I Need Help!!!

[houswoea]

Hi friends!

It wouldn't be the first time you've helped me!

I'm trying really hard to think of anything that I could possibly be tested for before they send me away. again. like everyone else.

Basically, I'm being evaluated at the Mayo Clinic in Rochester by a neurologist. He is very sweet. Yesterday I went in to see him to follow up on my last two days of appointments and he said that he "gives up" and they can't figure it out.

The reason I wanted to go there was not really because of POTS stuff in my life, which is pretty clear, like fatigue and fast heart rate when standing or doing anything and passing out and headaches and all that just everyday. If it was just that I would buy the take a different beta blocker keep doing the salt/water/bed raising/compression stocking typical treatment and pray it gets better. But it's not, and I don't know what to do now...

The problem that I wanted to address is these weird things that keep happening. I was wondering if you would help me think of ideas so I can help him help me. It was my impression that he would so these things if I asked him to. He was a very nice doctor. He even told me that just because he didn't know didn't mean I was crazy! But I don't know anything about medical stuff and I know you guys know. Will you help me brainstorm?

Okay, these are the problems I want to clear up- sometimes (about six times in this year so far) I have these strange attacks. I have ridiculous chest pain so I wait for it to go away (sometimes it does) but then I get a headache like an aneurysm and I lay there in pain until for some reason I get really confused and I don't know what's going on, but then I get all sweaty and gross and I can't tell anyone what's wrong except that (I'm tired and my head hurts and my heart hurts. So naturally, this scares anyone who is with me and they take me to the ER and by then I'm usually just tired and I am aware, but I get really dizzy still when I walk and I always set off the tachycardia alarm on the heart monitor. Then they tell me I'm insane and to go to a psychologist.

So I did! And she agreed with me that it wasn't mental and I also went to a counselor who said the same thing. My roommate won't live with me anymore because she's scared to come back to our room and find that I'm dead. I'm scared of that too. But really, what can I do? At some point, something must be wrong and I want help, but now I just cry by myself until I am unconscious because I don't know how to manage it. Even at night I get terrible tachycardia and all these problems occur when I'm already laying down.

Some other things that really bother me is that I used to weigh 130 and now I weigh 105. None of my clothes fit and it drives me crazy! I have my period almost as much as I don't, even though I'm using the same birth control that has worked for five years! It just stopped being able to control my menstrual cycle and I get it all the time, with no pattern or order. I bruise like crazy ever since this started too.

So far, I had a head guy say it's tension headaches, the pots guy says do the regular stuff, it's not epilepsy, my MRI showed an enlarged pituitary gland, but they said it's fine, they never commented on my 24 hour urine test, so I guess that's all good, I still have an endocrine test left, but the doctor said he think that will be fine, and now they just say what everyone else says- we tried everything, we just don't know.

I can't go back to school like this. It's not fair to the ones who feel like I will die at any minute, including myself. But I also can't work because it makes me too tired. But I want to get my degree! I want to live my life!! I don't want to just give up like this! I can't just give up!

So that's why I need your help. Is there anything you can think of that I can do? Thank you all so much!

[Noreen]

Just brainstorming here as you requested so please don't get overly concerned about possibilities mentioned.

Did you get copies of your lab work? Do you bruise easily?

I am wondering about your platelet count and possible thrombocytopenia.

Did they do a full rheumy blood panel? A lot of your symptoms seem indicative of antiphosolipid syndrome. The episodes you describe could be TIAs - they can be self correcting and leave no residue that would be picked up on MRI. You could ask the doctor whether it might be worthwhile to bring in rheumatology since you aren't getting anywhere with answers. Rheumatology should bring in hematology/oncology is there are any issues with your blood work.

Hope you find some answers soon, sweetie.

((hugs)

noreen

[lissy]

I suggest maybe seeing a rheumatologist, I had a period of bruising and the aTTp was positive (which eventually was fine) but I found those doctors get a bit more in depth with testing.But thats all I can think of right now sorry.

[lissy]

Just brainstorming here as you requested so please don't get overly concerned about possibilities mentioned.

Did you get copies of your lab work? Do you bruise easily?

