Roselover

Dizzy,

I'm there with ya girl... fatigue wise. I almost didn't answer cause I takes way more effort to type than to just click my little mouse.

Too tired to chew - yes! My family say they see it in my face muscles... to tired to hold any expression.

No.. no cause has been identified for me Just wanted you to know you're not alone - wish I knew what to even do!

(((HUG)))

~Roselover

Both my husband and I have been praying for Melissa and we specifically prayed for this port surgery yesterday. So glad you posted an update Kristen. Thank You!

Love you Melissa!

~Melanie

Hi everyone,

I didn't even know they had scheduled me for a follow up appointment after I saw Dr. Grubb last March.

But I got a call yesterday telling me I am scheduled on Feb 5. I live on the West Coast and traveling is not an option for me now.

I am going to be calling in a just a couple min to cancel the appointment. I know some have been able to snag those cancellation spots if they call right away, so if you're looking for an appointment with Dr. Grubb, call soon to see if you can get my spot.

~Roselover

I was prescribed Provigil, by my Neurologist, for fatigue.

My insurance denied it. My doctor said she could keep me stocked with samples.

Unfortunately, I worked well for me for the first two weeks. Then it caused my POTS to get worse - mainly my heart rate issues. Got so bad I had to stop the Provigil.

I now know - after trying several other similar meds - that my body reacts this way to any stimulant. It begins feeling better and then quickly takes me to tachycardia. I do much much better on CNS depressants. Don't really know what that means -- but at least I'm beginning to understand my body.

~Roselover

I'm going to put this info on my blog in case some of my non-POTS friends see it!

Sadly - I don't have cable either so if anyone can record it and has the capabilities to share let me know! I'd love to see it! And share it!

thanks for the info!!!

Roselover

Wow, interesting that you posted this. I was just thinking about it again the other day.

This is the same for me - I'm at 5.5 years of illness, and though I have very severe fatigue - I almost never catch something - even when it goes through the family. If I do, it is very light and short lived, while others in the family have it bad.

I do think I have less exposure - being home so much.

I've wondered the same thing as wareagle... about the unidentified autoimmune overdrive. But I don't fit into any typical autoimmune disease category so the doctors aren't interested.

Very good question - and interesting that there is a section of us that all experience this!

Welcome Kendra,

There are a lot of griefs along the path of POTS and it's good to be able to share them and cry some. It helps move on - which I think you're seeing.

I can really feel for you when you talked about "packing up your classroom" - it almost made me cry - just bringing back the reality of the losses.

Glad you've found a place to help you not feel alone and keep learning.

You'll see me pop in every once in a while... I don't write as much as I used to, but I still check in and try to keep up on what's new. I just wanted to say "Hi" too!

ME TOO!!!! (yelling and stomping my feet... only in my head cause I'm too tired to move more than my fingers to type this)

I HATE it!! I have not found answers either and don't know where to turn. I've debated some of the CFS treatments out there - but don't have the energy to keep chasing down rabbit trails.

I was at Vanderbilt recently. They are beginning to study the fatigue because they are finding that 50% of their POTS patients have severe fatigue. But they only have guesses right now and no help.

Both Vandy and Dr. Grubb suggest trying some of the typical stimulants used for ADHD... like Adderall, Ritalin, and Provogil. I've tried them all and they make me feel better for a week or two and them my body goes into over drive and my Heart Rate is out of control. So those options are out for me.

If anyone ever learns anything or gets ideas on how to deal with it... many of us will be very excited. But for now, I just try to cope best I can.

BTW, Bee... I get periods as long as 6 months before I get a short period of relief. I just had a 4 month one... with a 10 day one week reprieve and now headed back into it. It's so hard on the emotions - not knowing when they will hit and how long they will last.

~Roselover

I found this quote... that best defines my fatigue:

"This illnes is to fatigue, what a nuclear bomb is to a match. It's an absurd mischaracterization." Laura Hillenbrand (author of Seabiscuit)

Whether or not it is my dyautonomia or an indication of the cause of my dyautonomia, I have yet to figure out. But it is understood by the specialists to be a common complaint.

~Roselover

I've been to Vanderbilt. But if you search "Vanderbilt" and look for "Vanderbilt Chronicles" by Sunfish you'll get a great description of what it will be like.

They tend to tailor the tests they put you through - but it will also depend on what they are currently studying.

But you will get a Posture study with catecholemines measured and an Autonomic Reflex Test. Then you will probably do several medication trials. You get the results and info of what you tried after you are done with your time there.

I really suggest you read Sunfishe's post and you'll have a really good feel for what it's like.

~Roselover

Dizzy... did you end up coughing as well? My laughter seems to often end with a coughing attack too - like I have sudden congestion in my lungs... as long as we all were comparing, I was just curious.

