Jackie

Well how about a mother who suffers definite autonomic problems who had mono, strep, EBV, etc. all at the same time which lead to a dx of chronic fatigue 14 years ago but who was treated as "anxiety" and kept telling me last year that I was having a nervous breakdown....yuck is all I can say. Family members are in as much denial as the doctors sometimes I think because they ingest the garbage the docs feed them. (Geez I have attitude today...sorry!)

Best answer - 1. don't know and 2. would like to

I had a positive EBV titer last fall but there is 1 for the antibody or whatever and 1 test that shows if it is active...mine was not active but my antibody titer was high positive meaning I suppose I've had it I guess. I've had trouble with fatigue for the past 12 years really that I can think of which came on after a pelvic infection and do have chronic sinusitis but as for chronic sore throat or swollen lymph nodes I don't think so. I did however live with my parents at the time my mother had strep and mono and EBV all at the same time and she was later diagnosed with chronic fatigue syndrome and has never been the same (wow I guess about 14 years ago now - she was never tilted but has classic autonomic problems). Anyway, I just figured that my titer may be positive because I was exposed to her when she was so sick ??

Ooops, April, also, what other meds are you on? Did you have any kind of anxiety-like problems when your electrolytes went out of whack? Just curious if you don't mind my asking. Thanks!

April - Do you have to take a potassium supplement now that you are on Florinef? I was worried about that because since I was at my worst last summer and early fall my electrolytes have seemingly balanced out and I was glad to be off the potassium supplements because they made me feel sick-like. I know potassium supplements are recommended for those on Florinef because increased salt can push potassium out so since you had the same problem as I did (normal sodium and low potassium) I was wondering how your potassium is holding up on the Florinef. Thanks for answering my post!

Just some other interesting information I found: Renin activity is elevated in primary adrenal insufficiency because a lack of aldosterone causes increased renal sodium losses. This lowers blood sodium levels and decreases the amount of fluid in the blood (which lowers blood volume and pressure), which in turn stimulates renin production. Disorder- Aldosterone/ Cortisol/ Renin Primary hyperaldosteronism (Conn?s syndrome)- High/ Normal/ Low Secondary hyperaldosteronism- High/ Normal/ High Cushing?s syndrome- Low-normal/ High/ Low Adrenal insufficiency (Addison's disease)-Low/ Low/ High Pituitary disease- Normal/ Low/ Normal (When I type this information, it is spread out and looks like a graph, but when it posts, it is all scrunched together....the thing to see is that they are measuring 1. Aldosterone 2. Cortisol 3. Renin and levels of each characterize each disorder) - so when it says high normal low, that means high aldosterone normal cortisol, and low renin...the range is always in the order of aldosterone, cortisol, renin...hope that helps...I can't get it to look right!)

In this article I was reading, it says "Patients with mineralocorticoid insufficiency may show signs of sodium and volume depletion (eg, orthostatic hypotension, tachycardia)." This would seem then to make a very good case for Florinef...my question is, would your sodium levels necessarily be low in your blood work if you have this mineralcorticoid insufficiency? I ask because my sodium levels were always within the normal range (it was only my potassium that was going out of balance when I was the sickest). I'm just trying to figure out whether I should give the Florinef a whirl. It just seems to me that your sodium wouldn't be normal if you have this problem that's all...any insight anybody? Much appreciated!

Geez that posted wierd...but if you click on "adrenal axis" you get one, "conditions" is the second, and "adrenal insufficiency" is the third web page...they're just all scrunched up without spaces in between!

Here are a few I found.Adrenal Axis ConditionsAdrenal Insufficiency

Here are a few I found.Adrenal Axis ConditionsAdrenal Insufficiency

Futurehope - It sounds like you had a horrible experience with that doctor for sure! Although I do believe that yeast can cause problems and that possibly some people have gotten some kind of systemic problem with it, I do believe it was reaching...a guess in the dark to try to help I mean on the part of the cardiologist I went to anyway. This guy you went to really had your stomach a mess! Believe me I'm not one to venture into the alternative medicine thing too much anymore for reasons listed below...heck I'm scared enough of conventional medications! For me, I'm not sure it was the Diflucan antifungal tablets that made my stomach hurt so much...I think I attributed it to the horse vitamins but who knows...it probably was a combination. Looking back he also sent me to the health food store to buy some kind of stuff I don't even remember the name of for my chronic sinus problems (saying I wouldn't need so many antibiotics for sinus infections, etc.) but that caused some kind of rash too. I don't know about others here but I've NEVER had any luck with things from a health food store. The calcium and magnesium liquid I took last year that threw me into all my problems came from a health food store and I was told by a couple doctors not to take things from places like that because they are not regulated by the FDA and you don't know what in the heck you are getting. As for asking your doctor about the Renin, that would be great! Also, though looking for an update to see how your tests came out! P.S. I was reading an article last night after this stuff got me to thinking...I'll have to find it and post it because I believe it said that the cortisol challenge test (I think the one you had) shows if your adrenals aren't reacting at all (?) but there are still other tests....maybe for some of us, they work, but they aren't working always adequately or something? I'll have to look for the article because I can't remember everything it said.

