Jackie

I am so glad somebody brought this up...thanks EarthMother and others here for posting about this. I have noticed, and it is embarrasing, but intimate time with my husband, which I would consider normal healthy excitement sometimes causes this trembling. I was afraid to bring it up because I didn't want to offend anybody or be so personal. The point is, I have noticed too that it takes little bad stress to cause this feeling that feels like my body is over-excited (like cleaning the house and when I'm typing for my job) and of course truly stressful events like finances or bad news, etc., and it takes as little good stress to stimulate it the same way sometimes also. At Christmas, I was still in the beginning of what would be what I consider now to be my recovery (judging on how far I've come...yet not 100% evidently) and just visiting with my family and the noise of the conversation and the flurry of the activity in the house...it made me feel like I was rattling inside. My mind felt like it was racing and I felt a little jittery even though I was thoroughly enjoying myself...I was aware of this inner shaking-like feeling. It has gotten much better but I find I cannot multi-task as much as I used to without becoming overwhelmed and also that I can push myself through my day, get up and clean and work, etc., but the more I do, the more relaxation and time it takes for my body to settle down. I honestly thought it was possibly related to my anxiety medication, but looking back even a few years ago I can remember having a trembling sensation in my body right before my period would start so given that realization, I don't truly believe it is the medicine since I experienced manifestations of this sensation way before. Sometimes in the morning when I first wake up I feel trembly and I feel better after I take my beta blocker and my small dose of Xanax...I mentioned it to my husband and he said "it is called addiction" (he is a loving man but he has much difficulty accepting all of this, as I have at many times myself and he is so much like me in being against taking medication of that kind...however, I am learning to accept it as reality right now...it just seems to keep my body calmed down...not my mind usually, but my body actually), but anyway, I didn't appreciate that comment and I know he just doesn't understand. For a second I again worried maybe he was right and it is the medicine, but I truly can only imagine what my body would be doing without the meds. I think also that you have a wonderful supportive and honest doctor. He certainly does sound like a keeper I agree with Nina. I respect anybody who can say this is the best we understand it and take the time to explain at least what he does know. Thanks for sharing this. If you get more information about the receptors, etc. please do share it. For Denabob, I agree, if somebody figures out how to avoid stress, please share. The fact is good and bad stress is a daily part of all of our lives....to avoid it would be to not live in a way. I have a 20-year-old son living with me and if somebody can figure out how to make that less stressful I'd love to know the secret! I don't know about anybody else, but to me, in my experience, my son has brought me some of the greatest joys in life I'll ever know but also some of the most stress and worry and sometimes sorrow and disappointment that I think I'll ever know. Such is what comes from loving somebody so much I think.

Boy is "overwhelmed" the word of the week? I have been trying slowly to build myself up in activity to somewhere close to where I used to be last year...it started with cleaning the house...then it started with cleaning the house and running some errands, etc. Then it came to cleaning the house, running errands, and trying again to work a little from home (I have a home-based job). Now with all that I'm worn out and only working a couple hours a day and have endeavored to make time each day to do some Bible study, etc. and this past week I've spent everyday tied up on the phone finally making arrangements with all of our creditors for our accounts that have gotten so far behind and out of control from my illness. I am self-employed so when I was sick there was nothing coming in and my husband works full-time, goes to school full-time, and is in the national guard so he is gone a lot and I have always handled the finances so when I fell apart, there was not only much less coming in but he had no idea what to do with it, who to pay when, etc. A huge mess I've been trying to avoid I guess fearing pushing myself to work more and more and handle all those arrangements would push me back over the edge. Well, I have to say it has been difficult but I did it and every day this week has been a long one and so very stressful to the point I feared I would lose it and go lay back on the couch and not want to get up....but I refuse to let that happen so I pop the ibuprofen and take the Xanax, try to remember by B vitamins, eat salty things, drink, and just prop myself up at my desk with a pillow in my chair and try to do the best I can and press on until I have my appointments in April to see if there is an alternative medicine/treatment plan that could do anything more for me. But I'm rambling I'm sorry...just relating to my own overwhelming feelings this week. I think we all strive to be all and do all that we could do before but that isn't always possible. It is so very hard to accept. I know how you feel. Don't give up, hang in there. My thoughts are with you. I am so grateful we have this board. Your POTS sister, Jackie.

