lotsicker

I have been confirmed a dysautonomic but, it is a secondary result of the Herpes Virus attacking the spinal column at the base of my neck. I have struggled with this virus my whole life and have a rare form that my body cannot fight off. I am now taking Famvir and BB and paxil.

What was not explained was why I have low renin and low aldosterone yet not the high BP that goes with it.

Anyone else have this issue??

Hi Kimi~

Where is this Dr Burke located? I'm in Tucson, and I think you're in Phoenix, is that right? I may want to try to see him if possible.

Thanks!

Jana

Dr Burke is with Scottsdale Cardiovascular Center 3099 E Earl Dr. He seems VERY informed when it comes to dysautonomia, I would defiantly get in to see him if you are looking for a good cardio guy.

Thank you all so much for answering. I have had a TTT that proved negative, I actually felt better when they pushed the meds that are suppose to make you pass out. Though I did have heart fluctuations, they were not consistent with POTS. I had an Ehco and several EKGs, 24 halter, etc. done over a year ago that were all abnormal but, I was given beta blockers to help the symptoms and sent on my way.

I am now with a new Doctor who studied with the MAYO, Dr Burke. I have had one visit with him and he believes I have a different form of dysautonomia or a very rare Herpes Virus that has attacked my heart and left it damaged. He is repeating the Echo and halter, doing several blood tests to compare to the old ones. I do not want to be in either condition but, I think the dysautonomia seems very hard to live with and treat.

God bless all of you for going through this daily!

What role does posture play in how you feel? Are your symptoms always worse standing and better lying down?

Yes I always get relief when sitting or lying down except when I have an illness. I do have the classic 69 lying, 99 sitting, 108 standing but, only when I am having stress related symptoms. I can have plenty of days that the only time I have HR issues is when I try to lift wieghts at the gym or walk up hill.

I look at it in two ways. If I'm doing all the basics you mentioned, and the weather is cool and dry, overall I feel better... but the weakest link is my posture - even on my best days I can only stand for five or ten minutes before I need to squat or lie down. However, if the 'basics' are there and I'm horizontal I feel great.

On the other hand, on bad days, even doing nothing and lying on the couch the palps are stronger, chest is heavier, brain fog plays games with me and standing for more than a minute tightens the brain clamp.

hmmm...This is where I question what is going on. I truly believe I have a weakend heart muscle as my symptoms match that of congestive heart failure rather than the consistency of a true dysautonomia issue. I have 24/7 symptoms when I have a cold or flu and sometimes wake in the middle of the night with a rapid HR if I have over done it the day before.

Hello,

I have been able to confirm that I do not have POTS. My symptoms have gotten better over the last year or so but, not gone. My new cardiologist beleives I have a different form of dysautonomia or a very RARE cardiomyopathy.

What I would like to confirm with everyone is this:

Do you have symptoms regardless of treatment ie: staying hydrated, getting plenty of rest, eating well?

I have found that I only have symptoms (palpatations, dizziness, fatigue, various heart pain) when I have neglected the basics mentioned above, drank alcohol or tried to exercise.

I would like to eliminate dsyautonomia but, need more info from you guys!

THANK YOU!

Hi Twinmom,

I am a twin mom too. I think your readings look normal. I know that when I have the same test done that you have, my heart rate goes from 69 to 99 to 120... This is ALL THE TIME. The only thing that helps my HR is beta blockers.

I think what you have is cronic fatigue syndrom with fibermyalsa (spelling?) That would explain the passing out, pain, feeling sick etc. Often having twins can drain your system so much that it can't recover. CFS is a VERY real and VERY disabling syndrome. I think you should research this and see if your doctors can confirm.

You are not crazy...I just think you have something other than POTS. With POTS, you can't do anything without a rapid HR, sometimes even laying down doesn't aleive it. As an example, I had the stomache flu last week and even resting my heart rate stayed at 100 to 109. Getting up it went to 120 to 145. I felt like I was dying. Today (a good day), even on my long acting beta blocker, I can feel the palpatations when I vaccum or clean the bathroom, lift the twins etc. Its always there.

