Kitsakatsa

I've had POTS for 10 years, PAF for 6.

Starting at thanksgiving commenced a 3 week flu

Then, I had to travel for a week for work,

Then Christmas with the fam for a week.

Since my return home Saturday, I cannot stay awake. Yesterday, I slept for 20 hours.

My brain feels like it is not connecting, and all I want is my bed. My muscles feel extremely fatigued.

Plus, no matter what I eat, I feel food poisoned shortly after I eat it. (I've had nausea for 10 years, this is something different).

Does this sound like just an increase in POTS? Wierd.

Hi everyone:

I'm continuing my blog about exercise and pots. I ended it after a horrid fight with my mother when she told me that I was burdening everyone with my illness. But, a had a lot of friends rally around me and tell me to continue talking to them about pots. I think it's just a good thing to get the information out there about this horrible disease because maybe someone will not have to suffer. I'm still making it into a more informative blog, but if you would like to visit it,: http://newoneburntoshine.wordpress.com/

I have a goal to run the Ragnar Relay Series in June. I don't know what I'm thinking! I've been training really hard and feel like death. I spent Wednesday in bed wondering why I'm still alive. It is so hard. But I'm trying and that is the best any of us can do. I would love it if you have found exercise tips or things that make it easier to comment on my blog and let me know about them. I seriously feel like I have heart failure most of the time.

Well anyway. I hope posting about my blog doesn't violate any forum rules. I link back to this site on my pots informational tab and hopefully I can raise awareness with a group who might not ever know about pots otherwise.

Well, cheers.

Kitsa (oceangirl7)

Some of you may know me, I've been on this forum for years. I haven't been here recently because it's hard for me to read the posts. It makes me sad.

I'm starting to re-freak. Who knows why.

I read something today and I thought I would share

"People cry, not because they're weak. It's because they've been strong for too long,"

So I guess there are those who feel completely beaten up and defeated, like me. I'm giving you and me both permission to just really feel sad and mad. But then I read something else that we both need to remember:

"Having a rough time? Place your hand over your heart. Feel that? That's called purpose. You're alive for a reason."

Place your hand over a potsy heart and you'll get the ride of your life! PVC's, thready, tachy! LOL! We must have a wierd and strong purpose and must have to get to work fast!

So thank you all for posting stuff, even stuff that I can't relate to. Returning here, I feel so much less alone. I'm going to freak out just a little while more and then I'll be okay. We're all going to be okay.

Kits

So anyway, one of my struggles with POTS is that no one ever remembers the name let alone what it is. Even my own Mom will be demanding and when I remind her of why I can't do something she'll say that she always forgets that I have POTS. Nice. Then to make matters worse, she'll say every once in awhile that someone asked her what I have and that she told them that she can't remember and can't really describe it but will report that she told them it's a brain problem. Nice. I thought- if she doesn't know what I have and she's been to Mayo with me then this probably flies over the heads of every one of my friends and family. I wanted to do a POTS blog.

Then, I signed up to run a relay race which is virtually impossible for a potsy. I remember though, that someone posted one year that they had ran a 5k and every time things got tough I thought of that story and kept that as my compass and guide for where I wanted to be. I wanted to do a blog about my journey to the relay.

So, the two have come together as an educational about POTS and what a potsy would have to do to drop over 100 pounds, go from couch potato to runner. I have a little less than 1 year until the race and I will have to run a total of about 10 miles in 3 segments. How am I going to do this?! I don't even know.

The blog is "new one burn to shine"

www.newoneburntoshine.wordpress.com

I would appreciate your support. subscribe or just drop me a comment.

I hope that I can get the word out about pots place, pots, dysautonomia and then maybe achieve something a little amazing next June with everyone's help.

Kitsa

Oh, forgot to say that I tapered back down to 300mg in April and have had none of those effects since. I take it in the PM at bedtime now and not AM due to an online shopping spree that occurred while high LOL!

It sounds like you have your questions answered, but I wanted to give you my experience as something to watch out for.

I'm taking 300mg. When I still had major neuropathy issues, my MD moved me to 300 BID- so double the dose. This was in January. A few days later I had a sinus infection and of all things- the satellite dish was frozen, so no TV. I lived alone at the time, out on disability also so I was feeling some depression and chalked it up to the circumstances.

