Rene S.

Easy, calm down, at least a little. An Autonomic dysfunction means you will get those screwy numbers! You will find MANY posts about crazy blood pressure readings with narrow pulse pressure, extreeeeeeeeeeemly LOW BP and huge BP spikes. All of us here are screwed up in that way. Keep a log if you want to, it might shed some light on when and why your BP does what it does. Just to reassure you that this happens with most of us, I'll share some of my gems:

99/88 HR 136--cleaned two sinks

115/101 HR 109--cooking dinner

173/149 HR 89 --reaching above my head for a bowl

84/48 HR 48--lying in bed

96/83 HR 96--stirring my morning coffee

Definitely go to an Endo, just be prepared for EGO!

Take it easy, the calmer you stay, the more stable your BP...at least until you stand up!

Thank you firewatcher. I'm becoming overly concerned. I was tested for a pheo back in Dec. but it's still in the back of my mind. I see your numbers, but can do they change from let's say 5 mins to the next 5 mins? In other words, I can be sitting calmly and it's "normal" and I get up go to the other room come back and it's raised like 30 points! My b/p!!!

I just wonder how much our hearts can take. I always thought of POTS as being always low and never high. I have so much to learn!

Rene

Hi. Maybe someone can shed some light on my problem. Today I've felt awful. As if a mack truck ran me over. I've probably been overzealous about taking my b/p but I truly can feel it elevating. As soon as I get up bam! heart races and head pulses. If I sit quietly, it's normal. This has been on going and I can't deal with the chest pressure, the flip flops and heartburn (dr says all tests are fine! grrr). Anyway, here is just a sample reading for just today:

136/80 hr 81 (walking into my room) and sitting down

123/76 hr 81 (sitting on my bed)

153/85 hr 92 (walking from one room to another)

138/90 hr 98 (putting laundry away)

108/70 hr 78 (sitting on bed)

115/71 hr 71 (sitting down)

163/76 hr 83 (sitting down)

138/84 hr 105 (standing)

And so on. And they change from minute to minute.

This can't be good for the heart going up down, up down. The lowest is always the morning but my hr tends to be higher.

Trying to get ahold of the cardio is like pulling teeth, but my gastro dr thinks this is also metabolically related. Just since yesterday, I lost 3 lbs and I ate a bunch of fattening things. I'm at my witts end. He's trying to get me in with a a good endo.

Tired of being out of breath just from up down the steps, pulling clothes out of the washer/dryer.

Has this type of b/p change occur with anyone else? Part of me wants to run to the ER but I know they won't do anything and I even put a call into one of the cardios on call last night and told him what was going on and it didn't seem to bother him. He said you had a negative stress test, calcium score was zero so the fluctuating b/p shouldn't hurt me. But it is! I can't function llke this. How long can I lay in bed??????

I know that most of you are on the betas, but I just can't handle them. And if they want to do adrenal studies I think you have to be off of them anyway.

Thanks once again for listening. It's not easy living alone.

Rene

Hi,

Mine is caused by high adrenaline.

Hi Ernie,

I'm sure mine is up there as well! I believe it was in one of the blood tests that my GP ordered this week.

Hope you are doing better! Please let me in on your secret!

Rene

Rene, I'm so sorry you're having such a hard time! Can you do a gastric/small bowel/colon motility study? That's how they diagnosed my slow small bowel. Many people with POTS have slow stomachs as well. I can usually push through the nausea and fullness, though, and I've managed to maintain my weight. I also have high-grade reflux. (sleeping with the head of my mattress elevated helps for nighttime). But most meals I have to eat either reclined or laying down. It just seems like it's too much work for my body to be upright and digest food at the same time. And I know it's the worst thing for GERD, but laying down for a bit after the meal helps me to digest, too.

Also, since my delayed emptying is related to sympathetic over-activation (from orthostatic stress) I find that it is better if I stay hydrated, wear compression diligently, rest, salt, etc.

Can you take in liquids? When I'm having hard days, I try to drink Carnation instant breakfast because it has calories, vitamins, and is easier to digest. If you're lactose intolerant, I think there are liquid supplements that are soy-based also?

You poor thing. Sounds like your dysautonomia is really out of control, hence the bad shakes too!

Please let us know how you're doing, Janie

Hi Janie,

My GI dr doesn't want to do any studies until I put some weight on. He thinks I'm too fragile! Grr. He's done some blood work (which I should have results from this week and even was testing my feces. Before I came to the boards, I had no idea about what the dysautonomia entails. Wow! I do try and either drink an Ensure (which I believe is soy based) but I do have the carnation instant breakfast as well. Sometimes I force it down with 1/2 of a sandwich. I just never thought I'd ever have a problem eating! And the getting full feeling is awful. It's as if I just sat down and ate my thanksgiving meal with a second helping of dessert! LOL.

