New Member Introduction (long)

[POTSMama]

Hi,

I hope this is the right place to introduce myself - - if not, my apoligies but I couldn't find an "introduce yourself" spot. I am a new member who hopes to mainly "lurk and learn" but also to occasionally post/participate as time permits. I'm a 45 year old Ph.D audiologist (specialist in ears/hearing) currently working out of home (with occasional business meetings/trips only) as a part-time consultant to some biomedical companies. After a long and active full-time career as a researcher and university professor (I admit I'm a "type A" workaholic), I met my husband in my late 30s, we married and had a beautiful healthy biological daughter (Tessa) when I was age 41. Last Fall, at age 44, we adopted another beautiful little baby girl (Laura) from China. We have a happy marriage, great kids, and to my delight I'm making good enough money as a consultant that I think I can stay home with the kids and keep doing this for a few more years. We have moved to Colorado, my beloved home state, where I can be near my elderly parents and other family. Everything in my life would be the best it's ever been (I had quite a few years with several "Mr. Wrongs" before finding my "Mr. Right"/soulmate, and I truly love being a mom and home-based consultant), EXCEPT.... (and this is a biggie, of course)....

I just got a tentative diagnosis of NCS. As a medical-related researcher, I have naturally been reading everything I can find on dysautonomias and have decided that POTS also fits my symptoms as well as NCS (I have read you can have both, or it is still possible my diagnosis is not correct as my cardiologist is not a specialist in this area - - I have the tilt test tomorrow morning which may help differentiate these and firm up the diagnosis, I hope). Although I am obviously not thrilled to find out I likely have an incurable and potentially debilitating illness, and my symptoms have recently gotten worse and quite problematic for a busy mom of 2 kids under age 5, I am almost relieved to finally have a name for it, and thank God it usually isn't fatal. I have struggled with symptoms off and on for 15 years jow and have had diagnoses ranging from "hyperactive adrenal gland but not pheo tumor" to "panic attacks" (and I knew I did not fit the pattern of that even though I can become very anxious during an episode) - - mostly I was blown off by physicians because my physical exam findings were always normal except for blood pressure and heartrate fluctuations.

Here's my history: At age 30 I awoke in the middle of the night (a loud noise outside scared me) with my heart racing, light-headed, and shaking all over - it was terrifying but passed. That was my first symptom (unless some severe sweating attacks and swollen lymph nodes a year earlier are related - I haven't had that since). I was a professor at Vanderbilt Medical School at that time and nearly passed out in front of my class the next day with a similar feeling of tachycardia/light headedness/heart fluttering. Evaluation at the time led them to say my heart itself was fine (although I had a lot of PVCs and a 10-beat VT run on a holter monitor), but that I was probably just hyperadrenergic and they put me on betablockers (remember that this was before POTS was recognized as an entity and before Vanderbilt became a major center of research on it). Later I moved around to several other states and was told by more doctors that they either didn't know what it was or that it was anxiety, and I was repeatedly told to just stay on betablockers (various types for 14 years: atenolol, metoprolol, inderal) and to mellow out. I could go symptom-free for months at a time and even take the betablockers only sporadically, then have periods where I had frequent mostly night-time episodes that consisted typically of transient very high blood pressure and tachycardia and muscle shaking (I think a REM sleep flood of adrenaline triggered them) - then I'd take the betablockers daily. I wasn't having many daytime symptoms then except an occasional passing light-headedness and periods where I felt my brain was in a "fog" and I wasn't thinking as sharply. I started entertaining the notion that maybe I really was having panic attacks and over-anxious and I started doing relaxation and meditation, and even had a little counseling - - but it didn't stop the symptoms. Then I got married and pregnant and during my pregnancy, I felt absolutely the best I've felt in years (I stayed on a low dose of the betablocker atenolol as needed to control the high blood pressure I had at the time) - - I and the baby were fine except I developed gestational diabetes so she was a large baby with a tough vaginal delivery. My tachycardic/episodic blood pressure fluctuation symptoms returned, though, about 6-9 months post-delivery.

