New Member.. My P.o.t.s Experience- Sorry In Advance For The Length

[jenglynn]

Hi Everyone,

My name is Jen and I am 37 years old. I was officially diagnosed with P.O.T.S about 5 months ago but am no where near feeling better. I guess in many ways I am lucky, especially after reading so many of your posts where the diagnostic phase has lasted a long time. I started having symptoms in April of 2011 and was diagnosed offically in July. Looking back over my life, I think I have always had some symptoms but not to this severity. I have always been prone to fainting and lower blood pressure. I also have always had a lot of discoloring of my extremeties. It never, ever got to the point where I am now.

I am not sure what "kind" of P.O.T.S I have but I know it is hypo because my blood pressure goes way down when I stand and pulse goes way up. My symptoms in April started gradually with one episode of syncope and feelings of fatigue. I had two more episodes of syncope and my doctor ordered a holter monitor to check my heart. Everything seemed fine at the time because all of my vitals and EKGs were always done while I was sitting. Suddenly, in June, one day I was short of breath. It was the strangest feeling I have ever had. Just out of the blue, I couldn't catch my breath. I couldn't talk without losing my breath, could not walk. It was very scary. I felt like I was gasping for air even just sitting upright but especially if I was walking or doing anything physical. I couldn't walk up stairs all of a sudden. I felt like my body was falling apart. I could not regulate my temperature. I had horrible anxiety which I had never had before. By the way, this was diagnosis number one. Shortness of breath was anxiety. Ummm... no... I can distinctly tell you that the shortness of breath came first and yes I am anxious when I feel like I can't breathe. Then it was asthma. No asthma either it turns out.

I got the results of my heart monitor I wore for the month and it showed quite a few episodes of sinus tachycardia. I did not experience any syncope during this time but a few of the episodes I had dizziness and lightheadedness... near fainting. They did a stress test.. where I collapsed on the treadmill after not very long. HR very high.. BP very low but they never gave me the numbers but I was in there for quite some time before I could go. Next step was TTT (ugh, miserable) and that is when they diagnosed me with P.O.T.S.

From there we started the medication merry-go-round. This is mid-August of this year. Beta blocker (Propanol), Midodrine, Florinef, anti- anxiety (Klonipin) and Paxil. We have mixed this up for a better combo or removing some, adding others but nothing has worked. My symptoms have gone from bad to worse. I use compression stockings, drink lots of fluid, water and gatorade, salt my food but a huge problem I have is a complete lack of appetite. I am subsisting mainly on protein shakes at best and can't eat or keep much food down. Since July, I've lost 30 pounds.

In November my symptoms got really bad. I had been having 4-5 syncope episodes per week from Sept. to Oct. and toward the end of Sept. I was unable to work anymore. Fatigue was overwhelming. My pulse was always racing. I felt like I was under a constant anxiety attack. I think I was having adrenal surges because I just always felt like I was jumping out of my skin. I was still able to walk around and do the bare minimum housework but could not really cook anymore. Grocery shopping or any shopping was a nightmare but I tried my best. In the beginning of Nov. syncope was a daily event. Not unusual to have 10-15 a day, which felt like every time I stood up. About 3 weeks ago, I got up one morning and fainted and hit my head on the edge of a metal desk and cut my head open pretty badly. Required 20 staples to close it up and also got a concussion. I was observed, given IVs and told that they can't cure POTS in the ER (which I know) and then sent home. I was more careful after that but about a week later I fainted in the bathtub and smashed my face on the floor of the bathtub, causing significant bruising but no real injuries. At this point, I am having syncope almost every time I am up so I pretty much don't get up unless someone is with me. Until last Wed. I was feeling pretty good so got up in the morning just to make my bed. Next thing I know I am waking up on my bathroom floor covered in blood after splitting my head open. This time I go to the ER again, they give me fluids and do the BP sitting/standing test (after head injury stablized) and sitting my pulse is 67 and BP 100/70. They have me stand for 30 seconds with someone on both sides of me and they told me that my pulse got up to 190 and my BP went to 40/22 but I passed out. They got me back in bed and I started to wake up with my awful headache and feeling pretty discouraged. When will this end? ER doctor said that I couldn't go home because it was too much of a safety risk so they admitted me into the Cardiac Care Unit. I had a team of 3 cardiologists, 1 endocrinologist, and 1 neurologist. Most of the doctors had never even heard of POTS and the ones that had had never treated anyone with it. So they kept me on bedrest except to use the restroom. Same thing would happen. I would be lucky to get back in bed conscious. They checked my standing BP and pulse the next morning and it went from 73 HR and 90/70 BP to 179 HR and 38/20 BP in 30 seconds which of course caused syncope. Got me back into bed and I stabilized but was exhausted. They decided no more orthostatic testing. They had enough evidence. I was there 5 days and the only thing they discovered was that my thyroid in the last year had gone from .68 last Jan to .43 in July to .16 last week indicating hyperthyroid. But when they checked my T3 and T4 numbers it indicated a HYPOthyroid so that made no sense to anyone at all. While I was in bed I stayed stable. They consulted with specialists who said they wouldn't do things any differently and didn't know what else to try with me. Initially the plan was to keep me for weeks to keep me safe but after making sure my resting vitals were stable continuously they decided to release me home with bedrest. If I have to get up, I have to crawl on my hands and knees. Absolutely NO standing under any circumstances.