The weird thing was, yesterday, I almost felt "normal" for a few hours and was out and I guess I'm paying the toll today. My energy level is non existant. Just want to sleep. Trying to keep myself moving even if it's a 5 min walk around the house. I know that sounds strange but I've lost so much muscle tone.

I'm trying to keep up my fluids, but I'm the type of person if they are cold I don't want to drink. I could make some herbal tea. And I will look into the compression stockings.

As for the GERD I try to sleep up high on 3 pillows and stay on my left side.

I wouldn't wish this on anyone, the exception being my ex husband's 35 year old fiancee! LOL.

Thanks Janie for some great tips. I so appreciate it.

Rene

Hi Renee,

I am so sorry you are having such a hard time. Do you mean shaking like you do when you are cold? Now I am no doctor but that may be due to how our ANS doesn't control our temperature very well. You know like maybe your body thinks it is freezing even when it is not. I get shaking too. I get chills shaking, but I also get like a tired shaking. When I am tired I can't use my muscles or I shake. Like if I lift my arm. Or once when I tried running with a kite (the last time I ran!) my legs went all over like jell-o. My husband who was watching me said "don't run anymore! You will hurt yourself!" I also get an innner vibrating. Kind of feels like electricity is going through me, and amping up all my muscles, but instead of making them stronger it just makes them weak like jell-o!

Your not whining! We are all here to share, that is how we get understanding of this disease! But if you want to call it whining, whine away! I think we need blinders like the horses wear so they can only see right in front of them, and big cotton balls for our ears just to survive with this disease! I can't tell you how many people have told me to "JUST GET OVER IT!" Just get yourself busy and into something so you don't think about it they say! OK. Well I will start with this then I will puke, then I will do this, and I will faint! And really I will feel like @#%$ the whole time, so really I WILL be thinking about it! Really if you could just get over it you would have! Sorry for others that say such thoughtless things!

Sorry, but I don't know exactly your case, have you had any kinds of tests to see if you have GI dysmotility, or any other issues there? I couldn't stop losing weight at one point, and had a doctor scare the life out of me when he said if you keep losing weight at this rate you will die! Well I solved that problem on my own by the most weird method. I am able to eat IF I am laying down, and I usually have to stay down for about an hour afterwords! Now the last doctor I seen said that all my problems were due to too much weight!!!!

I hope you get some answers from the blood tests ordered. And I hope you get a nice spring day soon!

healing hugs

Suzy

Hi Suzy,

You are so very kind. Yes, sometimes it's shaking like I am cold, which always seems to be the case. perhaps because I don't have enough weight on me? My normal weight was 103 and now I'm 90 at 5' 1/2". I too have had a dr. scare the $(#*%* out of me. He was my endocrinologist who told me that he wouldn't see me again if I didn't see an oncologist because he was convinced I had cancer because of the weight loss! The other, my gastro said it was dangerous to lose weight that rapidly and ordered a bunch of tests including a poo sample. Getting back to the shaking, I know for a fact that my normal body temp is like 96.3. Whenever they take it at the drs' offices they keep telling me that I'm not placing the thermometer in the right spot under my tongue. Hello, I'm 49, I think I know how to use a thermometer! Also, like you, I get the shakes when I'm tired or do something a wee bit strenuous. Gone are the gym days, the 20 mins walks! I get the inner vibration feeling, usually at nighttime.

So, you solved your weight loss problem by eating laying down???? I may be hesitant to do that since I have gerd to boot. Do you mean totally flat, or semi propped up?

My gastro said right now I'm too weak to go for a colonoscopy or an upper GI. He told me that the next time he sees me (I was supposed to go back last month) he wanted me at least 95 lbs. Well, it didn't happen, so I changed the appt. I just get so full so fast. I'm trying desperately to throw something in my mouth every hour or so.

People are insensitive. I had one of my closest friends email me saying that there were people in the super market with "real" physical handicaps and they still managed to food shop for themselves (she was picking stuff up for me). Then she accused me of being anorexic, aggraphobic and anxiety ridden. I was so hurt I cried the whole day.

It's not fun looking like a bag of bones. Why would I do this on purpose? Even my cardio asked if I was anorexic! Jerk.

Again, thank you for letting me rant. I do so appreciate your feedback.

Hugs back!

