poppetkazutaka

Hi All-

Quick question. Mack, my 17 y/o son, has been doing poorly the last few days. he's been extremely fatigued, head-achey, exhausted. He came home from school with huge dark red spots over both cheeks begging for ice packs. He's being treated for MCAD (partially because of the extreme flushing which has been well controlled on the MCAD regimen.) I gave him his H-1 and H-2 early. He's sleeping now, but had little or no relief from the meds. We may not have given it enough time...

Any other ideas? He's been stressed lately-feeling very out-of-control with backed up school work.

Thanks in advance for your ideas-

Julie

I was doing that when I got my sinuses infected and inflammed shut. Can he breathe through his nose okay? Anti-inflammitories help at all?

I was getting used to everything and trying not to talk about it. I was not researching anymore. I was focusing on my book and I was ignoring my health to the extent that I could. I would take care of myself, obviously, and go to the doctor when I got sick, but past that I wasn't chasing after a cure I knew there wouldn't be. I've been fine and I've been going out and being normal.

It's been warming up. I had to buy a hat because after five minutes of sun exposure I got burned on my scalp and face. That's never happened before. I do burn easily, usually in fifteen to and hour, but from one block to the next is unreal.

But now, covered up in a top and hat, I have noticed a new symptom. I thought at first it was because I hadn't been eating but yesterday I made sure to eat. I ate very well because it was a day in which we had catering at work. I was up on my feet for a few hours working, but I didn't feel tired. I went for my lunch walk and the tingles began. So I thought it was because it was a cold day and it was cold outside. But they got worse everytime I was up and walking.

They're still here today.

I have them in my fingers, feet, and face\head(halo). They're extending inward as I get more activity and slow as I stay resting. It doesn't matter what I eat. It doesn't matter what I do. It doesn't matter what stress level I'm at.

If I take anti inflamitories they seem to help, but only a little. My sig shows my current meds and I was at the doctor today and my bp was 117/72 it was not elevated.

What the **** is this? MS? Part of the autoimmune that I'm just going to (AGAIN) have to get used to?

I don't have a gallbladder, and my thyroid levels were checked last month.

Not having a gallbladder will cause some constipation. Of course, since I don't have one, and I know I can't digest fat or sugar, I just eat that and it causes me to go!

Sounds like my dad when he told me, "I'm not saying you're making it up, I'm saying your reading this information on the internet and then you're feeling the symptoms as if you really had them."

"That would be BECAUSE I really have them and THEN I look them up."

Have you had your thyroid and gallbladder checked?

I have issues with my bowels as well. I find lots of water, salt water, and burdock root when all else false helps. :3

im going to be tested im in the process of getting a new state health insurance and a doctor to actually start searching for a cause.

my first post was just in reference to myself having alot of mental stress due to not knowing what it my be yet(if ever) and i assume the worst.

i appreciate the advice. i didnt mean to whine its just easier to type out how im feeling and to have someone understand.

I've been suffering under this for six years, and many of the others here have been suffering for longer. It's a long term thing, and if there's one thing I've learned it's that getting upset about it isn't going to help. You have to just...keep trying. Be persistent, but not crazy. Laugh about it. Smile about it. Joke about it. Find something you enjoy and focus on that. Find religion if you don't already have it, because God can help a lot. He gives perspective of suffering. It's important then.

Stressing makes it worse. So just let it go. It isn't going to cure itself and it isn't going to get better by worrying about it. Do some research, but not a lot. Never think you've found the answer, because that's what doctors are for. Remember that doctors are practicing medicine, so they too are failable. Remember that this life is temporary, so each day counts as its own and you shouldn't worry about the next.

Just live and learn and breathe and laugh.

:3

My son has had bouts of anxiousness for years but we didn't know that he had POTS - just a general worrier over both good and bad events. He has gotten counseling which helped so we didn't medicate.

The new issue is that he startles very easily so at night he will hear a noise that the house makes or that the dogs make and it startles him either waking him up or if he is a little bit awake from insomnia and then he can't go back to sleep for several hours sometimes. Once he gets that shot of adrenalin he can't go back to sleep - the doctor says that he has too much adrenalin to begin with so it's worse.