Keep me posted as to the CFS and fybermalasia

My biggest question would be associated with Trauma. Why would a trauma bring this out ? These people arn't developing PTSD or any other problems for the most part. Giving birth to twins is a good example. This is definately a trauma. I postulate again, there must be some type of correlation between a lowered immune system and "letting the cat out of the bag".

I'm not a Dr., so take what I say with a grain of salt and for education purposes only, but I honestly feel that it is this area of the brain that is being affected to cause these symptoms. Lastly, I want to end this post by saying that I'm not in any way shape or form saying that any of you have Lyme. I'm using it as my example and perhaps it is something you should look into. There is a big war going on between the IDSA and ILADS organization. IDSA are you infectious disease Dr.'s, where ILADS are your LLMD (Lyme Literate) Dr.'s, who are now popping up all over the country as many are presenting with Lyme symptoms. This is what I'm dealing with.

Take care and be well,

Gary E. BSN, RN

Hi Gary,

I had twins via C-Sec. A c-sec that the spinal block did not work! I felt every cut, pull, tear..etc. In addition, I lost alot of blood and got a bad infection. This in it self would be enough but, I did not have my first POTS episode unitl I was bitten by a black widow a year later. I think my body was desperately trying to regulate itself after the trauma and the black widow bite took it over the edge! Basically, everyone's body has its limit. Look at victims of domestic violence or war vetrens that has suffered HORRIBLE trauma, yet they do not have POTS. Yes, it is the "regulator" in the Brain that gets messed up but, who is to know what limit their body has?? I do not beleive its a comprimise of the immune system, I beleive its an overload of addrenal secretions triggered by the illness/trauma that finally burns out the "regulator" in the Brain. That is why some see an improvement, and some don't. The body continues to heal itself and some days our disfunctional autonomic system "kicks in" and some days it just can't take it anymore.

Just my 2 cents...keep your head up, I have read that it can spontaniously correct itself....

Thank you all so much. I am feeling much better tonight and was able to eat dinner. I haven't gone to the ER for any of my "episodes" yet. I realize that there isn't anything they can do but, its so tempting when you feel like death warmed over.

You guys got me through it today....this is the best ER out there!

I am so sorry your SOOO sick! I haven't been able to take pain meds since I started with POTS either. Makes my BP go way up along with my HR. I do know that you can "become" intolerant of meds even after taking them for some time. Have you thought of doing a complete medication re-evaluation? Maybe you can eliminate some or replace some.

I wish I had more advice but, I am so new and I am having a REALLY bad day too. So dizzy now I have to sign off

Take Care

Thank you both. I have been able to get down 3 glasses of water and some salty popcorn. I am feeling better while sitting. I will keep up the fluids and try broth.

My primary care and cardiologist are both supportive of my going to the hospital, I just don't want to go! I beleive it must be the dehydration and trying to do WAY to much yesterday. Its so nice to have someone to talk too, I don't feel so alone or crazy

Hi all,

I am REALLY sick this morning. I would say I have the stomack flu but, this is typical for me on really bad days. I have come so close to going to the hospital but, always feel so stupid that I don't go.

This morning I am VERY dizzy, extremely nausous, pale and HR stays in 80 and 90 even when sitting(jumping way up when doing anything else). I feel like I am dying (I am sure you can relate). Would you go to the hospital or wait it out?

Hi,Mine appears genetic. I started having symptoms very young.If you are interested in this topic further, it has been discussed many times in different threads. To find old threads use the search feature on the bottom of the page. I just wanted to add this because many of the people who have posted here for a while that have answered this a few times may be less likely to respond. So, to get a better overall view looking at previous posts would be beneficial. There has been polls etc. on the topic.?

