out!!!

Some common sense needs to prevail here. Your HEART is a muscle too, you know. MG may not directly affect it but Accutane can.

PLEASE take this seriously. Damage may already be occurring to your DNA and your muscles.

I hope you will do a search on causes/alternative treatments to acne. Please take it easy.

Annie

[tysondouglass]

Nick nerd- Ive struggled with acne for so long, and the doctors are saying this is the only thing thats going to get rid of it, and its 'not' taking any harm on my body...so im going with their say, as i trust them as my doctors..

If they said to stop, i certainly would. I know its not a good drug, and has many warning labels, i want to stay on it until they say no. thanks tho



Twinkletoes and desert flower- I know, i know, there are soo many side affects to this med, but my doctor says its not doing anything harmful to me, as to be seen, yet on the inside..maybe. IM going to have them run more tests to see if it is.


Annie- Im okay. Still quite tried, and getting alot of headaches.
Why would my MG expert say i could take it then? I dont get it...I will send it to them, though.

Will you give me a list of things i should have tested from a blood sample? Ive wanted to get some done, because they arent suggesting any, but im not aware of which ones go with the meds which could be messing me up..

How do you mean that my DNA and muscles can be getting damaged?



I continue to send in my EKGs over the phone through my loop monitor, but nothing shows;(.

Hope your doing well.