I am wondering about your platelet count and possible thrombocytopenia.

Did they do a full rheumy blood panel? A lot of your symptoms seem indicative of antiphosolipid syndrome. The episodes you describe could be TIAs - they can be self correcting and leave no residue that would be picked up on MRI. You could ask the doctor whether it might be worthwhile to bring in rheumatology since you aren't getting anywhere with answers. Rheumatology should bring in hematology/oncology is there are any issues with your blood work.

Hope you find some answers soon, sweetie.

((hugs)

noreen

Hey Noreen we must have been thinking the same thing

[comfortzone]

Hi friends!

It wouldn't be the first time you've helped me!

I'm trying really hard to think of anything that I could possibly be tested for before they send me away. again. like everyone else.

Basically, I'm being evaluated at the Mayo Clinic in Rochester by a neurologist. He is very sweet. Yesterday I went in to see him to follow up on my last two days of appointments and he said that he "gives up" and they can't figure it out.

The reason I wanted to go there was not really because of POTS stuff in my life, which is pretty clear, like fatigue and fast heart rate when standing or doing anything and passing out and headaches and all that just everyday. If it was just that I would buy the take a different beta blocker keep doing the salt/water/bed raising/compression stocking typical treatment and pray it gets better. But it's not, and I don't know what to do now...

The problem that I wanted to address is these weird things that keep happening. I was wondering if you would help me think of ideas so I can help him help me. It was my impression that he would so these things if I asked him to. He was a very nice doctor. He even told me that just because he didn't know didn't mean I was crazy! But I don't know anything about medical stuff and I know you guys know. Will you help me brainstorm?

Okay, these are the problems I want to clear up- sometimes (about six times in this year so far) I have these strange attacks. I have ridiculous chest pain so I wait for it to go away (sometimes it does) but then I get a headache like an aneurysm and I lay there in pain until for some reason I get really confused and I don't know what's going on, but then I get all sweaty and gross and I can't tell anyone what's wrong except that (I'm tired and my head hurts and my heart hurts. So naturally, this scares anyone who is with me and they take me to the ER and by then I'm usually just tired and I am aware, but I get really dizzy still when I walk and I always set off the tachycardia alarm on the heart monitor. Then they tell me I'm insane and to go to a psychologist.

So I did! And she agreed with me that it wasn't mental and I also went to a counselor who said the same thing. My roommate won't live with me anymore because she's scared to come back to our room and find that I'm dead. I'm scared of that too. But really, what can I do? At some point, something must be wrong and I want help, but now I just cry by myself until I am unconscious because I don't know how to manage it. Even at night I get terrible tachycardia and all these problems occur when I'm already laying down.

Some other things that really bother me is that I used to weigh 130 and now I weigh 105. None of my clothes fit and it drives me crazy! I have my period almost as much as I don't, even though I'm using the same birth control that has worked for five years! It just stopped being able to control my menstrual cycle and I get it all the time, with no pattern or order. I bruise like crazy ever since this started too.

So far, I had a head guy say it's tension headaches, the pots guy says do the regular stuff, it's not epilepsy, my MRI showed an enlarged pituitary gland, but they said it's fine, they never commented on my 24 hour urine test, so I guess that's all good, I still have an endocrine test left, but the doctor said he think that will be fine, and now they just say what everyone else says- we tried everything, we just don't know.

I can't go back to school like this. It's not fair to the ones who feel like I will die at any minute, including myself. But I also can't work because it makes me too tired. But I want to get my degree! I want to live my life!! I don't want to just give up like this! I can't just give up!

So that's why I need your help. Is there anything you can think of that I can do? Thank you all so much!

I don't know if I can help but I sure can pray for the best possible outcome for you.... I suppose I would tease out each item mentioned and ask for the best management for it.

