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The people who have been posting about the blood pooling theory?? are right. Essentially lots of blood is being sent to the muscles of the leg and the muscle groups of the femur are the largest (quads, hamstrings in relation to your body. Add in the lower leg and all those little stabilizers and deep muscles, well you get the point. Now exercise is supposed to create a "muscle pump" that helps to push the blood back to the heart. This does occur but it is such a large volume of blood and we have blood flow problems even at rest, it tends to pool in the legs. For those of us who have trouble with exercise I think of it this way. Our bodies don't correctly adjust to postural changes (stressor), weather (stressor), anxiety (stressor), even eating, resting and going to the bathroom at times. Exercise puts an enormous strain on our already "haywire' nervous system. It's trying to adapt to normal everyday things like standing or walking a few hundred feet and then throw in exercise on top of that... you get the point. After your done with exercise your blood pressure does drop. Thats why cool downs are so important. Doctors mention leg exercises in the hopes that we will keep our muscles strong and help to rework the neural pathways etc. Some people with our syndrome can still manage exercise and Doctors probably hear feedback. Other Doctors, and this is from experience, other Doctors (not all Doctors) don't have a clue of what exercise can do to the body. There are many physiological changes that occur. I can get quite more detailed than this but I hate typing. There are things to consider like Valsalva Maneuver (make sure your breathing correctly) but I really feel the blood pooling coupled with our already "haywire" systems is the culprit. Try swimming and doing leg exercises in the water, the hydrostatic pressure from the water does a very good job of moving the blood. The water helps you to work at a lower heart rate and steadier blood pressure. Water jogging is an excellent way to strengthen your legs. Start out slow and it's quite enjoyable. I haven't been able to stand that long without symptoms for a long time.

I have been on Lyrica for two years for my dysautonomia. My neurologist, Dr. Thomas Chelimski, put me on it when I started to see him. It can actually help to calm the nervous system down, it's been approved for treating anxiety disorders in Europe(I believe its being considered in the US) but is primarily used for the treatment of nerve pain in cases such as cancer, diabetic neuropathy and shingles. One of the rare side effects is hypoglycemia, I don't have my PDR with me at the moment so I couldn't tell you the incidence. It does seem to calm my system down, I have tapered off a few times to try something different and noticed I became "wired" again. The only thing that has ever helped me was a 1mg dose of Xanax xr. For 5 months I could exercise, drive, sleep and had no episodes. My episodes are quite similar to yours however I have not fainted. These episodes are unfortunately the norm for people with POTS/dysautonomia. Lots of people on the forum have "episodes"(I call them that also) everyone has different symptoms and I'm sure they are caused by many different things. Everyone also reacts to medications very differently. I have seen people with mild high blood pressure need more of a beta blocker than someone with high blood pressure. In Sandy's case she may be more prone to the Lyrica causing Hypoglycemia. I have had a three hour GTT with readings of fasting 97 one hour 74 two hours 110 three hours 55. Not perfectly normal but I haven't had a reading below 65 on the Lyrica (and I check now and then) and I'm usually between 80-100 even when I'm having an episode. Lyrica is not perfect and I would love to try a low dose beta blocker but seeing that my HR at rest is usually 48-54 and at times I have a low BP I'm still cautious. Do a search and you will see a few threads about Lyrica and what some of the others have experienced with it. Everyone's syndrome is different ie. causes, symptoms and reactions. Good Luck and I hope you are able to find some relief (I really hate those episodes also).