I spoke to his cardio about it and he said that we could consider an SSRI but I think that is a bit extreme because he has no depression of any kind.He is very upbeat and perky most days - at least by mid day. I think that an anxiety med like ativan or xanax only when he needs it would be better. My thought is to leave a pill on his night stand that he can take if he has one of these moments. He has this problem about 1 or 2 times/week - the other nights he sleeps really well.

My concern is that he could become dependant on it or that he might get a 'high" from it and want to duplicate it regularly - I worry. But he needs something and SSRI's scare me with teens but so do benzos and narcotics etc. (I work on an ambulance-I've seen it all). Maybe I need some too-LOL. Even though he is adult size - 5"11.7 and 218lbs. he still has the unstable hormones and such that seem to interact with SSRI's.

What do you all think from personal experience? Have you tried xanax,clonopin,ativan etc. and how did it make you feel?

( I tried to teach him meditation but at 13 he wasn't very receptive/good at it - he said it was boring.)

Thank you again. I haven't told you all lately how awesome you are and how much comfort, knowledge, and piece of mind you give me through this support group. I feel very supported!! Thank You a Million times!!!

Serena

I take labetalol and it blocks adrenalin, so when things happen I'm just "...". It keeps me REALLY mellow though, so I don't know how low you would want to start out. I have anxiety problems and manic depression runs in my family with more manic than depression. I would go days with my heart racing and me bouncing around wanting to do things, talking rapidly, and not being able to focus. I was frustrated and irritable, and biting at people who annoyed me. So the Topiramate and the Labetalol helps me. Around my period I still get a little edgy though, and the BC helps with that.

So some medicine would help. I do still -when I over work myself- get adrenalin surges, but I can feel them coming. My head and chest hurt and my mouth gets a funny taste. That acid taste you get when something frightens you? That's what it tastes like. Then I have to lie down, put my knees up to my chest, clear my head and breathe. Don't think about anything or you will freak out on it. Just think of nothing. And you'll slur if you talk because you're having an adrenalin surge (not a panic attack, because it's not emotional, it's physical).

Does that help?

I find that bp cuffs always hurt and leave a mark. It's just something I have to get used to, especially when you're hooked up for monitoring and it takes for every three minutes.

[shrugs] There's a lot of pain you'll get used to after six years. XD

I can see music and I attribute personalities to numbers. :3 I don't like 5 much. I like even numbers more than odd numbers. They're nicer, and that's usually why I round when I pay bills. When I listen to music, I see colors and I sometimes get so into it I have to be careful because I can really lose myself! XD It's why I like all kinds of music except for a lot of hard metal music, because the colors aren't right.

Some of it is okay...

But yeah. I'm slightly that way myself. I think it's higher brain function. I can also look at something and I feel how it feels on my palm. I see feeling, because I know how it feels so I translate sight as touch.

It's just that the senses are so closely wired that they overlap. Sight and hearing, sight and feeling...etc...

EDIT: I forgot about the map thing. I do that, too. XD

Last night i had something really weird happen to me. I was going to bed and turn bed my lamp off and i felt like i was blind in one eye. My right eye could 'see' in my dark room (as there was a bit of moonlight coming through my window) but my left eye was not registering.

When covering my right eye all i could see with my left was darkness and just a tiny bit of moonlight.

i put my lamp back on and compared the differences and both eyes were fine. i then got up and went to check out the pupils in the mirror but they were the same size.

i wen back to bed and turned my lamp off and the left was still giving me a darker picture but not as bad and eventually it came good.

it was really weird....i'm just wondering if this has happened to anyone else and does anyone know what kind of things cause it....is it a pupil thing?

thanks x

I've noticed that for a few seconds when I turn off the light I go 'blind' and I can't register. I panic, my body freaks out and I tend to fall down even if I 'm standing still. So I have to grab something first or be sitting if I'm going to turn out a light. I don't know why this is, but it has been going on since I started the labetalol maybe?

Well, I have sensitive teeth because my gums are receeding so I have to use sensitive toothpaste. XD But what I don't understand are the commercial for growing eyelashes.

Thicker, fuller, more beautiful eyelashes.

W. T. F.

Now I could understand this on a medical perspective if you were injured or had hair problems but seriously the way they present it, is like if you're tired of using mascara.

If that's all you have to worry about?

Someone hit you with a chair.

