Tachycardia Without Orthostasis, But Lots Of Dysautonomia, I'm A Newbie

[Austin]

Hello everyone...

I was just diagnosed with Dysautonomia and they said I had partial POTS. My HR goes way up from sitting to standing, but my Blood pressure doesn't really change much. I did however have them stop the Isoprel infusion during the Tilt Table test as I felt like my heart was gonna jump out of my chest and got all panicky.

I have been searching for almost a year now to find out what is wrong with me and things keep getting worse. I was just started on a beta blocker and my resting HR is now 80's and it goes to 110 or so when rising, but prior to this it would be like 80's and go to 160, so it looks like it's working to control the upper HR limits.

More than the HR issue, I have many other symptoms and I don't know what to do as they are getting worse as time goes by.

Because the Blood pressure stays stable, the Dr. decided not to give me Florienf, but did say to increase my salt intake.

Again, my bigger issues are the following:

Nervousness that comes out as slight tremors in my Arms and Hands. I don't care about the tremors, but it's the anxiety that makes it worse. It seems like if I strain myself using any major muscle groups, I begin to shake, but also become very anxious.

I have been taking Klonopin for this, but the Nervousness feeling seems to be getting worse as of lately and I don't know what to make of it.

I'm also having bad Vertigo. It's not so much the room is spinning, but I feel like I'm gonna fall out of my chair sometimes and feel like I'm on a boat much of the time. Interestingly, if I get up and walk around, this symptom seems to let up a bit.

I had the chills real bad and a low body temp most of the winter, but now with the weather turning warm, it seems like I can't tolerate the heat and it's not even summer yet. I sweat just sitting outside in the shade on these warm days we've been having like there is no tomorrow. The sweat pours out of my head and my T-shirts get soaked, then I start to get the tremors.

When the Vertigo finally goes away, then it turns into a headache sometimes and I've never had problems with headaches in my life.

I'm a single Dad and I have an 8 year old son who is my life. I have been out on disability for the last 6 mos. and I'm scared to death that I'm going to die from all of this. My quality of life is Zero right now and I feel so bad as I can't do the things with my son that I have always dreamed of. I'm struggling financially right now because of this. My X wife is not helping either. She condemns me for not pushing myself, etc., but when I go out, the loud noises and bright lights make everything worse.

I am really getting Depressed over this stuff and my Dr. put me on a few different Antidepressants, but they all seemed to aggravate everything. I have never been med sensitive in my life.

I went and saw a Neurologist and he is trying to get approval to try some IVIG on me. He thinks that much of this is perhaps an autoimmune problem and that may body is attacking itself. He did some blood work to confirm this, something with IGG and IGM blood tests that I don't understand.

Can anyone relate to any of this ? I have read through many posts before making my first post and it seems most of you have POTS, and although I have the tachycardia and not the BP problems, I don't know what to make of any of this, except to say I feel so alone.

I hope someone can shed some light on all of this for me and I would love suggestions as to what to do with all of this.

Take care everyone,

Austin

[janiedelite]

Hi Austin,

I can feel your anxiety through your post. I started having orthostatic tachycardia in 2006 and my symptoms really got worse last year. My BP rises on standing or stays somewhat the same. I'm easily too hot or too cold also. I have tremors, which get worse with any kind of stress. I have exaggerated anxiety responses too. I also have dizziness and feel like I'm moving when I'm not. Nausea, sensitivity to light, abdominal pain, skin pain, a long list....

I went to Mayo earlier this year and was fully tested. They found I have dysautonomia, small fiber neuropathy, and POTS. The best part about going to Mayo was I finally got to talk with a doctor who sees patients like us all the time. He was so encouraging! POTS is not normally a degenerative, progressive condition. Most people do have symptoms that get worse and better at times though. Some people call these worse times "flares" or "episodes." Sometimes these flares last for a few hours, or a few days, or months. I was practically bedbound from summer 2008 to 1/09 because of the fatigue, chest pain, nausea, etc. I have had flares over the past few months, but they last for a day or a few weeks since I've implemented the Mayo doc's suggestions. In between, I rest a lot but can drive, clean, cook, go for walks, visit people... I can't tolerate Florinef, but just because your BP is stable doesn't mean you wouldn't benefit.

Are you seeing someone who really know a lot about dysautonomia? There is a directory on the Dinet homepage of docs in various states who specialize in treating dysautonomia.

My neurologist and PCP couldn't find any diagnostic facilities or docs for dysautonomia in the Pacific Northwest, where I live, so we traveled to Mayo. It was the best thing we've done. There are other places/docs that might suit you better it's just what was closest for us.