The next week, I suddenly felt myself slide into a full on panic. Not a panic attack, but a panic type of depression. I was terrified of being indoors and "confined", I was horrified at the thought of people having to replace their roofs on a tight budget and a dozen other extremely odd things. Luckily, my parents came and took me to their house because then I found myself sobbing, taking everything out of context and, for the first time in my life, suicidal. Then, suddenly it all cleared up.

Over the next 4 months, I would touch down again into the same abyss but I had a nice fat RX for Ativan and I thought I had finally slipped into insanity and that made me keep my feelings more secret from my parents and my doctor. So stupid me- I finally made the correllation when I happened to drop the info from the pharmacy and it had a big red warning about suicidal thoughts. My MD was out of town, the on-call didn't return my calls and so I jumped off of Lyrica full board, feeling that it was really for my own safety. That was a mistake. I was the sickest of my life. I took a dose finally to avoid the ER and felt better within a few hours.

So- lessons are that Lyrica plays with your brain.

You can actually get higher than a kite if you take it in the AM (I've been there and I've been behind the wheel)

You can sink to the lows I've described with the higher doses (or a dose that is high for your body)

You can not realize what you are doing (such as being behind the wheel and being impared)

It can make your personality change- such as hiding things or being overly confident

You have to make sure that you never run out of RX or you will feel so cruddy

You cannot just jump off of it (my MD was very freaked out that I dumped off of it in his absence)

As for the account about not being able to fill it out of state, I just filled it out of state at Rite Aid with no problems whatsoever so I guess it depends on the pharmacist.

That said- I believe that it is of huge benefit.

Like I said, I just wanted to give you my story so you know what not to do and what to watch out for. But, even after that I am glad to have it in my arsenal.

Kits

In answer to a few questions:

I have noticed that infusing more quickly (when I can get the hypertonic over 3 hours) means that the effect is quicker and the misery turns around pretty dramatically. However, a longer infusion (12 hours) has more staying power and there is less of a likelyhood of peeing out the whole thing. Also a quicker infusion has a vicious thirst that comes with it. This causes me to down a bunch of fluid and just washes the hypertonic out of the system faster. Make sense? Somewhere in the middle around 6 hours is nice and there is less of a risk of pulmonary effusion (that is- if you can infuse in the comfort of your own home. If you are at an IV center, 6 hours I find can actually make you sicker due to the sound, motion and **** TVs in the center)

To the person who asked about how to get IV fluids- your doctor prescribes them and then you can take that to an IV center in the hospital, or you can have them fax it to a home health service and they can rent you a pump and deliver the solution to your house with the supplies. I get both NS and Hypertonic for infusion at home.

Hope this helps,

Kits

How much and how often? How great and immediate are the improvements?

Not so much success with 0.9 saline, but dramatic improvements with 3.0 hypertonic solution. Results are noticeable within an hour if the bag is infused over 3 hours.

It's a little hard to get it infused that quickly though because getting it as an outpatient sends off all kinds of flags in the pharmacy.

Kits

Okay, I thought that PAF did have the HR rise- but you are both right, it does not. I definately have the HR rise.

I am really more confused than ever (doesn't take much), maybe these other things belong to POTS but it just hasn't been documented formally.

There have just been some things (like the tonic eyes, then hearing loss) and every time my Doc says "oh that's because of POTS", but I can't find them documented in the POTS family.

Just trying to make sense of it all.

Kits

So, how I came about this was kind of wierd and I cannot believe that it was missed at Mayo - TWICE!

I was reading an article about the Midodrine whole sheelywag and there was a link to an Autonomic Failure article at the bottom, so I clicked on it and I think I've discovered that I have both PAF and POTS.

Is that even possible?

Here's why I think I have PAF- PLEASE correct me if I am up the wrong tree...

It lists these things as belonging to PAF and not POTS and I have them:

1. Tonic Eye (Adies Syndrome)

2. Gastroparesis

3. A drop of 20 diastolic and systolic (each a drop of 20) on TTT. I dug through my records to my last TTT and lo and behold. A very significant drop in BP.

