very quick question
 

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.

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.

:hug:
Annie

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?

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."

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

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!

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.

:hug:

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?

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

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.

Tyson, The simple fact is that doctors don't know everything. They are NOT Gods. They may not know about this information. Blindly trusting any doctor is dangerous. I'm not saying you shouldn't "trust" your doctors but not blindly.

At the very least, they should be doing these tests. CPK and vitamin A level.

Accutane can affect the telomere enzyme. Read more and you will know what I mean.

You keep saying you have these awful symptoms and yet you won't listen to anyone's advice. You are often on the verge of going to the ER. The chance of your symptoms not being either Accutane alone or in combo with the other drugs is almost zero.

A buildup of CPK won't necessarily show up on an ECG. You need to start to THINK about all this. HOW you think about medical issues is more important than the actual facts.

I think it's time for a 2nd opinion on the acne. Tyson, I know there are other treatments out there. And you need to know the CAUSE of this kind of acne.

I simply can't handle beating my head against a wall anymore. I fully support you but there isn't any more I can do on this topic. Sorry. I guess you will continue to think this is all okay until you have something worse happen to you. You are not invincible, like all young people think they are!!! ;)

Annie

Here, read these.

http://www.nlm.nih.gov/medlineplus/e...cle/000473.htm

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1125522/

I have to add one more thing. For doctors to BLINDLY ignore that a patient is having adverse reactions to a drug and then not do anything about it is unethical. Potentially worthy of malpractice. Yes, all drugs have side effects - which I'll bet that's what your doctors say - but patients who have significant side effects of a drug should not be on that drug. And they have not fully investigated to what extent exactly what effects those drugs are having on your body. This is the kind of situation that occurs over and over again in medicine and that is why so many people are injured or killed due to drugs.

It's "easy" for a doctor to proclaim that taking a drug is an "acceptable risk." They don't have to suffer with any of the consequences.

Annie- You always write back so quickly, i love it:) - I guess i agree, its not okay to trust a doctor with my life, which in all reality, i should be able to. But thats life.

I will call my internist and and ask her to do those tests.
I also have a neuro app. on monday, so ill print that out and give it to them.

Do you believe my symptoms? The way you wrote it seems as though you dont believe them, or me. Dont take that personally. I could have misread. Yes i know im on the verge of going to the ER alot. Yet im dont have anyone to TAKE me most of the time for the chest pains. My aunt and uncle only think it is necessary if i am going into a crisis. Its very hard to convince them.

Yet im hoping all it is, is the side affects. Could perphiral neuropathy (from that site you posted earlier, come into the picture? I often have pain all around my body. Not that often though.

Ill also consider a 2nd opinion.

Yet im sorry, that im causing you to beat your head off the wall. You as well as i want to know whats going on. But its hard for me to do all this at 17:).


But, thank you very much for all your help annie, and if you cant keep posting, its quite alright, i understand the stress;).


Hope you feel okay!

Eh, now my pulse is at 110 again, and having some chest pains when breathing in.
I know what your going to say, though.

Omg...I totally just typed, 'What's your Tyson like, Acne?' LOL...I had a moment...

Anyway, Tyson, how bad was your acne? Like all over-your-body bad?

I remember in highschool, there was a guy who had very severe acne...I felt really sorry for him...I could tell he was really embarassed about it...He'd always walk with his head down, poor guy...

Alright, so I must admit, if I had severe acne, I might consider taking this accutane...I'm pretty vain, I'll admit...BUT- I know me, and I'm also super cautious (well, other than my horrid smoking habit, but that's another story), and I'd look into other treatments that didn't have such deadly side-effects.

If I were 17, and I do remember what it's like, it was about 10-years ago, i might not look into the sides so much, so I'm pretty impressed that you're here...That shows that you want to hear about other people's experiences....Very mature, if I can say so...

Anyway, I went off-topic a bit...What if prednisone could take care of your acne? Do you know what happened when I first started prednisone? Absolutely no joint pain, no more rash on my arms, my face seemed less red (blotchy)...These effects persist until today...I got a mild touch of what I thought was acne, but actually turned out to be a skin infection as it cleared up after antibiotics...So I feel like prednisone could work for acne too...

