bebe127

Lyn,

Thanks so much for your response. I have a lot of thinking to do! I'll try to answer your questions the best I can.

I was dx in 2009 with POTS through a TTT. I met the dx dr. after my first and only ER and hospital visit (If you look on my blog and go all the way back to the beginning, it tells about my entire experience). This was completely out of nowhere and it was a panic-type attack episode, in fact the EMT's said it was a severe anxiety attack and I should probably see a dr. and get put on meds. I had never, I mean NEVER experienced anything like this before.

As far as the meds go, I've been on the BB for about two years and I think it has helped me somewhat although I still get tacky and my bp fluctuates a bit. I still feel crappy most of the time. It's like I have menopause, the flu and a hangover just about every day. I have extremely high anxiety. Good news is, is that I haven't had any episodes like the first few in a long time. Prior to these meds, the only thing I would take is some IB if needed. Probably 10-16 years ago is when I was going to dr.s, having sinus issues and taking antibiotics. Around this time is when the headaches began and I only took medication when needed. Usually, if it didn't work the first time, I wouldn't take it again. So, it's not like I was on prolonged us of OTC and/or rx meds. Once and a while I would try OTC sinus headache remedy, but that did nothing as well. Again, if the meds OTC or rx didn't work the first time, I stopped taking them.

Years ago, I'd been to my OBGYN to see if the headaches were due to my cycle, a Neuro who couldn't find anything wrong through MRI, and an ENT that did xrays, CTSCAN, and an endoscopy and told me he saw no reason why my sinuses would be causing my headaches. I told the ENT about the thick goo and he had nothing to say. I also saw a GP a few years ago (he was a complete jerk) and told him about the headaches. I suggested that they might be due to my sinuses or allergies and explained about the thick goo. His response was, "You and 75% of everyone that lives down here has this same problem." He had no answers or suggestions. No one has ever mentioned allergies. My father and sister have both had sinus surgery to no avail, they still have sinus issues and my sister, brother, and late mother have had migraine issues for years.

When I get "the headache" I can feel it coming on. I can tell that my sinuses on the right are clogged although I can usually breath out of my nose. I can tell sometimes when I swallow because my ear will get clogged. I do not experience aura, I am sometimes light sensative and have to wear sunglasses in the house, especially if I'm attempting to watch tv. Noise doesn't really bother me, sometimes I feel nauseaus because of them, but never vomit. They usually last three days, the pain peaking on the second and by the third day, it disappears. During this time is when I have this thick goo stuff that I blow out. Otherwise, I still blow and blow my nose regularly but it is thinner, and still the milky/clear color. Usually, I have to lie down. It doesn't matter how I lay, mostly I just curl up in the fetal position and sometimes put a heating pad on my face/head. Sometimes that helps, sometimes it doesn't. Sometimes are worse than others. Many times, it's hard for me to sleep, so I just lie there in pain.

I am on Xanax for my anxiety. My dr. told me that this is the best choice for me as I am sensitive to meds, and he also said this is an old, tried and true med that is fast acting. It has helped tremendously with the anxiety although, I still suffer with it, just not as bad as before. Sometimes I have to double up if I know I'm going to be going somewhere. Like this morning, I have to take my kids to their homeschool co-op where I also teach an hour long class. I begin to feel anxious during the week, knowing I have to do this every Friday morning. I make it there fine, although not without much praying and positive self talk. Once there, I usually calm down and can get through the class.

As far as my BP goes, I usually don't take my vitals as often as I used to because that would just cause more anxiety. Sometimes it is on the high side, sometimes lower, but there are still times that I feel crappy, I take my vitals and all is fine. I just don't get it. It doesn't seem to matter what my vitals are, I still feel crappy. I do have night sweats at times. I experience tachy daily, usually worse if I'm anxious. I don't experience flushing that often. I go from feeling cold to sweating usually in the evenings after dinner while I'm on the couch. My feet are constantly cold at night. I've never had swelling, itching or hives. I do have GI issues, but have never had these checked out as I've always just chalked them up to POTS symptoms.