The only other thing she had to add was that I might form Hashimoto's Thyroiditis since my peroxidiase is at 166, but that it wasn't preventative. She said treatment was symptomatic...but gave me no medicine for any of my symptoms. There's only one other rhum here and he's in the same building. So I think I'm just going to have to wait. Get my book edited and published. Once that's done, I don't care what happens to me.

My dad yelled at me last night and said it's my own fault I'm sick. That it's because I look things up and I'm psychosomatic. Thanks Dad.

"We see some inflammation, it's definately autoimmune, but there's nothing we can do at this point. We need to wait until it shows more symptoms and has done a little more damage before we can act and right now treatment is symptomatic."

Translation: "We're going to wait until you've lost another organ or until you're admited to the hospital until we do something."

I'm done. She wouldn't talk about Lupus or anything else. She said that it would develop into something but she couldn't say what, and that 'oh, the positive reading for Lupus wasn't Lupus, it was just for inflammation'.

Funny, the National Lupus Foundation says different when corolated with the other results and the symptoms I have?

She changed the subject on me and then when I asked again suggested I get a biopsy of my sinus tissue in the future.

I'm done. Until I lose something else...I'm done.

Mary P, if you reread my message, I am not giving Poppet a prognosis at all. I know nothing about her other than she thinks she may have lupus. My only advice is to see a doc about it and hopefully to get treated quickly IF that is what she has. Again, I did not do it to scare her and I apologize if she was scared but I am not diagnosing or giving a prognosis. Just giving a tale of experience.

Poppet - glad you are seeing the doc next week - hopefully he/she can figure out what exactly is going on and get you on the right path.

I'm a little worried though, and plan to ask the doctor but...

Since I work in a call center, if I seek treatment and have to be put on long term immunosuppressants...does that mean I have to quit my job? Because this place is a germ factory!

Lupus certainly can be life threatening. I hope they figure this out and get you on treatment asap. I have a friend who has lupus and even though they caught it and treated her it had affected her kidneys before they were able to start treatment. She had decreased function of the kidneys for years and then one day last year they just completely failed. She had to go on dialysis and eventually was able to get a kidney transplant.

I do not want to scare you, it's just that if you do have lupus it is indeed very serious and you need to be treated quickly. When do you see the doctor again?

I know, I've been reading and I'm trying not to think about it. I've been telling them for years it was something autoimmune and for the past six months I've been saying "my body is eating itself" and "I think I'm running out of time". But everyone thought I was nuts.

I've always -ever since I was a child- said I was going to die early. Lately I've said I've got until I'm 32. I hope I'm wrong but it's a plan at least!

I see the doctor next Wednesday @ 10:30

Yea!!! When I saw your picture with that rash on your face. I said to myself that looks like the classic lupus butterfly rash. I'm up on lupus/mixed connective tissue because that was the first thing they tried to diagnosis me with 20 years ago, I had a positive ANA at the time, for years. Most of the lupus panel was negative though. So I didn't quite fit. I have also had elevated CRP's.

Really research the treatment plans, I'm sure they are better options now then, I had back then. Be careful of the steriods, prednisone, dexamethasone. They gave me that and planquenil. The steriods ended up giving me drug induced cushings syndrome. I blew up like a balloon, stopped menstruating. Whether those steriods caused my Polycystic ovarian syndrome/metabolic syndrome, High Insulin. I'll never no for sure, but at the very least it was like putting gasoline on a fire and caused me to become infertile. No Kids, biggest heart break of my life.

Make sure that they test your insulin levels and other endocrine hormones before they put you on that stuff, because at least then you have a baseline and if you go up from there you know it's the med's.

Hope my bad experience helps you get better treatment options.

But, amen I'm glad you finally know. Knowing what's wrong is half the battle to getting well. At least they know how to treat this one, though I don't think it is curable yet. Good luck with it all.

I know when I was really bad sick with the last bout of sinus infection they gave me some prednisone and it made me feel better. Best week of the past six years that I could remember! I'm already not planning on children because of the PCOS, and some things I read on the Lupus page regarding the high likelyhood of miscarrage with Lupus patients. I had already written off being able to get pregnant because I have a bum ovary, so the possibility that I can't hold the kid kinda makes it worse.

Good thing I'm not interested in getting a guy involved in all this mess either! :3

I'm just hoping that all the kidney problems I've been having doesn't mean it's moved there. From what I've been reading it's a bad sign? Like...it means that the Lupus is attacking the kidneys and that can be life threatening?