So now what?????? I am a mother of 6. I am a full time Master's student (online thankfully). I have (had) a busy, productive life and now I feel like a burden on my entire family. Being released from that hospital with no answers other than to tell me that I can't walk was beyond what I could even comprehend. How do I live like this? Even crawling around, I am still having the severe tachycardia (this morning it got from 56 to over 190 in under a minute) but I guess that could be expected from the exertion from crawling maybe? (which is actually really hard work). I just feel lost. I am recovering from multiple concussions and my POTS symptoms have spiraled to the point where I am completely debilitated. What do I do now????? ANY ideas? The hospital made an appt with a specialist for me at UW-Madison (I live in Wisconsin) but I have no real hope with him. He is one of the ones they consulted with who advised he didn't know what else to do to help me. I know this was a very long post and I am very appreciative to anyone who took the time to read (or even skim) the whole thing. I am just frustrated. I just want to be able to take care of my family again and not the other way around. I want answers. I can't continue my life crawling around on all fours on the rare occasions I can actually get out of bed and the multiple syncopes cannot keep happening as I am lucky to have survived the last one. Any help, advice, support would be much appreciated. I am feeling lost and alone and very afraid that this may never get any better. But I am also grateful beyond words to find this forum to talk to others who may be able to relate.

Jennifer

[corina]

hi jennifer, welcome at the forum, although i'm sorry you have reason to be here.

i'm sure we all understand how difficult it is to be so limited when you have 6 kids and a very busy life. but please don't feel a burden to your family, you have taken care of them so now it's their time to give back and i think that seeing how sick you are, they will lovingly do so. i hope that consulting the dr at UW Madison will give you some answers and a better quality of life.

take care,

corina

[abnel]

Hi Jennifer, I am so sorry to hear you are going through such a difficult time. I am sure there are many members who can relate to your story. Having multiple episodes of syncope daily or weekly must be very frightening, especially when you injure yourself in the process, and feel you have set yourself back again.

With POTS, every step taken towards 'recovery' or more functionality must be taken very slowly, much slower than most people have the patience for. I think with what you are going through every little baby step, be it the abilty to sit upright in bed for longer and longer periods must be recognised as a step in the right direction.

When you are in a POTS hole you have to view the activities of daily living that we all take for granted as exercise in themselves. No doubt your heart rate will be right up there, even with crawling from the bed to the bathroom or kitchen, etc right now. Then slowly over time, you will be able to increase what you can do around the house, and with time and the care of medical professionals, you may be able to sit upright more and more, then eventually do some standing and walking. All of these things will hopefully build on themselves, enabling you to be more functional as time progresses.

Some other members have posted about the sort of very gentle exercises you can do while lying in bed. I think Sallyblooms had some good tips severals months back. These may be too much for you right now, but are things you can work towards doing in the future.

Sending gentle hugs your way and hoping you feel stronger as time passes.

[janiedelite]

It sounds like your doctors have probably run tests to check for any serious underlying heart problem, so it may be helpful to keep trying other meds that can help dysautonomia patients. I think you mentioned already trying midodrine. Perhaps octreotide would help as it also vasoconstricts?