Hmm this is interesting and I have a comment to add. When I had an episode of persistent tachycardia and all the symptoms of POTS about 3-4 years ago after taking a small dose of prednisone, I went to see a cardiologist who did that cortisol challenge test (I believe is the same test futurehope is talking about below). He is a cardiologist but practices some alternative medicine evidently because he felt that yeast might be playing a role because I had been on antibiotics for sinus infection when I had the allergic reaction to antibiotic which required the prednisone and had persistent diarrhea with the tachycardia so he gave me Diflucan and these mega vitamins to take. I took this stuff as much as I could for a couple weeks and then started having really bad GI distress so I couldn't finish the course he had prescribed and after having to reschedule my appt. with this guy a couple times because of my work schedule, his office refused to take me as a patient (horrible story recanted somewhere here on the board)...but anyway. My point of all of this is this...I still don't know the results of that test (duh...guess I should call and find out huh? I think he at least owes me that much) but also when I was sick last year when this all started again from taking calcium of all things and I had persistent tachycardia, diarrhea, excessive thirst, urination, etc., after waiting weeks to go see this jerk cardiologist I'm talking about above (for the apointment where he told me he wouldn't take me as a patient because I rescheduled in the past and then please pay on your way out...no help nightmare)....I went home and decided to give his prior treatment regimen a try since I had some Diflucan at home. When I took the Diflucan, I actually got worse with just one dose and the thirst and urination that had seemed to settle down started back up full force. The only thing I could find out about Diflucan on the internet that may be significant was that it causes a slight increase in ACTH which shouldn't affect anybody really but evidently my body reacted to it quite strongly. When I had that thirst and urination thing it seemed to line up with inappropriate diuretic hormone release or a diabetes insipidus-type of syndrome or something but needless to say nothing ever showed in any of the blood work I had done at my 10 ER visits or during my hospitalization last summer but then again I don't remember if they looked at those things. I know they did CTs of my kidneys with contrast (twice) and did 24-hour urines looking for different levels of things because my electrolytes were out of balance but as far as adrenal hormones I just don't know. I do know that my renin was high also and to this day wonder what significance that has but have no doctor to ask. On the blood work panel where it shows the normal levels, etc., there was an explanation that low renin causes high blood pressure so I've strongly wondered if it doesn't follow that high renin would then cause low blood pressure. Hello, what is renin and how do you fix it then? That might be a simple solution to what seems so complex? I just thought it was interesting that's all. I too believe the kidney hormones (in connection with the HPA axis as I stated before) is a definite link to my body dysregulation and symptoms but that is my uneducated best guess from my excursions (sp?) on the internet trying to find information that could help explain the bizarre thing(s) that happened to me which resulted in this dx of POTS. Any info. others have about renin, etc., would be greatly appreciated and interesting to me. I was so shocked to see that others had said they had high renin levels too!

Thanks Pamyla for explanation of MSM. Paige - I get pretty bad leg aches but there is no rhyme, reason or pattern yet determined. (I do have osteoporosis though at 37). They will ache reallybad for 1 day or for days and then not at all for awhile (so I guess no not just upon awakening...they are either aching all day or not aching at all).

If and when you get more information on this or try it please, please update. I'd be very interested to hear how it helps. Like Earthmother said, I'm very much into thinking the HPA axis has a role in all of this so cortisol would make sense for some. I'm curious to know what tests they will do to screen your cortisol levels, what levels qualify to take the cortisol, and how it feels and if it helps if you try it. There is something whacky in that system....I just know it! (and also see veryblue's post about hair growth...she notices her hair growth has slowed down and last year at my worst mine was totally accelerated!...the only thing that got that back to normal was the BC pill for a couple months..couldn't tolerate it..but that proves to me that ye' old hormones were out of balance along with everything else going whacky in my body like electrolytes, HR, etc.). I know it sounds kinda' sick (at least to me because I've never thought of things like this before except seeing it in another post by somebody whose father did this) but since this stuff runs in my family in various subtle and not so subtle ways for many family members, I'm thinking if I survive this crap and they still don't figure out what is causing it by the end of my days here on earth, I think I'd like to donate my body to science for them to see just what in the heck they can find. I only have 1 son and I guess I worry about him developing it. He has "dizzy" spells sometimes and has passed out giving blood before...is always thirsty and drinks a lot...talks about knots in his back and shoulders...feels fatigued a lot...and the list goes on. Not that I don't care to help other people who suffer from it too, don't get me wrong, but for those of us with children, do you especially feel like you would do absolutely anything it took to prevent them from having to suffer the same thing? I know I do.

