How to deal with having POTS? Help please

[queenofhearts316]

Hi everyone, I am only 22 and while the Doctors here are unfamiliar I have the symptoms of Pots.My heart rate increases like crazy upon standing or sometimes bending over.I get dizzy and out of breath from doing nothing.I am tired and pale.My symptoms get a lot worse near my period.I have not been to work in months sadly but I am done feeling defeated by my health.Do any of you know anything that decreases symptoms other than medication? They won't give me beta blockers because sometimes my heart rate drops below 50.I want to be able to go out and live my life.How do you guys cope what can I do to feel better? Thanks in advance!

[Heiferly]

I think that I have always had some small level of autonomic dysfunction since early childhood ... there were signs such as severe exercise intolerance and occasional syncope. However, I still consider myself "sudden onset" because there is an exact day on the calendar that I can pinpoint when my symptoms went from "my normal" to "holy cramole, there is something horribly wrong here!" That day for me was 17 Aug 2006.

As far as what treatments help with POTS, you may want to take a look at this document we generated for this community, it should give you some rough ideas:  

http://www.medhelp.org/tags/health_page/24598/POTS-Dysautonomia/Dysautonomia-Treatments?hp_id=171

That page is one that I need to get in and update, but the only info on there that I know for sure is outdated off the top of my head is that SSRI/SNRI medications have fallen out of favor after some clinical trials showing they help with depression from dysautonomia but not with the autonomic dysfunction itself. However, opinions on this are still mixed within the medical community, so I'm not going to remove them at this point.

Looking toward non-pharmaceutical treatments, there are a wide range of things that you can try to help get you back on your feet again:

-increased salt intake
-increased water intake
-compression hosiery (thigh high preferably) and abdominal compression
-physical counter-maneuvers
-gentle exercise of the legs (recumbent bike on low setting, swimming)
-taking time to slowly change position when standing from lying down or bending over
-cooling garments for heat intolerance
-caffeine in moderation helps some people, but pay attention to your response to it and avoid it if it makes your symptoms worse

If you want more information on compression hosiery, there are a couple of links here on MedHelp that I can send along.

I will be completely honest with you about how I cope with (generalized dysautonomia in my case, but similar to POTS). I have found ways to muddle through leisure activities that I really don't want to miss out on, but I have not been back to work since 2006 when this started for me. Do realize, though, that the majority of POTS patients are able to work or attend school with proper treatment, so don't let my experience discourage you. When it comes to leisure activities, I use compression hosiery, cooling garments, and salt/water loading to help me get through, but I also know that inevitably there will be a crash after I push myself through something like that and I set several days aside afterward to just rest and recuperate. The other thing that I did when I was just starting out with this stuff and didn't have one of my own, is renting a wheelchair when I went places where lots of walking was involved. Most amusement parks, for example, have both manual and power chairs for rent.  

[queenofhearts316]

Thank you again! I will research that Dr. How do you cope with pots? Sometimes I get so frustrated. I am trying to figure out a way I can get back to work or even go on my annual family vacation. Do you have any secrets for anything that helps at all?? Also if you don't mind me asking..did your symptoms come on randomly?

[Heiferly]

Satish R. Raj, MD, MSCI, FACC
Associate Professor of Cardiovascular Medicine
University of Calgary
Calgary, Canada

The aforementioned Dr. Raj is a highly published researcher and clinician in autonomic dysfunction. I can point you toward some of his publications if you want help finding them, and can answer questions if you have difficulty understanding any of the medical jargon. He served for a number of years at the autonomic clinic at Vanderbilt in the US, but returned to Calgary last year to treat patients there. I'm still looking for the other one I know of ... I'll update you if/when I find it. On the other hand, if you're in a hurry, call his office ... I'm 99% sure they can tell you where else in Canada can do the testing and diagnosis and treatment planning.

Glad to know that I've been helpful to you. Having lived with dysautonomia for nearly a decade now, I understand what a day-to-day struggle it is!

[queenofhearts316]

Thanks so much..you're very kind and having someone who truely gets it helps more than you know.

[Heiferly]

There are two hospitals in Canada that do autonomic testing, if I recall correctly. I will find you the names and get back to you. Take care!

(Oh, as for exercise, I can't do stairs either. They had me do recumbent bike on the lowest setting in cardiac rehab. That or swimming tend to be better choices for people with autonomic dysfunction.)

[queenofhearts316]

Thank you both so much for your replies and care. Caluso I never thought about it like that before.The website was helpful and I am requesting more tests to try to figure out what caused it but the doctors here are clueless. I am sorry to hear about your son.How is he coping?

Heiferly thank you but I live in Canada..only one Dr I have seen has even heard of Pots. I am increasing my water and salt.

I read that increasing excercise can help..but I can barely walk up a set of stairs.

[Heiferly]

I'm so sorry to hear of your suffering. I agree with Caluso that you need to get down to the root cause of your POTS, as POTS is merely a description of a syndrome, not a specific disease or disorder. If you get the diagnosis for the specific disease or disorder you have, treatment can be much more focused and effective. That being said, I see you mention that the doctors you see don't have much expertise in treating/diagnosing POTS. I would recommend that you seek out some different doctors until you find someone knowledgable enough to work through this with you. If you need names of possible docs that might be able to help you, PM me what city and state you'd be looking near, and I'll do my best to give you a few referrals. Dysautonomia specialists are not as common in some areas of the US as others, unfortunately, so sometimes people have to work with a less knowledgable local doc who is eager to research and learn, or have to travel greater distances to consult a specialist.

As for non-pharmaceutical helpers, I would say look into the following things and discuss them with your physicians:

-Increasing your salt and fluid intake
-Wearing compression garments, particularly thigh- or waist-high graded compression stockings of at least 20-30mmHg and abdominal compression such as Spanx
-Practicing "counter maneuvers" when you feel lightheaded or faint:

http://www.mc.vanderbilt.edu/root/vumc.php?site=adc&doc=38908

-Being careful to slowly change position, rather than rapidly bending over or standing up
-Exercise your leg muscles to promote better skeletal-muscle-return of blood back from the legs to the heart

[Caluso]

I'm so sorry you are going through this.  My 18 year old son also has pots, though as near as I can tell, much different than what others are experiencing.  The first best step you can take is to find out what is causing your pots, and believe me, something is! For my son it seem to be serious food sensitivities.  For others it might be Chronic Fatigue Syndrome or sjogen syndrome. If you treat the underlying problem, you stand a great chance of improving your condition.  I'm including a link to a really helpful site that can get you started on your search.  My thoughts and prayers are with you.  Blessings, Caluso
http://stoppotsvirginia.blogspot.com/2012/04/what-is-causing-your-pots-and-why-it-is.html#.VM72s1WJOuY