Then during the last 6 months to a year, things really changed and I couldn't ignore my symptoms anymore. I was having nightime but now also daytime severe dizzy spells that were different than before and very scary. My blood pressure would first drop out (e.g. 89/46 with a 45 pulse) and I'd feel like I would faint, then rise very high within 5-10 minutes (e.g. 158/110 with a 100 pulse) where I would start shaking all over and my thigh muscles would cramp) then normalize (steady about 120/80 with a pulse of 70) perhaps 10 minutes later. I had bought a cuff and started monitoring myself some years ago at the suggestion of my husband who is also a medical researcher so I was recording these things for showing the doctor. I was also having severe shortness of breath (dyspnea), vice-like pressure around my chest (angina), a weak pulse, and a feeling that my heart just "wasn't pumping right". And I now was running mostly lower end blood pressure daily (e.g. 108/70, although with variable pulse) when previously I had tended toward high blood pressure (e.g. 145/95) even on the betablockers. With 2 little ones under age 5 and feeling chronically exhausted now and scared, I went to another cardiologist at a large south Denver heart center a month ago. Finally, someone who took me seriously! To our dismay, however, he reported that I had very low cardiac output, which he thought was due to suppression from long-term use of the betablockers. Three weeks after he took me off them completely, testing (stress echo/echo, ambulatory blood pressure, cardiac monitor) showed normal cardiac output and function again (thank God) and my dyspnea and angina went largely away (recur during episodes only). However, now off the betablockers, I am having LOTS of daytime and early nighttime episodes of wild blood pressure and pulse fluctuations and a racing heartrate and chest "flutter" (I don't actually pass out but come close, and get very shaky all over which may be part anxiety). The daytime episodes fit NCS although I'm only near-syncope (don't actually faint), but I do think POTS is also possible because when I get up in the morning or up from a chair my blood pressure goes up only a little but my heartrate can soar like 40 bpm just walking across the room and drop again once I lay back down - - also, I get episodes lying down (supine) sometimes too.

I take the tilt table test tomorrow to (hopefully) confirm the diagnosis, but we are fairly confident this is it. After tomorrow, the doc is going to try to put me on some meds to get this back under control again, but without overly suppressing my heart output again. By the way, during the last 15 years I have also suffered occasionally with migraines and irritable bowel syndrome. I had a hysterectomy after my daughter was born due to delivery complications, and I believe I may be in early pre-menopause which may be why the symptoms are now worsening. My mom, who I resemble genetically, suffered from tachycardia episodes that started during menopause, but she had no other symptoms until she developed some blood pressure drop-outs with standing when she was in her 70s.

The cardiologist said to me that I should best not be home alone with my kids in case I pass out, but I have yet to ever pass out, I drop to the ground when I feel dizzy and it passes, my wonderfully supportive husband keeps calling and checking on me, the neighbors are alerted, and my 4 year old knows how to dial 911 - - we just don't have anyone who can come stay with me all day every day so I'm praying this resolves quickly enough when I get on medication again after my tilt test tomorrow (I don't want to scare my 4 year old and our 19 month old whose only been with us 8 months now, so I keep a happy face even when I feel awful - - but it's tough sometimes!). I have cut back on work hours and let the house go some (hard for me, as I'm a perfectionist and a bit hyperactive by nature - - I tend to pace rather than sit when I have nothing to do). The cardiologist has me adding salt to my diet and drinking Gatorade. And I'm exercising mildly again (I am of normal weight but out of condition since I quit going to a gym some years ago). I'm trying to get more sleep. Are there any other things I should be doing to help until the meds (hopefully) kick in?

I know many of you understand, and I admit I am feeling a bit depressed, although not horribly so, but as in "Why me? Why now?" (my husband is a Type 1 diabetic, so we already have to deal with one chronic illness, although he is well-controlled and healthy with no problems so far). But I'm just trying to stay positive and assume that once we get me back on medications, I will be manageable. My doctor said I need "to be patient as it may take a long time to get the proper dosage and medication". Can anyone tell me how long it took them to get back in control after getting out of control like I apparently have? I mean, am I talking weeks or months here, or does it vary by person? Anyway, thanks for letting me spew and ask a few questions - - I just needed to tell my story to persons who would understand I guess, and I got really way too wordy here - - I promise that if I post again, it will be just short and to the point!!