Veryblue - The symptoms you are describing sounded a lot like me when I was "normal". I've always had lower blood pressures (90-110s/60-70s) and my heart rate ran often in the 90s. Honestly I was used to it. Of course, I was always tired and didn't know why. When I had the "flare" last year...initially my heart would speed up immediately when I awoke in the morning in a sweat and would race all day with my extremities sweating profusely. Then it gradually started to taper to racing at times...stopping...and then starting again for no reason at all (sometimes to 140+) even lying down but this went on, off and on, all day long. I am not sure what my BP was doing at these times but when I would go to the ER my BP was always elevated (for me anyway) in the 130s/? with heart rates into 130s to 150s. No matter what my resting heart rate was there for days and days (usually not under 100 unless I was sleeping) it would always increase dramatically then when I stood up. This went on for months no matter what they gave me to try...Ativan, Klonopin, Attarax, Lexapro (the old anxiety story by the ER and then Dr. Grubb trying to help me with the Klonopin and Lexapro nightmare) and by the time they got through with me with those meds I had gone from sinus tachycardia, to sinus arrhythmia, to paroxysmal atrial tachycardia on my EKGs with nonspecific T-wave abnormalities and always palpitations this whole time with episodes of intense hard heart pounding. I actually felt like my heart was going to give out from being so tired. I lost 25 pounds during these months of torture (late June to early Oct). The only thing I can honestly say the anxiety meds did for me was help me to not care as much or worry as much that my heart was racing (and kind of took away the sensations of palpitations...until they wore off anyway) so I could move around and get to appointments but I was always short of breath and had to lie down in the office while waiting to see the doctor. How miserable. Anyway, the long point of the story is that my heart never "settled down" until I started atenolol some 3-4 months later after the nightmare started but it does also take my BP down even lower than normal for me at times...the strange thing is sometimes I feel symptomatic and it is real low and narrow like 77/65 and sometimes I feel symptomatic but it isn't that low (more like 90s/60s) which used to feel normal to me. I just don't get it. Anyway, wow, I'm really off point, but the hair growth on your legs thing is interesting to me because during this time of most severe tachycardia and illness last year I noticed my hair growing faster...absolutely faster...strange. I could shave and the next day have full hair growth on my legs and they've never been quite that bad before (usually a couple days to get stubble). What helped it slow down again was taking the BP pill for a couple months (which I couldn't tolerate) but still it proves to me that hormones somehow were involved and totally whacked out. It felt like my whole body was sped up...heart, hair growth, digestion (diarrhea EVERY day..everything went right through me), etc. Was this all POTS? Who knows...still don't have answers to all my questions but I wanted to comment on your very interesting observation about hair growth. We sound similar in BP/HR and hair thing too except just the opposite on the hair growth! I definitely felt like my thyroid was involved but the blood tests did not reveal anything significant though my TSH was trending down. Has your thyroid been checked?

"As good as it gets"...the same line has gone through my mind at times but nobody has said it to me yet (with emphasis on yet because I don't quite feel my treatment has even begun even though I was diagnosed months ago as I don't feel I even have a doctor). My best advice, don't let yourself feel limited by that statement nor do it to yourself as I have done to myself at times by asking myself that question...is this as good as it gets? There is power in positive thinking I believe (though getting ahold of that mindset is my struggle)...I just think if I accept a pronouncement of defeat or pronounce it over myself I will be doing myself a disservice...persevere and don't internalize that statement...tell yourself things WILL get better and don't stop until they do.

I second morgan617 - get it checked out and keep us updated.