Rene

My therapist has concluded that I have = Anxiety Disorder Due to a General Medical Condition -- POTS. Which is consistent with what other therapists have said in the past, including a couple psychiatrists whom some of my more annoying doctors at the time insisted I go see. BTW the psychiatrist also recommended finding a new primary doctor (that was more than 10 years ago and I have since found a keeper!) LOL

This past summer I was in a deep POTS hole and the panic disorder was at an all time high. Even getting to my cardiologist was a major challenge. But once I was there, he was able to reassure me that the increase in PVCs and some of the other strange symptoms were still "normal" and more over he explained what he believed to be a hyperadrengeric phase of POTS. I was still shaking and very tachy ... but at least I didn't feel like a complete nutcase when I left his office.

I'm not inclined to apologize for my anxiety (other than to my husband on a regular basis for making his life so difficult) -- not to my doctors. These symptoms ARE difficult and they should understand the impact it has on our lives. I am fortunate to have a team of specialists who understand and do not try and push a pharamcological approach which has not agreed with my own bio-chemistry in the past.

My cardio also suggested that as I am in my mid 40's, it could be that the combination of POTS and perimenapause could be making things more difficult than in the past.

Good luck getting answers that you want and the respect that you deserve from your health care team!

Hi EarthMother,

I just had to respond to your response. You sound like me! I can so relate. Right now, after just going through a divorce moving and the lilfe changes, I'm beside myself with anxiety. Getting to drs appts has become a challenge for me as well. I get in the car and my heart feels like it's going to explode! A year ago I wouldn't have thought two seconds to drive anywhere. As you, I'm tired of having to explain, apologize or defend myself to friends. I cannot simply just snap out of it! I even asked my therapist yesterday (I was proud I drove and am paying for it today!) for a note to show my friends that says "Rene has been traumatized by her life situation", which basically means leave me alone! Pushing me is not going to make me better. Telling me to get over "it" won't help. Our bodies wiring has gone haywire and we shouldn't have to be defensive about it.

You are so fortunate to have a great medical team. My drs think it's just anxiety and have tried various A/Ds to no avail. I'm so sensitive to meds and it's not something that I'm making up!

Thanks for listening and being part of this cause.

Rene

I'm sorry if I'm posting something that has already been discussed, but does anyone know why we shake? I tremble both inside and out. I think the outside trembling is the worst. I can even see when I look in the mirror that my eyes tremble is that makes sense. It's as if I can't get warm but sometimes I'm not really cold. My legs shake and even my teeth chatter at times. It seems the only time I'm not shaking is when I wake up soaking wet and hot! I also find that if I'm exhausted just from doing small things, the trembling is worse. I'm trying to learn as much as I can about this "illness" and it's so frustrating. Today is Saturday. Most people would be out enjoying their lives, but I'm too tired to drive anywhere nor do I feel up to it.

When it was just the fibro/cfs I was much more social, now I feel so lousy that it's just easier staying home.

I'm sorry for whining, I seem to be doing alot of that lately. I feel bad for all of us. And if one more person says to me "just get over it", I'm going to scream.

Also, I'm changing subjects - but I've lost way too much weight and when I do eat, I get full easily on a few bites and it feels like I ate an 8 course meal and then I'm constantly burping. Sorry for the rudeness! Just seems like every day things get worse.

I pray that something shows up in the blood work that my family dr ordered, thanks to you informed people letting me know what they should be testing for.

Today is the first day of spring and to me it feels like the bleakness of winter.

Thank you all for listening.

Rene

Goodness, I could have written your first post myself!

I am often very cold, and my hands and feet turn blue regularly. Sometimes I'll feel normal (like the rest of my body is a normal temperature) but my hands will be icy to the touch. Then all of a sudden they might get hot.

I now have several pairs of fingerless gloves, and I take them off and put them on again all day long. It helps, though, to keep my hands from getting so painfully cold.

I also get really cold right before I go to sleep, and pile on the blankets -- then I usually wake up in the night drenched in sweat. Then in the morning I wake up and I'm freezing again. My doctor was actually alarmed by the night-sweating thing, but so far we haven't figured anything out. The weird thing is I seem to sweat profusely from my chest, neck, and back when this happens, but from nowhere else -- my face, armpits, etc. don't sweat at all, even though when I exercise in the day I sweat all over like a normal person.

In the morning, all my symptoms (esp. the tachycardia) are particularly bad. In fact, when I first started having problems, I ONLY had symptoms in the morning. Now they last all day, but they're much worse in the morning.