For the first year (especially when I was trying to tell the Docs something was wrong with me) I had only a little trouble with exercise. I could do stair steppers and ellipticals while keeping up with a moderately high demanding weight training program. I would feel wobbly afterwards or a little tired but I kept it going. I found that the 1mg of Xanax extended release really seemed to help with the exercise (this was given to me about 6 months in). When I finally got the diagnosis I was pushing so hard for the Cardiologist at the Cleveland clinic took me off of the Xanax and I have had a terrible time exercising since then. Two weeks after they took me off I almost fainted during exercise and had a wonderful tachy event. These types of events continued until I finally decided to lighten up so much it just didn't seem like exercise much anymore. It was in 2006 and I do very light things now put i have a tremendous amout of fullness and disorientation in my head which does not correspond to HR or BP measurements. The wonderful irony is that I am an exercise physiologist who was at around a 19-20 MET level before this all started. Four months in I still managed to complete (every stage) the Bruce Protocol for a Stress Echo at a HR of 167. Now I feel like garbage for a few days after water jogging for 30 minutes at a moderate pace. Although I feel lightheaded walking at times I still walk when it's possible. I never exercise alone. The old adage of knowing too much can be bad is true for me. When I feel symptoms I stop just like I've been telling everyone else to do for years. I have unfortunately seen some things happen and err on the side of caution for myself. I LOVE AND MISS exercise/fitness so much. It is such a big part of my life and I know I will never completely accept this if I/we(the docs) cant figure out why I have such terrible ex. intolerance. My neuro (Dr. Chelimsky) is a little baffled by this as am I (but he wont put me back on the Xanax either). My advice is to always start out slow. WARM UP for 5-10 minutes very gradually increasing the intensity (this is true even for the completely healthy) so our bodys can get ready for the increased demand. Work out at a comfortable pace paying attention to your HR.... 55%-85% of max HR is the guidelines but you should strive for 55%-70%. This will give great benfits and allow for increased time rather than increased intensity (thats already increased for us) Pay attention to your breathing, sweating, hr and how you feel overall. If you experience any type of discomfort stop and notify someone if you are at the YMCA or other place. COOL DOWN for 5-10 minutes. Gradually reduce your pace to help decrease your HR and BP. This will help lessen blood pooling, even in us. Never jump off a machine before cooling down. People without our problems faint from this. Stretch a little, drink some gatorade or get some potassium and salt and fluid pronto. If anyone has any questions feel free to send me a message. I don't go on here everyday but I will get back to you. I would certainly enjoy helping anyone who has any questions concerning this topic. I'm very familiar with Cardiac Rehab and the ACSM Guidelines (American College of Sports Medicine) and I am a Certified Strength and Conditioning Specialist through the NSCA (Nat. Strength and Cond. Assoc.)

I get those sensations all the time and sometimes they lead to tachycardia (even lying down. Like Mom I usually have to go to the bathroom afterwards and sometimes I get strange sensations in my intestines. It feels strange especially when you can feel the sensation traveling then in my case it seems to leave through my toes. If anyone has ever had an emg done it kind of feels like that (electricity going though your body). I figured autonomic storm or adren. rushes and a few Doc's felt that seemed right.

One of my best friends told me last year he thought his ACL tear was worse than this. This was after I e-mailed all my friends many, many websites about the disorder. Some people just dont get it. Last week another friend and I were watching the NCAA tourny and I had either a panic attack, hyperadrenergic attack, episode (worst one ever thought it was a MI) or whatever you want to call it and he said he finally gets it after 3 years. Came on out of nowhere, guess I just have to do it in front of all of them.

Mine have always come back abnormal from 1/160 to 1/640 at various times since the dysautonomia/pots. I have also had an active EBV panel during all this and I think they are somehow related. Since my tilts have stayed the same over 2.5 years they feel this is why I have the dys/pots, they feel post-viral and not a progressive disorder.