[Chaos]

Wow! Sounds like a real mess for you right now. Can only imagine how hard this would be for you- especially with 6 kids. I have 4 myself so can relate but my kids were older (all teenagers) when I got sick so they were able to help me out.

Obviously you can't keep falling (well you CAN but it would be a really bad idea) but making you crawl everywhere is clearly not acceptable either. Do you pass out when sitting? What about a wheel chair? You can get one that reclines the back with a head support and elevating leg rests so you could at least get out of your room or go to the bathroom? Do you have a shower chair for the bathtub so you can sit down to bathe?

Have you found the IVs that they give you in the ER to be helpful? I know several people on this site get regular IV infusions of fluid from either home health care or they go to an infusion center. It's a temporary help obviously but if they help you temporarily (at least long enough to leave the ER etc) then it might be worth trying until you can see a specialist.

It might be worthwhile to check into being seen at one of the major centers. I know the waiting lists can be long but at least you'd be on a list and moving up as opposed to just being sick with no end in site. If you're in Wisconsin you aren't TOO far from Mayo in Rochester, Dr. Grubb in Toledo or Cleveland Clinic.

Glad you found this site where hopefully you can get some ideas to take back to your docs. I think a lot of us on here find ourselves spending most of our appointment time with our doctors trying to educate THEM on our condition and suggesting treatments that might help. Certainly a lot of us have had to find the diagnosis ourselves to begin with.

Have you considered wearing a helmet when you DO get up? I understand that all this syncope is terrible but causing a subdural hematoma from falling could be fatal or at least very dangerous so a helmet might be another stop-gap measure to try. Maybe a padded room too so you don't break bones when you fall? LOL (Ok, so if we can't all laugh at some of this we'll never make it through all the stuff we have to cope with. )

Sending you lots of hugs!

[HopeSprings]

Jennifer - sorry you're going through this. Strange how this thing invades our lives so suddenly and so dramatically, isn't it? One thing that stands out in your post is your Orthostatic Hypotension. You're having quite a drop in BP. My understanding of POTS is that the orthostatic intolerance happens in the absence of orthostatic hypotension. Are they sure it's POTS? Someone correct me if I'm wrong, but can it still be POTS with OH? I hope the next Dr. you see will have clearer answers for you.

[jenglynn]

Naomi,

I am not sure. I have never had a doctor tell me that I couldn't have Orthostatic Hypotension with P.O.T.S but have not been working with experts either. Maybe someone in the forum will be able to help? I do have many of the other POTS symptoms as well, dizziness, syncope, tachycardia, shortness of breath, anxiety, Gi troubles, headaches, and many many more as I am sure we are all well aware of. I didn't know that Orthostatic Hypotension was a different diagnosis than POTS. I wonder if one can have them together or if I am dealing with something else entirely?? Ugh. So frustrating!

[Brye]

Glad you found this forum, it's been very helpful. I grew up in WI and actually worked at UW Hospital for years. I spent 3 years working on the cardiac unit actually, how ironic I have POTS now. Hope you find a good doctor who can help. I have 4 kids and my symptoms came on after the 4th was born. I can look back as well and see early signs, even in college. I was about 35 when I was diagnosed. It got better for me. Not perfect but I can function and my symptoms are tolerable now.

My beta blocker (atenolol) is really my key med that I can't even miss a dose of. Midodrine and florinef have been helpful for me as well. It i took me a long time and numerous doctors to find the right combo for me. My drugs still need frequent adjusting but I'm happy with how far I've come. It took about 5 falls in the shower before I finally gave in and bought a shower chair. Best purchase of the year.

Wish I had some brilliant cure but hope you find something that works for you. It's so scary when you can't keep up with your family!!

Brye

[janiedelite]

Orthostatic Intolerance is an umbrella term that covers specific subtypes such as POTS and Orthostatic Hypotension. You can have both POTS and OH simultaneously.

[icesktr189]

Yup I have POTS and OI. My OI symptoms are way worse than the actual POTS (heart racing, ect)

[HopeSprings]

Ok, I thought the terms OI and POTS were used interchangably, but OI does seem to cover more. However, with regard to OH I keep reading over and over that POTS is diagnosed in the absence of OH.