So for one issue -- let's take the random monthly periods that are a change for you. This is in the realm of gynecology. It is important alone - as it's a change for you. Yes women's cycles do change in a lifetime - but changes that are life disrupting require investigation. Additionally you think about how that would affect things like your hemoglobin level ie poss. anemia. Hormones can be responsible as the medications such as birth control - a very learned gynecologist would be helpful to see if they can connect the dots in any of this for you

Next I'd think about a blood condition. Or a condition that effects the blood. So if you are bruising much more than normal - what could be the cause. Clotting issues (can be d/t some meds), or leaky vessels perhaps such as in a collagen disorder. Lot's of bruising would have you look into the causes - and then beyond that - are you possibly injuring yourself more than is likely for a person - and why would that be that you would suddenly get 'clumsy' if the bruising is from trauma like a normal bruise. Maybe the period situation with bleeding and the excess bruising are connected to the same cause...

Then my thoughts go to the emotional component of this - which can be hormonal perhaps (as can be the periods) -- also from inadequate pain control. It's normal and healthy and expected to have crying jags -- when you can't seem to break through with a rhyme or reason for feeling so lousy in sudden fashion off and on like that .... but if the crying jags in and of themselves are excessive - then perhaps there is a physiologic basis for the labile emotions.... To me you sound like a real trooper having a tough go of it lately... Could there be a true biological/physiological reason for this...I don't know...

Having a change in mental status - with confusion as you describe in conjunction with a headache does need to be thoroughly investigated -- you are on the money with wanting answers for sure. A tension headache in my experience does not cause confusion. Confusion -- that symptom alone needs answers - Dizziness while walking ... that needs investigation because confusion and dizziness can not only harm you if you should fall or heaven forbid get in an accident.... it could harm others if you were driving ... or if you fell while holding a child etc... Did you have the EEG to rule out siezure disorders of all kinds? I would definitely press for a sleep study if you have poor quality sleep or insomnia =-> because there they can monitor your EEG, your movement while asleep, your oxygen saturation levels, your type and style of breathing, snoring - many many things. But if you are there - and this makes sense with your symptom pattern I'd request it. Bad sleep can worsen everything while awake and can cause health problems if left untreated.

Your weight loss -- doesn't mention if it was intentional or not and over how long a period of time - and whether it's the first time this has happened or if it happens periodically these shifts in weight....but to me it is significant if it's rather new, rapid, and no underlying cause is identified yet. Have you had a glucose tolerance test?

You mentioned you can't tell anyone whats going on ... if that's because of confusion, or because you actually are 'unable' to speak or get the words out because of a brain thing - you are again right in holding the line in seeking answers there or somewhere else... Being unable to speak warrants serious attention... If you can't speak because you are worried about waking someone up etc... I guess that's a different thing.

I know the others here are so much more knowledgeable about POTS - I do not have that diagnosis -- so I pray the others can help with their insights ... Keep calm as you can and keep focused....this isn't the end of the line - the Mayo Clinic ... but it's definitely a step in the right direction as anything you can do to help you help yourself is progress. Think about what it'll be like to not have them available to ask questions and maybe that will help you target the biggest questions. Such as.... 'while I understand my enlarged pituitary gland is not cause for concern at this time... I wonder about it doctor. does this mean it is growing and I need periodic monitoring to see if it's getting larger? what symptoms would an enlarged pituitary gland cause if it were to be problematic?' So in addition to your overall big picture questions ... grab the things that bug you the most and ask them.....specifically.....how you should behave when it happens again.

Make them walk in your shoes... 'okay so I'm walking, I'm at the store, I get gripping chest pain. Normally I would drive home and lie down...is this what I should do? When I lie down then I get this severe headache....Normally I would take a pain pill and lie still as I can -- is that what I should do? Then I make sure someone knows I am suffering this way because I am frightened .... is this a good idea to have someone sit with me till it goes away? Does that person need to observe my confusion and inability to speak and then once again drive me to the ER? You see doctor I want to handle these symptoms intelligently as I can -- and think it out ahead of time -- because they are bizarre and very frightening as they occur. When I get all diaphoretic and sweaty and it's pouring off of me I wonder to myself - gosh no one else does this...what could be the cause? So should I stop wondering and just mop off the sweat?'

I don't like to be this pointed in my appointments - BUT I DO IT ANYWAY.... To make sure I'm heard accurately and understood acurately. Good communication is key ... Blessings to you!