Ditto here. My periods are horrible. I am starting today (I know too much information!) but I'm achy all over...every muscle in my body hurts...I've had a headache...horrible cramps, acne, sometimes nausea, sometimes horrible heartburn which I've never had in my life, backache, neck and shoulder pain, sometimes this hand rash thing I've talked on the board about, breast tenderness, bloating, and oh yes the mood swings...the whole 9 yards. I'm 37. It seems I also sleep less, have more vivid dreams, get worked into overdrive frenzy cleaning and stuff like the nesting thing before labor when you're pregnant...I get obsessive about things a little more too. From all I've read, premenopausal symptoms start as early as the early 30s and on so so much for the menopause at 50 thing...are bodies are still down-regulating as much as 10 years beforehand. I agree to get your hormones checked...for me though, when they were checked they seem to only want to check estrogen...I myself would like a full profile of estrogen, progesterone, and testosterone, etc. Estrogen isn't always the problem I guess is what I mean but is often the first and mostly only thing they look at. Hang in there girl...if you're lucky you'll get the bounce back after you start...I used too but now I barely bounce back...it just lessens a little until the 2 weeks before and then it starts all over again. Sometimes it seems to last all month. I know my hormones are a problem...just don't know which ones and how to fix them. I tried the pill by the way for 3 months and this month off them I actually feel better so maybe it helped regulate me a little...we will see next month. I know about that lethargy thing too (it happened even more on a high dose progresterone pill...ughhh horrible). This month though witthout the pill I'm actually tired but going non-stop...no wonder I hurt all over! It's like tired but wired or something.

hilfgirl33 - Can you please explain what they do in cranial osteopathy then? I'm sorry if I missed it in the posts on this subject...I'm getting confused!

Thanks to everybody who replied and for the info. on the support hose. I would definitely like to try them, but one person mentioned their heart rate went down 20 beats....for me, on atenolol beta blocker, that might not be a good thing right now but I will discuss it with my new doctor I'm getting to see in April. They certainly sound great!

Wow, I am interested in this cranial therapy thing and also have been considering doing acupunture (though afraid of the needles so thought maybe acupressure might be an alternative). The thing, finding somebody around here that does the cranial sacral therapy will probably be a challenge though I've located a person who does chinese medicine and she is the wife of my GYN/ONC who I highly respect. The drawback to all of these alternative treatments of course for me is the money too. Since I got sick we are really struggling financially, but I am going to keep these things in mind for a future time so I really appreciate people posting the information. It is very helpful to hear about your experiences.

I am on beta blockers (atenolol) but I notice at night that I get a little bit more "palpy" and attribute it to the atenolol having worn off. I agree with everybody here that you should follow up on it though. This is so strange about the face numbness! I've never thought about since it was months ago, but right before I got sick last summer, before the full-blown fallout hit, I would often have numbness and tingling on my cheek and sometime around my mouth. Boy it was a strange sensation. I attributed it to smoking and also to my medical transcription...which sounds wierd but let me explain...when I transcribe, I'm really flying, and sometimes I think I'm not breathing correctly...like breathing fast and shallow similar to hyperventilation and I'm not really aware I'm doing it at the time so I thought maybe I wasn't getting enough oxygen or something. Bottom line is, for whatever reason, yes I've experienced it too. Also, boy I hate to bring this up because it makes me have to remember it, but the strongest palpitations I ever had happened when I took Ativan (and similar other anxiety meds)...when they wore off, sometimes I would have an intense episode of tachycardia and palpitations and feel like my heart was beating out of my chest. I've read about things and attributed it to "rebound anxiety" which happens sometimes from benzodiazepines. Do you notice it in relation to dosing of your meds? Also, Tearose, I look forward to what you find out from the doctor...interesting about the plexus nerves thing.