[jenglynn]

Brye,

Since you worked at UW- (Madison I am assuming??) are you familair with Dr. Tomothy Kamp? That is the specialist that my insurance approved for me to see initially. If that doesn't go well, then I can see one in Milwaukee (not sure of name) and then if all else fails they "MIGHT" approve me for Mayo but that is a long process. Just wondering if Dr. Kamp was someone you had heard of and if you knew if he had any POTS expertise. Thanks so much!

And yes! With kids it is such a hard condition to live with, isn't it? I constantly find myself apologizing to my kids because I am missing out on so much and cannot do the daily tasks that I used to take for granted. I can't work any longer and who knows when I will be able to again. It is just amazing (not in a good way) how many things this illness takes away from us... and it goes so much beyond just "fainting" now and then.

[Chaos]

Naomi- That's my understanding too. In fact the doc I see at Mayo told me that Orthostatic Hypotension and POTS were opposite ends of the spectrum, or 180 degrees off from each other. You can have POTS and NMH (Neurally Mediated Hypotension)but from what I've heard and read you can't have POTS and OH because POTS is the heart rate increase without a drop in blood pressure >20 systolic or >10 diastolic points. When you have POTS and NMH, (at least in my experience) you have the heart rate increase that indicates POTS while maintaining BP and at some other point in the testing you have a major drop in BP and HR.

Having said all that...I'm liking the term Orthostatic Intolerance more and more these days since it seems like I can have a LOT of symptoms and a really bad day even if my HR and BP are relatively stable. Likewise I can have wacked out BP and HR and not feel too badly.

[jenglynn]

So maybe I should say I have orthostatic intolerance instead of hypotension. It is just my mistake in my wording then? Because those of you with OI do get low blood pressure correct? Could someone explain the difference to me between OI and OH? I can't seem to find the right definition. Thanks so much!!! Seems like I have done so much research and since joining this forum I realize I have so very much to learn I feel so lucky to have found you all and your individual wealths of knowledge!!

[HopeSprings]

There was some conflicting info when I looked up these terms, but this is my understanding. OH (orthostatic hypotension) is when your BP falls more than 20 points upon standing. Orthostatic intolerance (seems to be a broad term) means you get unpleasant symptoms brought on by standing. And POTS is more specific to the tachycardia (more than 30 beats) you get when standing. Many of us have low BP in general, but that's different from a rapid DROP in BP upon standing. I'm thinking a person with OH would get the rapid heartrate in response to the fall in BP - the reasons for tachycardia in POTS are different. Not that it's not POTS (i'm no expert), but just make sure you end up with a Dr. who knows about all this stuff! This is from Vanderbilt's page:

Orthostatic Intolerance/Tachycardia (POTS)

When orthostatic symptoms occur in patients, but blood pressure does not fall as much as 20/10 mmHg on assumption of upright posture, the patient has orthostatic intolerance (OI). Additional criteria used for the diagnosis of OI at Vanderbilt’s Autonomic Dysfunction Center include an increase in heart rate of at least 30 beats per minute with standing, and a standing plasma norepinephrine level of at least 600 pg/ml. Because upright heart rate is usually greatly increased, the term Postural Tachycardia Syndrome (POTS) is also used.

[Brye]

Not familiar with a Dr. Kamp. I live in Arkansas now and there are no specialists near here. I actually had an appointment scheduled with an EP doctor who sees POTS patients at one point in Mequon and I had to cancel it because my insurance wouldn't cover it at the time. He was out of network of course and I had to see all possible in network providers 1st until they all gave up. Frustrating! In the end it worked out for me though because I found one in network I actually like and it's only a 3.5 hour drive. Not too bad.

Holidays really are hard for me. I feel like I'm eeking by in life as it is and it just adds one more thing I have to take care of. I've had POTS now 4 years though and I've made a lot of adjustments. I can't work so I was granted disability and that money goes toward med expenses, extra child care when I need it, and my house cleaner. (critical decision on that one) I do have a lot of guilt when I can't play with my kids. They are wonderful kids though and are handling it really well! Thank goodness!! Let me know who you end up seeing. We have family all over WI so that's probably where I would try to go if I decide to pursue more answers. Right now my symptoms are pretty tolerable.