[houswoea]

Thank you, thank you, thank you, all of you! I love this website because you all understand how hard it is to never know what's going on...

Actually the confusion may be pots related... It happened during the TTT at mayo too! At about four minutes, I started crying (lol) and I thought I was telling them to put me down, but they told me after that I was confused and that I couldn't tell them what I wanted...?

So... brain fog to the extreme I suppose?

And I think I would like to ask for a gynecology consult... as long as we're doing stuff, we might as well do stuff!

The weight loss was unintentional and I've been fighting it like crazy! I'm 5'5 and I used to be the "perfect" BMI... smack dab in the middle of good. But now I am underweight and I can't even fit in size 0 jeans and I've been trying to gain weight for the last three months by eating 5 little meals a day, eating high fat content like peanut butter and wheat bread and a lot of fruit and veggies and granola bars... even soda pop doesn't help! I just keep losing and losing and losing and it makes me angry.

Thank you all for the input!

[pat57]

I had a noticeable improvement after menopause.

My PCP who had seen this before, agreed, blood lose was an issue.

good luck

[Ashelton80]

Hi I don't have a ton to add, but I have had the major weight loss as well. I'm 5'8'' and my normal weight is around 125 lbs. I have always been fairly thin, but when I first started showing POTS symptoms one of the first things that happened was major unintentional weight loss. At my sickest I was down to 102 lbs. I looked HORRIBLE! Dr's. were even questioning if I was anorexic because of course they couldn't find anything in my bloodwork that showed them anything was wrong. I may be wrong, but I feel like this comes from the excess norepinephrine and just feeling so wound up all the time. I have the feelings of chest pains, can't breath, shaky basically feels like I'm going to just lose my mind! My mom also has these. I have been very hesitant to take medication for POTS, but it has come to a point where I just can't put my body through this anymore.

I will say the times that my body has calmed down and I didn't feel so on edge all the time, I gained 14 lbs back and now weigh 116!! I would love to gain another 10, but it's a start. It took me almost a year to gain it back though. So have you tried a beta blocker or a benzo? My mom takes both of these and is able to live a fairly normal life. I have been resistant, but am starting the beta blocker today and only take the benzo's when absolutely necessary. The one thing I have learned is that my POTS symptoms get much worse if I just try and ride the episodes out with out treating them.

Also, maybe check your diet and see if something you are eating is aggravating it. I know blood sugar plays a big role in the episodes I have. I was trying all the high calorie junk stuff to try and gain weight and it wasn't until I removed all of that and got my blood sugar leveled back out that I actually started to gain and my POTS symptoms improved. Just another thing to look at. Hope you get some answers soon and know that you are not alone.

Ashley

[houswoea]

I'm wondering if there could be a hormone imbalance of some sort. Anybody know anything about that? And what kind of doctor I should ask to see if that is something I want to check?

[sue1234]

An endocrinologist is the doctor that deals with hormones. Let me see if I can get it right(kind of late for my brain!):

Pituitary puts out:

Posterior: Antidiuretic hormone, Oxytocin

Anterior: TSH, FSH, LH, ACTH, PTH and GH

TSH-stimulates thyroid, if low, will cause hyperthyroidism(weight loss, anxiety, sweating)

FSH and LH-stimulate the ovaries, should be lowish at your age

ACTH-stimulate the adrenal glands, if too much will cause Cushing's disease with high cortisol,

giving symptoms like weight gain, hyperish, hot, increased b/p

PTH-stimulates the parathyroid glands, if too much, can cause headaches, body aches, high b/p, feeling cranky and old

Also, keep in mind about a pheochromoctyoma, which sounds very plausible with your symptoms, but you said they ran a 24-hour urine. It would cause an intense headache, sweating, feeling a sense of doom, high b/p.

These are some of the things an endo would look at from a hormone perspective.

If I forgot something or messed something up, someone please correct me!

I also agree with one of the earlier posters to have your blood sugar looked at. You could get a 5-hour glucose tolerance test with insulin levels to see what's happening. When my blood sugar drops, I start sweating(don't under heat stress!) and I get angry, and my heart starts racing.

Good luck!