I get that as well. I feel like everything is getting sucked inside my sinus cavity then go into a tachycardia (the vibrations may be the sensation of your heart contracting harder from the adrenaline) I was on a 30 day event monitor when it happened to me (after going to the bathroom) and my rate went up to 171 and It was a sinus ryth. You may want to ask your doctor for an event recorder because the other thing it sounds like could be atrial fibrillation (and that can also make you feel like crap). But the progression is just as you said. I actually kind of know when its coming on from the weak feeling, the head thing and then I know the tachy is coming. I was told to lay down, put my feet up and try to ride it out. When I'm alone I have called 911 when my HR is real fast just to be sure but so far it goes away. Its as uncomfortable feeling as I wish to ever have but what can we do. I have been able to check my BP has been above normal (115/75 being normal)(again because of the adrenaline) so if I put it together correctly It's basically our fight or flight response being signaled for some reason. The reason someone would feel weak after an episode like this is from the large adrenaline dump. I can remember the first time I was in a fight (it was in high school and I don't condone it) I felt like crap for hours afterwards and I was unscathed. It was because of the adrenaline. The one doctor I had in the ER after the 171 episode asked me how I was feeling and I said like crap. He said, Well that huge adrenaline dump can do that to you here's some potassium and you can go. (Potassium shifts out of the blood and into the cells to be readily available for fight or flight (or when adrenaline is pumping) if I can remember Anatomy and Physiology correctly If not someone please correct me on this) so I think thats why I have had 3.4 or 3.3 blood level readings after this happened on two occasions.(normal is 3.5 to 5.1 or 5.2) My neuro said that some of our brains seem to be stuck in the should I faint or not state and thats why sometimes we can get low hr and bps or the reverse. Since our electrical systems our basically miswired our sympathetic nervous system just gets a signal to go haywire for no reason. Well this is what I have experienced so its one more idea. I really hope you can deal with this rather annoying symptom better because it's the one I struggle with the most.

I'm going to be trying a low dose very soon. I have been a little scared because I have a low resting heart rate (40-50) and my BP drops low at times but my neuro (Chelimsky one of the best) said that its all about the dosage and it can actually balance out your ANS so my HR and BP's may stabilize. Of course I'm being put on a Holter for a bit just to make sure it doesn't drop too far when I sleep. I'm at the point where I will try anything.

I have been giving stress tests since 1995 in college and the real world and have never seen a sinus tachy of 278 bpm. ****, for that matter I have only seen about 10 that have barely cracked 200 in max testing college age people. I just love the POTS GONE BAD crack, what an ***. I have just started getting either a SVT or atrial tach and have ended up in the ER 3x in the past few months. Caught it on the monitor twice and once the EP and I agreed no SVT, this last time looked like SVT. I feel like crap afterword and and the trigger twice has been going to the bathroom. The Doctor I had today was around 70 and he knew about POTS and took it seirously(**** the whole ER in Lakewood knows about it after the last few months) but he told me that some doctors will take POTS and throw it in the wastebasket. I just love how serious some of these people take their jobs. I told him to line them all up outside and I'll throw them in the dumpster. I really hope you get to the bottom of this, I've heard different things from different docs and I am frustrated. I had the first cardiologist say it was an SVT at 122 and 138 bpm (during sleep with my holter), then the EP said it wasn't SVT and I had to agree I didn't see it either, the last one we caught sure seemed like SVT at 172bpm and the tech who recorded it said SVT. I just want to know what it is, hopefully ablate it (my neuro is very concerned about the treatment since my resting rates are in the 40's and he seems a little scared of ablation) and get on with just dealing with POTS. I wanted to ask you one question since you are around this alot more than me. I have been active since I was a little kid. Was an athlete in high school and college and exercised all the time as an adult. I never had any problems that showed up on weekly stress tests in school or even when I first got a stress echo when my POTS was young. I think my neuro is concerned about ablation because of the whole you don't ablate pots but they would be ablating an accessory pathway if they can trigger it during the study; right? I spent only one week in a ep lab and saw lots of things but nothing with POTS. I'm pretty sure my wonderful overactive vagal nerve (I hope I get a new one for X-mas) is very influential in all of this but it would only be causing the stimulation that triggers the accessory pathway; right? Anyway, I hope the EP study goes well, they find it and ablate it. I really admire you because if I had a HR of 278 (I can barely stand the 170's without it being from exercise) and the doctor was could be this or could be that, I think I would blow up on them.