Thanks again for your response. I am going to definately bring all this up to my dr. the next time I go into see him.

Thanks puppylove, already have that one

Any good books that anyone can suggest in dealing with chronic illness, specifically POTS?

Thanks!

Thanks Ophelialit. The thought of going on a new search tires me out just thinking about it. I was dx in 2009 and have never really been treated. My GP is very nice and makes an attempt, but then I read about all these other things, tests and whatnot that just leave me even more confused. To be perfectly honest here, I was hoping that if I just started taking allergy meds (after asking dr. of course) I might feel a difference. I am forever searching for the "magic pill". I am aware that there isn't one, but one can't help but hope!!

Don't know what HRV coherence is, but would like to learn if it means a better understanding of myself and my illness. Could you please explain a bit more??

Thanks:)

Altruism,

I'm so sorry you are having a rough go of it and I'm sure that's putting it mildly. I too used to live in a constant state of fear (can still happen if I don't keep it in check). I used to be obsessed with my vitals, taking them all the time. If my bp was up, I'd freak out, take my bp 5 minutes later and it would've climbed and I continued like this until I worried myself so much I'd go into a full blown panic-type attack and have to call the hubs home from work to babysit me. I felt as though I was going crazy! Finally, the dr. told me after looking at my bp log, to stop taking my vitals all the time, that the worry is only making my symptoms worse. He said I only need to check it twice a day, am and pm. If I get a worrisome read, go lie down and try to relax and take it again in about an hour. This, believe it or not helped so much. I began slowly to not take my vitals as much (of course I would always consult a dr. before making any decision as everyone is different) and pretty soon, I would go weeks without taking them. I didn't feel any better physically and it doesn't seem to matter what my vitals are, I still feel crappy most days, so I figured why waste my time and energy only to get totally freaked out and spaz?

I have extremely high anxiety. It doesn't take much for me to freak out. Mental and emotional stress get to me especially. I've often wondered if I just have an anxiety disorder or if it truly is POTS seeing as my original dx was "probably POTS" after I tested positive on the TTT. No dr. has told me what type I have, how I got it or if it will ever go away. I have, as of late, begun to question everything.

Back to the anxiety...I was seeing a therapist for a short while and while she did absolutely nothing to help me, she did refer me to a book (I might have already shared this with you) called The Anxiety and Phobia Workbook by Bourne. It has some really good information and tips on dealing with anxiety. I refer to it often. One of the tips is positive self talk. I do this quite frequently, especially if I have to drive somewhere. I tell myself everything is going to be ok, my kids can dial 911 if necessary, my husband will come running if I call, and I pray A LOT!!

Wish I had answers for you. I do so hope you get to feeling better real soon. {{Hugs}}

Naomi,

So sorry you are dealing with this. I know it can be so frustrating, I too, have had the "cabin fever" feeling. When I started out, I never went out, didn't drive, missed out on a lot of things. My first episode happened while driving and I was completely freaked out by it and gave me what one dr. called situational anxiety. I was almost an agoraphobe (sp?). Now over the last 3+ years, I'm slowly starting to get back into the things I used to do. I only drive when absolutely necessary and even then it is a huge deal for me. I try positive self talk to get me to where I'm going and once there I usually begin to calm down and can get done what I need to, but I am always looking forward to when I can get home. Home for me is my safe haven. I am a home body by nature, so it doen't bother me too much, but there are times when it does bother me greatly.

I homeschool my two teens, so my day is wrapped around them and schooling mostly with assorted chores thrown in if I'm feeling up to it. I have taken to blogging, although don't do it as consistantly as I would like. I would love to get back into exercising as I haven't for over 200+ days according to my Wii fit. I used to love to paint and scrapbook and do crafty things, but now I spend most of my time on the computer, doing schoolwork, planning for a poetry class I teach at a co-op, reading forums like these, blogging, etc. I do wish I would get out more (not driving mind you) just a walk around the block or something, but I just don't have the motivation nor the inclination.