Sincerely,

Carol

[Michelle Sawicki]

Hello Carol,

Welcome to the forum!

You asked about things you could try until the meds kick in. We have a page that explains what may help people with POTS and another that explains what people with POTS should avoid. If you haven't already done so, you might want to read them:

http://www.dinet.org/what_helps.htm

http://www.dinet.org/what_to_avoid.htm

Asking "why me, why now" is probably something everyone on this forum has done at one time or another. Know that we are here to listen to and support you.

I think the amount of time it takes each person to start feeling better can vary widely. Sometimes the first medication tried works wonders, other times the person has to experiment with several different meds before they find one that is right for them. Hang in there, research shows that most patients do improve with treatment.

Michelle

[POTSMama]

Thanks, Michelle. I already feel better just having unloaded my story - - sometimes it just helps to get it out and complain a little. I'll go read those sections you mentioned, and thanks for the encouragement!

Carol

[briarrose]

Carol

Welcome to this great forum and also informative website.

Your story is like so many others. People wait for over a decade sometimes for a diagnosis. Many doctors don't like to admit that they don't know so they tell you that it's mental and you need to see a therapist. (Love that one!) NOT

I was diagnosed with pots 1 1/2 years ago, started with the tachycardia 11/01, but actually had syncopal episodes starting with my first pregnancy back in 1983. For years I passed off my symptoms as normal. My doctor's wouldn't listen to me, they just kept saying it will pass. I was miserable for over a decade with the worst joint pain that you can imagine. After I was diagnosed with POTS, I went to Ohio to see a doctor who specializes in this illness and he put me on a medication for the pain. It was the first true relief I have had since 1992. I had traveled from Oregon to NY to see rheumatologists. They all wanted to put me on different medications (some with very nasty side effects.)

My mother has had NCS for about 10-15 years. As a nurse she used to pass out on the floor walking back and forth between patient rooms and the nursing station.

She was diagnosed this year with POTS too.

I have had many of the same symptoms as you. Although your the first person that I've come across that has the VT too. I was nervous when I found that one out, mine was only 6 beats.

Isn't it funny how doctors actually convince you that you have a mental problem even though you know that it's not the case. They work on you for so long that you actually start believing it. I was recently very pissed at my doctor and I told him so. He turned around and said, "you know, patients with your kind of anger really do need counseling for their chronic illnesses." I said to him, you know, doctors that don't listen to their patients should have the same. I told him that i had a right to be angry with the system, that it was a normal response!!

You sound like POTS to me. You know some doctors are comfortable with the poor mans tilt and don't even send you for testing.

As far as your dizzy spells and feeling faint. I experience that alot and do the same thing, it's helpful to elevate your legs when your on the floor, so you can get blood flow back to the heart and brain. I sometimes have to crawl to the restroom at home when I'm really sick.

I developed anemia. You should ASK them what your hematocrit is, they usually don't tell you even when it's abnormal. (Actually getting a complete copy of your medical records would probably be beneficial. Anyway, it got so bad that they finally put me on epogen and IV iron every week. After 3 weeks of the iron, I felt so much better. Many females lack necessary iron, but doctors won't normally test for it. Mine was nearly non-existant. I was so hypovolemic that it was causing the severe dizziness, ears ringing and syncopal feeling.

Compression hose might be beneficial for you. Drink plenty of water, gatorade, I thing V8 has a high sodium content, my doctors actually tell me to put a little extra salt in the gatorade.

Everyone is very different here. Some people respond to meds better than others. Some people are so chemically sensitive that they take less then the minimal dose suggested for medications. Everyone has a different story and symptoms. For me, just when I think that I have seen my last new symptom, something else comes along. Some symptoms are scarry and others are just annoying.

Don't worry about being wordy, you post was great and very informative. This is a good place to let off steam, get information, meet nice and caring people.

It's nice to meet you

steph

[opus88]

Hi, Carol!