Thanks for your response. I think it is horrible that your doctor called you an addict. I think for me that would just freak me out all the more. That is what I can't stand about the medical community...if you refuse to take something you are noncompliant and if you take it then you are an addict....you can never win. I fought taking anxiety meds the last time I had what I now know was a POTS flare a few years ago and faired much better because when the heart rate was under control from a beta blocker for 1 week I was fine. This time around it seems to be a viscious circle because I think I could be med free and feel the same as I do now (or before the POTS flare..somewhat symptomatic but functioning) except I'm afraid of anxiety med withdrawal like I went through with Ativan and so I keep taking it. My body just feels different that is all I know...hypersensitive to stress. I'm not happy to hear that you feel times of worry about your husband also but I'm also relieved in a way to hear that I am not the only one. It isn't discussed here at all really in this forum so I think maybe everybody else is coping and accepting themselves so much better than I and that I'm just ridiculously insecure. I know getting sick was not my fault but I still cannot help sometimes worrying that I appear less than appealing to my husband who prides strength and stamina so much...maybe all men do. I perceive that he sees illness as weakness but he denies it so maybe I'm just putting too much on it. He may not be perfect in everything he does and says but overall I really can't complain because he is a wonderful man. I guess I just feel cheated because I never thought I'd ever get married or meet Mr. Right and then I met him. We have only been together 6 years and married for 2 and the whole past year I fell into this POTS hole. I see the changes in myself over the years from how active I used to be, etc., to now and just wish he had seen me before that is all. There is so much to enjoy still in life and do and I just don't feel good for one reason or another most of the time and I get sick of hearing even myself complain so I can only imagine how he feels. Anyway, thanks for sharing.

Pamyla - what is MSM? Just curious. Thanks!

Congratulations!

Dang, and I was about to pack my bags too! (I don't seem sensitive to heat that I know of yet anyway but that would be a heck of a way to find out moving across country:) P.S. Just don't move to the mountains! At least for me, when I traveled to WV about 10 years ago (before I knew anything about POTS) I was absolutely dizzy for about the first 2 days along with my mother...nobody else seemed affected...now it all makes sense!

I'm curious about this too. I was hit in a head-on car accident in 2000 and took the force of the impact in my right leg (which by reflex had the brake pedal fully pushed down). It didn't break anything but the arch of my foot was swollen and bruised for weeks. My arch has never been the same. I wonder if this contributed to this for me too. All I know is that I get a lot of pain in my low back and leg aches far too often...it is like they ache right into the bone and this can happen with no exertion at all. Of course then there are the times that I do something more strenuous than usual and then my leg muscles ache for days. Does anybody have that? I guess I am just totally out of shape but it doesn't seem right for my leg muscles to be so sore just from bending down and carrying heavier than normal objects. Oh well....the saga continues! Thanks for bringing this issue up though because I too am curious about nerve damage in the legs. I know I have blue feet often in the morning and get a lot of blood pooling because my lower legs are blotchy and red quite often so I know something is going on with them unless that is just the normal symptomatology that goes along with POTS which it seems it does for some. Anyhoo...keep us posted if you find anything out!

Thank you both for answering and giving support. I know I was just ranting...it was a very bad week. I guess at times that I feel that stress is exacerbating things I start to double-think everything all over again. It's not that I never had a stressful day before being diagnosed with POTS or have ever freaked out over things when upset, but my body just seems to be so sensitive to it now and that bothers me. Since I've only seen Dr. Grubb once since my diagnosis 6 months ago I guess I still vascillate back and forth between acceptance and denial...I'm not sure which is worse. I truly do believe it is more than "just anxiety" though because when I had to keep a daily log of my symptoms for that appointment with that other doctor last month or so (who has never been in contact yet by the way) I was forced to acknowledge symptoms that were even going unnoticed (since it was a pre-prepared checklist)...things like blue feet in the morning...red blotchy lower legs most of the day. I found out that pain I get between my shoulder blades and into the base of my neck is called "coat-hanger neck pain"...never thought to call it that. I guess I just go along the best I can, some days doing better, some days doing worse, some days taking naps, and other days going for 14-16 hours before I'm tired for bed. Sometimes I like getting out of the house, other times I don't feel like interacting with anybody. Most of all I'm struggling to work from home and only still bringing in part-time income so as well as being curious about adding a med like florinef (which I have the rx for) or asking for midodrine or trying another SSRI (scares the heck out of me) I'm worried on the other hand that I will get worse for trying and lose the ground I have gained. I don't know if anybody can relate to that but these are my fears and demons I guess I live with on days like this. P.S. I also noticed that for 2 months I've had easier periods and less trouble around that time and this past month I know I ovulated (mid-month side pain) and had a much worse period, the hand sweating is back off and on and so is more tenseness and that surge feeling my brain has come to associate with anxiety I suppose. Is it normal to still be in the stage of acceptance and mourn in a way the changes taking place in my body and life? Sometimes I do feel diminished as a person and get angry when I feel I cannot do something. Illness teaches us many things about ourselves I suppose we didn't even know...I never knew I had issues with independence or self-reliance or self-strength or whatever until this happened. I tell myself that my body is just a shell though and that who I truly am is on the inside and that is what counts. When your body has your mind in an uproar though that is when the spirit gets involved I think anyway. It is almost like one part has to take up for the other part or something and that we have to be more spiritually strong if physically or mentally overwhelmed. Oh well, enough rambling. Thanks for your support. Like I said, I was venting and I realize that but it seemed wierd to me to have such a delayed reaction to all the stress but maybe that is how it happens...push, push, push, crash...I know my BP has been up and down and lower than usual the past few days so that probably accounts for most of it. Maybe when it drops, my body tries to compensate and even though the beta blocker blocks the heart from racing, maybe I'm stilling feeling the surge of things released to get it back up (don't know?). All I know is that my legs have been really pooling lately and I've had to take naps the past few days. Oh well, I suppose nothing will improve or change until I do something different but all I feel I can do is wait for my appointment and don't know when it will ever be rescheduled. I suppose I could get on the phone and start calling around to find still yet another doctor....Dr. Grubb is just way way too busy.