Take care!

Brye

[jangle]

After reading your story, I no longer feel any desire to moan about my own symptoms. I know it brings you no comfort to hear this, but your case seems like a severe presentation of dysautonomia. I think you would be best served visiting a Mayo clinic where people who're experienced with your condition can spend a length of time finding the correct management. There are other things that can be tried and I hope they will be of use to you.

It's inspiring that you are still furthering your education and pursuing a graduate degree and I wish you all the success you can have there.

Please update us on your status.

[mwise]

Hi Jennifer,

My heart goes out to you. As some of the others have shared, you may need to work with the right combination of medications and treatments. My BP was like yours when I so called crashed and burned at work by passing out, hittting the floor, coming to after a few minutes and being taking to a hospital in Cleveland, Ohio where I was diagnosed with Orthostatic Hypotension Dysautonomia (Autonomic Neuropathy) by a TTT, QSART Test and a few abnormal labs in Dec. 2010. My BP during my hospitalization would drop upon standing like yours to 50 or 40/20-0 with symptoms of being ready to faint-lightheadedness, fullness in head, shortness of breath, weakness in legs & body to dropping right in bed. As long as I was lying down or sitting, I was fine with a low BP of around 100-90/70-60, but if I stood up-BP dropped to almost nothing to passing out. I also lost 30lbs in 10 months before I crashed & burned. The 1st medication they tried was just Florinef, but the side effects were horrible for me. I was taken off of it. I like you survived on Yogurt Smoothies and a bite here & there of food. I was also diagnosed with Gastroparesis and put on a low fat/fiber diet. I was started on Domperidone 10mg-now on 20mg before meals & at bedtime to help with nausea & motility. I like you spent my day crawling back & forth to the bathroom and on bedrest. It took almost 21/2 months before I began to turn the corner and was actually able to walk again short distances thanks to Mestinon and Midodrine & a combination of other medications along with homeopathic treatments of vitamins, etc...I have had a few adjustments with dosage of Midodrine, but have some normalcy of life. I am back working full time even though I do have a desk job, I do go out shopping but time my shopping excursions usually with someone just to be safe. The summer was a struggle because of the heat. I tolerate cooler temperatures much better, except if it is too cold. I have good & bad days and adjust accordingly. I just take each day as they come and make the best of them. I am hoping something I shared may help work for you and get you back on the right track. PM me if you want to talk further. Good luck and I hope they find something that will work for you.

[Trach]

Another alternative, I understand that Dr Thomas Chelimsky formerly from the autonomic center at Cleveland Clinic is now at UW Milwaulkee. His wife, Dr. Gisella Chelimsky is joining him in January. I have several friends who have had very good experiences with the Chelimskys.

[POTSMama]

Jennifer,

I have no advice to offer, but just tons of sympathy! Sounds awful what you are going through! With 6 children and a master's program and this going on, I'm sure your feeling very dispirited and depressed - - easier said than done, but try not to get too depressed - - there is hope.

When my POTS first started, it was awful - - I passed out while teaching a class and grew afraid to drive because of dizziness. But I had no kids then so that helped. After I found the right treatment, I can tell you that I spent a good 10 years with my POTS under control (in my case, what worked then ws atenolol & clonazepam only during episodes, lots of fluids including guzzling water and Gatorade, avoiding much alcohol, salting my food liberally, and getting extra sleep). It took awhile to get to feeling better though - - when I say awhile, it was months so you may have to be patient for now.

Unfortunately, now I seem to have developed mast cell activation and so the POTS (and mine is hyper) is again flaring horribly (although my symptoms are different from yours and I don't reach syncope), and I have 3 kids now and a busy job. So yes, I am very sympathetic. I have never figured out how the terms OH, OI, POTS, NMH really fit - - in my case, I get episodes where the BP falls out OR rises when I stand, although the HR almost always goes up when I am standing or walking. But I can even get episodes where my BP and HR go up and down drastically when I'm just laying in bed. Go figure.

Anyway, here's hoping in 2012 that you and I both get into control; a remission of symptoms.

Carol