I do have a dry cough - usually just one at a time - when my pressure pulse is up. Usually, my heart kind of feels like it's flopping around, and I'll have "skipped beats" and then a really strong, forceful beat or two after the skip. The forceful one causes me to cough.

I'm the same with the blankets. I set the heat low, and pile them on in addition to two cats! By 2am, I'm up soaked chest, neck and back , never my armpits or face! And the tach. is bad in the morning. I awake with a jolt. I keep thinking it's anxiety, but it's not. Oh gosh the flip/flop heart! And the cough.

This morning I decided to just walk around the house for 5 mins to get my body moving and the cough started. I cleaned the toilets and shower and now my heart is doing butterflies and I'm exhausted. This is so frustrating. I thought having just the fibro/cfs was bad!

Hi Rene,

I get icey hands. It feels like there is icey water on them, and it stings and burns at the same time, especially if someone touches them. I also get hot and cold all the time, feet included. But my worse is the cough. I cough all the time, and it gives me a headache. I do notice it more if I am standing up, or active. But when I am laying down the cough calms down. Which isn't it supposed to be harder to breath when you are laying down?! Once in the hospital I was sitting up, and my oxygen was at 90% they laid my bed down, and it went up to 100% Go figure.

Suzy

Hi Suzy,

Wow I can't believe we all have so many of the same symptoms. And the cough! Grrr. I haven't noticed if it'smore pronounced standing or sitting or moving around. I'm just tired of the whole thing!

Rene

Hi Alicia,

I know. it's all so scary at times. And no one understands. So glad for these message boards. People who are just like us. We don't have to hide, we're free to be ourselves.

Be well!

Rene

Heylo,

I just wanted to introduce myself - I didn't see a specific forum for introductions, so I put it here. I?ve been reading these forums since March 2008, when trying to keep up with what my doctors were thinking and discussing. Now that I?m mostly over a short fatigue/mindfog flare-up that lasted a couple months, I was able to remember these forums and join.

My name is Cameron (guy, 27), and I live in the beautiful foothills of Lakewood, Colorado, snuggled right next to the Rocky Mountains.

I was diagnosed with POTS this May after having numerous severe cardiac and neurological symptoms in February (only made worse by a sudden Influenza Type A infection during the diagnosis process) that caused me to put everything on halt. I ended up seeing five doctors countless times from March to May to get a diagnosis (PCP -> Neuro -> Cardio -> Cardio EP -> (first) Neuro -> ANS Neuro). It certainly was a very interesting experience, and I?m thankful there was a person locally that has a full Autonomic Testing Lab and specializes in the Autonomic Nervous System.

At one point in my progression through the ordeal, the cardiologist wanted to have me immediately hospitalized and have a pacemaker installed after looking at my Holter monitor. He thought I had two Ventricular Tachycardia?s @201bpm, but the Cardio EP said they were Atrial Tachycardia?s with Aberrant Conduction. The Neurologist wanted me to also be hospitalized because my legs/feet were literally ice cold (and purple), my pupils were overtly uneven, and my blood pressure changed wildly quite frequently, and I was itching all over with pain.

In the end, I was introduced to Dr. Poscine, a neurologist that recently moved her practice to Denver (Luthern) and had a full Autonomic Testing Lab built on the Luthern medical campus. One of only sixty in the world, I believe. Since Mayo/Vanderbilt declined me, finding her was a lifesaver. And she was local!

On my first visit to her, she took my HR while lying down (ye olde wrist/watch method) which was 75. She then told me to stand when I was ready, and so I did. She still had her fingers on my wrist when I stood, and my HR immediately sky rocketed, as usual. I could see her try to count and keep time, but after about 10 seconds, she let go of my wrist and said, ?Ok, your heart is going nuts. Sit down, you definitely have POTS. I?ll order a Tilt Table test just to be complete, but you definitely have it.?

During the Tilt Table test, I had a HR of 70-75 lying down. When Dr. Poscine arrived to oversee the test, they tilted me upwards. My HR immediately fluctuated between 140-160 while upright and stayed that way for the five minutes I was up, while I casually called out my symptoms (lightheaded, partial blindness, pain in back of lower leg moving towards knee, then towards thigh, pain in back). She then immediately stopped the test when I said I was having pain in my back and in the back of my upper leg. I mentioned to her that this was worst case, because I was unable to move while on the table.

End result is that she officially told me I had POTS, and that she wanted to start me on a dosage of about 240mg to 300mg of Propranolol, a beta blocker, (titrating it upwards to that amount at about 10mg/week). She?ll probably want me to start other things, once that gets sorted out and done.