Hi Maggy, I have been on Lyrica since May '06. I have not experienced any HR related issues on it and my BP runs normal to borderline high (130's/80's) but I think that has more to do with salt and fluid loading. I have been able to stand for hours over this summer and I am not sure if the Lyrica has anything to do with this either. Since I have been on it I have had alot of trouble exercising, some balance issues (showering is fun, closing my eyes when standing *****), and spacial disorder/light sensitivity has been worse and I get alot of twitching (my thumb will literally have a mind of its own and that never happened before the Lyrica). I plan on weaning off of it and trying Celexa. I really need to try and exercise again but when you get dizzy when you exercise you should stop and I do. (I am a exercise physiologist and I try to use the whole do as I say and do credo; safety first) I don't know how bad your POTS is but I know I did better on a very low dose of Xanax for 6 months and when I went off of it I had a "relapse" and I finally got to see a neuro who is very much against using benzos. If I were you I might think of asking to try something different, it may give you ten hours not five. I have stayed on it because the only real issue is the exercise for me and although I'm an exercise physiologist and staying fit meant/s alot to me I really hate trying new drugs over and over (had a reaction to Zoloft and now my wife and I are ready to park in front of the ER when I try celexa). Good luck with whatever you decide; I wish our experiences were more alike so I could benefit more.

I have had really annoying spasms for the 2+ years I've had POTS. I get them in my head also, mainly by my temple and above my ears. For the first 4 months I felt like my head and neck weighed 50 pounds. I remember driving home from work all the time and getting spasms and propping my head up with my arm. I usually just got done exercising about an hour earlier and had a 25 mile drive home (which made me nervous because I was lightheaded and had no AC) so I would actually focus on the spasms to take my mind off of the drive. My neuro and primary said they were nothing to worry about and people with any type of nervous system disruption can get them. I was worried about MS or other things and I still get them but I learned to deal with them as just another wonderful symptom. If you are really worried talk to a neurologist about it and hopefully he/she can ease your mind. Take care and I hope you find relief of your symptoms.

Mrs. Burschman Dr. Chelimski specializes in ANS issues and I think alot of neurologists don't like using tranqs, even milder ones because of the addictive nature. I got off it once with no problems and never had to increase from a 1mg extended release for 6 months so I truly don't see the big deal. Some people get addicted to things (drugs) easily, I have never had that problem. Actually, I hate how has a country many people (not any of us!!!) rely too much on medication when education, diet and exercise can relieve many non-genetic issues (like mild Adult onset diabetes, borderline high BP, high cholesterol(non-genetic), childhood obesity). I struggled for months to even try the Xanax and finally my wife and parents urged me to try it. (Not to mention drug companies making 300,000 different drugs for impotence, High BP etc. which jacks up our prices and makes the lobbyists stronger than the voters but I wont get into that now) It sometimes causes problems for people who really need the meds like all of us, not to mention more dollars going into research for certain medical issues for lets say..... POTS and other ANS issues.

I would strongly suggest to ask your Doctor to rethink the lopressor. My resting rates are also low (33 when sleeping; 48-55 when sitting or lying around) and I suggested "Do you think thats a good idea" to two cardiologists and my ANS and they thought about it and agreed. During the first few months of this wonderful journey I would cry and my wife pretty much knew something was wrong. At that point we were married for 6 years and she saw me cry once during the first year (like a baby) when my 17 year old Golden retriever had to be put down. With the POTS crying I strangely do feel better afterwards, just like the pressure valve thing earthmother was talking about.

Xanax was great, wish my ANS doc would let me on it again. Lyrica has been okay but I could exercise on Xanax not so much with the Lyrica.(and we can't figure out why)

You mourn, pray and lean on your friends and family. My wife and I are struggling with this right now and we are so ready to begin a family. I'm 34 and my wife is 31 and we have decided it would be much to hard for her to work and have a kid when my health is so up in the air. I hope somehow you will find comfort and peace with the situation.