~Roselover

Imitrex did not work for me... but then my neuro prescribed Frova... and that works great for me.

I believe I had a "cluster" headache... though my neuro brushed it off as a migraine (she wasn't listening very well). When I had it, it was through the night.... I finally took Frova and it helped that one too. I woke with a bloodshot eye - right where the pain had been - like a skewer going through my eye and head. But the Frova helped that one too!

Dizzy,

Just had to click on this topic! Yes... I get symptomatic from laughing too! Not as bad as you describe... but head pounding, flushing, tachycardia...

Like Sophia and Firewoman said - I also get it with crying and singing.

I'm sorry your great moments of enjoyment ended like this!

~Roselover

Very good advice Melissa - thank you.

I'm having some of this problem myself lately... and I have wanted to just ignore it. But you reminded me of the reasons not to let it go on.

I do have sensation to go... it's just not until I'm extremely full and then I can't release it all. I had a urology study done a year and a half ago and I totally agree - not the best test - but not even near the top of the worst!!! :-)

Thanks Melissa!

~Melanie

Well, I don't have any good advice on dealing with your office. I thought of a heater at your feet - but it seems you've already thought about that.

But - I CAN validate your cold intolerance! Once I'm cold - I do not warm up easily and it does throw my body into a tizzy fit! And my temperature does not always match the other people in the room!

I use a lot of rice bags - Linen bags filled with rice. If you microwave it, then the rice gets hot and I ue them on my feet, hands, under blankets etc.

You could use this in your office too - or maybe a heating pad - that helps me warm up to.

~Roselover

Lots of us can relate I see! Yes, I have this and am finding it to be worse as my symptoms are worse.

Recently, I was on the phone with my PCP's nurse, whom I talk to a lot, and I totally blanked out and was very confused in our conversation (it was early in the morning). I think she expressed concern to my doctor... because my PCP called me and talked quite a while and had me come right in.

She really urged me to go to a Neurophsycologist and get cognitive testing. I did that just a couple weeks ago.

Well guess what? No indication of brain damage at all!!! In fact I scored in the 93-94% in most areas (for my age - 45). The Doctor said that he feels from all the testing (a full days worth) that there are several factors to my function loss (it's become apparent to my whole family too). He said that the fatigue I have is probably the biggest cause, as well as the fact that I have a severe chronic condition with not enough management of the symptoms. This limits my brains abilitiy to focus in the way I used to.

So... one of those good news bad news.... good news = no brain damage ... bad news = until I can get this illness under control and the fatigue dealt with, there's not a lot of hope for improvement.

So... I make adjustments. I don't drive much because the quick decisions are hard. It's like I"m a new driver and have to concentrate hard to drive well and that's tiring (let alone - sitting straight up). I laugh a lot at my mistakes to keep them light hearted... but I let my family know when my weirdness or mistake hurts my heart too much to laugh.

Hope my testing experience helps some of you feel more secure.

~Roselover

As others have said, high vitamin B12 level is not generally thought of as particularly concerning, although I've always wondered about the cause when I saw these elevated levels in my patients. One way to explore this further would be to order a vitamin B12 cascade, which includes methymalonic acid and homocysteine. Another, more in-depth way, is to analyze B12 level in the red blood cells directly. Do you have any other abnormalities in your blood work, like anemia for example? Do you take a multivitamin? Do you supplement your diet with any nutritional drinks/shakes/bars that may be high in B12? Have you been treated with erythropoietin?

Thank you Doctorquest and everyone who added their input. I've read it all... and at least there doesn't seem to be anything any of us know about that would cause such high b12.

As for your questions DQ - these tests were run by a neurologist and she didn't order blood count. No on the erythropeoietin. Nothiing in my diet that I can think of....

It seems that it shouldn't be connected to my gasteoparesis, because it's in my blood - so it's being absorbed... but maybe a problem in being used???

Well... if anyone comes accross an idea... let me know... but for now, I won't worry about it.

Thanks for all the caring posts!

~Roselover

Ok... I've read lots about low B12. Read the thread about B1...

But I was tested again for B12 levels and my levels are way way above normal!

Reference range for normal [211-911]

My B12 is greater than 2000!!! yes two thousand.

My PCP had no clue what that meant or if it was harmful or anything helpful.

ANYONE - have any info on this? Doctorquest? Any articles that anyone can find? Who would I ask?

NO... I have not had supplements or shots. In fact, my nutritional intake is poor due to my gasteoparesis.

Thought someone here might be able to give me some input.

~Roselover

I found a wonderful Toaster at Kohl's.

You can quickly make toast and an egg!

You pop the bread in... add some water and the egg - either hard boiled/ soft boiled or a little pan for poached. You can drop some cheese on to. Push the button and it all cooks and is ready at the same time!

Without it, I'd never have the energy to get my protein at breakfast time.

Rachel,

This is very interesting and a timely discussion.