But then, it says that PAF is rarely life altering. I had an employee with PAF and we have very different symptom mixes. So, I do believe that I have POTS and time and time again I have been formally dx with POTS.

BUT what the crap?

Can you have both? Don't. Get. IT.

Does POTS + PAF = MSA?

Oh good heavens. I think I need a drink!

Kits.

First of all, I don't think they will prescribe it for you for grades falling off. You have to think about what you suffer from POTS and how Adderall will help relieve that symptom. Until a few months ago, I worked in medical and had a high enough position to be privy to daily med alerts, trends, issues with doctors etc. There is a HUGE crack down that is starting on "college drugs". There have been alot of doctors prescribing this purely for grades alone and it has caused a major problem because it is likely to be stolen, shared and is a sched I drug. A sched I drug is the most addictive drug there is. So that is just a taste of why you received that reaction. Records are being scrutinized by many state credentialing agencies.

So, I am taking Adderall and the symptom that I could point to was "cognitive clouding". I simply have a hard time thinking. I tried ritalin, but it made me secretly angry at everyone. I went off that and then read an article on Adderall. I have enjoyed much success with it and it made all the difference before I went into disability ( I have progressive POTS). So it is entirely possible that you are experiencing the same clouding.

So, in summary. I think it would help your doctor if you pointed to a POTS symptom that could be relieved by Adderall. As far as what type of doc would be most likely to address this with you- I would assume Neurology or Internal Medicine (what mine is).

Hope this helps.

Kits

I applied for the FBI before POTS and a year later was granted an interview for Quantico, Va. I had to turn the interview down. I couldn't leave my support system and I had just been dx. This was an interview for my dream job.

What POTS has given me in return I cannot even describe. I have the full knowledge that I have a specific guardian angel. I have made connections with friends, who are also sick, on a profound level. My doctor and I are now friends. I am strong now and I used to be weak. I can say that I now have hope, faith and charity in my heart.

Kits

I know just what you mean, all of my joints scream at me in the morning, after sitting, it's crazy. Mine has gone on for 5 years now, my line to the doctrs is I feel like I'm 80 years old. Strange points of pain in the last three knuckles of both feet and hands, very pin point sharp pain in those 6 joints.

That is how I feel. I have more dull pain- but I feel so old. I'm afraid to get on the Wii because it might give my flexibility age in the 100s! That is strange pain. Doesn't sound fun. Thanks for replying.

Kits

Have you read up on Rheumatoid arthritis? I believe it effects all joints and is symmetrical.

The feet do have alot of joints.

if you find that it does sound like you, keep in mind that remission is not unusual.

i say that because I feel like the thought of RA is upsetting, and I hope you find

no similarities .

My doc did a lupus test (cluster of tests) and my RA factor was high and everything was positive for Lupus, but I feel better in the sun- so we don't know. I wonder about straight RA though. I'll read more on it. I just keep thinking that I don't want to pursue it because I am overweight and I think if I just lost weiht- but I've been overweight for 10 years now (thx to taking amitryptiline in my 20s for headaches) and this has been a very recent change. I'll read more.

Thanks for responding!

Kits

I also have a lot of pain in my hands, feet, elbows, knees...to the point where I have a hard time holding a coffee mug. Fibromyalgia comes to mind first, since that's often associated with POTS, along with Chronic Fatigue Syndrome. My internist thinks I have something called "Complex Regional Pain Syndrome" which is a nerve issue and is also connected to autonomic nervous system function - or dysfunction! It can occur from an injury, cerebral lesions (which I have), ischemic heart disease (which I also have), surgery, or the cause can be unknown. I wrote a thread about it still on the forum under the name of the syndrome.

I would definitely get these things checked out, because it sounds like there definitely is something going on, even if it's osteo or rheumatoid arthritis - especially since you were a dancer previously. Lyrica didn't help me, so I'm just starting a dose of Neurontin. Juries still out on that one.

Good luck getting to the bottom of this, and hope you get relief soon. Let us know....

Jana

My word, you have a lot to deal with. I'm sorry about the Complex Regional Pain Syndrome. I know exactly what that is from my work in the OR and I am so sorry. That is not a fun ride. Thanks for replying.

Kits.