Thanks for the posts. I'm not really sure what the pheo work up would entail. I had an extensive workup April '06 that included Tilt, Autonomic testing,MRI, EMG, Nerve conduction and extensive blood work. Everything came back completely normal with exception of HR increase on tilt, excessive response to Valsalva and increased standing norephinephrine (870) decreased standing adrenaline (10<) (resting values were fine 157 and 13). All my nutritional values B12 B6 etc. were great. Fasting AM Cortisol was 16.6. Basically the diagnosis I got was: The findings are most compatible with a central nervous system disturbance of cardiac and vasomotor control, with differential diagnosis including post-infectious, brainstem structural (seemed to be ruled out by MRI) and migrainous etiologies. I have felt the surge in my chest also. Sometimes I feel like my heart stops, then I get a surge from my chest to my toes. It's interesting the comment on your weakest spot. I have had more problems with my legs than anything. I definitely have blood pooling in my lower legs, they get a little swollen at my worst other times nothing. Since the er visit last week they feel weak and I was able to stand for up to 3-4.5 hours with little sitting over this summer. What a wonderful and strange disorder we have all aquired. The funny thing is I read on the forum and my wife and I are like wow and I only have a milder version. Sometimes it sure doesn't seem like it. Mom4cem, any tips on the driving? I'm usually okay driving around my city but the highway is my nemesis. I did it for a year before all this was made clear but I had another attack driving home from my EMG test with my dad on the Cleveland Innerbelt with nowhere to pullover so I basically said &^%$ it after that. I really cant go on a beta blocker because my resting HR runs around 48 alot of the time (33 during sleep according to Holter) and my current doc an ANS nuerologist wont let me take Xanax again. From Oct. 05 - Mar. 06 1mg of Xanax xr a day worked absolute wonders. I drove, exercised lived like I had only a mild, annoying disorder. Again thank you all and have a great day.

Hi everyone, I have a question about adrenaline surges. I believe they have sent me to the ER 3 or 4 times in 27 months. The worst was the first time when I almost blacked out driving. Here is my question. Does anyone feel the surges running down their legs and into their feet? The first ones that hit me I would swear started from my kidney area(adrenal glands) ran down my leg into my feet and my feet would begin to sweat and then I would have to hit the toilet. Lately I feel only light rushes mostly in my feet. I had some the other night that didn't bug me too much until they wouldn't stop, I got extremely lightheaded, and started shivering. I had my wife take my temp and it was 96.3 so I thought it might be a good time to visit the ER (everyone knows that feeling, driving home embarassed but happy it was nothing seirous) My potassium was slightly low at 3.3 but I had sweated (for like the first time in a while) doing some work at my mother's the day before. Basically, I'm interested in seeing what people feel because when I ask Drs they say it has been described like that to them (and the whole parasympathetic surge thing also). It's strange because 99% of the time I just deal with them but the other times they just got worse and turned into a panic attack (though strangely I'm fairly composed during the ordeal). Thanks and take care.

I have had POTS with suspected Post Viral onset for 27 months now and Dr. Chelimsky (neuro from University Hosp Cleve) said I should be better in 2-5 years. Its not clear if he meant from onset because I had mild GI problems (they have cleared up) in April '04 4 months after a bad virus, first full blown POTS adrenaline type attack in April '05 and since April of '06 (when I started seeing Dr. Chelimski) I have actually felt worse. I think the past 14 months have been mentally draining more than anything. The first year stunk but I pushed and got my diagnosis by January of '06 when I begged and begged for a tilt because my HR would go from 50 sitting to 95 standing and I knew that was wrong from my profession. In April of '06 while exercising I experienced a BP drop with lovely palps and I have had a hard time exercising since. (I'm an exercise physiologist and I love exercising so mentally its killing me) I wont drive on the highway after experiencing my 2nd full blown adrenaline adrenergic type attack in May of '06 ( the first was also in my car I felt great because the first time I got right back to driving but the second one got me mentally) I lost my job in March due to funding, after 10 yrs and the added bonus of them actually helping me out it took alot out of me. My Father who was a huge help to me passed away in May so now I am just pissed and frustrated. I guess what I am getting at is I am also very frustrated and have wondered daily is this going to go away. I am going to speak with a chronic disease management specialist at the request of Dr. Chelimski. (He said 2 weeks ago I seemed a little depressed hmm I wonder why) I have faith that God will heal me and it may take 5 years and I'm not always positive but I do try to tell myself daily of the positive things that may have come from this. I got to spend alot of time with my dad the last two years, more than if I did not get this. I'm alot more patient than anyone ever gave me credit for. I do not take the little things in life for granted anymore (**** a 15 minute warm to hot shower is as good as a 45 minute cardio workout at 80% max hr to me now) My Lutheran upbringing has reemerged and I know I have faith in my prayers more now. I am very frustrated also and I think that is okay. I know the specialist I talk with will preach acceptance and so forth. I will never fully accept POTS as this is how it is and will be so live with it. I accept that this is a portion of my life, I am trying as hard as I can and I will look back on this as a learning experience. I apologize for the rant and basically want to say I feel that if you think you will get better it will help alot. I am trying to learn not to put a time table on it because everyones body is different and I feel that those of us with post viral onset will see improvement at some point. At my dad's wake I stood for about 4.5 hours with little problem and felt like hey my body can remember how to do this because I needed it to (I have learned over two years not to get my hopes to high though, I paid for it about a week later when it got real hot out I just know that the more positive my thoughts have been the better I've felt and the opposite is true with the negative days also. Take care of yourself. Take care

