Pots Dysautonomia??

[buddysmom1]

I have been struggling for about 8 months now with different symptoms and different diagnosis, finally I was dx with Pots but I never faint. My tilt table tests I have had three have all been different one MD said POTS another said dysautonomia. The other one said normal tilt test. I have so many symptoms mostly tachycardia when I stand my heart rate is in the high 40's now that I am on clonodine patch and then it goes way up to over 100. Before the patch my heart rate was in the 80's lying down and over 130 with standing. I used to play tennis five days a week I was so active now I can barely make it around the block without becoming short of breath, all my heart tests came back normal. I have tremors most of the day and the worse thing is this constant pressure in my ears its like every five minutes being on an airplane then landing then back on the airplane. My temp regulation is so off I am freezing one minute then hot the next. I get inadvertant movements when I try to sleep at night in my legs and arms just little jerking movements. I sometimes get twitching of my eyes when I go to sleep that lasts a while. This all is scaring me I was always so healthy up till now, now I feel as though I am going to die. I take the clonodine patch and they also put me on zoloft which I cannot take more then 12.5 mg when I tried to increase it i really got depressed. I have so many strange symptoms. I can't take too many meds anymore I am so sensitive to them is this ever going to get better I need my life back.

[mtgardner]

Welcome to the forum and sorry to hear you are having so many problems.  I am glad you are having testing soon and hopefully they can give you more answers and a course of action that will be helpful.

You will find those on this forum very helpful and ready to share information.  I have gotten lots of good information here.

In case you haven't been to the dinet site they have a lot of articles to read.  I found things to avoid and things that help particularly helpful.

http://www.dinet.org/

I am glad you found this forum as there is a lot of combined experience here so you don't have to reinvent the wheel!  Marie

[Heiferly]

Vanderbilt is one of the (select few) hospitals in the US that has a fully outfitted autonomic testing clinic.  You should be able to get any and all testing that is needed there, without having to travel to MN (Mayo) or Cleveland (Cleveland Clinic or Case) or to one of the hospitals in NY.  I hope everything goes smoothly with your appointment there, and we'll be looking forward to hearing back from you about how it went!  If you have any questions about specific tests, please let us know.

Swimming can be a real bugaboo for those with dysautonomia because being submerged in warm water causes the blood vessels to dilate.  People often end up swimming in therapy pools, which are often heated (at least somewhat) or outdoors in naturally sun-heated waters.  Access to an Olympic training pool (where high-level athletes train) can be helpful because the water is kept quite cold for them but many find that cold of water almost intolerable (especially if your dysautonomia is such that your thermoregulation isn't very good).  So although water makes for gentle exercise, it ends up not always being a very good choice for many with dysautonomia.  If your doctor does recommend water therapy, make SURE there is a lifeguard on duty in addition to at least one other able-bodied adult in presence *at all times* in case of syncope and realize that while your buoyancy will make it easier to get you to the surface, it is still difficult to actually remove a person from the pool entirely and this may be required especially if you have been aspirating water while under.  Make certain that the lifeguard understands the importance of elevating your feet to return maximal perfusion to your most vital organs.

As for which meds are best, that's the million dollar question, and unfortunately the answer is different for each of us.  :-/  Stick with us here and slowly you will learn more, get ideas of what may work for you and what doesn't, hopefully make some friends along the way, and get your questions answered to the best of our abilities.  Feel free to PM (private message) me at any time.  I'm one of the three community leaders here, and you can send me a private message by hovering your cursor over my username (Heiferly) in blue at the top of the message and clicking on "Send Message" in the dropdown menu that appears.  "Leave a Note" gives you the option to put a 'sticky note' that anyone can see on my profile page, but the PMs can only be seen by the sender and myself.

Nice to meet you, welcome to the community, and Happy New Year!
Heiferly.

[Heiferly]

Drugs which regulate serotonin, norepinephrine, and other neurotransmitters in the body which may primarily be classified as "antidepressants" are also used in medicine for MANY other purposes from certain types of pain syndromes, to the cataplexy (paralysis) attacks that accompany some forms of narcolepsy, to overnight incontinence, to dysautonomia, and many, many more things ... too many to list here.  The thing to realize is that these neurotransmitters control MUCH more than merely mood!!  People with dysautonomia are most frequently put on SSRI or SNRI medications not for depression, but to manage the symptoms of their dysautonomia.  I hope that helps answer your question.

[buddysmom1]

Thankyou for your comments how is Vanderbelt I do have an appt with them in March. Mayo is so far away from me and I heard the Mayo in Florida is not that good, I live in Florida. I am worried there are not many doctors familar with this. I worry about my symptoms that it is more then Just Pots, how can Pots cause so many symptoms UGH. I try to walk each day but it is difficult I want to go swimming but every time I go in the pool as soon as i get out I feel faint this is the only time I feel faint I feel as though all the blood leaves my head and goes to my feet. I would love to have hope of playing tennis again as that was my life and social life. I stopped working I stopped everything except exisiting now, can anyone tell me what meds work?? I think the clonodine has really helped my blood pressure but not as much my pulse and I can not take Beta Blockers I feel the beta blockers brought this all on. I get so sick now when I take the beta blockers and I was on them for years for years not related to pots. OK thanks for everyone who answered and Happy New year and I hope we can all have a better 2011.

[MeaganM8124]

POTS IS dysautonomia and is diagnosed by a 30 bmp increase in heart rate when standing.  All of your symptoms are related to POTS.  The first thing you should do is find a doctor who specializes in POTS.  You should have autonomic testing.  Most people here have been to a Mayo clinic since they are experts and have the testing facilities.  It sounds like you have doctors that don't really know how to deal with it because there are many options out there to help get your life back especially if you have the POTS where you don't faint like I do.  I'm not sure why they gave you an antidepressant unless they think you are just depressed and don't understand that not having a life is depressing.  Once you get the POTS under control, you're life and depression will improve.  There are other medications out there if the patch is not working for you that can control your heart rate and decrease the shortness of breath.  Also, a specialized doctor will tell you to keep hydrated by drinking sports drinks or lots of water and probably eat more salt.  Eating small meals is another suggestion.  All of these things have helped me control my POTS most of the time and has helped me live a somewhat normal life.  I hope this helps.  Hang in there!

[CHRISTYDRAKE]

Sorry you are not feeling well and have so many symptoms.  My son was also very athletic, played select soccer year round an baseball in the the spring and fall.  He now rarely leaves the house.  He has POTS, gastroparesis, small fiber neuropathy and restless leg syndrome.

Many of the symptoms you listed he has had or still has.  He used to get frequent 'hot spells' but they subsided once he started on doxepin. He still has jerky movements, including restless leg syndrome that they found during a sleep study.

He has constant tremors, his hands always shake but he doesn't pay much attention to it unless his friends joke with him about not being able to hold his xbox controller still.

It took us a lot of time with trial and error to see which medication worked best.  The doxepin has helped the most with many of his symptoms but we haven't found anything to help his nausea yet.  So don't be discouraged, it takes time to find the right medication and the right dose to be the most effective.  

Christy

[beema36]

Buddysmom, Welcome to.the forum. My heart goes out to you. Just this afternoon I told my husband that I just want my life back. My diagnosis is Pots, Ncs, OI and ms. My body is so out of.whack I never know what to expect.
This is a good place for you to come. There are so many smart and caring people here I know you will find.the support you need.
Happy New Year!
Beema