I totally agree with the others, try to find something you enjoy doing or something new to learn. There are so many things on YouTube that can get you started.

Hoping spring comes early for you

Katybug,

Thanks for your response. I haven't been to a headache specialist. The neuro I went to years ago sent me for an MRI and said that nothing looked out of the ordinary. I've often wondered though, if you go in for the test and you are not having a headache at the time, what is it going to show anyway?? Obviously, I don't know when I'm going to get one and if I got one, there is no way I could make an appt. for dr. and have him rx a scan in two to three days time. Anywho, that particular dr. put me on Maxalt and it did nothing for these particular headaches, didn't even touch them. I took it once for a headache that was coming on (not "the headache", I can tell the difference) and poof, it went away. Still nothing works for "the headache". When I get "the headache", it always seems to involve my sinuses, almost always on the right side, blah, blah, blah.

Kellysavedbygrace,

Thanks so much for your explanation. I'm not sure I know what you mean by issues with other organs. I was dx with "what is probably POTS" back in 2009. I do not faint or have pre-syncopal episodes, don't seem to have blood pooling, don't know if I have low blood volume, don't seem to have issues standing or sitting although tested positive on the TTT. When I used to get what I called "episodes" they were like panic-type attacks. I would get tingly all over, my legs would shake, heart racing, bp up, sweaty, muscles getting rigid in my face and quadraceps. I don't get these anymore. I have some GI issues such as the big "D" often and it is hard for me to eat a big meal and I've lost weight over the last three years, but have never had any of this checked out as I've always just assumed it was due to POTS. I have hearing and vision issues. My bp is all over the map. Originally, before POTS dx, I was dx with hypertension and high cholesterol and put on Norvasc and Niacin, although after my first and only ER visit and hospital stay following one of the above mentioned "episodes" I was told by an electrophysiologist (who later dx "probably" POTS after a positive TTT) and the admitting dr. that I didn't have either hypertension or high cholesterol and to stop the medication. Told me to eat more salt and drink more water, which I did, but all that did was give me high blood pressure. I began seeing a GP (the EP that dx me only dx, does not treat, nor did he know of any dr.s he could refer me to) that has other POTS patients. We fooled around with different meds until finally settling on Metoprolol and Xanax. I am doing a bit better, but not sure if it is the meds or I'm just dealing with my body better or what. I still have a myriad of symptoms: chest pain almost daily, vision/hearing issues, GI issues, sleep issues, high anxiety, tachycardia, fatigue, no appetite, and nausea. These symptoms are daily and I also have other things that are waxing and waning.

I guess I just feel like I'm grasping at straws and trying to figure out if something else is wrong or if I can get to the root of my issues as no dr. I've seen has ever really ruled anything else out. They've all just taken the original dx and concurred. I don't know what type of POTS I have, how I got it or if it will ever go away. One day I was fine and the next my body was going haywire in a way I have never experienced. I have a blog that explains my journey with this whole ordeal. At this point I keep going back to the "probably" and I'm questioning everything now. UGH!

Thanks again.

Thanks everyone for your responses, it's good to know that I'm not alone. Mine occurs constantly and consistantly. It is like E describes, an unrelenting plague of locusts swirling in my head. I wake with it every morning and go to sleep with it every night. Sometimes during the day I don't notice it, but that is rare. It also doesn't seem to matter how I'm feeling or what my bp and hr is; it's always there. It's so annoying. I've taken to reading lips much of the time, as it is hard for me to hear. I also have to put subtitles on the TV, if not, I miss half of what they are saying. If I am watching netflix and have earplugs in, I don't seem to have a problem. Like E and Libby, guess I'll just resign myself to the fact that it's here to stay, and just another symptom. Thanks again

And for anyone else that might be able to shed some light...

I apologize in advance if this is long and rambling.