I wonder if the Gatorade might be at the least not helping, or at the worst, causing some extra trouble. Some of us with this bizarre set of symptoms have found that sugars (even natural) and carbs can trigger an adrenaline rush, which may in turn trigger the racing and pounding heart. Just a thought. If you are trying to add electrolytes, you might want to consider Emergen-C drink powders instead. You can get them at health food stores and even some grocery stores, or on the web.

Good luck with your test - I hope it tells you what you need to know.

[POTSMama]

Steph,

Oh, that's interesting - - actually I was diagnosed earlier this year as "borderline anemic" (don't know the numbers) but didn't mention that because I didn't think it was relevant. I had gone to my family physician complaining of severe fatigue (which of course I now know was the NCS/+probable POTS). I'm mostly vegetarian (I do eat fish) and she thought that was why I was anemic and that was why I was tired - - so I went on supplements for a little while but didn't keep them up. So anemia may be related to POTS' hypovolemia? I think I'll go back on my iron supplements after my test tomorrow, with my doc's approval (I may suggest he re-test me to see if I'm still anemic too). We do sound similar except the muscle/joint pain you've had, which fortunately I haven't.

Did you see Dr. Grubbs in Ohio? I keep coming across his name on websites as a specialist there. There appear to be NO specialists anywhere near Denver, Colorado where I am (if anyone knows one, please let me know!). But I was telling my husband that since I'm an alumni-faculty of Vanderbilt, perhaps if I am not satisfied with my treatment outcome with my doctor here (who seems O.K. so far, but we'll see how he responds when I tell him this week that I think I might have POTS rather than/instead of NCS, depending on my tilt table results - - the question is, will he be open-minded and help me sort this out, or just proclaim I shouldn't self-diagnose), perhaps I could fly out to their clinic for a few days evaluation since they are doing so much research on this. I am not against going elsewhere, but it makes sense to see what my doc here can do first and give him a chance since I haven't tried going back on any medication yet.

Re: V-tach - - in my reading/research the last few days, I don't know where I came across it, but I did read somewhere (not this website) that non-sustained VT episodes have been seen in some POTS patients (I had an "a-ha!" feeling when I read that, since that had been such a concern 14 years ago during my first testing).

Opus88,

Actually so far since I've been on Gatorade, I've been feeling a little better. I had actualy been keeping a "low to no salt" diet for quite some time, as my father has conventional heart disease (artery blockage, etc) and I thought I was doing myself a health favor! Didn't dream I might need MORE salt. Also, I used to drink mainly tons of water (which may have been too much), and coffee/tea (which are dehydrating). Now I've been happily adding salt to my food, munching on potato chips (yes, I know, those aren't the healthiest way to go for salt addition, but I need some pleasures, ha!), and drinking Gatorade. I've also cut back a bit on plain water and cut way back on coffee/tea for over a week. Knock on wood, I actually feel like I'm having less often and less severe episodes the last couple days (relative to the last 2 weeks) - - of course, this may be meaningless and only time will tell. I'll definitely look into electrolyte replacement solutions with less sugar (I know you can make your own - anyone have the recipe?).

This group is great! My first day and I already have so much useful info and feel so much less alone with this! (darn, here I am being wordy again). Thanks!!!!!

Carol

[ethansmom]

Carol,

Welcome to the board, I am so glad you found us Here you will find so much support and good advice that will really help with managing your illness.

First of all, let me say that I think it sounds like you are doing a great job balancing work, motherhood, and your health, and you have obviously done your homework. I think education is the first and most important step to feeling your best, and I have to say since I've found more information available and more support, I have been able to feel much healthier than I was at first. I got sick almost 3 years ago, and I was literally bedridden overnight. I went from working full time and going to college to laying in bed and couldn't even bathe myself. I found a cardiologist who diagnosed me with POTS and we tried various treatments and medications, and to this day I have to adjust meds and dosages on occasion. I think it's an ongoing struggle for most of us to find the perfect treatment- but it sounds like you are doing all the basics (gatorade, salt, getting rest, low impact exercise). What really helped me overall was my pregnancy, like you I felt great and enjoyed that time, but was a little disappointed when my symptoms came back around 7-8 months post-partum. That was a year ago, and I've been fairly stable since then but it is a constant challenge running after a toddler every day I also work from home because, although I've tried, I can't seem to hold it together working full time or even outside the home since I got sick. I also go to school, so the combination keeps me busy enough. Staying busy and living a full life is the best advice I have been given, and I try to follow it because then I don't think so much about myself all the time.