I think that is good! Had they not tested you for Lupus before?

Do you have POTS on top of Lupus...or did you test positive for POTS previously?

Was your onset after a virus?

Just curious!!

Erika

I had never really been tested before, because the general doctor I had that said she was testing things and may have been falsefying my blood test results. I was diagnosed as 'borderline autonomic dysfunction' by Dr Zia, and self-diagnosed as possible POTS due to all the symptoms.

I started having problems after a car accident, and it always got worse after I had bouts of chronic infection, which is normal for me when I'm sick. I was always sickly, ever since I was a child, and it's hard for me to get rid of things because I'm stubborn for one and go to the doctor only when I can't stand it anymore, and for two, the normal antibiotics just don't clear things.

So for six years I've had worsening symptoms, the worst of which started after a viral infection in June-July 09, that caused a sinus infection that wouldn't clear. Then my gallbladder failed, my sinuses swelled shut, and after seven months and two surgeries I seemed to be okay with the exception of an extreme flare of this 'whatever-possible-Lupus-thing' I'm being affected by that's causing me to be in twice as much pain and the feeling of swelling without the symptoms, tingling\numbness in fingers and toes, flushing in the cheeks\nose, loss of appetite and thirst, sore throat, and exhaustion.

Whew... XD

So I called and the reason they were having problems?

They have Nielsen spelled Neilson. But I'm used to having flubs with my last name, so I was too nervous to care.

She read them off quickly and here they are...

Reflex something...negative...

Rhumatoid Factor...negative...

Lupus should be 180, is 203...positive...

C-Reactive Proteins...very high here...she said something about a "one point one something" but she was going very fast and from what I can see 1.1 isn't high so I don't think that was what she was saying?

Sed Rate is marked as high as well.

She's going to go over all this with you...do you want to move your appointment up?

Of course I said yes and mentioned my fingers and toes going tingly numb and the pain getting worse. I'm so freaking excited. Most people would be sad but I AM SHOWING stuff. OMG. I am so happy I danced once I was off the phone and was going, "They found stuff, they found stuff!" I even emailed my friend at work and was all, "YES!!!!!"

I'm not sure what it all means. Possibly that something is breaking down to set off a reaction to cause inflammation and going into my blood stream?

My appointment is next Wednesday at 10:30. I just hope I'm getting closer to a true diagnosis. This road has been so long and confusing.

So...since the pain has gotten worse and the problems are increasing, I've been dealing with it, but now numbness and tingling are added to the mix and in my big toe and middle fingertip on the left side, I have tingling to the point that I can't feel but I can still move them.

What is that? Is this a POTS thing or something to be more concerned about?

Last night the pain got so bad. I notice when I have attacks of pain it moves in from the tips of fingers and toes and head inward. It got to my neck, elbows, and knees, and radiated from my spine and then I couldn't take it any more. I felt like I was spliting out of my body or was too pressurized. So I took a hydrocodone and that helped with the pain but not the pressure. My veins were bright blue and pulsing at the skin. It was really weird.

Is this more of a nerve thing or what?

Also, still waiting on the Dr Pansuria blood tests. I called Thursday because the insurance co had paid for them and I left a message wanting an update and no one has called me back to let me know when they'll be done. It's been almost two weeks for the '1-2 day' blood tests. I'm not liking this doctor and she's had ample time to get them read, and most of them were completed two Thursdays ago.

From what I have read...the PANCA and CANCA can be negative and you can still have Wegeners...

I was convinced that I had it as my chest hurt so bad and couldn't breathe and my nose was running...and I got it after a sinus infection. But alas...it is only POTS.which I am truely grateful of.

Why does he think it is Wegeners? There is a support site you can runyour blood work by...my red blood count was getting low or high can't remember...but it was really from just being so sick with POTS before beta blockers and mega amounts of rest.

Feel free to PM me...I went down this road for myself.

Erika

He thought it was because I have a suddenly perforated septum, constant nosebleeds, pain all over, and a body making masses of scar tissue over my organs I guess that could be considered nodules of some sort? I haven't seen the tissue, they just tell me its 'scar tissue'. And I had had a sinus infection for over six months that wouldn't resolve. My kidneys had begun to get affected as well.