I too absolutely loved your analogy of the POTS emergency channel. See, you have your sense of humor and that helps a tremendous amount and says much about you! I can totally relate to how you feel. I often feel like I have more in common with my 70-year-old mother and my husband's 90-year-old grandmother than I do anybody my age (37). It tends to make a person sad and I have my days lately where I cry too because I'm afraid and I'm tired of dealing with it. I have been doing much better lately and now I'm in the 7-day count down to menstruation and my energy and mood have dropped again. Of course, it doesn't help to be sick with a sinus infection and on antibiotics too, but still...the old doubts creep back. I think I'm still in the struggle and cycle of acceptance myself. There are stages of acceptance like everybody knows of grief, mourning, anger, refusal to accept it, then sadness, acceptance, and back again....that's me. If I learned ANYTHING from being put through the mill of pyschological treatment during my ordeal, it is this and only this..."the bad day care plan"....get up and at least wash your face, brush your teeth, and comb your hair. Don't dwell on the negative, think positive, and call a friend or do something to take your mind off it. Of course for many this sounds much easier than it is, but I do find if I have a good cry and listen to uplifting music or share my doubts and fears with my sister or somebody the gloom does past. Remember this, you have had good days and will continue to have good days...they will come again. Take advantage of the bad ones to rest and do not get discouraged and do not beat yourself up. I know this is going off into a religious area, but still here I go....I think comparing ourselves to others is the worst thing we can do to ourselves. There will always be somebody else more attractive, somebody else with more energy, somebody more healthy and vibrant, etc. I too have been envious of the energy I see in other people. Think on this though, you are who you are for a reason. With all your strengths and your weakness, there is only one you...nobody like you. That makes you special! And you certainly are special here on this board because your posts have certainly been a blessing to me!

I think it is definitely very interesting. My mother was diagnosed 13 years ago at the age of 57 with chronic fatigue syndrome after being very ill with strep and mono (and tested positive for EBV, etc.) that she had a very hard time recovering from even with multiple antibiotics, etc. Of course back then, worse than now, it was such a new thing and so much more poorly misunderstood that she was definitely mistreated as a patient. She did find a counselor who helped her understand her diagnosis (because the counselor suffered from it herself and had done a lot of research on it) but mostly unfortunately, she was treated by the medical community mostly like a mental patient and like it was depression and anxiety. I think the research and links were interesting and thanks for posting them.

I never had swallowing problems per se but my gag reflex was very hyper. It was hard to brush my teeth and very hard to swallow potassium supplements (but then again...they are huge). To Dan, I definitely believe I got worse after I was put on Ativan at the ER. I don't think it is the best neurologically stabilizing drug. I feel for your situation of tolerance and dependence since I was only taking .5 mg sometimes once a day, sometimes twice a day, and sometimes none a day, but after just 2-1/2 to 3 months I found I couldn't stop taking it and in between doses I had the worst rebound anxiety...Basically, I felt that it was true anxiety induced by the drug wearing off (which many doctors will admit happens) and compared to that, I can say I don't think I've ever had anxiety like that ever in my life until then, meaning it wasn't anxiety to begin with but I sure developed an anxiety problem once they put me on Ativan. I also believe it caused me to have sleep problems because the insomnia problems I had started after taking Ativan. It was like russian roulette trying to time my dose just right so I could sleep...I wasn't always successful. I would love to say that I got off of it easily...unfortunately nobody could help me so I ended up seeing a psychiatrist who simply changed me from one benzo Ativan to another Xanax which is where I am at currently. Although I feel Xanax reacts totally different on me than Ativan I still do not want to be on anything and thus my journey continues.... I guess my thoughts are, have you investigated anybody who could help you get off the Ativan?...maybe it would help resolve the swallowing problem. Just a thought...I feel for you...hang in there and I hope you get the answers and resolution you deserve.