Right now, on 70mg of the beta blocker, I?m at 65 bpm sitting/laying, and 120-150bpm standing. And my BP is usually 110-120/70-80, rather than my old numbers of about 130-140/90-100. Unfortunately, I experience more presyncopial episodes when standing on the beta blockers, but she said she doesn?t care what happens when I?m standing (since I?m not supposed to be, except to take 5 minute walk for exercise a day), so long as I?m not having that happen when sitting/laying. But I?m not one to stay sedentary, anyway. I just have to avoid the heat/sun, or she?ll yell my ear off. At least that beta blocker is keeping my migraines in check.

I think the oddest thing about this whole ordeal is that my doctor said, while giving me the diagnosis, that this was a disability. I never really felt that way. Granted, I tend to need a seat quite often, but I always feel guilty whenever they mention that fact. I just don?t ?feel? disabled? just sleepy, heh. I suppose that?s just my stubbornness.

I?ve been apparently living with this for 14 years (had many negative experiences with oddball doctors until now) and she thinks it?s the reason I have Organic/Acute Heart Disease ? POTS left untreated at this severity (cardiac-wise), it permanently damaged my heart. But I think the worst of it is that every lady I?ve tried to date takes one look at my cane, and ends up disappearing off the face of the earth or ends the dating thing. I try not to be cynical about it, but it really does bug me. However, I saw a thread here about many other?s success, so there?s hope. I didn?t want to taint that thread with my negative experiences, however. It?s hard to get into the dating scene when you don?t have anyone local to introduce you to others.

I?m still going through a lot of testing, but at least they?ve started to find answers. They still suspect Chronic Fatigue Syndrome, Fibromyalgia, some kind of GI issue beyond POTS (GERD/IBS), and some kind of connective tissue disorder (Marfan?s, EDS type III, or Hypermobility Syndrome).

Thanks for the help back in March with your wonderfully informed posts and discussions, too. You really helped give me hope and ideas to share with my doctors at that time, and I hope I can contribute for others, as many here did for me.

Thanks,

Cam

p.s. Buggerit to my "no-sugar" diet. I won't give up cupcakes and cookies, durn it!

Cam, you sound like a sweetie. Any woman would be lucky to have such a sensitive sweet guy. I only wish I were younger! I'm 49 and having fibro/cfs and now dysautonomia, POTs dating is impossible. My husband left me partially due to the fact that he couldn't deal with my illnesses.

I'm sorry you have suffered. And any woman who would high tail it because they saw a guy walking with a cane isn't worth your effort. Shame on them!

My thoughts are with you.

Rene

Hi Alicia,

I can so relate. That's a perfect analogy. A fish flopping around in your chest. I hate it. Sometimes, I notice it more if I'm on my right side or if I lay down after eating. Flip/flop. Drives me nuts. Just chalk it up to part of the condition as long as you've had everything checked out!

Rene

Thank you all for sharing your experiences. This is some weird illness that's all I can say. This morning, I could not get my b/p down below 150/90 then today I felt weird, and I took it (I was laying down at the time), and it was 88/56! Go figure.

One day someone will figure this thing out.

Rene

Hi Babette,

Thank you for validating what I feel is definitely withdrawal symptoms. I was only on it for 2 weeks, but I'm super sensitive to meds but did taper down the last 4 days o 2.5 from only 5mgs. I have this wretched headache, like my head is on fire. I'm crying all the time and have no energy. I did ask the dr. and he said that it's probably not likely but maybe because I'm so sensitive???

How were your husband and daughter's withdrawals? What type of symptoms did they have?

I'm still struggling if whether or not I should go on the Pindolol. Can you tell that meds scare me? The only thing I take is tylenol (and that puts me to sleep!) and the klonopin which I'm not sure does anything. I'm just so frustrated.

Would love to hear from anyone else on pindolol or having the b/p problems I'm having.

Take care,

Rene

Hi. I just spoke to the EP cardio that basically dismissed meor rather I should say I spoke to his nurse. Guess he doesn't want to be bothered with me. I've been having some very elevated b/p levels lately. This morning I got readings of 158/81, hr 100, 155/97 hr 128. Upon awaking, my pressure was 109/63, hr 84. Last night prior to sleep it was 103/56, 75bp. I'm frustrated. I know that I'm under stress. I told the nurse that I've been experiencing chest pain that even woke me 2 nights ago with the sweats.

Anyway, she said try taking 2.5mg of Pindolol and then added go back on your hormone therapy. While, normally I would agree, the chest pains have me scared. I asked if I should come in and she said there is nothing that they could do for me there. It's a cardiologists' office for pete's sake! That they don't think it's cardiac and if I'm that concerned to go to the ER. I've had my share of the ER thank you They just look at me like I'm neurotic.