My point is that this medication is just awful...When I was reading those blogs, people were talking about how their dermatologsts were very nervous and resistant toward prescribing this med... Some refused despite their begging...My sister's friend had a bit of acne on her chin which she was obsessive about...She begged her doctor to prescribe this, and he would not.

I can see that you don't want off it. I know you're scared about the acne returning, which is completely understandable. I just really don't like this medicine, that's all...And the things you've mentioned over the months sound really scary, and I have to admit that some of your posts scare me. The nose/mouth bleeds, the racing pulse and not being able to breathe...I mean, I can't say unequivically that this is from Accutane, but because this medicine is so toxic, and lists the very sx as sides that you've mentioned, and causes muscle damage, I can't help but feel that by at least getting it outta the picture, worries about it causing your problems can be put aside. This medicine just complicates the situation when it seems unecessary/not worth it, at least in the context of what it's treating.

Anyway, I will stop bringing it up. I at least want to get this out there in case it helps you in any way. I wish there was a medicine that treated acne without the high price because I know it'd be a rough ride to have MG plus a problem that might be disfiguring.

Nicky

Oh, Tyson, OF COURSE I believe YOU. That's plain silly.

What I don't believe is how doctors are taking all this so lightly. You're taking it a little lightly too. I've seen too much in all these years and know how bad situations can get when the obvious is ignored. I don't want that to happen to you.

No, it's not that I won't keep posting. It's just that I can't keep saying the same thing over and over. You have to start taking control of this situation and take it seriously.

If you do have a high CPK from the Accutane, it will hurt your muscles. My Aunt had polymyositis, which causes an increase in CPK. Anything not normal is, well, not normal.

My point about side effects, which maybe I wasn't clear about, is that you are have moderate to severe side effects. That in and of itself is enough to stop a drug. Doctors talk about side effects as if they are benign. They aren't. Some are, sure, but yours are nothing to take mildly. They are causing a high pulse, bleeding, increased weakness, chest pain . . . lots of things.

Don't be unduly upset by this information but do take it seriously. Calmly tell your doctors that your symptoms are not normal, that they are concerning you, that you have new information and that you both need and want answers.

Your aunt and uncle must understand that it isn't only a crisis that can happen to you, right? Sometimes people simply can't handle medical issues.

Sometimes it's absolutely necessary to get a 2nd opinion. Not all specialists are created equally. They don't all have the same magical base of knowledge. Some know more than others. And some are willing to actually keep researching for their patients!

Trust your instincts. Do what you have to do to stay well.

:hug:
Annie

And maybe they should have checked your testosterone levels, before the acne treatment. http://acne.about.com/od/acnetriggers/a/hormones.htm

Nicky- My acne isnt horrible i suppose. Its mainly just VERY red. and gets very irritable. But i guess id rather have that than my DNA altered..But my acne hasnt even cleared up yet, so maybe its not going to work. But Pred. will not work for my acne, it actualy makes mine worse. Im getting off, and its going away a little more.

thanks;)


Annie- Okay, glad u believe me. Im really tired tonight, and dont feel good, so i dont think im going to respond to this whole thing. Yet I get what you mean about all of this, and plan to talk to my DR. about all the symptoms, etc, and ask for that blood test.

goodnight,.

Flax oil taken by mouth cleared my son's acne right up. Another valuable tool is zinc supplements. (zinc is often low in teen males since it is used alot in the reproductive system). My son's acne was mostly on his back and chest-- which is far more common in males. But he'd have some small zits on his face now and then.

Prednisone creates a "cushingoid" metabolism in the body. And often CAUSES acne as a side effect. Patients with real cushing's syndrome typically have acne all the time. Cushing's is a disease of the adrenal glands and/or pituitary, which raises cortisol in the blood.

Accutane was developed for SEVERE polycystic acne patients. But doctors today prescribe it even for mild forms, which is a foolish risky thing to do IMO.