I also was diagnosed by tilt table test last September by Dr. Grubb. I made it the entire time (I think 15 minutes?) and it was awkward and uncomfortable (especially with a group of interns watching). I did not pass out but by the end of the test I was beginning to cry. Somehow, which I don't pretend to understand and I don't know if others experienced this or not, but it took an emotional toll standing that long. I made it but felt awful. I was so glad they did not do the injection part. The thing is, I had a witnessed 30-beat increase from lying to sitting at one ER visit and Dr. Grubb documented a 40-beat increase from sitting to standing in my first office visit with him before the TTT. When I had the TTT, I had only a 20+ beat increase (and they look for 30 beats I think) but Dr. Grubb still said it was positive (and after all, my resting rate was 110-115 so 20+ beats was still very uncomfortable). I'm not sure what my blood pressure did during the test but I think it maintained itself for the most part with the increase in heart rate since I never passed out. I have never passed out in my life though yet felt very close 1 time. Most times just dizzy and weighed down by gravity.... The test felt stressful to my body though and took an emotional toll and again I was so glad I didn't have to have the injection because I was afraid of how fast my heart would go then!

Dr. Grubb is very good and also in Toledo, Ohio, there is Kathryn Boehm who actually is an adolescent medicine specialist for NCS/POTS patients (children through age 25). Good luck with everything. I can't imagine traveling that far for diagnosis. Hopefully you will find good doctors where you live also once you get the diagnosis to help manage his problems. I agree with others below that it has to be so much harder to deal with a child with these problems because it has to be hard for them to communicate what they are feeling. My heart goes out to him. The good news is, with treatment he can greatly improve so hang in there and stick close around here for excellent emotional support!

Julie - Thanks for posting. I'm realizing I'm not alone in that it is often written off to a psychological problem in the beginning (and I bet if we did a pole we would find most often for women...everything is written off to hysteria when it comes to women)...unfortunately, I think the treatment I at least received at the hands of doctors and ER staff and even family members in the beginning did start to cause me psychological problems and I ended up caving into meds unfortunately out of desperation. Can't look back though...have to keep moving forward so I try not to dwell on how I got here but where I'm going from here. I hope to be off anxiety meds in the future but somehow I do think they might help in balancing the nervous system for some people...I just don't entirely like them, the stigma attached, or the potential for dependence....all I can do is take it one step and day at a time right now though and hope for the best. I agree with a lot of people here though that if the symptoms had gotten under control before giving me anxiety meds (which did not help control the heart rate or blood pressure by the way) i.e. the beta blocker which finally did help...I would have easily been able to manage the anxiety because I could talk myself through the heart racing episodes before they ever gave me anything mentally just fine...now I think it will be a challenge for my body to adjust off the meds and not looking forward to that day if and when it comes...but oh well...like I said...I'd lose it if I dwelled on it as fear just feeds on itself so I am choosing not to worry about it and take one day at a time. But thanks for your insight and your experience!

Futurehope - Amen to that! Thank you for the welcome and nice to meet you too

Also, if anybody knows how to find a doctor around where I live that does this that would be great (near Toledo, Ohio) (that is the cranial sacral therapy). What type of doctor are they considered? Wouldn't even know where to begin looking. Not like a chiropractor right? Don't want anything cracked or manipulated!

Pamyla - thanks for the link for more info. It sounds interesting. I have also briefly considered acupuncture (but afraid of needles) and thought acupresure might be a good alternative. If anyboody has tried these I'd be interested to hear of any benefits. Geez what I just wouldn't give for a full body massage done by a professional massage therapist....but bills too high and money too tight since not working full time anymore, being off work for months, and even with insurance multiply 10 ER visits x 75.00 co-pays and 2 hospitalizations x 500.00 co-pay and you begin to see...but oh boy someday...just for the relaxation and body aches alone I think it would be wonderful!