I I explained to my doctor that I feel as if I was tumbled dry in the dryer... just all beat up. My hands hurt so much I once had a dream that i was a piano composer and I was banging on the key board.

Exactly! I just mentioned it to my doc- I only had 10 seconds because the visit was for dis paperwork but I described it like I feel I'm in a car crash when I get up. I try to be a pretty active person now that I'm not working and what you are saying above sounds exactly how I feel!

Kits

OH YEAH!!!!!! I stand, hold my breath ......... wait ........hold my breath ......... breathe, try to walk. Same with my hands and fingers. I have been diagnosised with osteoarthritis and fibromyligia and Ehlers Danlos. So take your pick. Not sure if this is it, but probably a combination one of the three is.

Sorry you have it too. I'm trying Turmeric and Ginger as anti inflamatories to help. Seems to help some. Just remember with ginger, it thins your blood and you must stop it in advance of surgeries. The other thing is homeopathy. When it's real bad, Tramadol and Bentyl.

Thank you. I do have Tramadol for menstrual cramps and that does help a little but I only get 10 pills per month (Utah is hyper crazy on poly pharmacy pain meds). With your Ehlers Danlos, did you feel that you were hypermobile before you were diagnosed?

Kits.

Oh also, do you want to hear something wierd?

After just a few minutes, the vibration of the car on my feet becomes so dang painful!!!

Have you ever put your feet in ice water? It is that grade of pain.

I went to a foot doctor, but he just said "here's some arch supports and my bill for $200".

I am not a complainer, but I just really think that something is horribly wrong.

I just don't know what.

Kits

Does anyone have this?

When I stand up after sitting even a couple minutes, my joints are in extreme pain.

They are super stiff and I even lose power in my muscles while going down stairs sometimes.

The joints hurt to the point of an inability to move after a while they seem to warm up.

When I run errands, my hips hurt like they are held on by safety pins or something. My feet just absolutely kill. They are painful when I get up from sitting and then even worsen. I can't count the times I've found myself walking in the parking lot walking slower than the oldies in the walkers. It takes me forever to grocery shop. I used to be this super nimble dancer 10 years ago and now here I am walking all stick legged and slow.

This has really popped up in the last 3 months, so it seems that it has been sudden. One day I was fine and the next day, Bam.

I am starting to feel so old!

Does anyone have an idea of what this could be? It has been helped by Celebrex a little bit but the stiffness is still there.

Kits

I've taken both online classes (finished an MBA) and campus classes with POTS. Here's the merry list of stuff I was in love with:

1. Adderall (lol, but seriously)

2. Laptop

3. Recliner

4. Small printer/copier

5. Frozen gatorades for the backpack

6. Handicap Parking Pass and Handicap Campus Parking Pass

7. Money for when paid parking is closer for sicker days

8. Markers, colored pencils (cognitive clouding seems less of a problem if you color code your notes)

9. Ipod with playlists: relaxation, energizing, fighter, etc.

10. Caffeine, Caffeine, Caffeine!

I hope this helps. School is tough with POTS but definately do-able. Anything worth achieving is difficult and hard work.

Kits

The other good'n was also from my sister-in-law - she excitedly called me last year to tell me that she knew what was wrong with me: I was just going through menopause.

Dianne

LOL! I keep trying to pick up on the male pharmacists because the pharmacy is the only place I hang out now! I think I've done a hair flip so many times they think I have special needs...

I forgot to mention the best from my own dear Mom: it's similar to your apparently traumatic menopause. She called to say that she figured out that I had nervous system damage from changing the litterbox because now I have two cats AND I am single which means that I am the only one changing it.

Nice. I also thought that I would have died by now and all I could think was, my own mother now things that I so severely single that I will be the first one on earth to die of single status syndrome. I am such a spinster that I am sick because I have cats for children or whatever.

OMG!

Kits

O th' material! I am recently disabled and the symptoms have been getting worse, but I worked for nearly 7 years with POTS and I have heard everything in the world. Here's my favorites

1. From a family member: "So....now it's your turn....so... you DO like men don't you? You need to GET OUT MORE so you can find Mr. Wonderful" (GRRR 50 hours a week plus school is not "out"?)