I get this too and think it may be due to adrenaline surges. One year before I had my first major surge I would be driving early morning with my friend going to play golf. Into our drive I would sometimes start to get these rushes down my legs, start sweating and have to have a BM. I would oten have a big mug of coffee about a half-hour earlier. Well that was my pre-pots days and when I had my first real episode I found that when I drank coffee the same thing would happen. When I cut to half-caf after the diagnosis the bad surges went away. Sometimes I do get that feeling just sitting around (I use very little caf now) but I don't get the rushes down my leg anymore but immediately after the bathroom visit I feel much better. Also have you ever checked you blood sugar during one of those episodes, I have reactive hypoglycemia due to the POTS and the effects are very similiar. One day I almost couldn't make it to the bathroom I did, went to the kitchen and drank some OJ and the sweats were gone in 5 minutes and I felt great. Just fishing a bit but I hope you feel better.

I wonder the same thing. My resting is in the 50-60 range and then I get to 90-100 when I stand. I can stand for a long time and even do light work for hours if I want. My HR's seem alot better than most but I get all the other fun symptoms alot constant eye floaters, memory/concentration problems, sensitivity light etc. My HR did a strange thing on my tilt it would cycle for a split second from 90-100 to 50-60 in perfect sinus rhythm. Dr. Chelimsky said he never saw that but said it was POTS from the other data (standind NE 800, sweat test, blood pooling in legs). The funny thing is over the past year its exercise or moderate activity that makes me feel worse. The driving thing with you is what gets me. I have had most of my "surges" while driving, the first and worst one was April 27, 2005 trying to drive home from work and I thought I was going to die. I really dont like driving now but for the most part when I'm sitting down I have no symptoms. Light really disorients me and I think that plays a big role. Clear skies, lots of light, traffic really seems to overload my system. I sometimes wonder if I have very mild POTS but some sort of other nuero thing going on. Anyway I sense from you recent posts you are having a very hard time right now (I'm starting to get very impatient with all of this also since exercise/fitness is my life and I cant really do much) so I hope you take care and pray that God helps each of us get some comfort and peace with our conditions.

I've actually felt better on antibiotics for a sinus infection. It sounds like a reaction thats common with lyme patients.

I get that feeling also and since I'm male I don't get the period. When I get like that I always have the urge to go to the bathroom and usually that makes it go away for me. Sometimes if I take a packet of salt and drink about a half liter of water that also helps. It's really annoying how many things we have to deal with on a daily basis with POTS. If its not one symptom its something else. I wish all of you well.

Hi Pat, Dr. Chelimsky at University Hospitals is very good. He is a neurologist and I have been seeing him for almost a year. I went to Dr. Fouad but thought they were way to busy and it seemed like they didn't really manage the syndrome as well as they diagnosed it. Dr. Chelimsky has a great personality and is very easy to talk with.

I'm 6' 2'' and was 188lbs at 8% body fat when this hit me. Because of my exercise intolerance I'm now about 196 at 11% body fat. I was very fit and probably in the best shape of my life when this hit me. I've read things where POTS can hit any gender at any fitness level at any age at any time. As mentioned by DADofPotsSon I burned the candle at both ends too and this has been a very humbling experience for me. As a execise physiologist I loved to exercise and golf and also work on the house and work. I had a constant level of energy but learning how to pace everything has been a difficult thing.

I'm from Ohio also. Go bucks!