But I guess that's not it.

When I tried Miralax, back before the constipation turned into the other direction, I had to keep increasing caps. I was up to two and a half caps before I said "done" and I moved onto the blue box stuff, with the yellow gel cap? I can't ever remember the name...but that stuff was horrible. I had to take two of the highest dose to get it to work and THAT would make me feel like my whole body was being juiced just so I could go to the bathroom! I said NO MORE and looked for a natural laxitive.

BURDOCK ROOT. That is the best stuff. If I find there's a week gone by and I haven't gone (which hasn't been for a while since I have had my last surgery) I drink two cups of super hot tea, gulp it down real fast. The trick with this is it isn't a laxitive, it makes your intestines secrete goo to loosen the stool, not soften it. So it helps it come out, not turn it into water. So it doesn't take your water out to make you dehydrated. It also comes in pill form for a daily use. It was so gentle...

Don't give up. Just have hope they'll find something so at least you know (and possibly can treat it).

Right now my Rheum is trying to narrow down what I have. Have you had a positive ANA test? I'm being looked at for Lupus and Sjogren's Syndrome (which can cause dry mouth/eyes and you have dry eyes it sounds like)?

Do you have a follow-up with your Rheum to go through the results and see what's next? How controlled is your POTS right now?

I wish you well and hope they figure out what is going on...but it's not always easy!

Last time I had an ANA was about three years ago and it was false. My gen doctor at the time, the woman idiot who said a lot of my heart and head problems were stress caused by my mom's attempt at suicide though I had never told her about it (she treats my mom, too and had no right to cross our histories like that) said I was just going to have to suck it up and deal with the pain.

EDIT: Of course, now that I think about it, I got some blood tests back in my history from her and found one from waaay back when I was first seeing her and it showed I had a borderline low red cell count and she never told me about that. So she could have been lying about that, too.

I'm glad you don't have it, though! That's something I hope I don't have and wouldn't wish on anyone. So try to rejoice in that you don't have something very hard to deal with.

I know you want answers, as we all do, but if they can rule out something like this, that's good news!

(I believe you are referring to:)

"Wegener's granulomatosis is a form of vasculitis that affects the lungs, kidneys and other organs. Due to its end-organ damage, it can be a serious disease that requires long-term immunosuppression."

Yeah, but think about it, if we're both so sure I have it...then I'm definately presenting symptoms of it. So if I don't have it, I'm still suffering from something similar to it.

I just don't know anymore if it's worth it.

Apparently my ENT works on Sundays, because while I was torturing myself with sewing then, he calls to deliver the news of negativity. He seemed a little disappointed, as did I, because we were so sure that it was Wergener's. I tried to have a good cry after the phone call, only to find I can't produce but two tears. My nose, however, poured out rivers.

I got a good laugh out of the irony of that, and decided to go with the six page packet of junk that the rhumatologist made me fill out to see her on Tuesday. Then that was it. Because obviously after six years and that many doctors and tests, if they haven't found anything with a name yet, and I'm slowly turning into a ball of scarring tissue...really...what are they going to find? I give her a visit. That's it.

I can't keep playing the hope roller coaster anymore. They aren't going to find anything.

BTW, how does POTS fit in with vasculitis?

If you follow the wiki-spiral...

Vasculitis can cause neurological symptoms such as mononeuritis multiplex, headache (I suffer from debilitating migraines without medicine), stroke, tinnitus, reduced visual acuity, acute visual loss.

Mononeuritis multiplex is peripheral neuropathy, which is the term for damage to nerves of the peripheral nervous system, and may be caused either by diseases of the nerve or from the side-effects of systemic illness.

http://en.wikipedia.org/wiki/Mononeuritis_...ns_and_symptoms

There is also pain in the muscles (myalgia), cramps, etc., and there may also be autonomic dysfunction.

So technically, the diagnosis of 'bordeline autonomic dysfunction' would have been a sideline to the real problem, if I have some form of vasculitis and that's what caused it. I often have days where I would say, "I feel like my brain is on fire" and I wouldn't be suprised if I have inflammation in the brain, and the blood vessels there have caused scar tissue to form. Because of the difficulty of getting that to show up on scans they wouldn't have seen it.

Basically, it's a chicken and the egg thing. If I test positive for vasculitis, I got the POTS from that.