2. From a co-worker: "You need to just come with me and exercise a half hour every day during lunch, no excuses. If you exercised like I do, you would just forget about this POTS thing" also said "You would feel better if you cut down on your salt intake so you need to stay away from canned vegetables" (kill)

3. From a family member: "You need to learn patience" (exSQUEEZEme?)

4. From a neighbor: "Did they EVER find out what was wrong with you? I hear you've decided to be a Lady of Leisure" (I guess you could call dead people leisurely also, plus I've told you my diagnosis 8 times!)

5. From a coworker: "See, I'm not like you, I never call in sick. I think the last time I call in was 3 years ago, and I have a big medical problem- I have Irritable Bowel Syndrome and you don't know sick until you have that" (um, right. yeah, boy not like every single person in America has that and It's so fabulous the way you can put your poo problems up against all the horrid illnesses of the world and call them even.. can I get you a wheelchair?)

Well then, that was therapeutic.

It's amazing that people think you have to be old to be sick. Just tell them your "true age" is 89 due to your illness. If all else fails, place an emesis basin on your desk and carry it around with you- no one will bug you and no one will steal your lunch out of the work fridge.

Kits

These sound interesting! Have you seen them in stores or just online?

Thanks for the info Kit!!

I found them at Harmons grocery store, but that is a local store. I wonder if you might find them at places that have extensive selections of power bars. Maybe a REI, Sportsman's Warehouse, or even Whole Foods, etc.

The price (this grocery store is horribly over priced) was $2. Could probably find them cheaper elsewhere.

Kits

I haven't been on in awhile so someone may have already posted this, but I came across a little wonder product that I think helps control my POTS symptoms.

Clif (as in Clif Bars) Shot Bloks

These are gummy blocks that are easy on nausea (easier than some of the other solid products) and contain electrolytes and sodium. They are small and portable enough to throw in your bag and when I tried it, it seemed to work pretty well. Here is the rundown:

Nutrition Facts

Serving Size: 3 pieces

Serv per Container: 2

Calories 90

Total Fat 0g

Cholesterol 0mg

Sodium 210mg

Potassium 20mg

Total Carb 24g

Dietary Fiber 0g

Sugars 12g

Protein 0g

Ingredients: Organic Brown Rice Syrup, Organic Evaporated Cane Juice, Organic Brown Rice Syrup Solids, Pectin, Sea Salt, Citric Acid, Natural Flavor, Organic Sunflower Oil, Carauba Wax

Comes in different flavors, of note "Margarita" contains 3x the sodium of the other flavors.

I don't work for Clif or anyone like that. Just came across this product and gave it a try and it seemed to give me a good boost. I see a website on it:clifshot.com. I am glad to see that despite the recent trend of going low salt that there is a company that acknowledges that sodium is of benefit to the body and that there are some incidences where individuals will want to salt load in order to keep healthy.

Just thought I would share.

Kits

I am on 0.4 daily and I have a couple of thoughts- things that were told to me about Florinef from my Doc and also Dr. Low.

I was told that Florinef ONLY works if the sodium level in your blood is high enough. Florinef is meant to help you retain and utilize sodium and unless it is there is adequate to excess amounts, florinef will not work. I would consider asking your doc about salt tabs or high sodium snacks such as cottage cheese and pickles (not together though, ew). I agree with Mack's Mom though, that could also be a cause. Once (while on Florinef) my BP was 40 something over 20 something and I was admitted for shock due to a Anzemet allergy so yes, other meds and allergic reactions can lower BP and Florinef usage is really not going to help boost you when there are other things going on.

Secondly, about the tachycardia. Dr. Low stated that Florinef will temper your tachycardia. For example, my baseline was 158 BPM before Florinef and when taken at Mayo on full Florinef, I was 80 BPM. I still was DX with POTS because a helpful mechanism of Florinef is that your tachycardia is controlled and tempered. You can still have all the symptoms of POTS and this will happen on Florinef. One of the benefits I guess. A natural question I have is how do you know your standing pulses are that? Often times POTS pts have standing threadiness to their pulse and people as well as a good number of machines do not detect pressure or pulse correctly. That might be a cause.

Anyway, hope this helps. It sounds like alot of what I have been experiencing on Florinef. I really feel that it is my wonder drug. If it works for you, it is a great blessing.

Kits