Suggestions Mayo made that have helped me: abdominal and leg compression, high salt diet, high fluid intake, mild exercise regularly (I walk), stay cool in warm months, don't get dehydrated, and have hope! Some people with POTS/dysautonomia even recover fully! If not, most of us learn to manage our symptoms and adjust our expectations and still enjoy our lives for the most part. I can't work anymore, though, and receive long-term disability payments.

Do you have parents/siblings/friends who can help you? You must feel so overwhelmed, especially when doctors don't really know what to do for you. Keep looking for answers. There are many medications and treatments out there that you haven't tried, you just have to get to the right doctor who will help you find what works for you. Take care, Janie

[firewatcher]

Austin, I don't have hypotension either; I usually have the opposite when upright: hypertension! Go figure. When I had my bad crash, I would shake uncontrollably and the vertigo that you describe is EXACTLY like I described it to my doc, a slow pitching roll...like on a boat. You are not alone, or crazy, and it probably WILL get better. I know you are scared. We all either are or were, and depending on the state we are in that can change from day to day. My body temp is constantly low, it reads at least a degree lower than normal all day, but I run a slight fever at night. I'm the headache diva here. I have a headache that I've had every day for at least three years! No cause has been found as of yet and it is NOT a migraine. I am actually on Klonopin for the headache. Occasionally "the headache" will be punctuated by a "please let me die" migraine. I also have boys: 8 and soon to be 10.

I agree with the compression, for you it would be compression shorts like bikers wear.

Hang on. Welcome to the forum. Ask every question you can think of, use the search forum function (priceless!) and make sure you check out the homepage! I'm sorry that you are here, but glad you found us.

Peace and healing to you!

[flop]

Hi Austin,

welcome to the DINET family. Sorry that you have a need to join our group but I hope you can find answers to many of your questions on here and the DINET website.

You said you have "partial POTS". The diagnosis of POTS is based purely on the change in heart rate from lying to upright. If your heart rate increases by 30 beats/minute or increases to more than 120/min on being upright then you meet the criteria for POTS. There isn't a blood pressure component to the diagnostic criteria for POTS (but many doctors mistakenly think you have to drop your BP, or some think you mustn't drop your BP - both groups are wrong).

From meeting others with POTS and mostly from reading on the forum I have learnt that for people with POTS, when standing up our BP can: a) go down b ) stay the same c) go up or d) do something different each day of the week.

Keep reading and asking questions, as you learn more about dysautonomia you can start to take some control over your symptoms and learn how to get the most out of life.

Flop

[pat57]

Austin,

I just want to say good luck, and try to take life on one day at a time.

[ramakentesh]

The postural/exersion anxiety is one of the worst symptoms when my POTS is bad. I get boutes of POTS. When its at its worst I get anxiety as a symptom. As I slowly improve, it just becomes body tremors and dizziness/lightheadedness.

Im a 31 year old male.

For me the only helpful treatment I have found for it was kava once and beta blockers (inderal). The problem for me being that beta blockers make my dizziness/brain fog worse. So I basically dont walk around much or sit up much when im taking beta blockers and then when the anxiety / jitteriness subsides, I then wean off the Betablocker and work on the other issues (the dizziness).

Depending on which opinion you believe, the cause of this symptom is either the primary problem or - more likely - a reflex response to impaired blood flow to your heart and brain (and carotid baroreceptors). You will notice that when you feel like this your hands and feet will become cold and possibly sweaty.

If its the primary problem the theory goes that you have impaired reuptake of norepinephrine which is theorised to eventually result in cerebral vasoconstriction and POTS. This theory doesnt explain blood pooling, and it is now seems likely that all forms of POTS have pooling in various places.

In the reflex theory the epinephrine/norepinephrine is a response to blood pooling everywhere, in your extremities or purely in your gut and pelvic regions.

Id read these articles and they might give you a good understanding of the current views on POTS and neurovascular disorders:

http://www.nymc.edu/fhp/centers/syncope/or...intolerance.htm

http://emedicine.medscape.com/article/902155-overview

http://knol.google.com/k/blair/postural-ta...z0Lsji-N/oPFBfQ

http://www.nymc.edu/fhp/centers/syncope/ci...ots_and_CFS.htm

[runningshoe]

Hi

I just wanted to add that i have pots and hypertension. I have had high bp for almost ten years and pots for two. This doesn't mean I don't have low bp days - I do but I also have high ones like today 140 over 100. Ugh. I have 3 kids and work part time. I could not work full time and be remontely funcitonal. But I am busy and you will get back to doing some things again. I have to pick and choose what I can do in a day. Some days I can work, cook, walk the dog, do the homework hours etc. Other days I can't do much. You will find a balance. Hang in there.

[ramakentesh]

Some researchers believe that the high blood pressure in POTS can be a bit of a false high. While arterial pressure may have increased, blood flow through the carotids is also significantly reduced. It reads as high blood pressure, but because of reduced blood supply to the brain its actually a response to low blood supply.