danelle - I'm sorry the appointment was not all that you had hoped. I can relate too well to this type of feeling. The thing is, at least for me, that our hopes rise so high because we realize we are finally going to see somebody who "knows"...somebody who totally understands and we are going to get on the path finally to getting all better. I too have cried after appointments...I try and try not to get my hopes up but they do anyway only to be dashed when there is no magic answer coming back. Trying things is scary. At least that is how I feel. I really, really liked Dr. Grubb but I didn't even get the education session you are discussing here. I think he is way too overwhelmed with patients and I feel bad for him. The up side is that you know it is POTS. Truly you know and that helps to the extent that knowing can help. I am in your same boat...have diagnosis...now what. You sound a lot like me except I don't have the mitral regurg, etc. (By the way, I'm only a medical transcriptionist but many people have slight regurgitation of their valves) and it shouldn't be anything to worry about...only in severe cases of regurg is a valve replacement required. Actually, way before POTS and NCS and all of these titles were on the scene, MVP or mitral valve prolapse (which is mitral regurg) was one of the main dxs handed out as an explanation of symptoms and does in fact play a role from articles I have read. (Please anybody correct me if I'm wrong here). Don't be scared. That is the hardest thing to do and the easiest thing to say. I'd love to talk to you by e-mail myself. I was dxd last fall and given atenolol and florinef by Dr. Grubb and never started the florinef...looked forward to discussing that with him this month but appointment got cancelled. I too have a lot of questions I want answered and don't where or how they will be but believe they will be eventually and yours will be too. Hang in there and focus on the positive...you have the diagnosis and you have some meds to try. That is a starting place. (We have a lot in common too because I am on beta blocker atenolol but Xanax instead of the Klonopin). I am functioning albeit not 100%...it isn't easy and I have bad days but I try so hard to look on the bright side...I'm not lying on the couch with my heart racing and flipping thinking I'm dying anymore while the moments of my life slowly tick by so I guess we call this progress!! I'd be happy to talk to you anytime. Keep us up to date as you try the meds. I want to know more myself before I try the florinef and am curious about midodrine instead myself.

Did I spell that right? Once and for all, do any, some, most, or all people with POTS experience panic-type symptoms and if so why? Is this the hyperadrenergic kind? How is that diagnosed? I think my catecholimine (sp?) levels were checked whenI was first sick but from what I've read don't they change depending on standing, etc.? Has anybody just been sitting there (even maybe fatigued of sitting up for a long time or whatever) and just had this feeling of just being uncomfortable...like a surge or something inside like you want to run around the block or something...not that you have the energy or anything just a wierd feeling. Is this panic? Does anybody feel that ibuprofen helps? Just a few questions I guess...trying to figure out if the feelings I'm having are surges of adrenaline or something. Sometimes it happens after I eat candy (which I don't do too often except with a PMS craving and then I might feel it) and I suppose stress could be a trigger, but once I even felt that way after taking my B12 and folic acid supplement. Strange....... Anybody take B vitamins and feel "revved" up inside? I know somebody who felt that way after taking B vitamin shots and just wondered why. It sure felt strange. Since this happened to me last year I'm just so sensitive to everything...birth control pills, vitamins, sugar at times, stress....