In my bad days, like today, my palpatations awalys feel like a flopping fish in my chest. They "radiate" so strongly you can actually see my chest pounding! It can feel like its in your stomach, esspecially after eating. When I am like this, as long as I don't do anything strenuous (like I could:) my EKG and Halter test showed its not life threating. However, when doing a treadmill test during one of these episodes, my EKG shows abnomal HR. I would request a stress test to see what your heart can handle.

I can be VERY scary but, unfortunately its part of our condition. Beta-blockers help keep mine in a managable range....

Try Wieght Gainer, its a powered product at health food stores that should help if you can digest it. I also eat LOTS of french fries and ice cream. As we know though, LOTS for us means a small but, hey, is better than nothing.

Hi,

I thought I would ask the question of what caused your POTS so that we can see how many were born with it and how many got it later....

Mine was caused from carring twins then having a TERRIBLE delivery(babies were perfect at 5.14lbs and 6/11lbs!). Blood volume was a major issue along with infection. My first full fledged POTS attack occured 14 months later though I never felt quite the same after the delivery.

How about you??

Hi and welcome!

I am a twin mom too and am new to this board. I have 22 month old twins along with 11 and 12 year olds...ALL BOYS. My POTS is still being dx but, my issues are slightly different. While I don't faint, I have extreme HR changes, shortness of breath, vertigo, fatiuge...YOU NAME IT! I don't have any info on the clinic your trying to get into but, I thought you would want to hear from another twin mom.

It is tough having the little ones and not being able to do much. I feel guilty and lazy but, I just can't do it. My husband works 3 jobs because I can not and that makes me feel worse! Some days I feel like I just can't make it (with my hubby always working I have to the kids myself) but, I have no choice. My only saving grace is I know I will get better once I get on the right treatment.

Hang in there!

I just wanted to add my 2 cents

I am a VERY athletic person. I have GREAT muscle ton, (i.e. I have 22 mo. old twins but, still have a six pack without surgery!) I work out (OR DID ) all the time. I even still push myself to work out but, I can tell you this makes me WORSE not BETTER. Your Doctor sounds like he is full of doodoo. I do agree that walking and increasing circulation does help and should be a daily goal. I do not agree that increasing your muscle tone is a cure! If you are feeling better, sure get to the gym. If you are feeling like crap...just walk. The goal is to increase blood volume and circulation...I guess in his mind more muscle means more blood volume...???

DO not give up hope, try playing an exciting game on XBOX or even reading a suspencful book, they both increase blood flow with out having to exercise (and possibly build the BRAIN muscle...if that counts:)

I find that I feel just like you on my worst days. I had read that POTS can mimic CFS and its often misdiagnosed as such. I have read that you can have both. I think our bodies enter into an almost crisis state which force us to do nothing but lay down. For most of us this not an option! It does feel like depression and I get SOO irritable! I find that if I can rest as much as possible, I do feel better in a couple of days.

I am hoping you feel better and I am sorry its such a rough day!

All of my dys symptoms tend to come and go. They have never been constant.

The seem to cluster and cycle somewhat ... and there are certain things that can trigger or worsen a cycle.

I am wondering if any of you have the same?

If so, would you happen to know if there is data that talks about the nature of these "cycles"

YES. For me, my first "episode" lasted almost 4 weeks and then I woke up "better" I was only well for about 2 weeks when it hit me again. This time it lasted a week. Then I was fine agian for a couple of weeks. Then again, a terrible week then a good week. The 4th episode was SCARY. I thought I was going to die and it lasted almost 2 months. Then once again, i woke up Jan. 9, all better (kinda) by Feb. 14, I was sick again and have been ever since.

So I do have "well" periods of time but, ever during these times I can trigger symptoms with exercise, drinking or if i get a cold. The difference is the symptoms are only temporary. While in my "sick" periods, like most of us, I can't do ANYTHING without symptoms and I am completely disabled. As of yet, there is no pattern like monthly or food triggers...just alcohol.