I've been way overdo for a sleep study and keep putting it off. I finally decided to do it this fall - and then Vanderbilt University invited me back for quite a few studies - one of which is a Sleep Study!!

It'll be interesting to see what they find. They are studying sleep issues for POTS patients.

But I will still have to come home and find a doc that will help me deal with whatever they find. I'm curious... is your sleep specialist a Pulmonologist or Neurologist or other? Those are the two choices I have here for a sleep center and I've been leaning towards the Neurology - thinking they might respond to and understand ANS problems... but my PCP really likes the Pulmonologist so I don't know who to see.

I had/have FM too until I got my sleep doing a little better. I started with 1/2 and Ambien on nights I couldn't sleep. That turned into a whole and I sleep so much better I wanted something every night - but my insurance won't let me have it. So right now I alternate Ambien and Clonazepam (Klonopin). I sleep better on the second - but I never feel rested in the morning... in fact I feel worse when I awake!

When I went to Vanderbilt last year... one of the study drugs they tried was melatonin. It made me so sleepy... I slept all afternoon. But it made my POTS worse the whole day. Of course - that is just me... but I thought it was interesting. So I don't take melatonin.

I've thought about trying the Valerian/Lemon Balm... but I don't want to play around with too many meds - even non-prescription, before I really know what's happening in my sleep.

I'll let you know what I learn when I get back! Let me know your opinion on the Pulmonologist vs Neuroligist Sleep specialist.

~Melanie

Wish I could hear you sing it! Melissa will love it! Maybe you could do a simple recording on your computer and put it on a myspace or something?? It would be fun for us all!

~Melanie

Hey Steph!

Had to chime it...

Yes - I get that exact feeling! I told a Neurologist and she seemed uninterested (but then she seems unintereste in anything - looking for a new neurologist...?)

AND

I have, in the past couple yers, have spasms in my mid back - very unexpectedly that can restrict movement for days. One thing that has helped is a sock with two tennis balls and I gently put it between my back and the wall and genly massage the flared spots. I also have a stryofoam roll you can buy from a PT cataloge and I carefully lay on it...

put the end at my tail bone and slowly roll down with my head resting on the roll. Making sure I have relaxed and pulled down my shoulders I place my hands on the ground with palms up. Just resting and tryint to release as I breath out. This helps some during the flares. They also seem to disappear as suddenly as they appeared - though it can take a while.

Just had to let you know...

Love Melanie

Guess what I read today Nina? They are now connecting CFIDS and Dysautonomia for some CFIDS patients... and the NIH just awarded several grants to study the connections bewteen CFIDS and the CNS... and Vanderbilt is one of the groups that received a grant! (specifically - one of the autonomic docs!) If you want the links I'll have to go back and look... I know totally different topic... but interesting you mentioned this about CFIDS and I was just reading about it this morning!

Information, guidelines, treatements etc are ever evolving aren't they?

~Roselover

Thanks Katherine!

And thank you Doctorguest for clarifying - though, I must admit... it does bother me that the original link posted does not even distinquish whether this is disucussing intial treatment for those recently infected with Lyme or the very unusual - but occasional chronic lyme discovered years after the infection. But of course, I still don't expect you to be able to comment on that.

Thank you Pamyla for your post... how did you find this information? I too find the methodology very intriguing AND important to how we interpret and apply information like this.

Ethansmom - I can see how this could be extremely disturbing to you and a few others here on the forum. Many of our dysautonomia "treatments" are non-conventional uses of common treatments. Here, we gather together some very unusual circumstances - and a huge variety.

BTW - I don't have Lyme that I know of or have pursued this in anyway. I just spoke up because I've sat back and read quite a few discussion where a report, news article or study was presented and I was concerned how the wrong conclusions became "set in stone" in our minds. I just thought it wasn't very fair for me sit back and never say anything.

I just want us to be very careful how we read each piece of information AND what kind of conlusions we come to. And I especially want us to remember that we are a forum of people with similar symptoms, but a huge variety of causes and mechanisms. I like the way Doctorguest reminds us that these are general guidelines and even the professional medical community recognizes that there may be special circumstances calling for different choices. And those special circumstances may be here in our midst!

~ The Logical Thinking Roselover

Thanks Katherine! Well that's a good starting knowledge in which to read these new guidelines. I'd still like to know even more about what it means to those in the medical field.

What hot topic did I jump into?

The only two I could think of were reading and applying articles correctly... or is it Lyme? There was another discussion on Lyme - is that it? I guess I haven't been around enough to know of "hot topics".... just really concerned that I often see articles, studies and reports posted but sometimes we all jump on the wrong bandwagon!

Sorry - to anyone in whom I bushed a button!

Come on everyone, let's just be careful how we read all these reports! Knowing what a medical guideline is, will be very helpful!

~Roselover