I've been reading some on MCAD and feel as though I have many of the symptoms, although many more questions. I know this has something to do with histimines in our system. The term histimine immediately tells me it must have something to do with allergies (please feel free to correct and/or educate me at any time!). I have never been formally tested for allergies. I know that I am allergic to Sulfa as I had a bad reaction once. I have always had sinus issues. I have migraine type headaches and have had them for years. The first time I went to the Dr. he told me that my headaches were from sinuses. In my head I dismissed this because I just thought they were migraines as many of my family members suffer with this as well. At the time (I'm going back 16 years, so it's hard to remember) I seem to remember being on atibiotics for a long time to try to clear up a sinus infection. After a month of being on meds. the dr. suggested I see an ENT. I did and he put me on antibiotic for a month. The infection seemed to go away, although through the years have still had issues.

Fast forward...this might get a bit gross

Over the last several years, I have been experiencing these headaches. I always know when they are coming on and in my house they are referred to as "the headache". My husband will ask, "Is it 'the headache'?" They usually last about three days, peaking on the second day. Most of the time they get so bad that I'm in bed for the duration. They are usually on the right side of my face, around my sinus area, eye, and even at times my ear and neck hurt as well as my teeth. Sometimes my right eye will get droopy. I've been to many dr.s to no avail. Weird thing is, is that I have an inordinate amount of mucous when I wake in the mornings. I brush my teeth and immediately have to blow my nose. WARNING, here's the gross part: When I am having these headaches it seems as though my sinuses are packed and full of pressure. There are times when I blow my nose and this thick (like rubber cement) almost kinda milky mucous comes shooting out. It seems to build up and I blow, and I begin the process all over again. I feel like snotting into a petri dish and taking it in to the dr.! At any rate, I blow my nose every morning. Sometimes I have sneezing spells and have to blow my nose. Once this thick, yucky mucous is out, my headache seems to dissappear. I get these headaches about every eight weeks. It's as if it takes that long for stuff to build up and put so much pressure on my sinuses that I get a bad headache.

I've been to GP's, Neuro's, ENT's, have had Cat Scans, MRI, sinus endoscopy, x-rays, used neti pot and no one can seem to come up with anything. No meds that I have taken from OTC headache meds to narcotics to rx migraine meds help. Nothing helps. In fact, probably for the last 10 years I have taken nothing when I get these headaches. I just writhe in pain and wait for it to pass.

So, after that long, drawn out ramble here is a question or two:

Might I benefit from taking Zyrtec and/or Zantac? I've read that these have been beneficial in treating MCAD. I don't know if I have MCAD and I shudder to think of having to search for a dr. that knows about and/or can treat this as I've had such a hard 3+ years in finding a Dr. that knows more than I do about dysautonomia. Anywho, I'm on Metoprolol and Xanax, don't know if these would have any affect on the allergy meds or vice versa.

Am I making any sense???

Any insight would be appreciated.

P.S. I'm sure that MCAD is much more complicated than merely allergies, but that seems to be the common thread in a lot of things I've been reading

Joann,

Unfortunately, no room! I just need to get off my bum and get back into action (she says as she calls son into bedroom for science!!)

Carrie,

You parent from your couch, I parent from my bed. Each morning I get up, have my morning routine, make my bed and set up shop complete with computer, math cd's, books, pens, pencils etc. I homeschool my two teenagers and have done so since the beginning. Although now that they are teenagers, they are mostly self sufficient, however I do have to don the school police hat once in a while to make sure all is getting done

Before I got sick, we used to do our schoolwork in the schoolroom. My hubs converted our great room into two separate spaces, a spare room and a schoolroom. Our schoolroom is complete with a closet-full of every type of paper, craft supplies, science equipment, etc. that one could dream of, a nice big table, bookshelves to house the hundreds of books we enjoy, a computer, and even a white board. I loved doing schoolwork in there and I think it was motivational for the children to have a kind of "school at home" type atmosphere. The table was always full of some or other project we were working on, whether it be lapbooking, an easel with a work in progress, the microscope set up, or the dissection kit up and running for the newest autopsy. There was always something interesting going on in there.