You were asking what else you could try- I know the links given above are very helpful, but I was wondering, do you wear compression hose? Many people find that it helps their standing time and lightheadedness & blood pressure drops. I personally have only worn them when I fly and have never had any trouble.

Well, good luck on your tilt table test...let us know what you find out, and we hope to see you around often, feeling your best

[Guest Julia59]

Welcome Carol!

Your story sounds simular to mine in some ways---as of the progression of your symptoms anyway---MY Bp would only get high with the hyper adrengic attacks.

I hope you will have success in getting your symptoms under control. So far it looks like your learning a lot about dysautonomia. It took several months for my diagnosis of POTS---but I feel very lucky, because I have heard of people who have gone YEARS........

I have also been on beta blockers for 14 years, and it somewhat concerns me regarding the cardiac output thing you talked about. I sometimes feel like my heart can't handle taking a walk around the block. Old ladies pass me by--

It sure sounds like you have accomplished a lot in your life in addition to having two beautiful children. Your husband sounds supportive also. And to work out of your home---what a blessing that is!

I have also self educated myself quite a bit on dysautonomia----but I still often get confused on the workings of the ANS---as it is so complex. I think the involvement of the endocrine system really screws with my mind the most----you know---the old egg or chicken first thing..............

Good luck on finding a Doc that knows about the complexities of the ANS. I am fortunate that Dr. Grubb in just a couple of miles from my home.....I know that there are more Docs out there that seem to be learning more about the ANS and issues with dysautonomia. Hopefully you will be able to find one in your area.

Don't feel that your story was too long. Many of us go so long without a diagnosis that our story could be many pages---if not a BOOK! LOL

I hope to hear that your symptoms are under better control soon-----take it one day at a time.

Julie :0)

[blackwolf]

Welcome Carol,

Don't worry about "ranting" we do it to!

I too have many of your problems, I was told "It was all in my head" so much, I nearly had a nervous breakdown. I was lucky enough to have a really nice PAC in the small town I lived in who took good care of me and got me to a Doc that accually listed. Unfortunately, when I lost my job, we lost our home and had to move to a bigger town

You seem to know your stuff, this site is great. If they don't have it they know where to go.

My first symptoms where both Tachy and orthostatic hypotension(OH). I also have fibromyalgia, vision diturbances, GI and bladder trouble. My heart does its own thing and can go from 25 to 175 when it wants. Right now the heat is my biggest enemy. I'm so heat intolerent. My worst problem is really what I've missed with my kids. My son (Andrew) is 10 1/2 and my daughter is just 7(Lorrie). I've been fighting this for 4+years, that's just been the worst of it, I think some of my problems started before that(about 7 1/2 years ago).

Enough about me, welcome

Blackwolf

[Ernie]

Hi Carol,

Welcome to this nice Forum. I am too tired to think straight but I am writing to you tonight to wish you good luck for your TTT tomorrow. I hope that you find your diagnosis and proper medication.

Hugs

Ernie

[briarrose]

Carol

It's not uncommon to have anemia of chronic illness. Women tend to have anemia more do to menstration.

Most of us deal with extreme fatigue too. Chronic fatigue syndrome tends to overlap POTS or I should say that they are finding that CFID'S patients probably are suffering from POTS. (What came first the chicken or the egg.)

Hypovolemia is a decrease in blood volume.

I do see Dr. Grubb, thank goodness for him. I fly from Oregon to Ohio. He has been the best thing. There isn't anyone on the west coast that specializes or has been trained in this. Believe me when I say that it's important to have some background knowledge on dysautonomia and POTS. When I went to him, he looked at my med list and said oh we don't use these meds anymore. He has given me back some of my life. I was ready to quit my job and be bed-ridden. I was so fatigued that I could sleep over 20 hours a day.

If you come across that article on V-Tach, I would love to read it too.

OK, I'm at work and can't concentrate on what I'm writing anymore. Thx for your response and I'm sure we'll chat again.

steph