So, I guess my questions are as follows:

Does anyone take Pindolol and can you take it with chest pains? I didin't do well with betas in the past.

And second question - starting two drugs at the same time (the Vivelle dot) how would I know which is the effective treatment? And if I'm having true chest pains can't estrogen cause a heart attack?

I'm sorry I know I sound like nervous nilly, but I am. I shake all the time and generally feel awful. I did stop Paxil on Monday after 2 weeks on it, (didn't like the way it made me feel). I'm just concerned with the stress/anxiety/depression I'm under that I'm going to give myself a heart attack!

Thank you all for listening. There's no one here for me to turn to.

Rene

Hi. This may sound strange but my hands are usually cold, but then out of the blue (no pun intended!) they will become boiling hot for no reason. I'm trying to see if it correlates to when my pressure or heart rate is up.

Does this happen to anyone else?

Also, I'm usually cold during the day (can't seem to stop shaking), yet at night I wake up with the sweats.

Also, do you notice feeling worse prior to bedtime and then sometimes in the morning? Seems like my rates fluctuate more at those time, although they do alternate.

One question about a beta blocker - Pindolol - does anyone use it? My cardio was going to start me on 2.5 mg.

And last, when your pressure is up or pulse do you sometimes have a dry cough or feel the need to cough? Sorry I'm just trying to put the pieces of the puzzle together.

Thank you!

Rene

Rene,

If you can make it to Pittsburgh we have many skilled physicians who know how to treat this.!!!!!!!! Its true. I can let you know who if you can come. Miriam

Hi Miriam. Thank you! I know I have a friend who comes and visits from time to time who lives in Pittsburgh. I just don't know if I'm up for the travel.

If you could give me the names perhaps they would know of someone here.

Thank you so much!

Rene

Hi Ruekat, I'm so sorry to hear of your increasing problems! It sounds like you definitely need a knowledgeable doc who's willing to try some meds or something! My mom's been on hormone replacement therapy for over a decade and her oncologist (NOT her gyno) decided she didn't need it any more. She felt horrible... fatigued, constant period, etc. and he realized his error and restarted her hormones. (not that I'm saying you should restart them... as I think I remember they took you off because of the risk for clots and your dysrhythmia???)

There are several of us who's BP goes up when we are sicker. The longer I'm upright, the higher mine goes. My Mayo doc says it's the adrenaline kicking in trying to squeeze more blood up to my brain.

I hope you can find a doc in your area! I see my PCP and a local neurologist who refer to the instructions left by the neuro I saw at Mayo. I had to fly 2000 miles, but it was worth it to get answers and a plan of action.

Keep searching for answers!!!

/quote]

Thank you thankful. I wish my brain would stop then with needing more blood! LOL. NO I don't have a clotting problem. The only problem is that I'm not as active as I'd like to be and even though my hormones were delivered transdermally, I still fear that due to inactivity I may develop one. I do go up and down the steps alot.

Wow, I can't believe you flew all of those miles. I hope you found the answers you were looking for. So, I wasn't sure if my next step was en endocrinologist whom I did see before my diagnosis when they were checking for a pheo and he kept saying go to an oncologist because of my weight loss! Insane, or a neurologist. Right now, it's even difficult to drive so I have to rely on friends to get me places and I hate putting them out.

Thank you again. I will keep searching. I'm not giving up!

Rene

Rene, darling, you do now! Welcome to the best support system on the web! Vent, Ask, Cry...whatever. We are here for you!

Unfortunately, no clue on a good doc in your area. I'm betting Thomas Jefferson University Hospital maybe. MightyMouse (Nina) is up in your area, you might PM her.

Feel better.

Warm wishes for wellness from the sunny South.

Jennifer

Thanks Jennifer. You are too sweet. I know I'm being a pain but I'm just overwhelmed. It is depression/anxiety? Loss of hormones? Is there something wrong with my heart, besides being broken? Why do I shake all the time? Why the weird chest pains when dr. says nothing there? Why is everything such an ordeal? GRRRRRRRRR

Jefferson is an excellent hospital. A little out of my way. I'll see if I can track down Nina.

Thank you from the bottom of my quivering heart!

xoxoxo

Rene

Hi. I'm fairly new to the boards and I thank you all for your support. I'm just bewildered and don't know where to turn. Briefly, have fibro/cfs for nearly 9 years. Managed ok. Then I had a flukey thing with my heart, ( one bout of non sustained v-tach on the cardionet event monitor)and the drs pulled me off my AD and hormone therapy. (I'm 49). I was placed on Atenolol. Prior to that, I was sailing along ok by b/p was always 90/60 and HR 60. After starting the beta I started feeling awful. That's when I began all my symptoms.