Hi. I called my primary for some test results and his nurse gave them to me and said to follow up with a renal guy but I don't think that is the answer. I didn't even get to speak with the dr. himself. Hopefully he will call me back.

It was Aldosterone .4 - (1.5-18.2) is normal

And Plasma Renin 5.2 - (.65-5.0) is normal.

I know it has to do with the adrenal glands and maybe that's why I feel anxious all the time, thirsty and urinate frequently.

Have you had an MRI of the Adrenal Glands? If anything, this is good news! If there is a malfunction of your adrenals, it could explain ALOT if not all of your problems. Adrenal fatiuge and malfuction cause high HR, inability to handle stress causing EXTREME anxiousness and stress, inabilty to control temp. regulation, hormonal malfunction...I could go on and on. If it is the adnenals, your going to feel better with treatment....

My doctors were hoping it was my adrenals but, all tests came back normal. I hope this is the answer for you and you are on your way to recovery!

I think the breathing problems are definately caused by the HR. My BB helps bring my HR down and I notice that I am not quite as short of breath. I also find that on very difficult days we breath harder, looking for that deeper breath to fill our lungs. This makes my muscles sore the next day as they have had to work harder. Its possible the muscles are just overworked and sore ALL THE TIME because its such a struggle to breath. Maybe look into some yoga or streaching to help the muscles relax??

I remember going into the room, the nurse put versed and Demerol in my IV, then I must have fell a sleep or something, then they woke me up during the procedure to pace my heart, I felt my heart racing, and the Dr. was asking me questions, then I fell back to sleep, then I remember waking up, they took me out to this room where I stayed for several hours, normally you get to home a few hours upon awaking, but the Dr. accidently cut my artery, so they didn't wanted me to get up and move around right away, but I felt good when I woke up, it's nothing to be nervous about. I was nervous the night before, but after having the EP Study done, I got nervous for nothing. My fear is, I am afraid of being put to sleep, but you don't even know your being put to sleep. And the procedure is painless. In fact, after waking up, was the best I had felt in a long time.

What did the EP study show and did it have any impact on your treatment? Thanks for the reply!

WELCOME and WOW I cannot get over the C section with NO anesthesia working??? YIKES!!! That alone would be so traumatic..your nervous system would be sooo affected.

Stay with us... as you learn. I am not sure about the whole POTS thingy either. My HR/BP goes whacky while sitting..and gets bad enough at times that I do not have to stand for the spacy..dizzy..going to pass out feeling occurs. It may or may not get worse when standing..but when its BAD.. I can no longer even STAND. They are still trying to figure me out.

just wanted to say HI... and offer you a BIG HUG!!

Jan

Yes, it was pretty horrific. They kept doing to "pinch" test and I kept saying "I can feel that, its not working" I could move my legs...everything. After 45min. they finally said they had to procede, I was giving the option of a general but I didn't want to hurt the twins. With the first cut I nearly jumped off the table! They had to have someone lay on my legs! My OB was great and got them both out in 3 minutes after he got the insisions done. Once they were out and I could hear them cry I said"PUSH THE DRUGS!" It was worth knowing my babies were fine and the video my hubby took of me later in the room was priceless! Talk about having every narcotic known to man on board!

So sorry you have had YEARS of problems without a difinitive diagnosis. I hope you get answers also....

I am not up to reading all the threads so I apologize if I'm repeating something someone else has already said.....

Regarding the TTT and your insurance claiming it is "experimental". If you feel you need the TTT and you believe you have POTS you can try sending your insurance company some information.

If you are interested, PM me and I will see if I can help you appeal that decision.

Oh thank you! I see my GP doc today. I plan on having her send in an appeal. The ins. will cover TTT for fainting eval. ONLY...so maybe she can submit it under that. I am SO sick of seeing doctors!