After getting diagnosed, sadly, we use the schoolroom less and less. We still have ongoing projects, but mostly these days, I school from my bed. I want to change this and I think I shall attempt to work on that. Just writing all this down makes me realize how much I miss that schoolroom and something needs to change.

Thanks for this Carrie! This is something I think I really needed

So sorry you were treated this way. I have had such experiences, as many of us have, but you just have to perservere and find the one that is helpful to you and your situation. I know that it can be so frustrating, defeating and deflating.

I wish you luck in your search. Just don't give up and don't for one minute think that this is all in your head. You know you!! I consider dr.s my employees since I'm paying for their services. If I am not satisfied with them, I fire them and move on. It's not worth my time, money and energy to have someone not take me seriously.

So sorry you and your daughter are having to deal with this. Best of luck at your meeting! Good thoughts coming your way

abbyw,

The article came from a fellow postie that has an awesome (in my opinion) blog. http://bobisdysautonomia.blogspot.com/ . Check it out if you have the time. She is a wonderful writer and finds humor in life.

Hope you feel better soon

Thanks Alex.

I don't see that particular "specialist" anymore. Only saw his twice and the second time (follow up) was when he stated that I should consider a therapist. He didn't even suggest any other SSRI's and didn't explain anything to me when I saw him. After he prescribed Celexa, I specifically asked what I should expect, he told me "nothing, you'll just feel like your old self." When I called him on the Sun. morning after I'd recovered from the bathroom floor incident, he just told me to stop, then take it at half dose. When that didn't seem to work, I spoke with his PA and she said that if the dr. wanted to prescribe something different that he would call...he never did. The next time I saw him, some four months later was for the follow up.

I should ask my GP, who treats me now, if there is something else out there that might help. I'm just completely TERRIFIED to try another SSRI for fear that it will have the same affect.

I'm 3+ years out and will not stop until I find someone to help me!

Sorry if I'm piggybacking...

Hope you get some answers cma

So wish I could take SSRI's if it would help! I was put on Celexa and didn't last a week. Had terrible reaction...felt sick to stomach, ran to bathroom, literally rolled off toilet onto the floor and felt like I was going to pass out. Hubs came in and I was drenched in sweat, even my palms were dripping. He had to pick me up and put me on the bed where I felt as if electricity was running through me. I even asked if hubs could feel it (of course he couldn't). Called dr. only for him to say stop taking it and begin in a few days at half dose. Did as was told, but still made me feel worse. Then at my follow up (I'd stopped taking it altogether by then) he told me he couldn't help me and suggested I see a therapist! This was supposedly a specialist in POTS.

Is it that I didn't give it enough time? I know I've read that one might need to be on it for a while before seeing any benefits. What I wouldn't give to feel halfway normal!

Thanks!! So inspirational Just what I needed today!

abbyw,

P.S. The articles in my previous post are intended for you and your personal education. I agree with FarmerAmy in that I don't think that sending him articles will change his attitude, it might indeed do the opposite and if this is your only option for dr.s at the moment, the need for good rapport is important.

I am sorry you feel so alone, but trust me (and the previous responses), you are NOT alone. I would definately keep seeking until you find a dr. that will help. Dr.s tend to give a dx of anxiety when they don't have any other answers and unfortunately, most dr.s don't seem to have the time or patience to help you on your journey to wellness. All too many times, they just want to throw meds at you to treat the symptoms without a clue as to what the root cause is. This is so unfortunate.

I've been dealing with this for 3+ years and still really don't have any answers. My GP treats me with a BB and Xanax. They seem to do as they are intended, but I still deal with the myriad of symptoms daily. One EP I went to who was supposedly an expert put me on an SSRI which I couldn't tolerate, then when I went in for a follow up told me that I should probably seek out a dr. closer to home and look into therapy. I am still on the search for a dr. that understands and that is willing to work with me to get to the root problem and help me. Don't lose hope!! There is someone out there that can help you, it just might take some time. Try to have patience and perserverance (I know this is so much easier said than done).