RunnerGirl - my first "episode" on autonomic instability happened after taking steroids and they documented frequent PVCc and PACs on my EKG but said it was insignificant and yes called them palpitations and basically sent me home saying nothing is wrong with you (from ER visits). The tachycardia persisted much of the day for weeks. My last episode happened last summer seemingly triggered by calcium supplementation and persistent diarrhea, excessive thirst and urination, etc. (everything seemed to go out of whack). The EKGs in my multiple ER visits progressed from sinus tachycardia to sinus arrthymia to later about 2 months later and a dose of antidepressant I didn't tolerate well to paroxysmal atrial tachycardia and still my resting heart rate was high and upon standing and movement would go up 20-30+ beats per minute (i.e. resting heart rate 110-115...with movement 135-140+). It is a very uncomfortable sensation to say the least and I am not a doctor either but I feel the feelings of palpitations are the heart trying to readjust the rhythm and slow itself back down (PVCs and PACs, etc.) but interestingly enough none of these have shown up this second time around however I have had nonspecific T-wave abnormalities...(don't know what that means either but evidently they are not serious either). I know your discomfort, I know your frustration, and I know your anxiety. My body was in what I called an anxiety state long before my mind got involved...it was like my body was running away from me and doing things I couldn't control (i.e. heart rate)...it was later the mental panic attacks started I think like somebody else has said before because our brain struggles to make sense of it and then mental panic starts to set in. Hold on and hang in there...I definitely think you are on the right track. Also, I too felt my thyroid was involved but you are right...if the numbers are in normal they say your symptoms cannot be related. My TSH had trended down towards hyperthyroidism and I had all the sympotms but the endo guy said no connection. Who is to say their tests aren't flawed and they don't know as much as they think they do about thyroid and individuals...many people as I've said before I think suffer from hypo and hyper symptoms while still in the high-normal range and low-normal range...but they don't get treatment because hey...it's still the normal range. To Kari, welcome to the board also. I have found this board not too long ago and it has helped me tremendously in dealing with POTS. The support and sharing of information is vital. I have heard of people with POTS experiencing severe left-sided chest pain and it has something to do with blood pooling in that side of the heart or not pumping efficiently or something. I'm almost positive the information was on the NDRF website where I saw it. Others here are also more educated and can probably give you more insight and information. About your PVCs, I'm sorry but I only had a few showing up on my EKG and holter which they considered insignificant....I would think 10,000 would be be pretty significant. I also want to say about blood work being normal.....I realize this is a valuable tool for physician's to assess conditions in individuals but as a medical transcriptionist I can tell you that people can be dying and die and their blood work still be normal (and I mean like CBC with diff, thyroid function, kidney function, liver function, blood count, glucose, clotting factors, etc.). It is a tool and is informational to diagnose many problems like renal failure and many other conditions, but should not be solely relied upon to assess a patient. Not everybody who is ill will have it revealed in their blood work. Showering, eating, and walking around for a period time I think directly effects your blood pressure (hot showers dilate blood vessels which can cause blood to pool in extremities, eating draws blood to the gut for digestion and can cause some pooling taking it away from other vital organs, and walking or standing for long periods of time can cause blood pooling in the lower extremities due to gravity and the various mechanisms that fail to pull the blood back up toward the heart and brain where it belongs which is why the heart rate increases I'm told...to try to compensate and bring the blood back up and maintain the blood pressure). I too am just turning 37. Others can help much more than I here in the testing information (Michelle has posted always so many good links I can't keep up!) but I was diagnosed by tilt table myself so I agree that asking for that would be a good idea. Lastly, I like EarthMother's comments about healing and how it can take place without the help of a doctor. After all, doctors do not "heal" anybody...they aid our bodies to heal themselves (with treatments, medications, understanding, support, etc.) which is what our bodies are supposed to do on their own. She strikes me as a very spiritual person and I am uplifted by her posts. Of course it helps to have a good doctor...something most of us struggle to find, but overall my faith is in God and not the medicine or the doctors....through Him only have I found the strength to run this race that has been set before me. I didn't ask for it and I don't think I did anything to cause it, and I've prayed first to have it removed, then I prayed for strength to endure it, but now I'm praying for strength to enlist it somehow for my good and put it under my feet and not be defined by it. This has been very much a spiritual journey for me as well as a medical journey and that my friend is the way I'm coping. I know everybody here probably isn't a Christian but many people believe in a higher power and today I'm just moved to say that what satan meant for evil, God will take and make it for our own good. When I feel like giving up and falling into pity and worry I try to put my mind on higher things and trust in Him... It is hard to feel like a gunea (sp?) pig, trying this and trying that, but maybe someday everything that we are going through will lead to a completely new understanding and discovery and will save others from suffering. I wouldn't choose this nor wish it on anybody but like many unexplained illnesses before this...many suffered but ultimately it saved somebody else and benefited them down the road. Again I wouldn't choose it and it is a cross to bear....but we never know what good purpose it will serve later for others and that makes it easier for me to accept. Sorry for rambling!