At first, my EP cardio was sympathetic, but I think it got to the point where he was tired from hearing from me. Perhaps he was frustrated as well I.

Now, I'm left hanging, he was going to try Pindolol (have been on atenolol, corgard, metropolol) but now he says take nothing.

I feel so sick and awful I don't know where to turn. I tried Paxil for about 1 1/2 weeks and just can't handle the side effects. I take Klonopin .5mg three times a day. I don't know why I'm plagued with such overwhelming anxiety. It this part of the dysautonomia? I was formally tested in Feb and flunked the TTT. My B/P seems to be increasing and my exercise intolerence as well. I guess for me the scariest part is I don't know why my b/p is rising (I was even tested for a pheo) yet I passed right out on the TTT.

I barely eat food doesn't appeal I get nauseated.

Sorry I'm rambling. I just want to cry. Where/who do I turn to next? My GP has no idea about this condition, the cardio is PRN and I'm stuck. Living each day trying to figure out how to get by.

Does someone know which type of dr. I should be seeing? I'm in Bucks County, PA.

If anyone has any suggestions I'd be happy to listen with open ears!

I know I've repeated myself a few times and forgive me. How I wish that I could have handled the Paxil. Prior to that for years I was on zoloft did fine, till it stopped working, then went to Lexapro and that's when I had the v-tach. I tried the zoloft again about a month ago and had a horrible reaction where before I was fine starting it. Everything seems to rev up my heart, cause palps or flutters. Structurely everything is ok. I've had and MRI, 2 echos, 1 nuclear stress test, cardionet event monitor which just showed tachycardia and a holter monitor.

Thank you for letting me vent my frustations. And living alone isn't easy going through this. I have no support system.

Ruekat (Rene)

PS. What causes the shaking/trembling???? It's like I'm constantly freezing but it has nothing to do with the temp!

Sorry you are having such a rough go Rou.

In brief, some folks don't do well on drugs like Paxil or Beta blockers ... after good hearted attempts, my Doctors now agree. And in my case I DID have some horrendous withdrawal effects from benzos after only a couple months.

My cardiologist who affirms I have POTS also feels given my history that the beta blockers would only make things worse. And yes, he doesn't seem concerned that my heart rate goes up drastically when I stand. But I don't think its because he is putting me off, I think he genuinely believes that the beta blockers wouldn't be the answer I am looking for. And when I've used them before years ago, they didn't help the weakness or fatigue or nausea etc.

For me, I do eat very small meals every 3 hours or so. Its much easier for my body to handle this than a full on meal in one sitting. Oh and for the record a load of laundry IS a big accomplishment for me! It wasn't always that way ... and I trust things will settle down again some day ... but for now, this is just the way it is.

Hi EarthMother<

Sorry I didn't respond to your posting before. You seem to know so much and I so little. I'm so sensitive to meds. Seems like ever since I was diagnosed with the fibro/cfs almost 9 years ago but even more so with the dysautonomia. I feel like a failure. I had horrid anxiety that seems to always be with me. Exhaustion beyond belief, and when I do force myself to drive, I can feel my heart beating so fast that I fear it will burst. I have been on bbs in the past and they never agreed with me. And I'm trying to get off of the Paxil even though it's only been 12 days my dr said I have to wean (from 5mg to 2.5 because my system is so sensitive). I don't understand why my b/p goes high when I'm faced with something as simple as driving and then it can be normal when I know that I'm "stuck" in the house. I do see a therapist but we've yet to hit on this point. She had me get an anxiety/phobia workbook but I wonder if this is all part of the illness. I would hop in the car at a moments notice even when I only had the fibro/cfs. Now I fear everything. I don't know which type of dr. to turn to. When my pressure is high, I fear that I'm doing my body damage but if I sit quietly, it goes to relatively normal.

There must be an answer somewhere.

Please your expertise is much needed.

Thank you so much.