Here is a library of articles that might be helpful:

http://www.dysautonomiasos.org//journalarticlelibraries/PosturalTachycardiaSyndrome.pdf

Here is an article from a former Neuropsychologist and fellow Posty:

http://www.dysautonomiasos.com/#!psychology-and-dysautonomia/c20ox

Hope you get some answers soon.

Pumpkin,

I deal with chest pain daily, but I'm with Kaybug, it might be too soon after surgery to tell.

I've asked various dr.s to no avail...here are some of the brilliant responses I've gotten in the past:

• "You're too young to have heart problems."
• "The pain you're feeling has nothing to do with your heart or POTS."
• "This will not hurt you."
• "Your tests are all normal."
• "Maybe you should seek out a therapist."

I agree too, although haven't seen the thread on this, that one would almost have to experience some sort of chest pain if our bodies are trying to pump blood where it needs to go, either working over-/under-time.

Hope you get some answers. I would always consult the dr. with your concerns especially so soon after surgery.

Feel better

I have wondered this for years. I even had one EP tell me that since I don't faint, I have a mild case of POTS, and this was supposedly a specialist in POTS (at the end of that visit I was in tears as he was telling me that I probably needed to seek out therapy)! I now try to take articles into the dr. so that I can refer to them if need be without trying to step on any toes while I'm at it. I wish dr.s would get on this site (or any other dys sites) where they could possibly educate themselves. I think by now most of us ought to be able to get grandfathered in as MD's The only explanation I have is pure ignorance, and it's such a shame as there are so many of us looking to these dr.s for answers, and most of the time we just leave with more questions.

I'm so sorry you're feeling this way:( So wish I was there to hug you and tell you everything will be alright! But truth be told, everyone is so different and throw a new baby into the mix and I'm sure everything is just overwhelming for you. I can't answer most of your questions accept the anxiety/panic one. When I get this, I feel jittery, shakey, and tingly all over. I can feel the tingly feeling as it crawls up my extremities and into my head. My heart starts racing, I feel like I'm gonna hurl and I have to lay down, like, right then. Afterwards, I feel so tired, like I could sleep for days. It is an overwhelming feeling and scary too. I don't really have any advice other than to lie down and take deep breaths (inhale and then exhale slowly) and try to relax. I know it is so much more easily said than done. I usually sing a song in my head over and over until I can feel some relief (and I pray alot too). Mine comes out of nowhere as well, but I do believe that our minds can do amazing things to us--sometimes negative and sometimes positive. I find that if I try to dwell on the positive (I do know how hard this can be) and not on all the worrisome questions we have, things do get better and I feel more calm.

I get very scared and worried too when taking anything new. I try to "try" new things on the weekend when someone is home with me and can help me if I need it.

A few years ago I saw a therapist and she recommended a book called "The Anxiety & Phobia Workbook" by Bourne. It has lots of helpful tips as well as detailed explanations of both. Although it is not geared toward POTS, it was helpful and I go back to it often.

I so hope you feel some relief soon. My heart goes out to you!

Sarah,

So sorry if I caused you undue stress not my intention at all. But now, I too will be looking at my results more closely. I have a physical in the spring and I will definately be going over results with Dr. one by one.

I think it's important to note that everyone is different. Dr.s tend to keep us in their little box and if we stray from the textbook we're SOL! I always think of it this way...yes, the normal range for so-and-so (add any test here) is this, but what if that is not normal for us (not "us" as Posties but "us" as in a general human)?? For instance, during my first and only ER visit, my potassium was low. Now for one person, this might not affect them in any way, but I'm me and it might affect me differently. Am I making any sense?? At any rate, we are all different and have different norms.

Sorry I can't be of more help.

{{Hugs}}

Bebe

So sorry to hear of your experience Ash As if it is not bad enough we deal with all these funky symptoms and feel crappy most days and to then get treated the way you were treated. So many doctors seem to have skipped the class on bedside manner when in med school. My heart goes out to you. Hope you get to feeling better soon. {{Hugs}}

Bebe