Can the experienced people explain more what this is? TIA

I have only had the ear spasms a couple times and did not know what to make of it. It was always in my left ear when it happened and I can only remember a couple times. I didn't like the feeling though so I feel for Briarrose and Ethansmom if you experience this regularly. Actually at the time it happened, I was on Ativan and can't remember if it happened then or after I tried to take Lexapro (but was still on Ativan to combat the excitation and agitation) but somewhere in that time I had some really strange sensations in my body (the ear spasms and I also had some episodes of jaw trembling which were scary and I even had some tremor-like sensations in the upper part of my spine between my shoulder blades). It might have all been linked to muscle group twitching or something but I worried at the time about focal seizures. Anyhoo, thanks everybody for sharing. I'm glad to know I'm not the only one who has had some ear/head noise sensation. I find when it is bothering me and most loud, if I concentrate on another sound it bothers me less....sometimes I just focus on the sound itself and let it help me fall asleep. Oddly enough it hasn't been as bad for awhile but I stopped taking the birth control pill after 3 months so maybe that has helped it go away and balance me out somehow I don't know. I've also been trying really hard to eat more salt and drink a little more than usual lately. Admittedly, I have felt a little better, my blood pressure has been maintaining itself better, but I still have some up and down moods and energy levels. I suppose its all a guessing game huh?! Thanks everybody.

I guess the thing is though, the sound is not in my ears per se but a perception of noise in my head. I know it sounds bizarre...it isn't voices or anything...the best I can actually describe it is the sound of a summer night...like a soft hush of the rise and fall of distant crickets. Strange...if I get brave I wil talk to the doctor about it. I'm almost afraid too though...what dx will that yield! Can only imagine! I do feel it is a side effect of meds too but wondered if it could be related to blood pressure as it is supposed to be related to CNS fluid pressure as I read on the website about it. Thanks everybody for responding though!

What wonderful news! You have my prayers and support. I just have a feeling this will bring a much-needed breakthrough for you! Keep us posted!

I am curious to know if anybody has problems with tinnitus. I have been experiencing a noise in my head that is stronger/louder at some times than others (primarily when I more tired...louder). I looked this up on the internet and have found that "tinnitus cerebri" is the sensation of noise perceived in your head vs. in the ears specifically ("tinnitus"). I have intermittent ear ringing and have even had inner ear spasms, but this sound is almost always present and strangely enough reminds me of a summer night with cricket noise (any campers or those who live in the country might know what I mean by this sound). Since it started after taking anti-anxiety meds I am trying to figure out if this is a medication side effect or due to my other problems going on (POTS). The tinnitus cerebri I understand has to do with the pressure of the CSF fluid in the brain. I am just curious to know if anybody experiences this. (My sister with MS has experienced a humming sound in her ears and my mother complains of a buzzing sound in her head). We sound crazy don't we? Secondly, I almost always get very pronounced scalp tenderness before my period. It hurts sometimes to just run my fingers through my hair....what is this? Anybody else have this experience? Thanks!

I had excessive thirst and urination but only after taking calcium supplements and then intermittently it would come back and then go away (but the tachycardia and sweating stayed). Strange symptom and hard to tolerate I know. One thing I wonder is whether water is the best thing to drink? I mean, salt goes where water goes so if we take in a lot of water won't it flush out the sodium and it seems we need more salt to retain the water right? Just curious...I drink soda myself which I know isn't healthy but it does have sodium so I figure it helps.

EarthMother - thanks for the link and information but honestly since I don't believe I can get pregnant I wouldn't want an IUD. Natural progesterone cream might be a route I'll explore, but when I used the micronized progesterone capsules (one 1 200 mg dose) I didnt' quite like it....didn't give it much of a try though admittedly but not interested in taking any more either!

Dawn A - I am in POTS City, Ohio! I appreciate your information especially about the BC pill. I am going to look into it. Dr. Grubb gave me Florinef too but I've been afraid to take it. I am considering trying it but I also have an appointment coming up with a new doctor in April so I might hold off....not sure what to do...ughh. Anyway, thanks