Ruekat (Rene)

i am having such a bad POTS day. Actually this past week has been horrible. Im pretty sure its related to my boyfriend of 5 years moving to a different state. I have such bad brain fog i almost feel like im dreaming. My nerves are on end. Literally today my cat jumped next to me while i was laying in bed and i thought i had a heart attack. Im so shaky and out of it feeling almost drugged up. This is really disappointing because this is how i was when i first got my POTS and i thought i was getting better. I just have not had a bad day like this in a long time that it really freaks me out that im going to be stuck like this. Do you have any tips for what i could do to calm myself down? I dont have anymore Klonopin so im at a loss of what to do right now. Sorry if i sound so complainy i just feel so scared right now and my mom has been in the hospital for a month so i dont have her support when i really need it

Dani, I'm so sorry you are going through this. My heart goes out to you. I've been through some major stressors and I know how that can affect us. As for your cat, I'm sorry! I have two myself. I know the other day I was listening to a meditation cd and was almost asleep and the phone rang. WEll, that did it, I was toast for the day. My heart wouldn't stop pounding.

Perhaps some breathing exercises or some gentle music? I know easier said than done when you feel like you are crawling out of your skin.

I'm so very sorry about your mom. I hope she's doing better now. I too take Klonopin. I can't say that it helps all that much.

People don't understand our condition. You have to do what's right for you. Rest, relax, read, and you are not complaining. We're all in this together.

As I sit here typing, my body is literally shaking. No one gets that. No one gets alot of things. But we all understand you!

Try resting, taking a nap or just watching a fun movie.

Sending you hugs,

Ruekat

i am having such a bad POTS day. Actually this past week has been horrible. Im pretty sure its related to my boyfriend of 5 years moving to a different state. I have such bad brain fog i almost feel like im dreaming. My nerves are on end. Literally today my cat jumped next to me while i was laying in bed and i thought i had a heart attack. Im so shaky and out of it feeling almost drugged up. This is really disappointing because this is how i was when i first got my POTS and i thought i was getting better. I just have not had a bad day like this in a long time that it really freaks me out that im going to be stuck like this. Do you have any tips for what i could do to calm myself down? I dont have anymore Klonopin so im at a loss of what to do right now. Sorry if i sound so complainy i just feel so scared right now and my mom has been in the hospital for a month so i dont have her support when i really need it

Oh Dani, I'm so sorry for what you are going through. My how I can relate. I too am at a bad period in my life. People expect us to just snap out of it. No one knows how it feels to be in a flare. As for your cat, shame on him/her! Just kidding. I know the other day I was doing a meditation cd and was peaceful for once and the phone rang and it took me all day to recover. It's hard calming down when you feel awful. Deep breathing may help. Listening to a calming cd might also. I take klonopin but that doesn't even do the trick. I'm so sorry about your mom. I hope she's doing better.

Just hang in there. Do what's best for you.

Ruekat

Hi Carina,

My heart breaks for you. You are in a Catch-22. I'm in an almost same situation, except that I have no one. I've been divorced 1 year (pure stress) and now I'm totally alone. I too have the hyper POTs and it scares me to death. It's to the point where I fear driving because I hear my heart pounding away and I know that means my b/p is up. I have no one. I just moved from my dream home into a townhouse. I'm so stuck. I have no one to take me to the grocery store, dr's etc. I understand where you are coming from. You have someone who is there if you have an emergency.

However, abuse should never be tolerated. I think one of the reasons why my husband left me was because he couldn't deal with the fibro/cfs. Luckily for him he wasn't around when the dysautonomia struck. I wonder now how I'm ever going to find someone. My friends keep telling me to get out of the house, but they have no idea about this condition. Do they think I want to be this way??? I'm tired of the headaches, the fatigue, shaking constantly. Scared of a panic attack or worse while out by myself.

You have to do what is right for you and your daughter. If you wish to stay with this man, you must insist that he continues the counseling sessions. I have started seeing a therapist myself. I've never felt so utterly alone. And now my ex is marrying a much younger woman.

I wish I had a better answer for you. Right now I would choose anyone rather than be alone - but I'm only speaking for myself.

Good luck and I hope things work out to your advantage.

Ruekat (Rene)

Hi Pat,

Sorry I didn't get back to you sooner. I've actually seen two EPs. Both barely have the time for me and quite frankly, I think they are sick of me. I guess if they can't fix it, they don't deal with it. I was using the Group out of Abington Hospital (there must be about 15) and saw the EP. The other guy is in Jenkintown with PA Heart and Vascular. He's the one that dismissed me.

Are there other type of drs we go to? This is all so confusing. And during my tilt table test at The Braemer Heart Institute at Einstein my b/p went to 40! You kind of wonder if that can trigger a major flare up and that same week is when I had my nuclear stress test. After not being able to walk that much to suddenly be running on the treadmill really took a toll on me!

I wish everyone well and if anyone else in the area knows of someone, please pass their good info along!

Many thanks!

Rene (ruekat)